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Mesh Removal, Uncategorized

Surgical Removal of Mesh

Surgical removal of TVT mesh is possible, but it is not without risks.  There appear to be few surgeons in the UK who are experienced in removal techniques: many surgeons can insert TVT but there seems to be a lack of skilled surgeons with the expertise to perform tape removal.  Surgical removal is a much more complex intra-operative procedure compared with TVT placement and should only be carried out by surgeons experienced in mesh removal.

Surgeons may recommend tape ‘division’ (cutting the tape under the urethra) or partial removal of a portion of the tape (eg removing a section of tape under the urethra) as a form of conservative management in the hope that this will resolve problems with voiding, pain, or erosion.

A team in France carried out a study which was published in 2010 and assessed whether full removal is technically possible and what were the results on the patient’s condition.   Full mesh removal (resection) was carried out on 38 patients using keyhole surgery (laparoscopic) techniques where possible.

The study concluded that complete laparoscopic resection of TVT is “safe and technically feasible”. It notes that in women who have continuing disabling symptoms after conservative management, doctors must be aware that a complete resection can help resolve the symptoms.

“TVT is still considered the primary surgical choice for female SUI [stress urinary incontinence]. Although TVT offers an effective SUI treatment, it has significant associations with post-operative complications, leading (in specific cases) to a radical surgical management after the failure of first-line treatment. Complete laparoscopic resection of TVT is safe and technically feasible and can help resolve bothersome symptoms. However, women should be warned of the risk of recurrent incontinence.”

Read Article: Laparoscopic Surgical Complete Sling Resection for Tension-Free Vaginal Tape–Related Complications Refractory to First-Line Conservative Management: A Single-Centre Experience, European Urology, Volume 58, issue 2, pages e19-e28, August 2010

View associated video:  Complete Laparoscopic Resection Of Tension-Free Vaginal Tape (You Tube)

View a video showing laparoscopic removal of TVT performed by surgeon Natalia Price at the John Radcliffe Hospital, Oxford UK: http://www.youtube.com/watch?v=OqaJ2fRZ3YY

If you are offered mesh removal by a surgeon, make sure that they are experienced and have carried out the procedure before.  Ask them how many removals they have undertaken and what the outcomes were.  Ask them how they will perform the removal and why - vaginally, abdominally, laparoscopically? Make sure you are fully aware of the risks before you undertake removal surgery.

Commens now closed on this page.  Please go to Discussion page and add comments. Thank you.

Discussion

952 thoughts on “Surgical Removal of Mesh

  1. I have had the TVT-O operation done in 2009 and have suffered non stop with problems. I have constant pain and inflammation, pain in lower back, legs and constant heavy feeling in lower abdominal area not to mention constant pain when making love. Sometimes it feels that I have a tampon inserted wrongly the feeling is heavy and painful. I got the tape cut last year and that relived some of the pain in my left leg but I continue to suffer on a daily basis. I have seen a consultant who is going to do a laparoscopy and an MRI scan. I am so frightened of further operations and scared to get the tape removed for fear of more complications and problems. ANY ONE CONSIDERING THIS OP, DONOT RISK YOUR HEALTH I would rather wet myself than put up with the continual suffering caused by this op.

    Posted by Amanda M | August 17, 2012, 12:32 pm
  2. Hi Amanda I’ve just had my Tvt removed, go and see Miss Natalia Price at the manor in Oxford it’s part of the nuffield health group I saw her private then got referred back to the nhs and had the operation done at the John Radcliffe in Oxford, I’m 6 weeks post op so far so good I’ll never be how I was pre Tvt but I’m a hole lot better than with it! Don’t even think about letting anyone near you who has’nt got a great deal of experience, pay the money for the private consultation!!! I’m going for my check up I’m doing that private too! It’s a 5 hour drive but well worth it! I can’t tell you what a relief It is to have that stuff out of my body. I wish you well!! you can trust Natalie she’s an angel.

    Good Luck

    Karen X

    Posted by karen | August 20, 2012, 12:59 pm
  3. Hi Amanda

    I can understand where you are coming from, ie. being nervous of further surgery and more complications. That is why it is so important that any surgeons offering to remove your mesh are really experienced with this procedure. Some women get only partial relief from syptoms with partial removal of the tape.

    To my knowledge Natalia Price is very experienced with removing TVTs but I don’t know if she has removed any TVT-Os, and so I would check with her secretary first before arranging an appointment. Suzy (Sohier) El-Neil at University College Hosiptal, London, is another experienced surgeon who appears to have removed TOTs so she may be worth contacting too. In Scotland, a surgeon called Karen Guerrero, appears to be experienced in removing mesh. Every woman’s medical case is different so please ask lots of questions and make your own judgments when considering surgery.

    The MRI may help identify some medical problems (eg urethral diverticulum) but I understand that it is not so good at identifying the location of the tape and that ultrasound is much better. Unfortunately, it is not usually offered because there are not many clinicians who are experienced at interpreting the images for this purpose. However, I do know of some women in the UK who had these (translabial) ultrasounds to help identify problems with the tape.

    Posted by tvtinfo | August 25, 2012, 6:27 pm
  4. Hi, I have been reading so many comments tonight about the complications with having a TVT and how to have it removed. I am overwhelmed with the amount of people that are or have had problems after having this procedure done. I had my TVT op just over two years ago and have suffered endless urine infections , bloatiness and extreme discomfort … I even have to self cathatorise as well, but not as often as in the beginning… The pain is awful and is ruining my life let alone my marriage.
    Although the incontinuance was awful this pain is much worse and would like it taken out but my Gp thinks differently. I really don’t think that he knows much about this TVT in the first place.
    I have read in a previous post about a lady paying privately in Oxford (which is very close to me) could I have more details as I would be willing to pay now just to get this sorted.
    Or if anyone else could recommend a consultant as the last thing I need now is someone not knowing what they are doing and being in a worse place than I am already.
    Thanks
    Amanda

    Posted by Amanda L | December 31, 2012, 4:19 am
  5. Hi Amanda L

    So sorry to hear you have been having problems with your TVT and like so many others, finding it difficult to get support from your GP who does not really know much about the implant – they are generalists after all. You need to emphasise how much these pains/discomfort, infections and catheterising are affecting your life. Catheterising is not a pleasant or comfortable thing to do, to say the least, and predisposes you to infections plus it is not something which most people contemplated doing for the rest of their lives after such a “simple” procedure!

    The consultant in Oxford who is experienced with mesh complications is called Natalia Price. If you are having problems with this TVT then your GP may be prepared to refer you to Ms Price on the NHS – why not ask him again. Ms Price is based at the John Radcliffe hospital and her NHS secretary is Sandra Gold – tel 01865 221625. However, you should know that there is a chance that you may see someone on the team (rather than Miss P) if you go through the NHS but you could ask the secretary about this. If you would prefer to see Miss Price privately for a consulation, you can contact Ms Price’s private secretary, Tracey Shepherd on 01865 851105 for a private consultation at the Nuffied Manor Hospital nearby.

    Please feel free to email me at tvtinfo@yahoo.co.uk if you want any more information.

    Posted by tvtinfo | December 31, 2012, 1:40 pm
  6. Hi Amanda, sorry to hear you are having such a bad time with the tvt. I know where you are coming from, endless pain and the ruin of your marriage sounds familier! It’s 6 months since i had my the tvt removed by Natalie Price, I’m not the woman I was, never will be, but at least I have a life back! You can’t expect a miracle, having a tvt removed is a very complex surgery, but the alternative, living with tvt, as far as I was concerned was not an option, what life is it when you are in constant pain. I wish I had never had a tvt fitted, but I can’t undo that, It’s gone now, I can try and heal as best as pos, get back what I can of my life, which otherwise I feel I would not of been able too. I think you have to make the decision, what’s best for you? see a consultant, but do that part private, take your time, get the facts! don’t rush in. I had a great deal of pre-existing surgery which has made my outcome not as good as perhaps another patients would be, but still, I would rather be where I am.
    Wishing you good luck
    Karen X

    Posted by Karen | January 12, 2013, 9:46 am
  7. i totally agree with you i had my opdec2007 only just found out the mesh has bin giving me pain ever since already had 2 ops 2 remove it without succes awaiting another op.its ruiend my life i to wish id put up with leaking.dont do it ladies im now living in pain @hope that someone can get the mesh out without causing me any more damage lisa bristol2013

    Posted by lisa stack | January 13, 2013, 9:35 pm
  8. Hi Lisa,
    I’m so sorry that you too feel like it has ruined your life… It’s something that unless you are dealing with it you have absolutely no idea how you are feeling…my husband is not so sympathetic and doesn’t understand the pain I am in, I suppose this has ruined our relationship. I am very nervous about having the tape removed as hearing all the other comments and yours this is not an easy operation .
    I hope you get sorted soon and without any more complications, always here if you want a chat….x

    Posted by Amanda L | January 13, 2013, 10:40 pm
  9. Hi,
    Thank you for your advice. I am waiting for an ultra sound at the beginning of Feb.
    Regardless I am going to pay privately and see Ms Price as I feel my pain is down to the tape.
    My new doctor doesn’t agree but that is not something I care about. I need this sorted with the best help possible.
    At this point any relief of the discomfort would be nice as it really is getting unbearable.
    I really hope that she will be able to help me .

    Posted by Amanda L | January 13, 2013, 10:45 pm
  10. Hello my name is Eunice and Ihave a tvt and had it put in 2005 and had nothing but pain , going to the bathroom more now than what I did before. Has anyone had it removed and have you had anymore problems ,,

    Posted by eunice | February 12, 2013, 4:12 pm
  11. Hello Eunice,

    Yes – I have had a successful removal by Natalia Price in Oxford and am 95% back to normal which is pretty good. It is a big operation but well worth it if you are suffering. You can find more information on this page. I am in touch with many women who have had removals: it’s a slow recovery process but I am so glad to be mesh free.

    Posted by Liz RH | February 13, 2013, 5:39 pm
  12. Is any of the women a military dept and did you have to pay anything out of your own pocket?

    Posted by Eunice | February 14, 2013, 9:14 am
  13. None operate a military department, no, as they are in NHS hospitals or private practice.
    Most women have paid something – perhaps an initial private consultation to get a quick indication of whether or not removal is suitable. In most cases, women have then requested referral onto the NHS waiting list to have the removal which is then paid for by the referring NHS authority. However, I know of two women who have not had that referral between NHS authorities and they have paid a crazy sum of money.

    Have you read the posts above yours as you will get some more information and insights.

    Other costs inevitably include travel and possibly hotels for partner.

    If you are outside the UK then it’s a completely different matter and private payment would be expected, I guess.

    Posted by Liz RH | February 14, 2013, 9:18 am
  14. Hi , I go to Natalia Price next Saturday. The consultation cost is £200 after that I will be referred by the NHS.
    You need to talk to someone who knows what they are doing, so paying this I know that I will be doing so and be getting the best advice possible.

    Posted by amanda L | February 14, 2013, 9:25 am
  15. Hello Amanda,
    You are in the hands of a wonderful urogynaecologist who will listen and has the skills to help. She is also lovely.

    Best wishes from a mesh-free ex-patient!

    Liz

    Posted by Liz RH | February 14, 2013, 9:29 am
  16. Hi Liz
    After reading all the good comments about her i’m sure I am. I wont deny though how nervous I am. If I need it taken out how will this effect me and for how long? Having three kids to run around for it’s going to be hard. If it doesnt need taking out then how am I to deal with this pain for the rest of my life? It’s driving me insane (can you tell) ?
    Thank you!
    Amanda L

    Posted by amanda L | February 14, 2013, 9:58 am
  17. Hi Amanda, yes – it’s scary as it’s a sizeable operation.
    Please do not opt for a partial removal if that is discussed as it seems (no research evidence but a lot of people’s experiences) that can be even worse than what you have now. Full removal ensures you are both free of the shrinking mesh and its hard edges, and also of the plastic which might give auto immune problems.

    If you would like my ‘diary’ post removal then do email me on lizrharris5@gmail.com – I live near Oxford and often visit women at the hospital when they have had the mesh removed, as we can at least share experiences!
    Best wishes, Liz

    Posted by Liz RH | February 14, 2013, 10:03 am
  18. I live in the UK right now for three years . And I am just having so much pain and going to the bathroom alot. I am going to see if I can get a referal to go and see that Dr.

    Posted by eunice | February 14, 2013, 11:25 am
  19. I have just had a full tvto removal this week carried out by Sohier El Neil (Suzi). She managed to remove all the mesh 9.5cm and the ends. I also had a hysterectomy at the same time.That terrible cutting burning pulling pain has now gone! Yes I have pain from the operation and have been a little unwell, but am very releaved and glad its out. Im not looking forward to being incontinent but would rather than than have the dreaded mesh in. Mine was fitted in Oct 2007 and I have had consistent bowel and gynae problems since then. I now believe the bowel problems were related to the mesh as well. Sohier is fantastic and very understanding. I trust her implicitly and would opt for any further surgery with her with full trust. There is help out there… love Lizzy

    Posted by Lizzy | February 16, 2013, 2:58 pm
  20. Hello Lizzy.well done on your successfull tape removal and I hope you continue to improve.

    Will all patients please note that Miss Natalia Price only removes TVT’s and not TVTO’s ot TOT’s. Sohier Elneil can remove all three, I have been operated on by Miss Elneil to remove my tape and I am very pleased with the results

    Ann B

    Posted by Ann Boni | February 17, 2013, 9:30 pm
  21. I am 4 months post removal of tvt and returned to work as midwife after 3 months. I can honestly say i wish i must have been mad and although i work in the same environment as the urogynaecologist that inserted and then removed the tape i am actively seeking a solicitor to make a formal complaint against the trust we both work in. i have returned to work to avoid losing my job entirely but realise now how much damage insertion and removal has caused and that i am on a slippery slope re any future i had planned. The debillitating and cruel pain suffered by myself and what appears to be a crazy amount of women- for whom this tape is absolutely toxic has to be stopped!! I truly thought removal would be the answer and the sheer relief afterwards carried me through what i can only describe as the worst time of my life-slowly recovering crawling around at home. Well enough is enough—-i stilll have to take constant pain relief to move around—have to go to bed straight after work or any physical activity—have constant back pain–urinary incontinence etc and am sick to death of people saying” my tape was fine”—its like saying i’m not asthmatic so why are you?? It,s because we are all different isn,t it???? so why keep doing a procedure that disables women—because thats where i,m heading!!! wish me luck because i know neither the doctor or manafacturer of the tape will admit wrong doing –so the responsibility must be placed elsewhere and i intend to search elsewhere!!! jo r

    Posted by josephine | March 1, 2013, 3:07 pm
  22. That is where I stand right now.. I have a Gynecare TVT and my doctor is telling me it is not my tvt , but I think I should know because it is my body.. He also is telling me everything I am reading on line and hear on the TV is a bunch of BS .. I am with you on all this whatever I can help with let me know.

    Eunice

    Posted by eunice | March 1, 2013, 3:25 pm
  23. Hi Jo,
    I am totally with you on this, someone has to take the blame.
    I am under Natalia Price to now have mine removed but it seems to have got into my bladder.
    I work part time but am ready to collapse by 6pm, so hard as I have 3 boys to run around after.
    I know that I could never work full time with this pain and lack of energy and have no desire to do anything.
    My life has been destroyed.
    I hope that you do get somewhere with this and hope that you will post any news.

    Good Luck
    Amanda L

    Posted by Amanda L | March 1, 2013, 7:08 pm
  24. I had mine put in 2005 and in 2008 I started to have all the problems again. Peeing every 15 to 20 minutes and pain in my tailbone , and in my belly. My bowels dont work right . I am still trying to get to see a Doctor that can help me with my problem, like I said all the doctors I have seen just kepts telling me it is not my TVT. I also have UTI 3 or 4 times a month, they just want to kept putting me on meds.

    Eunice

    Posted by eunice | March 1, 2013, 7:23 pm
  25. Josephine, you can make a formal complaint against the Trust without a solicitor – have a look a this page
    http://tvtinfo.wordpress.com/2012/03/25/making-a-complaint/ I think there’s advice in the Patient’s Association leaflet on what to put in your letter. It will take time to set it all out and you will need to state what you want to get out of the complaint.
    You can also get advice from a solicitor too at the same time. I would advise you to get your records first as things can go ‘missing’ later.
    You are very brave to face up to your surgeon if you are working in the same Trust but, as my GP pointed out, if you don’t complain, then nothing will improve for other women. I know of a few women who have complained and even gone as far as the Ombudsman in one case.
    Complaining or seeking legal redress is quite stressful as you will need to keep going over all your surgery, complications and poor aftercare and there is no guarantee of success. However, if none of us do anything about our treatment and the use of this TVT, then nothing will ever change.

    Posted by tvtinfo | March 2, 2013, 1:57 pm
  26. Hi Eunice

    You know your body better than anybody so keep on trying to find the answers. You need proper investigations, not just meds, to find out what is causing your problems and pain. Direct your doctor to some research on late complications of TVT as many GPs aren’t aware that TVT can cause problems many years after insertion. There is a chance it might be something not related but you need to rule it out for your own peace of mind. Keep on persisting with your doctors till you get answers.

    If everything you read and hear is “BS” then I don’t think the jurors would have awarded $11 million in damages this week to a lady in New Jersey with debilitating problems following insertion of Gynecare mesh (although not TVT but a product with similar properties)!

    Posted by tvtinfo | March 2, 2013, 2:01 pm
  27. Hi Amanda
    So pleased to hear you managed to see an expert but sorry to hear the mesh has got into your bladder. How did that get picked up, if you don’t mind me asking? Was it through cystoscopy (camera in bladder)?
    I really hope you don’t have to wait long for your removal surgery and everything goes well. Keep us all posted!

    Posted by tvtinfo | March 2, 2013, 2:07 pm
  28. Hi,

    I am so pleased that I went to see Natalia Price. She actually believed what I was telling her. Yes a cystoscopy picked that
    up but with all the urine infections it was clear to her that this had happened..
    I’m afraid that I will have a long wait for the op as I cannot afford to pay for any more treatment myself ..
    I just hope that having it removed does not cause me any more problems .

    Thanks
    Amanda L

    Posted by Amanda L | March 2, 2013, 3:44 pm
  29. Hi Amanda,
    Really pleased that Natalia has identified the truth, unlike so many other doctors. Yes – all those of us who have seen her have been incredibly relieved to find an answer to the agony that the mesh causes. She is not only aware but also very skilled at removal.
    How miserable for you that this mesh has gone into your bladder. I do hope that you dont have to wait too long before you can have removal. It must be particularly hard for you with 3 young children, and I hope that your partner understands and can support. This site is useful for partners to help them understand that we are not making up any of the pain and that it is shared by lots of other women.
    Take care,
    Liz

    Posted by Liz RH | March 2, 2013, 4:25 pm
  30. Hello Eunice,
    There is a lot on this site that gives you evidence to take to the doctor to show that your TVT is highly likely to be a cause of such misery.
    Two surgeons have been mentioned in these forums, Natalia Price (Oxford) and Sohier ElNeil (London). Both have been recommended by women who have had their mesh removed – mine was removed by Natalia but as you can see, she can only help with TVTs rather than TOTs/TVTOs. These are experts and therefore I would not suggest that you get an inexperienced doctor to get the mesh out – you need someone who knows what they are doing.
    Following on from Amanda’s posts, you can see that she visited Natalia today and has had an identification of her mesh problem. That is a good start at least and perhaps is something that would help you before deciding what to do next.

    Good luck,
    LIz

    Posted by Liz RH | March 2, 2013, 4:30 pm
  31. Hi Liz

    I am so glad that I have spoken to an expert and of course all you ladies that helped me get as far as I have right now …
    Unfortunately this mesh has also caused problems with my bowels as well so it looks like a long old haul but I am confident that I will get there.
    My only suggestion to all those who are looked at by your Gp’s as if you are going mad, is to go to them with all the information you have and Insist that you are referred to someone who is capable of understanding and removing these TVT’s
    Do not give up, as this is your life it is ruining.
    As to my partner Liz, well I think with all the rejection I have given him he has given up on me.. Something else for me to deal with but I must sort this out first .
    Thank you,
    Amanda L

    Posted by Amanda L | March 2, 2013, 4:41 pm
  32. I had TVT-O in 2006 and have had problems ever since, the main one being bloating. I KNOW it started directly after surgery as the surgeon 2 weeks to recover, and I had to call her and say “I cannot go back to work as I cannot reach my feet’ (not even realizing what I was saying).
    When I did get back to work, after the first hour I bloated to approx 3 months pregnant, 2nd hour 6 months pregnant, and 3 hour I looked as though I was about to birth triplets.
    I have been to every specialist available, had every test, all negative. Through the past 8 years I have fought and fought and stated over and over again that it IS the tape. Finally 4 weeks ago I was sent by a GYN to a TVT Guru, this Guru listened and heard me and offered to take out the middle section of the tape. But the GYN had found the problem by a simple statement (let me show you where the tape joins your body) and I almost screamed in agony on both sides. After 3 internals, I am in so much pain, I know I have to have these ends removed, yet the GYN and the Guru both say it is a huge surgery, and I have to know the risk that I could be left paralyzed from groin to knee. Right now, I cannot sleep, I dont know what to do, I know it has to come out, but I already have a probia of hospitals and after hearing this I am TERRIFIED. Can anyone please, please help me come to terms with this surgery.
    Eileen

    Posted by Eileen Armstrong | April 21, 2013, 9:30 pm
  33. Hello Eileen. I had a TOT fitted in November 2007. I suffered exactly the same. Terrible boating, constipation, swelling of my stomach, intense pain. I had numerous tests endoscopies, colonoscopies, barium enemas, CT scans, MRI scans but could not find the ’cause’ of the stomach problems. No-one related it to the tape at that time, although it all started within months of the tape being fitted. One year ago I started to experience excruciating pain deep inside my pelvis and groin pain and pains down my legs. I had my TOT removed 11 weeks ago by Sohier El Neil in London. She did advise me that it was probably not possible to remove the ends. However, I have been treated by my homeopath for 6 months prior to surgery and I honestly believe the remedies that she gave me helped with the inflammation. When Sohier started to remove the tape one ends she has advised me that one end came out the other she says she has removed most of it up to the bone. I am still recovering, and I must admit I am still in considerable pain, burning inflammation type pain inside my pelvis. I don’t know to what extent the recovery will be but I still feel it is better ‘out’ than in. I cannot work at the moment as I still feel very unwell, very exhausted. As I understand it Sohier El Neil based at the ULCH in London or Portland Hospital London (privately)is the only surgeon in the UK that will attempt to remove a TOT or a TVTO. I wish you well.

    Posted by Lizzy Blanch | April 22, 2013, 8:13 am
  34. Lizzy, I want to thank you so much for replying to me. I am sitting here crying because you are the only person who has validated me. All the medical doctors say it is impossible for it to be related to TVT and I am now considered Disabled because of Idiopathic Loading (unknown bloating). I even tried to get in one of the class suits to sue the tvt tape manufacturers but was told ‘I don’t think we can add you as we have never had anyone who bloats’.
    I lived the first 30 years of my life in England then, during a depression, a company came from Canada to England to recruit draughtsment, and for our son, we decided to emigrate, so I am now in Canada, but go home to NE England every 2 years as all my family is there, except for one son here.
    I do have some questions for you, if you don’t mind answering, and if you find them too personal, I shall understand that also.
    You mention a homeopath – I had never considered that approach but it sounds like you really found it helpful, I think I shall try it. Also you say 11 weeks after surgery you still feel unwell, was the recovery time mentioned when you arranged your surgery? You say you went to Sohia privately, can you let me know just how much it actually costs please as I am on my own and on a disability income and it is hard but not undoable I hope.
    This must be a major surgery Lizzy, is it? How did she get to the ends, all I read is that they can take out the middle but not the ends, and this surgeon here says make up your mind whether you want all or just the mid part of the tape out, because once the mid part is out, I would never find the ends again.
    I shall stop now because I know you are still unwell and I wish you well and want to thank you again for responding to me. If you are able to answer any of my questions I would be thrilled Lizzy.
    Take care
    Eileen

    Posted by Eileen Armstrong | April 22, 2013, 12:53 pm
  35. This is so true ‘things can go ‘missing’ later. I needed the manufacturers stickers off the tape (6 years after TVT-O), and asked the hospital for them. They searched and searched and could find nothing at all in my files. I managed to find the woman who had done my surgery (she retired shortly after doing it) and said ‘oh, there was a time when we did not have to keep manufacturers stickers and you were probably done during that time’. I even got the College of Family Pyscians and Surgeons involved, who in turn got an Advocate for Women’s Surgery involved, yet still nothing. The head Doctor of the hospital just had to write a letter stating she was 99% certain it was a Johnson and Johnson product.
    Eileen

    Posted by Eileen Armstrong | April 22, 2013, 1:24 pm
  36. My heart goes out to you Eileen and I could cry for you… God knows I’ve cried enough tears for myself and others. They don’t seem to recognise the bloating, that’s because bowel problems are seen by different specialists and they are just not putting the information together. I have found another lady where I live and she is having bloating and numerous tests as well. It only started after the tape was put in. She is the only ‘other’ one I know at the moment, but if everyone registers their symptoms the pattern must be seen eventually. My homeopath… is A Tree of Life Practitioner. She is a little bit different to conventional homeopaths but I know she has changed things for me. The only thing I could do is give you her e mail address, e mail her and tell her you have the same problem as me. I know we are all different and she may not be able to help from so far away but it may be worth a try to try some of the remedies that I have taken. One I take for inflammation (which may or may not help you) is called Traumeel. I am not able to prescribe or anything like that but I do know that taking the remedies she prescribed for helped bring the inflammation down to a level I could cope with and the bloating went down. It may be worth a try. It probably cost me somewhere around £200 each time I saw her and the remedies only last around 8 weeks. I see her every few months, but maybe over a period of time when things clear it may become less…. I don’t know… but all I know is that I wont give her up yet!! When my surgeon operated she said she was surprised that my tape came out relatively easy and it pinged off one of the walls the other she had to cut it, but will only be a small amount in there. When it got to the bladder she had to cut it out of the bladder and urethra and re-section. I too have been told it is very dangerous, however Ms El Neil is a fistula surgeon as well so she has more delicate skills. Without recommending, she was the only surgeon in the UK that we know of that was prepared and confident to try to remove the tape. There were no guarantees, but she has told me she has managed to remove it. Yes it must have done tissue damage. I also had a hysterectomy at the same time. I am in pain still. The pain is a burning type of pain and I don’t know when it will go, or whether it ever will. I saw my Dr today we are upping pain meds to see if it will help, and of course I still take the homeopathy. My private health care covered the costs. I don’t know how much but I wouldn’t think there would be much change out of £10,000 in fact it may be more. I suppose the only thing you could do, if you could afford it is to e mail her and ask approximately how much she would charge to remove it and of course hospital charges and all the rest of it. I personally would not let a gynae who has no experience of this type of surgery remove it because once its messed with its much harder to remove the rest of it. I personally think, if you were able to see a surgeon who may be able to remove the majority of it, it would be best to have it in tact so that they can follow where it is. I do know of another lady in the UK who has had the tape out but the ends are still in by Sohier. She seems to be doing fine. I don’t know Eileen, how to advise you it is a terrible journey for all of us and we are all trying to help each other. The majority of the medical profession just seem to have their ‘heads in the sand’ and God knows if we can get it out there and get the help we all deserve… and STOP other women having it fitted. Ask any other question you want, I wish I could help more.

    Posted by Lizzy Blanch | April 22, 2013, 3:59 pm
  37. Hello again Lizzy,
    I too have cried rivers for others and myself. I am so sorry to hear you are still in pain … and hope it does not last much longer.
    I have to tell you that your information is priceless and your validation of going thru what I am going thru too away the feeling that I was going mental. When I got your previous reply I rushed over to my neighbours house and showed her. She actually goes to a homeopath and takes Traumeel – small world once one gets to know it :). I must apologize if I misled you, it is not a Gyno who would be doing my surgery but (according to my Gyno) it would be a TVT Guru, who has done 3,000 surgeries and who is the one who can take it out with a warning that taking out the ends is going into unchartered waters and worst case scenario is that I could end up being paralyzed from groin to knee which does NOT help me make my decision.
    I was wondering if you would not mind emailing me as I am sure we are now talking specifics about ourselves and we do not need to be in the posts?
    Eileen

    Posted by Eileen Armstrong | April 22, 2013, 5:39 pm
  38. Hi Eileen and Lizzy
    If you both email me at tvtinfo@yahoo.co.uk and say you are happy for me to send your email address to each other I will do so.

    Posted by tvtinfo | April 22, 2013, 6:20 pm
  39. Dear Eileen, so sorry to meet another Canadian in a mesh complication quandry…as much as you would think we have skilled care for patients of mesh complications I cannot recommend or report any satisfaction from patients who have had mesh complication interventions in Canada . If you cannot afford the surgery to remove transvaginal mesh out of your own pocket you have to go through a protocol of having your GP refer you to a specialist who then can make a referal for you to go to the US where a few doctors have upped the standard of care for transvaginal mesh complication patients. However all possibilities for mesh removal in Canada must be exhausted or a long waiting list precludes you from getting mesh excision to avoid irreversible tissue damage before health authorities will allow medical service insurance to pay for out of country services.

    As long as there are doctors with questionable skills still raising their hands to say we can remove mesh in Canada, it is hard to convince authorities that these doctors are not meeting or giving a standard of care acceptable to mesh victims when we know there is new technology to detect mesh migration, and map it out for surgeons who specialize in removing mesh and realize that mesh complications are more than vaginal, bladder and urethra wounds, but the cause of systemic responses that need to be addressed by Rheumatologists, Allergy/Immunology specialists in order for the best potential to overcome the adverse systemic response to mesh rejection, mesh allergy and infections harboured by mesh filaments. You can find support and edcuation regarding mesh injury at facebook page Links on Mesh, where because of information sharing you must ask to be accepted into the group, the open facebook page Canadian Victims of Transvaginal Mesh, and TVTNO org, plus the website Medical Mesh Device News Desk where borders are invisible in between countries where women need emotional support and advocacy…….

    Eileen who does your gyno think is qualified to remove mesh and would he stand up and say where that would be and who he would send his wife to? We need to demonstrate the difference between standard of care in Canada and that of standard of care being offered in places like UCLA in the USA. I can’t help but think it is not in Canada where you will find a TVT guru who has done thousands of explants…… you appear to have no credible options in Canada unless you have a small bladder sling with no anchors, or arms and they can see it hanging out of you……then you may stand a chance of a reasonable recovery if they don’t take months to finally remove mesh before it does irreparable harm to more than one organ system in your body. I check Links on Mesh almost daily so please if you need support visit me there …hugs from nonie to all those afflicted by mesh and medical ignorance

    Posted by Nonie Wideman | April 22, 2013, 8:03 pm
  40. Hi Eileen
    I think it would be worth checking out with Nonie (and your Canadian mesh counterparts) about removal in Canada. I am sure they have lots of experience with mesh surgeons which they could let you know about if you log on to their Facebook page.
    Thanks for your input, Nonie!

    Posted by tvtinfo | April 22, 2013, 8:17 pm
  41. Thank you so much Nonie for pointing me to a website for Canadian mesh. I shall certainly ask to be accepted into the group. I first started reading the English websights, then the American because I could not find any Canadian. I even asked to join a Class Action Suit for mesh sufferers and was told that ‘you may not qualify as you ‘bloat’ and we dont have anyone else who bloats’. So you can imagine my astonishment when I actually did post and found Lizzie had experienced exactly the same as I did.
    Eileen

    Posted by Eileen Armstrong | April 22, 2013, 10:30 pm
  42. Hello Josephine, I am so sorry to hear of your story, and I can empathise. I had a tot fitted in 2007 and suffered various medical complaints almost immediately after. Mainly consisting of bowel problems. However a year ago started to suffer excruciating pain and had the tot removed 12 weeks ago. I am still in terrible pain. Burning deep inside which is now travelling all round my body. I should be back at work, but feel too unwell to return, so will probably eventually lose my job. I am no longer being paid to be off sick, so money is now not coming in and we have a large mortgage to pay. I am now in the ‘you have had the operation you must be well now, bracket’ and ‘it must all be in your mind… or you are just playing on it club’!! I feel desperate. I had a life! A full time job I loved. A new husband great house and great life. Now I’m just reduced to a shadow. I’ve run out of money and my Dr just wants to drug me up and send me home. Love sent to you Lizzyx

    Posted by Lizzy Blanch | April 25, 2013, 5:37 pm
  43. Hello Lizzy,

    We have spoken before on another support group site. I really hope you are feeling better now. If you don’t mind could I just ask you a couple of questions as I’m due to have my TVT removed by Suzy Elneil next month and I’m trying to get some info together. Firstly, does Miss Elneil remove them laporscopically like Natalia Price does do you know? Also, I’m travelling a long way and need to book in a hotel in london the night before surgery with my husband and he’s going to stay on at the hotel. However, on ringing UCLH I’ve been told that I will only be in for 1 night. I’m really worried if this is the case if I will be well enough to travel all the way back home only one day after the surgery. I’m also scared of hospital and needles and am looking at ways to calm my nerves etc via homeopathy. I’m going to buy this over the internet including traumeel but I wander whether Miss Elneil would object to me taking a homeopathic remedy before and after surgery. Thanks Lizzy xxx

    Posted by Julie | May 3, 2013, 12:45 pm
  44. Julie, it is Eileen here. I am in Canada, but lived first 30 years in England. May I ask you a question? I am aiming at going to UCLA (7 hour ride in plane) for removal of TVT-O. I am exactly like you when it comes to hospitals, I have a phobia of them and it makes me ill. I would appreciate knowing how you are going to calm your nerves via homeopathy and is this even possible? (it makes me quite excited to see this as it would help me tremendously too).Can you tell me if either of the two women you mention, do they take out TVT-O ? The reason being, most of my family are still in England and if I could get it done there I would as I would then have a 1/2 hour flight up north of England, and could recoup there instead of the long ride to Canada.

    Posted by Eileen Armstrong | May 3, 2013, 2:40 pm
  45. Hi Julie
    One night does not seem very long but I’m afraid they do try to get you out as soon as they feel you are up to it. Make sure they know how long(?) your journey home is especially if there’s lots of traffic to factor in. Let them know if you don’t feel up to going the day after your op.
    You could consider staying in the hotel with your husband for a night before your journey home.
    Take a cushion to sit on and a pillow to put under your seatbelt over your abdomen. Take a blanket too.
    I

    Posted by tvtinfo | May 4, 2013, 4:16 pm
  46. Hi again Julie!

    I understand Suzi uses a combination of approaches to remove the mesh – abdominal, laparoscopic and/or vaginal. Method(s) will depend on placement and type of tape plus individual patient. You should ask these questions before your surgery.
    Regarding the remedies for nerves, why don’t you email Suzi’s secretary who might be able to ask Suzi for you. You are bound to be nervous but hopefully the staff will put you at your ease when you get there. Everyone I know who has had removal surgery was very nervous beforehand!

    Posted by tvtinfo | May 4, 2013, 4:27 pm
  47. Hi Julie,
    I can’t help on the questions about Suzi as Natalia removed my TVT. But I have got a few suggestions on a document about how you can prepare effectively for removal e.g. foods to reduce constipation, clothes without a waistband or leg contact. If you’d like it, please email me at lizrharris5@gmail.com

    It is indeed scary having the mesh removed but what kept me going was that it was coming out – and keeping it in just wasn’t an option as I was almost crippled by it from the moment it was inserted. We know there is risk in surgery but Suzi is probably the most experienced surgeon in mesh removal so you are in the best hands possible in the UK and most of the world to my knowledge. Meditation and mindfulness can help relax you and stop worrying but I know that can be easier said than done.

    Best wishes,

    Liz

    Posted by Liz RH | May 4, 2013, 7:39 pm
  48. Hi Eileen
    I don’t think Natalia Price removes tvt-o but it would be best yo email or phone her secretary and ask the question and also email or phone Ms Elneil’s secretary if you want to know about consultations and waiting lists plus costs of surgery if you are going private which I assume is the case.
    Dr Raz has such an excellent reputation you would need to weigh up the advantages and disadvantages of each option and whether your change of plan might incur further delay or expenses along with the travel and recovery side of things.

    Posted by tvtinfo | May 4, 2013, 8:33 pm
  49. Hi I am also a nurse who had the tape 2 yrs ago….pain in hip , leg, foot and back.tingling thigh and burning in leg, foot and groin couldnt understand what was happening to me…I now feel old at 51 and standing is awful.
    Susan

    Posted by Susie | May 5, 2013, 11:54 pm
  50. Hi Jo, sorry ! sounds like you are like me, I’ve had a tvt removal, not great I must say, I can only work part time, I already had a lot of pelvic surgery prior to having the tvt fitted, I was told it would make a new woman of me!!!!!!!!!!!!! more like turn me into an old woman before my time! I am seeking some justice, as I don’t know what the future will hold, this madness needs to stop! wishing you well.

    Karen X

    Posted by karen newman | May 7, 2013, 1:02 pm
  51. Hi my name is Eunice and I have the TVT and I just found out that mine cant be taken out due to it is to risky for me and no DR. will take it out . And they said that I would have to live with some of the pain. My life means to much to me to risk taken it out. I know how everyone feels there needs to be Justice for all of us .
    Eunice

    Posted by Eunice | May 7, 2013, 3:37 pm
  52. hI Eunice, I too was told (for 7 years) it was not possible to take mine out — but they meant in Canada where I live. Since then I have heard wonderful things about Dr. Raz at UCLA, and he can take my TVT-0 out. You may want to check him out.
    Good luck, Eileen

    Posted by Eileen Armstrong | May 7, 2013, 3:53 pm
  53. Hi Eileen,

    Sorry for the delay my laptop broke down! Suzi Elneil is experienced in removing all the meshes I do believe. I have heard many good things about her and when I had my consultation she was wonderful. Also, whilst in the waiting room I spoke to some of her patients, who all spoke very highly of her and how she had helped them when other doctors had failed. I’m going to email Lizzy for some info on what to take to the hospital etc and I shall ask questions at my pre op assessment. Anything else I shall email Suzi’s secretary.

    I have read a lot about Dr Raz, who also seems fantastic. I just thank God that we have these wonderful surgeons to help us. Good luck.

    Julie x

    Posted by Julie | May 13, 2013, 5:07 pm
  54. Hi Julie,
    May I have a phone number for her please. Thanks so much.
    I am hoping that I can come to England because all my family is there albeit in the North East, it would be much easier for me.
    Eileen

    Posted by Eileen Armstrong | May 13, 2013, 6:30 pm
  55. Hi Eileen

    I just wanted to give you some hope and light at the end of the tunnel. I am 3 months now post removal of the tot tape by Suzi. I had a hysterectomy at the same time as you know. I have turned a corner. The pain is much less than it was pre surgery and I have managed to have a holiday this week. I do have other things that are worrying me at the moment such as joint pain and I do not know whether these are related, but the fact that Suzi managed to remove the tape and 3 months on the burning it was causing is much better. Hope that helps you just a little. Hang on in there love Lizzy x

    Posted by Lizzy Blanch | May 14, 2013, 10:38 am
  56. BLESS YOU LIZZY FOR TAKING THE TIME TO RE-ASSURE ME. I AM GLAD YOU HAVE TURNED A CORNER AND EVEN MANAGED A VACATION (NOW THAT DOES INDEED SPEAK A LOT !!!)
    I HAVE JUST EMAILED MY LAST INFO TO DR. RAZ AND AM AWAITING IF HE WILL OPERATE ON ME, I DID MENTION MY DAILY BLOATING (SOMETIMES AS BIG AS ABOUT READY TO BIRTH A CHILD) AND ASKED IF HE HAD COME ACROSS IT PREVIOUSLY AND IF SO, DID IT GO AFTER REMOVAL. I TRULY HOPE SO.
    EILEEN

    Posted by Eileen Armstrong | May 14, 2013, 2:37 pm
  57. Hi Ann b
    How long had you hah your tape in before it was removed, I understand hat it may be easier to remove is it hasn’t been in that long – my tot has been 4 weeks and I am desperate to have it taken out. Thanks

    Posted by Dw | May 24, 2013, 5:28 pm
  58. Hello DW

    My tape had been in for nine years prior to removal. I believe it is easier to remove if it has only been in for four weeks as it has not had a chance to fully embed. Good luck

    Posted by Ann Boni | May 24, 2013, 6:09 pm
  59. Hi Ann b, my tape has also been inside of me for 7 years. I wonder how were you afterwards and how long has it been since your surgery. I would love to know how you are feeling and what you are experiencing. Eileen

    Posted by Eileen Armstrong | May 24, 2013, 7:07 pm
  60. Hello Eileen

    My tape eroded my urethra after eight years in January 2011. It was embedded in the the lateral side walls and inferiorly thereby destroying my urethra. I underwent a large operation to reconstruct my urethra using my labia majora for the repair material. My surgeon would only remove the urethral tape at that time One year later which was a year past February 2012, I underwent tape removal, complete adehesiolysis of the pelvic cavity and a colposuspension. Three months after this operation I stopped my painkillers and apart from nerve damage in my right and left pubic area from the urethral reconstruction I am reasonably ok. Unfortunately I developed fibormyalgia about 18 months ago and this is my main problem now.

    Take care and if you have any other question please ask

    Ann Boni

    Posted by Ann Boni | May 24, 2013, 8:21 pm
  61. I am so sorry to hear this Ann, it certainly sounds like you have been through the mill and still are because of fibromalgia, my heart and my thoughts are with you Ann. I hope you get some relief for the pain this must be causing you, how sad to be recovering only to find yet another obstacle !!! love Eileen

    Posted by Eileen Armstrong | May 24, 2013, 8:56 pm
  62. Hi DW
    Have a look at this webcast http://www.aua2013.org/webcasts/webcasts.cfm?id=PLIIM-3_Gomelsky It discusses early versus late sling release and might be helpful. As far as I am aware the tape is embedded by about 6 weeks but please check with your surgeon about this. What is the main problem you are experiencing?

    Posted by tvtinfo | May 25, 2013, 2:01 pm
  63. Hi Lizzy
    How are you feeling now 3 months on ? My wife has TVTO and is considering the removal but is frightened of the surgery as it is more complicated than a TVT removal. Specialist is suggesting partial removal first but leaving in both ends .
    Vince

    Posted by Vince | May 29, 2013, 10:34 pm
  64. Thank you for the link – my main problems, are abdo ache, intermittent pelvic pain and constant pain in my legs and pains in my groin as well as a “spatchcock feeling”, I feel like I am being pulled from inside. I also have an abcess on one of the incision sights and I am having it drained today under a local – I have also developed terrible anxiety which I never had before, literally the moment I woke up from the operation I had anxiety and it has not gone away. My consultant says the tape is fine and is not really interested in anything else, he said he I should maybe see someone about my anxiety but doesn’t seem to be bothered about the pain and says it should resolve. Also I feel that I should drink loads and loads of water becauase if I don’t it becomes quite difficult to wee, i realise that if you don;t drink enough you don’t need to wee so much but it was never such an obvious thing before so I am almost becoming obsessed with drinking enough! I have an appointment with Ms El-neil tomorrow as I want to speak to her about taking it out. It just doesn’t feel right, I can’t explain any further than that.

    Posted by dw | May 31, 2013, 11:21 am
  65. Hi Ann Boni,
    Was the removal successful? how are you feeling now? much better I hope.
    Thanks for replying to me.

    Posted by dw | May 31, 2013, 11:31 am
  66. Hello DW

    Yes it was very successful thanks to Ms Elneil and I feel much better now. Good luck for the future and I hope everything turns out alright for you

    Ann B x

    Posted by Ann Boni | May 31, 2013, 12:25 pm
  67. hi I read everyones story I had the same thing happen to me and im getting my TVT removed I have 2 of them one on my bladder and one on my uteris and im getting them removed i’m very scared I want to know how long is the surgery and the surgery is on july 18 2013 the day after my birthday everyone wish me luck

    Posted by ellena | June 2, 2013, 1:57 am
  68. Hi Ann,
    I’m so glad that your surgery was successful and that you are feeling better.

    I saw Ms El-Neil yesterday and she says the tape needs to come out as the end site of the tape is infected, hence the abcess and also the tape is too tight – she seems very understanding and listened to everything I needed to say.

    Posted by dw | June 2, 2013, 4:23 am
  69. Thank you

    Posted by dw | June 2, 2013, 7:32 pm
  70. Thank you

    Posted by dw | June 2, 2013, 7:40 pm
  71. Hi DW

    So pleased you went to see Suzy Elneil and she identified that the tape was infected and too tight. Hopefully, now you will be able to get some proper treatment and get some relief from your problems. Thank goodness there are some surgeons out there who are really listening to their patients and can recognise the complications from mesh slings.

    Thanks for keeping us updated.

    Posted by tvtinfo | June 3, 2013, 7:12 pm
  72. Hi Ellena

    Sorry to hear of your problems with both meshes. The removal operation can be anything from about an hour and a half upwards for an experienced surgeon to remove a TVT sling to several hours depending on the type of meshes you have in and how difficult they are to remove. I would ask the surgeon for their best guess! Your op is only a few weeks away now so I really hope you can both prepare yourself and home situation but also distract yourself to some extent as the date approaches. I really hope it goes well for you and you get some relief from your symptoms.

    tvtinfo

    Posted by tvtinfo | June 3, 2013, 7:19 pm
  73. Hi Anne B,

    Just to say how pleased I am that you are now feeling much better. I am 4 weeks post op now following Miss Elneil removing my TVT due to it going through the vagina wall (she said it then got infected and grew a thin skin over which she was going to peel back) and urethra repair and reconstruction. I also suffered the horrendous pain in buttocks, tops of legs, groin, bladder spasms which were horrendous, huge bloated stomach …. and the list goes on! I also had to use a crutch at times and developed urgency and urgency incontinence which is far worse than the SUI that the tape was put in to cure??!! However, I already feel a huge difference, I know it’s early days and I still have some problems but I feel I have a future again. Like yourself Anne, this is all thanks to Miss Elneil and her wonderful team. I am very grateful and any ladies out there who are suffering and frightened as I was, please know that there is real help available from Miss Elneil and other recommended surgeons such as Natalia Price.

    Kindest regards.

    Julie x

    Posted by Julie | July 9, 2013, 2:01 pm
  74. Hi Julie

    So pleased to hear that you have now had the mesh removed and are feeling much better, especially as you were so frightened at the prospect of removal which is not surprising as you had major surgery by the sounds of it – what with the urethra repair and reconstruction on top of the removal.
    Did you stay in hospital for very long?

    Posted by tvtinfo | July 9, 2013, 10:14 pm
  75. Hello Julie

    I am thrilled that you have come through the operation and you are feeling much better. Well done. Things can only get better from now on. It took me quite a while to feel anything like normal (whatever normal is) but you will definately improve in the weeks to come. Take it easy please as you have had major surgery.

    Ann B x

    Posted by Ann Boni | July 9, 2013, 10:32 pm
  76. Thanks for your kind words, it was a major operation and my body is telling me to go very easy, which I am. I was in hospital for 4 days and returned for a trial without catheter a week or so later, as I had catheter in situ.

    You are right Ann, what is normal? I think when you go through this, life will never be “normal” again.

    Julie x

    Posted by Julie | July 10, 2013, 11:21 am
  77. Hi Julie,

    I am so thrilled to hear that you have come through this ordeal and are feeling much better. I had my TOT removed by Miss El-Neil 5 weeks ago as well as a urethra repair. The intense anxiety I felt regarding the problems with the tape (which were immediate) and the dismissive nature of the consultant who put it in left me feeling as though I would never feel ‘normal’ again. Thanks to Miss El-neil, who was so kind and listened to what I was saying and didn’t treat me as though I was making a fuss about nothing, I am on the road to recovery and I’m so glad that you are too. I hope more women who experience these problems realise that there is help out there.

    Posted by dw | July 16, 2013, 5:40 pm
  78. Hi DW

    So pleased to hear you had a successful TOT removal and you are making a good recovery. It is helpful to know that there are consultants who can identify mesh-related symptoms.

    However, it is disappointing to hear that there are other doctors who are so dismissive of these problems.

    Thanks for letting us know the outcome of your surgery.

    Posted by tvtinfo | July 17, 2013, 8:13 am
  79. Hi DW,

    Thankyou, I am so pleased that you are on the road recovery, I do hope that all your symptoms are resolved. I have some unresolved as yet but many have gone almost instantly following removal, the most profound being what you call the “spatchcock feeling”, as this drove me crazy and it has now gone completely thank goodness. I am totally with you on the consultants, who really need educating on this now. I’m going to write to my MP and ask him to raise this in parliament questions and ask for a public enquiry, I think we all need to stand together and be a voice. I personally think that Miss Elneil may be instrumental in the proper training of doctors and surgeons and raising awareness and I do hope that she receives full backing and support from all quarters in her work if that is the case. I do believe she cares very much and she has saved me from a future that I dare not even contemplate. If your anxiety remains I would ask your GP to refer you to mental health services, who will be able to help you with this. Don’t let it go on without seeking professional help, you’ve suffered enough.

    Good luck with everything and take it very easy DW.

    I have a question for any ladies out there, has anyone developed auto-immune problems since having mesh implanted?

    Posted by Julie | July 17, 2013, 11:32 am
  80. Hello Julie

    I hope by now you are feeling much better although I know it takes a long time to recover.

    In answer to your autoimmune question I have developed fibromyalgia since having a partial removal. This is quite common occurance amongst us meshies

    Take great care of yourself pet

    Ann x

    Posted by Ann Boni | July 21, 2013, 8:47 am
  81. Hello Julie and DW, it’s good to know that you have been cared for with the appropriate respect and understanding by Suzy Elneil. Do take life slowly after removal as it’s easy to do too much, too soon because things are improving. I had a setback when I walked on sand a few months after my removal – those poor internal tissues need lots of TLC!
    It’s amazing to see that there are 26,000 litigation cases for mesh harm in the US – it’s disgraceful that mesh is still being used. It’s also terrible that it’s so difficult to bring similar legal cases in the UK.
    Take care Liz RH

    Posted by Liz RH | July 22, 2013, 7:47 am
  82. Hi,

    Thanks for the link on autoimmune, it was very helpful and informative. I too have heard many other meshies are developing these autoimmune diseases too, it’s terrible. It seems there is no end to our suffering.

    I agree Liz about taking it easy, I can feel any slight over exertion, no matter how small, and the pain and twinges start, so this is a really slow process, I guess walking on sand is really using your muscles more than usual so I won’t be doing that any time soon! Although a stroll on a beach sounds very appealing but sadly not to be just yet.

    As you say, it is disgraceful that mesh is still being used and every single person who knows me and about what has happened to me has assumed that they have stopped using it and all of them are in a state of utter disbelief when I tell them that is still being put in innocent women as we speak. As for the legal system, we are never far behind the States!

    Take care.

    Julie x

    Posted by Julie | July 22, 2013, 3:31 pm
  83. So pleased I have found this website. I have been suffering for months but my GP was dismissive of me, however I persisted due to the severe pain when sitting down. I have seen a urologist who has been extremely helpful but has warned me there are only two surgeons who can remove the TVT, one being in London and the other in Sheffield. Has anybody been treated by the surgeon in Sheffield, I believe it is a Mr Campbell? There are lots of positive comments about Suzy Elneil, I want to make sure if I have the mesh removed that I go to the right surgeon. My TVT has broken through and I am having the camera tomorrow to see if it has damaged my urethra, then an MRI scan, once these have been done, my doctor will decide the next course of action. At the minute I have a severe infection, pain and cannot sleep. I have had groin pain, severe lower back pain, I did not associate any of this to the TVT as I thought it was just part of getting older!

    Posted by Pol | July 31, 2013, 6:25 pm
  84. Has anyone been diagnosed with the autoimmune disorder sarcoidosis secondary to transvaginal tape implantaton? I have experienced progressive neurological symptoms since my March 2012 surgery, suggestive of conus medullaris syndrome with associated bladder, bowel and sexual dysfunction (severe sensory and motor control deficits). I have a myriad of other symptoms too long to list here as well. My neurologist suspects neurosarcoidosis with a spinal cord lesion on my conus and possible brain lesions as well.

    Posted by Sherry D | August 21, 2013, 4:23 pm
  85. It’s time this barbaric procedure was stopped. In a civilised world this is so very wrong. I am waiting to have my tvt mesh removed very soon. It has been horrendous, living with the side effects of having the mesh. Infection after infection, pain, constant need to urinate…I could go on. I’m lucky, I have light at the end of the tunnel and have my treatment through the NHS, many are not so lucky. Still they do this procedure…if it were an operation on men it would have been banned years ago….

    Posted by Maxine | August 22, 2013, 1:08 am
  86. Hello my name is Linda. after reading all these posts I to am having surgery to remove this mesh. After a consultation with miss Sohier el Neil ( Suzy) on Monday the 19th of august I will be having the surgery to remove this on weds 18th of Sept. had this put in in Feb 2012 and suffered ever since with burning, itching under the vaginal wall. Pain in my vagina and in my buttock and down the back of my leg. Also pain in my rectum and itching as well. I Had a Bladder and Rectum prolapse with mild stress incontinence so my surgeon did a tot for this but began with intense itching and burning under the urethra and vaginal wall since week 5 post op. 18months on and a partial removal of this back in oct 2012 I continue to be left suffering in chronic pain. To me personally this has been torture every day as I cannot soothe the itching in the vagina or my rectum as miss el Neil stated this is due to the mesh causing this problem and no I wont stop this itching and pain no matter what medication I have been prescribed . Suzy knew what I was seeing her for immediately after I explained what pain I am in and continuously suffering these horrific symptoms, And yes I can relate to many of the comments posted on hear regarding the pain we all suffer and our quality of life has been terribly affected by this. We haven’t got a life only this one which we cannot continue to live with. Suzy el Neil told me herself that she is getting more and more patients being referred to her with mesh complications either NHS patients or private patients. I Read in an earlier post a lady was looking to stop in a hotel the night before the surgery, I was wondering if she found a hotel close to the uclh . Iwas thinking of doing this but they are so expensive for a night I will be travelling down to London in the early hours of the morning on the day of the op so to arrive around 6.30 am for the 7.00am admission. There’s a car park in north Gower street about 15mins walk to the main entrance to the hospital, Could anyone tell me is there a drop of and pick up point in the hospital grounds anywhere ,otherwise I will have to be pushed through the streets in a wheelchair to the car park which is 15 minutes away when walking.
    Any suggestions ladies thanks linda

    Posted by linda | August 27, 2013, 1:57 am
  87. Hi Linda,

    My husband stayed with me in the Tune Hotel at Kings Cross the night before, but it was a really small room and uncomfortable so I don’t recommend this. On another appointment we stayed at a hotel in Wembley, I will get the name for you if you like, it was roomy and comfortable and cheap with a tube station nearby to UCLH. I was picked up outside the hospital, where the car can stay just while they go in for you and you come out, the porter will wheel you out.

    Julie

    Posted by Julie | August 27, 2013, 9:56 am
  88. Hi Linda
    Thanks for sharing your experience of mesh complications with us. I am sorry to hear that you have had so many problems from your TOT implant but I am glad you have found an experienced surgeon who has identified the issue and is able to perform your removal surgery. I wish you luck for the surgery in September and hope all goes well x

    Posted by tvtinfo | August 29, 2013, 9:00 pm
  89. Hi Julie
    Thanks for the info on hotels. If anyone has experience of staying in hotels before surgery at UCLH then I am sure Linda would be pleased to hear about it.

    Posted by tvtinfo | August 29, 2013, 9:02 pm
  90. Hi Maxine
    Sorry to hear of another person suffering debilitating complications from this mesh procedure. I am glad you have got some treatment through NHS – are you having the mesh removed?

    Posted by tvtinfo | August 29, 2013, 9:13 pm
  91. ladies if anyone is suffering pain etc, etc, from having tvt/mesh implant, I would highly recommend Miss Soheir . Elneil, at Portland St. London .She has to be one of the Best Surgeons Around if not the Best. I should know, Miss Elneil has done my surgery for removal of the mesh, and I did have complications, She is so caring, listens, and takes her time with you and your needs, and she has a good team with her.

    Posted by theresa s | September 6, 2013, 6:01 pm
  92. My name is Mary and I live in Scotland and I had TVT fitted About 9 years ago and had severe pain and problems with erosion from day one. After a year I had further surgery for division of tape which didnt help as years passed I have suffered severe pain in groin area, buttocks and legs and an overall feeling of being unwell with breathlessness on any kind of exertion I am also extremely tired have not managed intercourse for 8 years ( doctors dont connect any of these symptoms but I am convinced there is a connection) In March this year I had tape removed vaginally and was sent home following day the next day collapsed at home and was rushed first to local hosp and then to Glasgow with sepsis and was extremely ill, nobody has an answer as to what happened. My situation now is I have severe pelvic, back,leg and hip pain and a constant feeling of pins and needles across groin area I can only stand for very short periods and can hardly walk and the general feeling of being unwell persists with breathlessness on any kind of exertion and really bad headaches. I am incontinent and have bowel problems and atrocious bloating, the pins and needles keeps me awake at night and when I do sleep I have nightmares as when I was ill I lost 5 days and my brain is trying to sort it all out. Docs seem to think I had tape removed so I should be fine. My life is totally different I can no longer walk which I did every day to keep fit and I can no longer go to gym or do zumba. I have tried to go back to work but I am so exhausted that when not at work I am in bed. I used to be so fit and active but am now a very old feeling 57 I sometimes feel I am gong mad.

    Posted by Mary | September 8, 2013, 3:24 pm
  93. Teresa
    Thanks for sharing that information with us. I am so pleased that you had a successful removal from a caring and skilful surgeon. Ms Elneil certainly seems to have extensive experience of mesh problems and removal surgery and it is good to hear that she listens to her patients. I wonder what she thinks of mesh now she has removed so many implants from women having problems.

    Posted by tvtinfo | September 8, 2013, 6:52 pm
  94. Hi Mary
    I feel really sad for you and the experience you have had since having your TVT fitted and then removed. Are you in touch with anyone in Scotland who can help you with advice and support? I hope that the problems you are having now can be helped in someway in the future. Please let me know if you have no contacts in Scotland for support and maybe I will be able to put someone in touch with you.

    Posted by tvtinfo | September 8, 2013, 7:01 pm
  95. for our ladies in tha UK here is a reference for a doctor from a mesh victim “ladies if anyone is suffering pain etc, etc, from having tvt/mesh implant, I would highly recommend Miss Soheir . Elneil, at Portland St. London .She has to be one of the Best Surgeons Around if not the Best. I should know, Miss Elneil has done my surgery for removal of the mesh, and I did have complications, She is so caring, listens, and takes her time with you and your needs, and she has a good team with her. ”
    Like · · Unfollow Post · September 6 at 6:08pm
    Seen by 65
    Heatha Anderson and 7 others like this.

    Janetta Rydzinska Thank you Noreen, I am currently waiting for an appointment to see Miss Elneil and will let everyone know how I get on. She answered my email immediately and was very sympathetic. I will keep you informed.

    Posted by Nonie Wideman | September 8, 2013, 9:00 pm
  96. Hi Mary,

    That sounds terrible. Do you know whether the surgeon who removed the mesh had done other removals? Do you know if he or she removed all the mesh – it would be difficult to get it all out vaginally. When I had my TVT removed, the arms were removed by laparoscope and the middle portion by vagina. You are in a horrid position but need to know more about your case, and might even want to pay to get sight of your medical records. Is there a patient liaison service that you can go through for support?

    What concerns me is that you have had a partial removal and what remains is irritating your nerves, hence so much pain. The auto immune reactions are becoming more widely understood by sufferers and are considered here: http://meshmedicaldevicenewsdesk.com/removing-mesh-and-getting-healthy/the-links-between-surgical-mesh-complications-and-the-development-of-autoimmune-diseases/

    You may need to read more of the research that is on this excellent blog TVT info, and also some of the other sites that are growing – and then go back to your consultant armed with your research. You should not be suffering as much, although it is true that recovery takes a long time after mesh is cut out and women sometimes forget that they have had a lot of internal tissue cut that needs time to heal.

    Take care and I hope that things improve. Liz

    Posted by Liz RH | September 9, 2013, 12:42 pm
  97. I had my tvt mesh removed on Saturday by natalia price in Oxford John Radcliffe. After many many months of suffering I feel better already. My advice to anyone suffering who believe it is caused by the tvt mesh is dont give up, research, research, research. See a doctor who is sympathetic and put a strong case across to have mesh removed. My experience of this mesh has been dreadful and I know many women are suffering as I have to a lesser or greater extent. My heart goes out to everyone in this position.

    The removal of my mesh was complex as the mesh was worryingly close to the bladder but natalia is experienced in the removal of the mesh. She is wonderful and managed to remove the entire mesh. I was very fortunate the mesh was in one piece and removable. I do think a less capable surgeon could have damaged my bladder.

    Upto now although sore and tired all is well and I have eight weeks off work to allow for recovery, no bladder leaking. Fingers crossed I should make a full recovery. There is hope for people with tvt mesh.

    The pain down my left arm into my fingers is gone, the pain in my left side is gone, im hoping my hair falling out stops soon too, my coordination has improved already….I hope now it’s onwards and upwards !

    Don’t give up, push push push …it’s ur body, ur life, ur health.

    Posted by Maxine | September 25, 2013, 5:56 pm
  98. Hi I am new to this site and boy what an eye opener!!!! I had a tvt put in about 10 years ago then had to have it “cut” 3 years later as I was unable to empty my bladder properly,this was in 2006 and done by a urologist as there was not a lot of info around at the time so I did no research and despite being a nurse just put my trust in a consultant.Sadly he perforated my bladder during surgery ,which healed up after a month of having a catheter in situ.I seem now to be having a problem with tiny fragments of the tape left inside as I have terrible vaginal pain when sitting—-am using a rubber ring whilst writing this!!—-,am also taking increasing amounts of Gabapentin which doesn’t really do a lot my Am just wondering if any one else has had -or has –this problem or can offer any advice?

    Posted by carole j | September 29, 2013, 3:22 pm
  99. Yes I have it all. Had to be put on some meds for the rest of my life cause they won’t take mine out due to it is to risky.

    Posted by Eunice | September 29, 2013, 3:27 pm
  100. hi Carole, Eunice,

    Both of you have a great deal of misery to deal with. I was lucky as I had mine removed soon after insertion.

    Whilst I cannot know whether removal after 10 years and a partial removal will work, you need to follow up with one of the two surgeons whose names keep appearing on this site. Either Natalia Price (who removed my TVT) or Sohier el Neil. They have a different approach but both are very skilled. You can pay for a private initial consultation which means you will get seen quite quickly, or be referred by your GP because they are specialists; and hopefully one or other will be able to do something to help you. From what I’ve heard of other women, they have paid for a swift consultation and then waited for removal on the NHS which can take some time.

    I do feel for you.

    Liz

    Posted by Liz RH | September 29, 2013, 3:33 pm
  101. There is also Dr. Raz at UCLA in LA. He has removed over 400 TVT’s and he uses a translabial ultrasound where he can ‘see’ the pieces. He also took out shrapnel during the war. Hope this helps.

    Posted by Eileen | September 29, 2013, 3:51 pm
  102. Hello ladies, so sorry to hear your plights. I don’t come on very often but just to give some words of hope. I am now 8 months post tvto removal and hysterectomy. I no longer have the pain I used to experience in ‘the’ region.. the pins and needles, the burning, the intense cutting type feeling the excruciating pain. It has now gone.. the nerve damage pain seems to be very very minor. I have other health problems which I don’t really think are attributed to the tape such as stomach problems and some bowel problems still. I am very urine incontinent and wet myself all day it just runs out! lol :-) But hey… that seemed awful before the tvto was fitted, now I don’t really care because by comparison its just an inconvenience. Suzi El Neil removed my tape and I will sing that lady’s praise until my last breath on the planet, because even though all is not brilliant, it is a million times better than this time last year. I really feel I owe getting the majority of my life back to that lady and trust her implicitly. Keep going ladies, its your health and your life… there can be major improvement after removal. You will find a new normal …… Lizzy x

    Posted by Lizzy B | September 29, 2013, 4:58 pm
  103. It’s terrible to read how women are suffering having read recent postings and it saddens me greatly. I can not recommend natalia price highly enough, liz recommended her to me and I will be eternally grateful to both. I would always recommend second opinions, my tvt was removed after 3 years and was risky to remove as extremely close to the bladder however natalia succeeded. If I was having problems re tvt mesh I wouldn’t hesitate to contact her, she maybe able to help when others couldn’t. I travelled from Manchester to see her as she has experience in removals.

    Posted by Maxine | September 29, 2013, 9:24 pm
  104. Hi Eunice a fellow sufferer I see ,!! How do you cope ,or is that a silly question ,what meds do you take and have you sought a second opinion at all? I am seeing my gynea man in 10 days but feel he is rather out of his comfort zone,he did have a “look around” in June but to no avail!!! I have double trouble as I had a knee replacement over 2 years ago that has given me nothing but trouble ever since and I am still having on going scans and further surgery is on the cards ,so not only do I have discomfort when sitting but cant stand or walk for long either!!!

    Posted by carole j | September 30, 2013, 8:58 am
  105. Hi Carole and Eunice
    You shouldn’t have to suffer like you are and put up with your issues. You need to exhaust all avenues to try to get some help – please don’t give up trying to find medical help from someone who is experienced and knowledgeable about mesh issues. You will soon find that there are many doctors who are not experienced with mesh problems (once they’ve stuck it in that’s the end of the story) and you may have to travel to find someone who is.

    Posted by tvtinfo | September 30, 2013, 10:25 am
  106. Hi Maxine
    Thank you so much for sharing your story with us and telling us about your removal with Natalia Price. I am so glad you were able to have a successful removal and remain continent. I hope you are taking it easy as full recovery will take a few months. You might find you are very sore for the first week or two but after about three weeks things really start healing. Keep us posted with your progress!

    Posted by tvtinfo | September 30, 2013, 10:29 am
  107. Thankyou Maxine,
    This has given me real hope as I have my mesh removed Oct 31st by Natalia Price and I was nearly going to cancel as I was getting so worried about it.

    Posted by Amanda L | September 30, 2013, 10:44 am
  108. Thank you, I’m very lucky, upto now. I think researching was a godsend for me and taking the right advice and seeing a consultant with experience in tvt removal. It truly breaks my heart that others are suffering and are struggling to get help.

    Posted by Maxine | September 30, 2013, 10:53 am
  109. Amanda, I understand totally trust me I was in a terrible state before I saw her. I can only speak from my experience but Natalia was simply wonderful. She doesn’t give false information, simply the facts and she treated me with total respect, care and she was anxious to get the very best for me. Her care before, during and after was brilliant and you really must not worry. There were two other ladies having mesh removal while I was there, although I didn’t meet them I believe they were fine. Natalia has lots of experience with removal and my mesh was worryingly close to my bladder but she managed not to damage the bladder area. The hospital, John Radcliffe were just fab, everyone looks after you so well. Please don’t cancel your appointment, you are in excellent hands and I’m totally confident natalia will do her very best for you. My thoughts are with you. Try to ensure you eat properly prior to you op, take a good vitamin, eat plenty of protein, it will help healing. Sleep lots, look after yourself as best you can and try to look forward to the op rather than dread it. I got in such a state and look back and realise I shouldn’t have. It’s fear of the unknown I know. It’s the fact we have had bad experiences and fear more but hopefully this will improve your life for the better. Just ensure all mesh is removed not partial. Good luck. If you have any questions please feel free to ask. Maxine x

    Posted by Maxine | September 30, 2013, 11:12 am
  110. HI Amanda

    As Maxine says – be reassured. There are a number of us who add to these posts who had our mesh safely and successfully removed by Natalia and I certainly echo all that Maxine said about her and about the JR hospital.

    You want to be mesh free – don’t let fear take over your instincts to get the mesh out.

    I have written a couple of simple documents about preparing for mesh removal and what it’s like afterwards – email me on lizrharris5@gmail.com if you would like them

    Best wishes, Liz

    Posted by Liz RH | September 30, 2013, 11:17 am
  111. Maxine, that was such a comforting message. Can I ask if Natalia knew before hand that the mesh was close to your bladder? Is she very honest after the operation as to telling you if the mesh had eroded etc..? I think I would like to know all the details. She is doing a full removal as I requested . Although I will try and do all the things that you have mentioned i’m afraid sleep is not one of my best things right now. Thanks for your support X

    Posted by Amanda L | September 30, 2013, 11:19 am
  112. Hi Amanda

    I’m more than happy to answer your questions so ask away.

    As there appears to be no X-ray or scan that will show the mesh, until she operated she didn’t know how close it was. She did say when she examined me internally that it was too close. She says it as it is, and assures you she will do her best, I totally have faith in her abilities. Everyone is different so will have had different reactions to the mesh. Before natalia operates she will chat with you. I found it helpful to list any questions. She is patient and kind and will spend time talking to you. It is very hard to trust after feeling betrayed by having the mesh inserted however its important to know that there are doctors and surgeons who do care and truly want the best for their patients.

    Posted by Maxine | September 30, 2013, 12:01 pm
  113. Hi Amanda

    I totally understand how nervous you are feeling.

    Some people have pre-op tests etc at the JR the day before and then return to the hospital next morning.

    Of course, there will always be risk attached to the removal surgery, you can’t avoid that fact, Natalia does not avoid these issues. But with Suzy and Natalia you are probably in better hands than anyone.

    From what I can gather it is the laparoscopy that enables her to view the tape and bladder wall during the actual removal. I think she also performs cystoscopy to check the condition of the bladder and urethra. Do ask her about this when you go in. Natalia should come round to see you at some point after the surgery and you should ask her all about the surgery and how it went – make some notes in a little notebook next to your bed as you will probably forget later what she said!

    Best of luck with your surgery and let us know how it goes. If you want any more info, please email me: tvtinfo@yahoo.co.uk

    Posted by tvtinfo | September 30, 2013, 12:07 pm
  114. The best advice I can offer is when you find a surgeon such as natalia is to try to have faith and look forwards not back. It can only be a good thing to have the mesh removed. It is extremely scary to have more surgery but the alternative is to leave the mesh inside…. If natalia says it is possible to remove it then get it out. If it is left in there it may not be possible to remove at a later date and who knows what harm it could do to your body in the future. I am still stunned that this is going on with people.

    Posted by Maxine | September 30, 2013, 12:22 pm
  115. HI, I had my tvt about 3 months ago. After the op I was sent home the next day, then rushed back in a few days later with a bad infection, and unable to empty my bladder. Since the op, I have pain in my right side, groin, and one of the insertion points is raised and very tender to touch. I need to know if the mesh can be removed sucessfully after 3 months of it being in, or is there still a high chance my bladder could be damaged if removal of the mesh takes place? If i have pain in my side now, will it only get worse, could it be that the mesh is digging into me?
    JC

    Posted by JC | October 1, 2013, 7:33 pm
  116. Hello JC… My mesh was in 6 years. It was removed in February this year by Sohier El Neil. She did need to remove some of my bladder but 7 months on I am relatively pain free. I do suffer from urine incontinence but its not the end of the world and manageable. Most of all the mesh is out, the pain has gone and I can look forward to a relatively normal life!! Yes it could be the mesh is digging in you, it is a foreign body after all. Seek help from one of the surgeons we all talk about. Good Luck… Lizzy

    Posted by Lizzy B | October 1, 2013, 7:50 pm
  117. Hello JC, Many women have had their mesh removed after months or years. If you can, do read all the posts on this page at least, because you will learn about different women’s experiences. It could well be that the mesh is digging into you – it shrinks and hardens inside the body. Goodness knows how it continues to be used when we have all suffered so much.

    Best wishes,Liz

    Posted by Liz RH | October 1, 2013, 8:41 pm
  118. Is there any one out there who still has pain and problems after having their tvt “cut”or have you all been lucky enough to have had it removed completely?

    Posted by carole j | October 2, 2013, 2:11 pm
  119. How terrible to be left in pain. I have heard of a lot of women who still have pain after partial removal, also after full removal. I would go back to your doctor and ask to be referred to someone who may be able to help with your ongoing problems. Sometimes it pays to be nicely pushy.

    Posted by Maxine | October 2, 2013, 2:43 pm
  120. Am seeing my Gynae man next week and will see what he says but to be honest I have had so much surgery on or around my bladder over the years most of which has just made things worse that I am scared to let any one near that area again!!!Already have urge incontinence and can get a uti at the drop of a hat but this discomfort when sitting really does get me down and its not something you can moan to folk about really is it ?!!!

    Posted by carole j | October 3, 2013, 2:09 pm
  121. How terrible for you, you must be worn out. Would it not be worth a second opinion re your problems and a referral to natalia price. It seems horrendous to keep having to go through all of this. Obviously I don’t know your history and experience I just find it so frustrating when a satisfactory conclusion can’t be found

    Posted by Maxine | October 3, 2013, 5:51 pm
  122. Thanks so much for your concern a second opinion is some thing I have thought of but as I also have this ongoing problem from a knee replacement I had over 2 years ago I seem to be seeing so many different consultants at the moment !!!Have you met Natalia Price yourself ,is this tvt problem a horror you have been thro yourself?i could enlighten you of my history but fear I would bore to death any one else reading this!!!

    Posted by carole j | October 4, 2013, 12:08 pm
  123. Hi
    You have even through the mill.

    I had my tvt mesh removed by natalia price two weeks ago. She removed the entire mesh. I travelled from Manchester to Oxford for the surgery as i had been told she is highly skilled and experienced. I can’t sing her praises enough. I’ve had horrible problems with the tvt mesh, repeated infections, constant need to go to the loo, terrible pain…the list goes on. The mesh was worryingly close to my bladder and the op was risky but I’m so very lucky as no damage was done to my bladder. I put this down to natalia being so specialised. She pointed out the risks etc. I have gone in two weeks from needing to get up six times a night once or twice. I have a lot of recovering to do yet but I feel the benefit already of having the mesh removed. Even if I had partial removal previously I wouldn’t hesitate to see natalia as I would trust her to try and improve matters. I asked natalia to try to secure my bladder to avoid incontinence and she did her best and I feel this has also helped me. I was quite badly incontinent prior to having the tvt mesh inserted. I can only advise anyone suffering to keep asking questions, have a second opinion and try to be brave with regards to further surgery. The main thing is to find the right surgeon. Of course everyone will be different but the main thing I believe is to try and get back to the best health possible. I know how ill I was, how it affected my entire life on a day to day basis. It’s so scary to go through all this, but if possible don’t give up.

    Posted by Maxine | October 4, 2013, 5:27 pm
  124. I want to see Natalie Price. Once you pay a consultation fee, can she then refer me to herself for payment under the NHS? Anyone know how this is done?
    I had my TVT mesh put in 8 years ago. I went in for a colposuspension, after deciding against the mesh. Before the operation, the doctor came and told me he only had time for the mesh, and that it was a better operation and that it did not leave any vaginal scars. I signed, then paniced and changed my mind. They took me in to have the anesthetic and I refused as I did not want the TVT. They forced me onto the stretcher and I woke up later, having had the mesh inserted. The nurse said I was in there for a whole 5 minutes. It has hurt ever since. Lots of UTI’s. Now I am in the menopause, and the vaginal pain is raw and the scaring is like I have been grated. It feels like I have a piece of mesh in the urethra when I pee.
    I complained about my treatment, but got no where. I have just lived with the pain. Now I want it out, but can’t afford to pay much – although I will beg and borrow.
    How much is a mesh removal costing people?

    Posted by Joy | October 14, 2013, 2:59 pm
  125. Hello Joy, It sounds as though you were forced to have the TVT – that is just awful. Your pain is similar to that suffered by many and it is outrageous that you have been left to suffer like this.

    A number of women have seen Natalia (and Suzy) privately for a quick first consultation and then been put onto the NHS waiting list for removal. You could be waiting a few months but the cost is terribly high to have a full removal – probably around £20,000. Don’t have a partial – it’s likely to cause terrible problems.

    Best wishes,
    Liz

    Posted by Liz RH | October 14, 2013, 3:03 pm
  126. Hi Joy,
    That’s so awful what they have done to you!! Natalia will see you and then write to your GP and put you on the NHS waiting list. It’s about a 5-6 month wait.
    Best Wishes,
    Amanda

    Posted by Amanda L | October 14, 2013, 3:43 pm
  127. Hi, I put my case to my gp and I got referred on the nhs so didn’t have to pay initial consultation fee, which it was prepared to pay. It might be worth exploring that route. I had to wait four months for op with natalia. I had my op three weeks ago to remove the full tvt mesh. I’m doing well, have had some pretty bad days since op but that due to getting a bladder infection, I was warned this May occur after my tvt was removed as mesh was extremely close to bladder. What you are going through is terrible, I’d recommend putting the wheels in motion with regards to removal and as Liz says, total removal. Good luck

    Posted by Maxine | October 14, 2013, 5:44 pm
  128. Thank you Liz, Amanda, Maxine. I appreciate the solidarity and advice. I went to my doctor yesterday and asked him straight out to have the mesh removed. He referred me straight to Dr. Price as she would be the best person to decide if that is the right course. He also said he would have sued had he been treated the way I had. The thing was, I wanted to recover and hoped it would all just be okay. My doc retires in two weeks, so I am glad I asked him, as starting again with the story and being believed would be hard. The difficult thing for me is that Natalia Price is on the team who put the TVT in. I never met her, and I think she may not have been on the team 8 years ago, but the surgeon who made me have the mesh is her boss. I never ever want to see him again. I feel violated by him and just his name makes me sick and scared and angry. Do I tell her what happened? I suppose not, as my primary concern is my physical scarring and pain, not my emotional hurt. I expect it will be some months wait. My doc thoughtfully prescribed an oestrogen pessary to help with the thinning of the vaginal skin over the mesh. I will remember your advice for total removal. Thanks so much.

    Posted by Joy | October 15, 2013, 8:48 am
  129. Hi, that’s great that you got your referral. I would personally state you want natalia and no one else to see you and todo you tvt removal, that is what I did and there were no questions asked. Re mentioning what happened I personally wouldn’t, I would just say it is giving you problems and state what the problems are. I’m not saying this would be the case but as they are part of the team or it was at that time it may complicate matters. My priority would have the mesh removed, getting back to health. Natalia will just need to know what symptoms you had and the reasoning behind having the tvt inserted in the first place, incontinence etc and details of how the mesh has affected you.

    Posted by Maxine | October 15, 2013, 9:12 am
  130. Thanks, Maxine. I will take your advice. I am waiting for choose and book. My doc also said to be specific about seeing Dr Natalia Price. My father wants me to sue, but I can;t imagine that being a good plan at this time. All I want right now is to be comfortable.
    I wonder, has anyone tried anything that helps the rubbing pain from the mesh on walking and sitting? I wondered if a slightly inflated condom coated with coconut oil would help – or if that would increase the UTI risk?

    Posted by Joy | October 15, 2013, 11:57 am
  131. Hello Joy,
    Great that your GP has been SO supportive. I also had my TVT put in at the same hospital that Natalia works at – I demanded a second opinion when my pain was so bad. I think I know exactly who you are referring to – it wasn’t the same one that put mine in. Don’t worry – just insist that you see Natalia. They used to work together to remove TVTs whilst she was learning the ropes, but now it’s just her that removes them and she is widely regarded as the specialist. As Maxine says, focus on the current problem, not on the insertion (much as you would like to name and shame).
    I don’t know what to suggest to ease that rubbing pain – I wish I could help. Coconut oil is an excellent start though, and your idea of inflating a condom is definitely worth trying. We have to be inventive in these situations!
    I live near Oxford if I can be of any help. Liz

    Posted by Liz RH | October 15, 2013, 3:18 pm
  132. Am coming back into the chat now as at my gynea visit last week all the consultant came up with was a referral to the pain clinic,neither he nor I know if my pain is from the tvt tape that I had cut–but not removed— 7 years ago or if it is from mesh I still have in situ from an Apogee I had done about 5 years ago!! either way he was quite anti further surgery as I have had lots in that area in the past 15 years Has any one else had the same surgery or has it all been tvt s only? As to pain relief for Joy I have tried just about the lot and nothing does much good ,as a retired nurse I would say be careful with any thing you insert as ,yes it could cause UTI I have tried Vit E oil and am also using a hormone cream I get on script as to oral pain relief I am just reaching the max daily does of Gapapentin and am wondering “whats next” as they are no longer effective!!!Oh the joys of being a woman

    Posted by carole jarman | October 16, 2013, 12:25 pm
  133. I’m sorry to hear you appear to be getting nowhere. Unfortunately it appears a lot of urologists are inexperienced in tvt removal and complications caused by having the tvt in place. I would imagine it is causing you problems to be honest and you really do need answers from someone experienced in tvt removal. I would personally ask for a second opinion, if you speak to your gp he will arrange this if you explain your concerns. I would ask to be referred to natalia price at the John Radcliffe in Oxford, she will, I’m sure, be able to advise you as to the best course of action. You may need to pay the initial consultation of around £200 and then be referred on the nhs but if this is the case and you can afford it, I would definitely take this course of action. You may not need to pay at all. I hope this helps. Maxine

    Posted by Maxine | October 16, 2013, 1:50 pm
  134. Just a little reminder ladies to check which device you have before you make an apppointment with a consultant with a view to having it removed.

    Natalia Price and removes TVT only.

    Sohier Elneil can remove TVT, TVTO and TOT

    I wish you all the luck in the world.

    Ann B

    Posted by Ann Boni | October 16, 2013, 2:00 pm
  135. Natalia Price has a slot on 1st November for private consultation, Carole. I am waiting for my chose and book referral through the NHS, which is likely to be early Nov as well. Thanks for you advice re insertion for pain. I will be cautious.

    Posted by Joy Lloyd | October 16, 2013, 3:36 pm
  136. That’s good, in my experience you can trust natalia completely. Make sure you ask her all the questions that concern you and if possible have the entire mesh removed. If you read more on this site it will give you lots of information and advise you on the questions you should ask. I am so happy to have had her remove my mesh. She is completely honest and will point out possible risks but do not be scared, if she is prepared to remove the mesh then I’m sure it can only be beneficial to have the mesh removed. It is three and half weeks since my removal and I’m starting to feel better. I’ve been given an 8 week sick note but I’m hoping after this time I will be markedly better. Good luck, fingers crossed for you

    Posted by Maxine | October 16, 2013, 5:07 pm
  137. Thanks Joy I cant get an appointment to see my GP to talk about a referral until 31st of this month so wouldn’t get the Nov 1st slot Does any one know if NataliaPrice has her rooms for PP referals near to the John Ratcliffe <We live in Warwicks so I don't know Oxford at all Have just ordered a different ring to sit on as this one gets very hard after a few minutes!!!

    Posted by carole jarman | October 17, 2013, 3:06 pm
  138. Carole – The Manor is here http://www.nuffieldhealth.com/hospitals/oxford – quite near the JR. Liz

    Posted by Liz RH | October 17, 2013, 3:12 pm
  139. I have taken the 1st November slot with Natalia Price. The NHS one is not until mid December. I will be able to continue on with the NHS for removal, but I am willing to pay to speed things up.
    Thank you, Liz, for coming to see me. It helped greatly to meet someone who has had the removal and is not walking stiffly. You give me courage; not having enough of my own, I need to gather it from others where I can.

    Posted by Joy Lloyd | October 18, 2013, 8:11 am
  140. Being a retired nurse I have an enquiring mind and wonder if any of you would tell me how you–or you Gp or Gyneacologist decided your pain came from tape ,have you had any “tests” as my diagnosis has been guess work I think,altho I did have an examination under anaesthetic early this year.I have had 3 lots of gynea surgery using mesh over the last 8 years—-oh to turn the clocks back and just have incontinence!!!–

    Posted by carole jarman | October 23, 2013, 3:50 pm
  141. Hi, I was told my tape was too close to my bladder when natalia examined me. When any urine was in the bladder it irritated and rubbed the bladder wall. She confirmed my repeated bladder infections and bladder infection symptoms were caused by the mesh. She also confirmed the pain I was suffering down my legs, pelvis, side and left arm were being caused by the mesh. Also the pain during intercourse. Since I had the mesh removed four and half weeks ago for the most part the pains have gone other than obviously the recovery from the mesh removal. I do not know if having intercourse will be pain free as until six weeks have passed and I have been checked out I have been given the all clear. I do feel that I am very lucky as I seem to have no incontinence issues now. This mayb due to the muscles tightening themselves (I had the mesh out in after a hysterectomy which caused incontinence) also I asked natalia to stitch my bladder to attempt to reduce incontinency, which she did also when the mesh was removed. Interestingly since the mesh was put in I had developed a lump on my leg the size of a pea…in the last week this is now disappearing. We none of us know the side effects of this mesh. We mat have obvious signs but a lot can go on inside the body that we are unaware of. I know it will take some time until I make a full recovery but I’d advise anyone with mesh inside them to look to having it removed. I feel a different person already.

    Posted by Maxine | October 23, 2013, 9:08 pm
  142. Ps I don’t think there are actual tests other than examination however it is a foreign body with dye in it, lots of problems can be caused by plastics or any foreign body put inside us. It may be fine for some individuals but when you have reoccurring problems that can’t be explained away then see a consultant with experience in mesh complications then it’s not guess work more a case of drawing a conclusion given the symptoms, experiences of the individual. Everyone’s case is different of course and everyone’s experience and outcome different too. All I can speak from is my own experience. I know my body, I know the mesh was the cause of my problems and natalia confirmed this before she operated to remove the mesh and after removal. I know I’m so glad to be mesh free and I thank god that I’m so lucky and I know first hand how dreadful it can make u feel and how much better you can be after removal. In my case it’s worked out, I want other women to know they don’t have to continue to suffer the physical and emotional pain from the mesh and that for many there is real hope !!

    Posted by Maxine | October 23, 2013, 9:24 pm
  143. Carole, I will let you know what Natalia thinks about my pain and the mesh inside me when I see her in 10 days. I have had pain since it was put in, and the pain is suddenly worse in the same place, so it seems an easy conclusion for me to blame the mesh.

    Posted by Joy Lloyd | October 24, 2013, 5:32 am
  144. Hi Maxine thank you so much for replying my trouble just seems to be pain on sitting which has slowly got worse ,at first it was put down to vaginal atrophy and I have been using an oestrogen cream for a couple of years now I have suffered with urge incontinence for years so cant really connect that to anything mesh related.I have had 3 lots of mesh used for different prolapse operations in the last 8 years and only the tvt tape has beencut —he couldn’t remove it —due to it occluding my bladder so who knows which ,if any is causing me this problem? Am off to see my
    GP later as I am now taking the highest dose of my medication,trouble is its a man I am seeing today!!
    Joy yes ,please do let me know how you get on good luck!!!

    Posted by carole jarman | October 24, 2013, 12:23 pm
  145. Hi when I had the mesh put in I had urge incontinence and stress incontinence, both seemed better initially after the mesh was implanted however it returned far worse after a year or so. I was getting terrible migraine headaches, swollen stomach, extreme tiredness too, other than the obvious recovery needed after surgery I’ve noticed these problems seem to be going too. Trouble is we can have things going on in our body that we can’t explain, put it down to being a woman, our age etc when in fact it was I feel, in my case the mesh. It will interest me how I feel in the weeks, months to come. No offence to men here but I really feel women listen more and are more sympathetic. Interestingly it’s two female surgeons who are highly skilled and recommended.. When I went back to see the consultant who firstly implanted my mesh earlier this year with my concerns he stated after examining me I had a severe infection of the bladder wall caused by a condition causd by what I eat and drink…he totally ruled out the mesh he had put in being any problem for me. I was put on two months antibiotics then went to see my gp, he was in agreement with me that he doubted this was the case and agreed to refer me to natalia who immediately told mes mesh was too tight and was definitely causing problems for me. I would always recommend a second opinion, lots of consultants do seem to have little knowledge or experience of the mesh after it is implanted. Obviously if there are lots of other issues it can complicate diagnosis etc, if people are referred to a recommended consultant it puts them in a good position to put right as much as possible all the problems. Sorry if I’m going on a bit here…I’m just so concerned that people see someone who can do the best for them. I truly believe had the mesh been left in me I would have suffered for the rest of my life.

    Posted by Maxine | October 24, 2013, 2:05 pm
  146. Good luck with your appointment Joy let me know how you get on wont you?Is your pain a constant one or ,like mine,worse when sitting?I have just bought my second ring to sit on!!!

    Posted by carole jarman | October 30, 2013, 4:12 pm
  147. Hope it goes well on Friday, Joy. I’ll be thinking of you. I’m glad if I could be some help in the situation – none of us want to be here in the situation we’re discussing on this forum, but thank goodness for the amazing women who provide such means of finding out more and sharing. LizRH

    Posted by Liz RH | October 30, 2013, 4:21 pm
  148. Yes good luck joy, thinking of you : )

    Posted by Maxine | October 30, 2013, 4:28 pm
  149. I will let you all know. I appreciate the solidarity. It gives me courage. I am not in constant pain at all. Sometimes I feel like something is sticking into me. All the time I have a vague soreness and lately I have been getting a very tight feeling. At times it starts to hurt like a fresh wound, but mostly it remains just tender.

    Posted by Joy Lloyd | October 31, 2013, 10:47 am
  150. I saw Natalia today. I have NEVER talked to a surgeon with so much compassion and understanding before today. I will have to have the mesh removed. The first plan is an endoscopy to see if the mesh is in the bladder. That should come up on the NHS in two weeks or so. Then I will see Natalia again and plan the removal of the mesh that is too tight and too close to the vaginal wall. Her biggest concern is the frequent UTI’s. I have just completed my sixth course of antibiotics in just 8 weeks. I am feeling very emotional now. I am relieved to have been heard, listened to, examined and diagnosed at last. An underlying anger at the surgeon who implanted this mesh of torture inside me remains, but is not my primary emotion anymore. I am relieved.

    Posted by Joy Lloyd | November 1, 2013, 3:37 pm
  151. Joy am so glad you have been seen by such a lovely consultant and that you are now en route to getting some relief .I am still dithering as I really don’t want any more surgery any where near my bladder as I have had so much over the years,also I am still fighting to get my knee replacement put right ,its been 26 months now and I am still having lots of pain!!GOOD LUCK,keep posting on this site with an update ,wont you ?

    Posted by carole jarman | November 1, 2013, 4:04 pm
  152. Hi joy, I’m so glad you went to see natalia, she will sort you out for sure. I’m 6 weeks since removal and already a different person. My mesh was too tight and too close to the bladder wall and natalia managed to remove and caused no damage to the bladder wall. All the antibiotics are so draining, I took them for months before the removal of the mesh, both to treat infections then to prevent them. They will also make you feel emotional. Try to eat properly and take vitamins to build yourself up for the op. The John Radcliffe are brilliant and I was so well cared for. You are in excellent hands so try to stay positive.

    Posted by Maxine | November 1, 2013, 4:36 pm
  153. Thank you, Maxine. I hold success stories close to my heart and in the front of my mind.
    Carole, I understand what you are suffering with your knee, and your reluctance to have more operations is valid. I had both ankles operated on and back surgery since the tvt, and the amount of pain and recovery is what stopped me from addressing the tvt problem and the uti frequency. Now, I am glad I am going to get help, finally, but I wish I had found help sooner. Don’t be an ostritch about your health. Health issues can get better by themselves, granted, but the kind of health issues we are all talking about here do not get better over time..only worse.

    Posted by Joy Lloyd | November 1, 2013, 7:08 pm
  154. I have been “mulling” (pun to be revealed) over in my mind the reaction, or lack of reaction, from Natalia when, in answer to her question about allergies, I told her that I had developed an allergy to Eugenol – found in cloves. When I lived in India, I had no such problem, and on returning to England, nothing was evident. Sometime after the TVT mesh implant (coincidence just noticed when talking to Natalia), I started to react to cloves in mulled wine. It caused my voice to go high, like sucking on helium. This was hilarious to start with. However, it developed into a problem that has me now avoiding Christmas parties, covering my face when walking past the shop, LUSH, unable to walk through an airport perfume area without an inhaler. I have found that it is the ingredient, Eugenol, and I react to a lesser degree to cinnamon, and thyme, and now to a number of flower pollens. The reaction varies. At times my throat closes up and I can’t breathe. Other times, I simply get a headache. It seems that there is not just a reaction to the ingredient, but a lesser reaction when I am well, and a strong reaction when I am under the weather. There have been times when I though this sensitivity was gone, only to find that a cumulative effect seemed to cause a reaction.
    (I have allergies to a number of antibiotics that I was fine with before TVT surgery.) I am now wondering if Eugenol is an ingredient in the mesh, or involved in it’s manufacture. Does anyone know?

    Posted by Joy Lloyd | November 2, 2013, 10:56 am
  155. Joy, I’m so pleased that you found Natalia as supportive and warm as I had anticipated you would. It is such a relief to be believed and know that she can help you. I have been there and so have many others, as you know.

    Your reaction to eugenol sounds scary. I looked it up – it has been used as an antioxident in plastic – http://chemindustry.ru/Eugenol.php – which could be in TVT mesh but I don’t know. There are other sites that include mention of allergies to the plastic – see meshmedicalnewsdesk.com

    Liz

    Posted by Liz RH | November 2, 2013, 8:05 pm
  156. Hi Joy/Liz
    So pleased you are now getting the treatment you need, Joy. Please keep us updated on your progress if you can.
    Interesting about the eugenol reaction, and thanks for researching it Liz. Truth is, we don’t really know what’s gone into these mesh products. The Bard trial (I think it was) showed that the plastic used should never have been implanted into human beings permanently! There must be all sorts go into these products – plasticisers ie. chemicals to make them pliable, pigments for the blue colour, additives to help lubricate the fibres, possibly fillers to change the properties, elastomers to make it stretchy, stabilisers to stop it breaking down, who knows what? I am only guessing from a little bit of research consulting an engineer I know! But really, this stuff has been proved not to be inert in various studies, so it should never be implanted in women. One doctor told me that the foreign body reaction can go on for years and that’s how the stuff ‘works’ in a way. If anyone reading this can give me exact information on the composition of these meshes, please let me know.

    Posted by tvtinfo | November 4, 2013, 11:41 am
  157. My UTI has returned. Six antibiotics, two horrid reactions, 9 weeks, and still not cured. My GP is now consulting a specialist as there is no other antibiotic she can give me that is not IV, and because I now have blood in the test. I have asked Natalia’s secretary if I could be fast tracted for an emergency mesh removal as I am not going to get well with it inside me. Nor can I have a cystoscopy safely if I am infected. I am waiting to hear from my GP and Natalia, hopefully both today. Lots of pain. Quite a lot of fear rising up as well.

    Posted by Joy Lloyd | November 4, 2013, 12:26 pm
  158. Joy that sounds just miserable. I’m so sorry.

    Yes – do chase up Natalia’s secretary. Gentle persistence can be very effective, combined with details of what you are having to deal with.

    I know it’s scary – I remember it well. At least you are now in good hands.
    Liz

    Posted by Liz RH | November 4, 2013, 12:28 pm
  159. Hi Joy ,am so sorry to hear how awful things are for you now do hope you can be fast tracked for surgery ,keep us informed if you feel up to it .Makes my symptoms sound trivial beside yours as it is only sitting that causes me pain at this moment in time—please God ,no more!!–But as I find standing and walking for long very painful sitting is what I need to do!!Have got myself a private appointment to see Natalia next |Monday so will let you know

    Posted by carole jarman | November 4, 2013, 3:50 pm
  160. None of this is trivial. I am in the infectious disease ward on an IV for a week. If I had had the mesh removed when it was just pain, I would not be suffering from kidney complications. The doc here says nothing should be put in a human body unless it is last resort, and never in a non sterile area. She wants the mesh out as soon as can be, but I sm now too sick for an operation. Ladies, get your mesh removed when it is less serious.

    Posted by Joy lloyd | November 6, 2013, 10:31 am
  161. Oh dear, Joy. That sounds like you’ve got a really bad infection. How true that implants should only be a last resort.
    What will happen now with your cystoscopy?
    Can I ask if you were also retaining urine? Ie because of over tight tape?

    Posted by tvtinfo | November 6, 2013, 8:35 pm
  162. Nope. Retained urine happens when I have an infection, but not due to mesh. The mesh is tight and eroding and trapping bacteria. It has not as yet caused serious functional problems. It is close to the surface of the vagina and sore. I hope to be well soon and have the cystoscopy to see if the mesh is compromising the bladder. I do hope you get the help you need quickly. It sounds really hard not to be able to rest.

    Posted by Joy lloyd | November 7, 2013, 7:40 am
  163. Joy, that is just dreadful. I do hope that the kidney complications clear soon and that you are soon well enough to have mesh removal. No doubt you will be communicating this latest development to see if you can get removal sooner?

    Carole: no symptoms are trivial when they affect basic movements and functions. The fact that this is not due to ageing or wear and tear, but due to a mesh that the UK medical community and regulators fail to acknowledge is dangerous, makes it far harder to deal with. Natalia will listen and be able to respond with her incredible skills and knowledge. I hope you don’t have to travel too far to see her.
    Liz

    Posted by Liz RH | November 7, 2013, 8:18 am
  164. Thanks for your support Liz will let you know what Natalia has to say.I am traveling from Warwickshire so its only about an hour or so,hope we don’t have any hold ups!!!
    Poor poor Joy how really awful for you I do hope you feel better soon,keep smiling!!

    Posted by carole jarman | November 7, 2013, 4:56 pm
  165. Good luck with your appointment, Carole. Hope it goes well.

    Posted by tvtinfo | November 7, 2013, 11:07 pm
  166. I am out of hospital. My blood shows no infection at all now. I am very tired – fatigued. But I do feel well finally. My endoscopy is on the 4th December. The conclusion at the infectious diseases dept of the Churchill hospital is that the mesh is causing an anatomical abnormality inside me that is causing both pain and infection. So, that is that. I expect I will be able to get the mesh removed in the new year. The plan is too stay well.

    Posted by Joy Lloyd | November 10, 2013, 4:14 pm
  167. Glad you are home, Joy. It is a long stay in hospital – glad that you feel better. As you say, you need to stay well now. Take care, Liz

    Posted by Liz RH | November 11, 2013, 7:38 am
  168. Pleased you are now infection free, Joy. Let’s hope it stays that way so you can get your cystoscopy in December and then mesh removal.

    Posted by tvtinfo | November 11, 2013, 4:30 pm
  169. I saw the lovely Natalia yesterday and she said she could feel threads of mesh/tape which need to be removed as she “didn’t like mesh inside that area” so I am waiting for a date now,it will be well into the New year as the waiting list is approx. 3 months but at least I am hopeful of some relief eventually.Just hope I get the same result about my knee at my appointment next week!!! Good luck Joy and stay well

    Posted by carole jarman | November 12, 2013, 5:00 pm
  170. I hope that does not mean my wait will be 3 months. But that is most likely how it will go, especially when a specific surgeon is requested, and is in such demand. Maybe we will end up in a ward together, Carole. I has best get my mind set for Feb/March. I hope you can get your knee and mesh surgery well spaced. That is not an easy juggle. All the best.

    Posted by Joy Lloyd | November 12, 2013, 5:16 pm
  171. I had a TVT-O inserted on 26 Sept 2013 for mild stress incontinence. I have had a lot of discomfort, soreness, jabbing pains since having the surgery. I have paid to see Suzy Elneil in London and have been given a date to have it removed, on 18th Dec 2013… I am now worried about surgery to get the tape removed, particularly so close to christmas. I have been told I will have to come home with a catheter in, and will have to also have a urethroplasty. I am wondering if I am doing the right thing. I am 7 wks post op from the TVT-O insertion and havent gone back to work yet! Anyone have any info on how I will feel following the removal, if I go ahead with it…. Not sure whether to postpone the removal surgery until after Christmas.

    Posted by Emma Co | November 14, 2013, 7:31 pm
  172. Hello Emma

    So sorry you are in this horrible position. I too have had ny TVT removed by Miss Elneil and have nothing but praise for her. You are in good hands. You will be in some discomfort after the surgery and will probably have to take painkillers. If you are having a catheter after urethroplasty you will be provided with a leg bag for day use and a larger bag for night use. Only you can decide when you want the surgery done I’m afraid, and I know Christmas is not the best time of year but at least if you have it done before you can look forward to feeling better in the new year.

    Please report your adverse incident to the MHRA you will find details of how to do this on this site.

    Good luck Emma you will be just fine.

    Ann Boni

    Posted by Ann Boni | November 14, 2013, 8:13 pm
  173. Thanks for your reply Ann. I really dont fancy the idea of having to have a catheter…. why did I ever have this thing inserted in the first place?!! Did you have a catheter following removal by Miss Elneil, if so how long did you have to have it for, and did you also have to have a urethroplasty? Im not sure why I have to have a urethroplasty…. it doesnt seem that everyone who has the tvt removed has one…. do you know much about this, and why it is done? I have a TVT-O. How long were you off work following removal? I havent gone back to work yet following insertion 7 wks ago! Although I must say the pains are lessening quite a bit now….

    Emma.x

    Posted by Emma Co | November 15, 2013, 1:59 pm
  174. Hello Emma

    I don’t think anybody relishes the idea ofhaving a catheter LOL. I have had a partial removal by another surgeon and a full reconstruction of my urethra. I had both a urethral and a suprapubic cather in situ for 6 weeks. I then found Suzy who removed the rest of my tvt,a colposuspension and complete adheolysis of my pelvic cavity. She also dissected a peice of tape from my bladder neck. I only had a catheter for a few days as my urethra had already been reconstructed. Urethroplasty is usually done because the surgeon has to peel the tape from the urethra and it has to be repaired afterwards. I never went back to work as I developed Fibromyalgia. Hope this helps.

    Ann x

    Posted by Ann Boni | November 15, 2013, 2:40 pm
  175. I think before Christmas is exactly the right time to have surgery. A catheter is never nice. I would just go and get it out if it has been a problem from the start. The only reason to wait is if you are unsure about having surgery. If you know you need it, then just go do it. But be sure about it.

    Posted by Joy | November 15, 2013, 2:49 pm
  176. Hi joy I to hope you don’t have to wait 3 months for your surgery as you have been quite ill haven’t you,are yoe feeling any better yet?Natalia also told me I had had 3 lots of mesh used at different times and she hoped it wasn’t those at theback causing my problem as they would be too hard to remove!!! Keep me posted when you get your date.
    Emma I had a catheter in for 4 weeks when a consultant perforated my bladder whilst cutting my tvt which was too tight and I couldn’t empty my bladder properly,its not a lot of fun but you get use to it and at least you don’t have to dash off to the loo!!!Get you tape removed whilst you can,good luck

    Posted by carole jarman | November 15, 2013, 4:39 pm
  177. Thanks for your replies. I’m not 100% sure about having the removal a wk before christmas, with family coming over etc… might see if the appt can be moved to the new year. The discomfort and soreness does seem to be lessening, though Im still getting pains down my thighs. Thanks for your help. I’ll give it some serious thought. xx

    Posted by Emma Co | November 15, 2013, 7:00 pm
  178. The other thing to think about for me is that I’m quite a distance away from London, so I’m not sure how much travelling to and from the hospital will be required after surgery… and if I have any complications with the catheter when I’m at home what would I do…. I’m not sure if my local hospital would help if they haven’t done the removal surgery. Has anyone had to deal with any problems after surgery, who don’t live locally to where they had the TVT removed? xx

    Posted by Emma Co | November 15, 2013, 7:10 pm
  179. Hello Emma

    My district nurse attached to my GP surgery dealt with my catheters as I was four hours from London. You just need to inform your G.P. and they will send a nurse round to your house. I also started bleeding unexpectedly and my district nurse phoned my consultant and sorted it out. Please do not worry about your catheter somebody will always help you in your local area. You will go back to London when Suzy tells you for a trial of catheter removal and finally a post op check up.

    Ann x

    Posted by Ann Boni | November 15, 2013, 7:44 pm
  180. Hi Ann, Thanks for your reply. Thats very helpful info. I am really not looking forward to this, but I think it needs to be done! You had further surgery as well as the TVT removal didnt you? You sound as if you went through a pretty tough time. Glad to hear you’re feeling better now. I cant believe Ive brought all this upon myself, when I only had mild stress incontinence. These things should be banned! Did you tell the surgeon who put the TVT in that you were having it removed in London? xx

    Posted by Emma Co | November 15, 2013, 8:53 pm
  181. Hello Emma

    We were all a bit niave to have these tvt’s inserted into us without doing any research and I have certainly learned my lesson the hard way as you are doing now. I did not tell my implanting surgeon untill after Suzy removed it but I can tell you I had a few choice word to say to him afterwards. He said the usual rubbish like you are unique, this has never happened before etc etc. Please inform the MHRA of your adverse incident as the more incidents we report the more likely something will be done about these meshes.

    Good Luck and if you need any more help you only have to ask

    Ann x

    Posted by Ann Boni | November 15, 2013, 9:13 pm
  182. Thanks for your help Ann. xx

    Posted by Emma Co | November 15, 2013, 11:00 pm
  183. I did lots of research and decided not to have the tvt tape. It was put in against my wishes. However, eight years ago, there was very little to find about the mesh. My decision against it was based on the lack of research rather than any real information. I had no idea it was a mesh, or where it would be inserted, or what it was made of. I think that not a single woman should feel any guilt or blame or self castigation at all. The fault is not ours. We must understand this and get through our surgeries and then fight in whatever way we are able to help other women.

    Posted by Joy lloyd | November 16, 2013, 3:05 pm
  184. The sooner this tvt mesh joke is out there in the public domain the better. I would advise anyone to seek removal in its entirety with one of the recommended surgeons on this site. Natalia price remove my mesh eight weeks ago and on monday I go back to work. I’m very lucky and have recovered well in particular this week I seem more my old self, before the mesh. Unfortunately apart from the physical effects of the mesh implant I’m left feeling different emotionally. I hope that will pass as it has removed, it makes the trust go in people. In many ways it is life changing but I’d never risk leaving the mesh in. It can be a bit of a faff travelling, I travelled from manchester to Oxford for my removal and the journey home was quite funny, I was in my onsie as the pants I’d brought I couldn’t wear. I was catheter free but in the end we stopped at every service station and I put my dressing gowns on and stood behind the car door with a bottle under my dressing gown going for a wee!! It’s worth whatever you have to go through to see the right surgeon. Please try to be positive ladies, there is light at the end of the tunnel : )

    Posted by Maxine | November 16, 2013, 8:51 pm
  185. Hi Maxine, I had a tvt-o inserted on 26 Sept and I am currently waiting to get it removed by Suzy Sohier in London. Ive been offered an appt for surgery before xmas, 18th dec, but I think I will ask if I can wait till after xmas as I have family coming for xmas. It was very sore and uncomfortable from the start – the pain has lessened now but I think I will still go ahead and get it removed. I am worried about the possible incontinence afterwards, and also having to have a catheter. I dont understand why some women have to have catheters after removal and others dont. Ive only had it in since sept but Miss Elneil says she will have to do a urethroplasty as well, and that is why I will need a catheter. I really do not want a catheter in for wks so I cant do anything…. it sounds horrendous, a lot worse than the surgery to insert it… It is making me think twice about having it removed to be honest.

    Does anyone know why some women have to have a urethroplasty and others dont following removal? Is it something to do with the difference between a tvt and a tvt-o possibly?

    Thanks Emma.

    Posted by Emma Co | November 18, 2013, 3:21 pm
  186. Hi Emma, sorry to hear you are having a rotten time.
    I’m unsure re the catheter, why some people do and some people don’t. I honestly feel though that it will be quite a relief to have had the mesh removed and a catheter will although inconvenient be worth it. I’m sure anything you have to do wont be anywhere nearly as bad as you think. I can’t imagine its worth leaving in if you have the chance for removal. I honestly believe short period of discomfort is best in the long run. You don’t know how poorly you could end up being. Obviously fear of the unknown is awful but your consultant is highly skilled. Obviously only you can decide what is best for you. I just knew I had to have mine removed and as quickly as possible. Maybe you should try to speak to the consultant or email her with your concerns.

    I feel a different person, younger, healthier. I admit I had a few weeks feeling poorly but I knew I was getting well and why not the same as before when the mesh was making me so Ill.

    Feel the fear and do it anyway!

    Maxine

    Posted by Maxine | November 18, 2013, 8:05 pm
  187. Hi Maxine, Im booked in for 22nd Jan 2014 for the mesh to be removed. I didnt really want to do it over christmas so Im going to wait a bit longer – hopefully I wont regret waiting the extra month. How long did you have the mesh in before it was removed, and what sort of probs did you have? My email is emmacostello1@o2.co.uk if you could email me? Thanks. Emma.x

    Posted by Emma Co | November 18, 2013, 8:25 pm
  188. Hi Maxine – how was work today?

    Emma – Maxine has written exactly what I would like to say (but said it better!). it’s worth getting the mesh out as the long term is so unknown. There are many women who would pay thousands of pounds for the opportunity to have it out, even with the discomfort of the catheters. You have done well to find a great surgeon – surely it’s worth the nastiness of the catheters in the long run as they are short term. It’s possible that the surgeons do slightly different things but you seen what women have written about Sohier.
    Maxine is right – only you can decide. All of the many many women who I have spoken to that have had their mesh removed do not regret it. Some have slight incontinence but consider that a small price to pay for having the mesh out.
    Liz

    Posted by Liz RH | November 18, 2013, 9:10 pm
  189. Hi Emma,

    After reading your posts I felt I had to respond. I had my mesh out by Suzi (Sohier) Elneil, who I trust implicitly, and I went home with a catheter for about 2 weeks. I was also terrified of the catheter They put it in place while you are still under the anaesthetic, so when you wake up you have the tube already in place with a bag on the end to collect the urine. All you have to do is flip a valve on this bag when it’s getting full and empty it down the loo. You have a long tube so you can lay the bag on the floor at the side of your bed and a short one so you can attach the bag to your leg and can move about. You are not going near your intimate bits or inserting anything yourself. I was also scared of it hurting when it was removed but Miss Elneil has two very experienced nurses on her team and it was over in a second with no pain.

    It is your choice when you have the removal and your Christmas may be spent resting indoors, but in my opinion the sooner you get it out the better, especially as you have not had it in for that long. None of these are easy decisions to take and very very scary and my heart goes out to you.

    Whatever you decide Emma I wish you all the luck in the world.

    Julie x

    Posted by Julie | November 19, 2013, 11:17 am
  190. Hi Julie, Thanks for your reply. I am wondering now whether I should’ve kept the 18th Dec appt to have the mesh removed. I am sore today – it seems to come and go a bit, but I do feel it needs to come out. The catheter was worrying me, and the idea of being poorly over xmas, with a xmas day dinner booked and family coming. Maybe I should have just gone with it and got the thing removed. I rang yesterday and asked for it to be postponed from 18 Dec to 22 Jan, so the dec date may have gone now anyway! Did you have a tvt or a tvt-o removed? There seems to be some difference in how they are fitted I believe. Also did you have a long distance to travel to see Miss Elneil? I live in Preston Lancashire, so quite a trek for me! How does Miss Elneil decide when to remove the catheter – did you have an appt to go back to see her two wks after it was fitted? Did you also have a urethroplasty performed? Sorry for the hundreds of questions, but I am quite worried about the whole thing…..

    Thanks for your help. Emma.x

    Posted by Emma Co | November 19, 2013, 11:32 am
  191. Hi Emma

    It all depends on your home situation – you certainly wouldn’t want to be cooking Christmas dinner or entertaining visitors after a removal because you will be sore (though it’s all manageable) and needing lots of rest for at least 2-3 weeks then taking it easy for the next few weeks after that although you may be able to potter a little around the house and go for walks. You need other people to be looking after you – and your children if they’re young. If you are having visitors at Christmas then it’s probably best you are not having surgery because visitors are very tiring and you would not feel up to it.

    I guess there’s no ideal time for surgery! The main thing is to have someone available for you to take you to hospital, visit you and take you home and then have things in place so you can recouperate especially in the first 2-3 weeks. Can’t help you on the reconstruction – maybe other readers can advise?

    Posted by tvtinfo | November 19, 2013, 1:32 pm
  192. What I don’t understand is why I would need a urethroplasty anyway. I will only have had the tvt-o in for 3/4 months, and other people have had them in a lot longer and had them removed, but not needed a catheter afterwards! I just wondered if the removal of a tvt and a tvt-o are different, hence needing the urethroplasty and catheter after removal of the tvt-o??

    Any ideas on this?

    Thanks. Emma.xx

    Posted by Emma Co | November 19, 2013, 1:39 pm
  193. Sounds like a question to ask the surgeon. She/he won’t know fully until they get in there. But, if they have mentioned urethroplasty, they may already have seen your urethra and decided based on the investigation. The difference between people’s surgeries and experiences are, in part, how long the mesh has been in and how imbedded it is, and also how close to the urethra or how deep in the vaginal wall, or how tight, or how near the bladder it sits. Add those differences to the TVT and TVT-O, and you can see how the operations will vary greatly. It sounds as if you will enjoy Christmas slightly better without the operation. Keep asking your questions, and getting support. It is a worrying thing to have happen, and there are some very kind people on this site. I hope you can get all your questions answered and have a peaceful and happy Christmas.

    Posted by Joy | November 19, 2013, 2:47 pm
  194. Thanks everyone for your help. Joy – Miss Elneil hasnt seen my urethra – Ive only seen her privately in her office for a 15 min consultation, so unless she always does a urethroplasty with a tvt-o removal, Im not sure. I have got a telephone appt with her on 2nd dec so I will ask her all my questions then. I’ll write everything down so I dont forget anything. Emma.xx

    Posted by Emma Co | November 19, 2013, 2:51 pm
  195. Yes, I would ask her. Is it needed? Is it optional? What are the problems likely if you don’t have it v the problems likely if you do? Does it involve an autograft, and where is the tissue from if it does? Also, if there is any other work you need doing, like any tightening for example, ask if that can be included in the surgery. I have a skin tag from a tucked stitch after birth and a couple of other things that I will talk about when it comes time for surgery.

    Posted by Joy | November 19, 2013, 2:58 pm
  196. Yes I will ask her all these things. I also have a skin tag from the birth of my son…. I didnt really think I could mention that – do you think I should?

    Have you not had your tvt removed yet? xx

    Posted by Emma Co | November 19, 2013, 3:02 pm
  197. Hi I would ring up and see if you can rebook if you think you want it sooner. It’s like everything…if you put it off it will pray on your mind anyway and could mar your Xmas. It’s a personal choice in the end. Me being me I was full steam ahead I just had to get it out. It can b scary speaking to the surgeon when you have your consultation but they have to point out the worse case scenario. I had a catheter in hospital and having it removed was a tiny pinch that’s all. I got myself into a frenzy before I had the op…ask liz!! I was so scared! The relief afterwards was amazing I was elated and still am! Please don’t let the fear overcome you. It’s great to talk to other women but we are all different have had differing experiences and also personalities and pain thresholds. I was told I maybe incontinent afterwards, I’m not. After eight weeks I’m back at work full time, albeit shattered but I’m getting there. You may have read some scary accounts of what has happened with this mesh but the upshot is it’s better out of your body than in it. I travelled from rochdale to Oxford and I’d have gone further…Australia even. It’s a slight inconvenience but trust me so worth it. You won’t regret the surgery. Thing is we all feel scared, after all last time we had the surgery it was such a bad thing so that is set in your mind…this is a Good operation to put you right!! You are in the very best hands. So many women need this removing, get yours out while you can. If you can’t get in for your cancelled op go for next appointment and take the bull by the horns and try to be positive. It’s not easy I really do know but u owe it to yourself and ur family to get well. Ps had my mesh in three years.

    Posted by Maxine | November 19, 2013, 7:52 pm
  198. Ps too busy ranting I forgot to answer you! I need a soap box! Yes work is good thanks. Omg getting up at 6 was so hard but felt ok when I’d thrown myself in the shower! It’s a long day but I’m doing well, still get tired easily and I can’t stand for long periods or walk too far as it gets really uncomfortable but I’ve noticed I go around two hours now between loo visits instead of every thirty mins when I had the mesh in. Hope all is ok with you.x

    Posted by Maxine | November 19, 2013, 8:01 pm
  199. Hi Maxine, Great to know that work is going OK – I can well imagine that it’s a really long and tiring day but nice to measure progress with number of trips to the loo! I know that the difference between before and after my mesh removal was quite simply shuffling versus walking because the mesh crippled me as it twisted against nerves in my pelvis.
    Thank goodness for the surgeons who can safely remove mesh. BUT I only know of two in England, and I have been posting on forums for the last 2.5 years. It is outrageous that so many surgeons insert it without any warning of the life devastating consequences it can deliver, and so few can safely remove it. It’s very difficult for people like you, Maxine, and Emma, and Carole and many others who have to travel the length of the country to get to one of the two specialists. These two surgeons are snowed under with the number of women needing support in mesh removal and mental adjustment. There is no doubt that mesh causes far more than physical pain: it can cause immense psychological damage in lots of different ways – and yet we only have each other to provide support because of course the medical fraternity are either not interested or just don’t have time.
    Does anyone know of other specialists who can safely remove mesh in addition to Sohier el Neil or Natalia Price?

    Posted by Liz RH | November 20, 2013, 10:58 am
  200. Am just coming in again to add my support to you all,I have just spoken to my GP who will do the referral that Natalia asked for so that she can put me on her NHS waiting list ,have also just been told that I need to have my knee replacement done again and the wait for both surgeries is about the same —-different hospitals and towns of course!!!!—Don’t imagine my surgery with Natalia will be as bad as for those of you who have had TVT s removed completely as it is fragments of the mesh I had cut that she can feel but I would be keen to know how long hospital stays you have had Maxine and any one else who has posted earlier also how incapacitated you were after and for what length of time? I know we are all different but its just good to have a “ball park”idea!!I did a lot of gynae nursing but tvts weren’t done much then

    Posted by carole jarman | November 20, 2013, 4:54 pm
  201. hi Carole,
    Poor you – two lots of surgery! No fun. But glad that your GP has referred you to Natalia for the waiting list. She removed my TVT in May 2011 and I wrote a few notes for future sufferers that I’ve sent out many times – sadly, because that reflects just a few of the many women who need help with their mesh. If you want to have them, email me on lizrharris5@gmail.com
    I’m sure when you did your gynae nursing the surgeons didn’t rely so much on mesh. It seems that they can’t use other procedures as they don’t have the skills in the way that they used to….

    Hope you get a date for removal soon, Take care, Liz

    Posted by Liz RH | November 20, 2013, 6:11 pm
  202. Hi

    My advice would be to take it one step at a time, have the surgery and take all the advice given from the consultant. I went in on the Friday and came home Tuesday. I have had eight weeks off work and for the most part spent that lying around. I did get an infection after the surgery, well two wks later but after antibiotics this cleared. I have rested well, eaten well, taken vitamins and slowly I started to do every day things. I wouldn’t think that far ahead to be honest, I’d just get the surgery out of the way especially as the surgeons are so busy. I’ve done three days work and tho I’m tired I’m fine. Everything after surgery is the road to recovery and none of it is awful just recovery from surgery and all that involves. I expect waiting lists will get longer and longer. My view is the apprehension of the surgery was far worse than the reality. Yes it hurt but not unbearably and to have that rotten mesh gone is truly liberating. You will agree when you look back. I was in such a state before removal, felt ill and my head was a complete mess with worry, now I look back and think I wish I’d not got myself so worked up. We are bound to but honestly try to trust. I know we have all been let down by surgeons but it won’t happen this time. I can feel my life coming back to normal at last after a long time feeling so poorly. My thoughts are with any woman suffering this way and I feel so passionate about this situation we have been put in. Nine weeks ago I was at my wits end…today I’m happy and healthy. I’m very lucky I know that.

    Posted by Maxine | November 20, 2013, 10:23 pm
  203. Hi ,reading comments from you girls that have had surgery already is making me rethink my “after care”as I had thought I would just be sleepy after a GA and of course a bit sore but be up doing normal things once I got home!!!
    Still maybe as I am just having –removal of exposed vaginal mesh –and a small prolapse repair I wont feel as beaten up as some of you.Am glad my hubby will be retired by then any way as he will be able to see to the dogs and other animals!
    Joy if you are still reading these posts don’t forget to let me know when you get your date.

    Posted by carole jarman | November 23, 2013, 5:29 pm
  204. Well my surgery for tvt-o removal is 22 Jan, so a bit of a wait but not too long! After giving it further thought I tried to get 18 Dec which I was first offered, but it had gone!! So I’ll just have to wait a bit longer. I am so sick of the constant soreness – it isnt so much pain as soreness in my lower abdomen and the surrounding area. Will be happy when its out, though not looking forward to the trip to and from London with catheter in situ!!! Emma.xx

    Posted by Emma Co | November 23, 2013, 5:43 pm
  205. will let you all know when i get a date. first up, cystoscopy on the 4th dec.

    Posted by Joy | November 23, 2013, 5:46 pm
  206. Are any of you on Natalia Prices NHS waiting list and if so have you a date as yet?Am keen to know how much notice you get as here,in Rugby it is only a couple of weeks or so.Have any of you taken the medication Pregablin as I have just been prescribed it having found that even the highest dose of Gabapentjn fairly un helpful with this sorenessAm a little worried as one of the common side effects can be weight gain,dont need that as well!!!

    Posted by carole jarman | November 25, 2013, 3:07 pm
  207. I am on a waiting list. No, I have not heard a date yet. I have had to wait longer for the cystoscopy than the two weeks Dr. Price said. And I had to chase the appointment. I will not have an operation date until the cystoscopy. My experiences with the NHS is that they do push you to the 18 week wait, unless you are an emergency. That is 18 weeks from your first visit with a consultant. I suggest you see when your first consultant visit was, and look up 18 weeks on your calendar, and expect the operation to be in that week. But you will have to chase appointments and ask if you have not heard anything, and remind the appointment people of the 18 week time.

    Posted by Joy | November 25, 2013, 3:32 pm
  208. As to painkillers – I have a lot of experience with those. My advice is, first, to do what your GP thinks best. Along with that, I suggest you try taking paracetemol in the maximum amount allowed through the day in a 24 hour pattern. Paracetemol is usually tried insufficiently, and is the best of all pain killers.
    If possible, avoid the other pain killers as they all have their side effects. Weight gain is a serious side effect and best avoided. Pregabalin and gabapentin are known for weight gain. The epilepsy drugs have nasty side effects. The anti-inflams are not much use unless it is directly inflammation that is the main pain, and then then can harm the stomach lining. The anti-depressants used as pain killers can cause depression and change the balance of the chemicals in the brain, so long term is not a good idea if you don’t need them for depression. The opiates and opiods are fairly good if you use them short term and combine them with paracetemol. Tramadol is an excellent short term drug that is best taken in slow release form. If you need something to take the edge off, just until the operation, that might be the best – especially since it is what they will give you post operatively.
    Learning how to manage pain without lots of pain relief is best, if you can. I am on 50 mg slow release tramadol at night, and paracetemol as needed up to the maximum amount. It takes away most of the pain, and the rest I can manage. (tramadol can cause nausea when started, but it passes. Better a passing nausea than weight gain.)
    Talk to your GP, and talk to Dr Price about pain relief. Please, don’t get stuck in the side effect cycle – taking one drug to allieviate the symptoms of another, and so on.
    The absolute MUST if you are in your late 40′s or older is the eostrogen pessary that will help your vaginal health. That in itself has been the single most helpful thing for the vaginal mesh pain. Dr. Price will prescribe it if your GP does not.
    I don’t want to turn this thread into a hippy site, but I have found a lot of help with tea mixtures. I am drinking a mix of dandylion and cranberry with some burdock, cornsilk, marshmallow and nettle added. My daughter made it up for me when the kidney infection was bad, and it cleared my kidney. Bacteria remained in my bladder, so it is not a cure all, but it was helpful, and I will keep drinking it. I can send you some if you want. (It is not a pain reliever, of course, which is what you were asking)
    I am still hoping we can meet at our operation times. It would be great to be on a ward together. I wonder if it is worth asking?

    Posted by Joy | November 25, 2013, 3:54 pm
  209. Hello Joy

    Are you medically trained and qualified to give opinions about which painkillers patients should take to eleviate their pain?

    Ann x

    Posted by Ann Boni | November 25, 2013, 4:13 pm
  210. Hello All

    I was asked today if Dr Sohier Elneil could help someone suffering from mesh complications involving more than one transvaginal mesh implant. Knowing that this may be challenging even for the most experienced of surgeons, I contacted Ms Elneil and she was happy to confirm that she was willing and able to help anyone in need who has mesh/tape for stress urinary incontinence (SUI): TVT, TVT-O or TOT and possibly the most problematic of all devices for pelvic organ prolapse (POP) mesh.
    Along with Dr Natalia Price who specialises in TVT explant it is heartening to know that there are at least two surgeons doing their level best to help women harmed as a result of TVM.

    Ann x

    Posted by Ann Boni | November 25, 2013, 7:59 pm
  211. Ann’s comments above are really good news. Well done for keeping communications open and awareness growing to prevent other patients falling victims to surgical mesh implants what ever size or shape it’s all bad for the living body. We are truly blessed to have two good surgeons down in this part of England. Well done. IH. x

    Posted by Ingrid Hardacre | November 25, 2013, 10:17 pm
  212. Looking at people on here speaking about waiting times on the NHS surgery list – I must say that from initially seeing Miss Sohier Elneil at her private clinic on 1 Nov (I paid to get a fast appt) – she arranged for me to have an NHS telephone consultation with her on 2 Dec (rather than having to make a second trip to London from Preston, where I live) and offered me surgery to remove the tvt-o on the NHS on 18 Dec, which was very quick I think. I actually turned down the surgery on 18 Dec, which I now regret, and my surgery will be on 22 Jan, 2014….. I must admit I did chase up the appts by emailing both her and her secretary, which I think sped up the process considerably. I can’t complain at how quickly it has all been arranged for me. I had the tvt-o inserted at my local hospital in Preston on 26 Sept (bad decision), and hopefully on 22 Jan it will be removed. I do feel I am in safe hands with Miss Elneil, who is a very compassionate understanding lady. I just hope the removal surgery goes well, without complications.

    Emma.x

    Posted by Emma Co | November 25, 2013, 10:48 pm
  213. No. I am absolutely NOT qualified to advise about pain medicines. I hoped my post was clear that a GP should be consulted. I also wanted to make a point that pain medicine in any form is best avoided if possible. I am vey sorry to have misused this forum to give advice.

    Posted by Joy lloyd | November 26, 2013, 1:04 pm
  214. Joy – I found your information very helpful, and it wasn’t taken as professional advice, just as a viewpoint from another lady who has been suffering with mesh pain, and what has helped you.

    Emma.x

    Posted by Emma Co | November 26, 2013, 1:13 pm
  215. Hi Emma (sorry for the late reply), I also paid to to get a an appt quickly with Miss Elneil and didn’t wait long after that to have the mesh removed. Yes, I also had a long journey home from hospital and had a couple of pillows to sit on and wore a big loose dress, which helped! When you get home don’t try to do too much, it’s really important that you rest well. My recovery has been very slow but at least hopefully all the mesh is out. I did have an appt to go back and see Miss Elneil 2 weeks post op and I also had the catheter out. I think the catheter gives your poor bladder a rest! In answer to your other question, yes I did have the urethraplasty. What’s the difference between the tvt and tvt-o, I’m not really sure but it would be interesting to compare and see if many of us have the same mesh. I wander whether TVTINFO knows anything about that?

    Posted by Julie | November 26, 2013, 1:24 pm
  216. Hi Julie, Thanks for your reply. Its good to hear that you only had the catheter in for two wks after removal surgery. I’m really not looking forward to that. I emailed Miss Elneil about the urethroplasty, and she wrote to me explaining that every patient of hers who has a tape removal has to have a urethroplasty included in their therapeutic range. This is because sometimes the tape takes away part of the urethral wall and a urethroplasty is needed to make its integrity intact. So that sort of explains that. It is obviously something she does with every patient. How long did you have your mesh in before you had it removed? It would be good to be able to email you if poss, as you had the surgery with Miss Elneil also?

    Many thanks. Emma. x

    Posted by Emma Co | November 26, 2013, 1:32 pm
  217. Hi Joy many thanks for all your thoughts ,firstly how did you chase up NHS appointments etc as I only saw Natalia at the Manor private hospital and as I am not local to Oxford don’t know all the “channels”to go down like I do here where I use to nurse?Secondly I agree with lots of what you say re painkillers I do hate taking Gabapentin but am fairly well past the side effects stage now apart from sleeping really well—which has to be a bonus!!—even tho I am on the maximum dose, I eat very carefully most days and weigh regularly so as to keep a check on my weight I have never given a thought to taking Paracetamol as well but may give it a try I have taken Tramadol in the past but did find I needed to take an antiemetic as well as I got quite sickly If you wanted to email me I would let you have my
    address next time?
    Julie,glad to hear you are on the mend were you in hospital for long?Am afraid I don’t know the difference between
    the tapes either but am sure someone on this site will
    Emma I see you to chased up treatment on the NHS did you find your surgeons secretary via email ?Am sure your surgery will be straight forward as your tape has been in for such a short time,mine was in for about 3 years before it was cut ,during which surgery my bladder was perforated hence the catheter for 4 weeks it seems that the remains of this tape is what is causing my pain

    Posted by carole jarman | November 26, 2013, 4:26 pm
  218. Hi Carole, Yes I found Miss Elneil’s email address on the internet, and initially I emailed her direct. She emailed me back (late on a sunday night! so obviously a very caring woman) and said it would probably be best to see me – I then made a private appt to see her pretty quickly. I never go through the ‘correct’ channels – I feel you get where you want to go much quicker that way! And most consultants are very nice understanding people who will respond to a direct email I have always found.

    Emma.x

    Posted by Emma Co | November 26, 2013, 5:02 pm
  219. There are two ways to chase up your appointment since you saw Natalia privately as a first visit. One is to go to your GP and ask them for the correct appointment phone number. Second, and easiest, is to phone Natalia’s private secretary.

    Posted by Joy | November 28, 2013, 9:05 am
  220. Hi Emma, Joy and ladies, in answer to your questions I had the mesh in for 18 months prior to removal and was in hospital for 5 days. I’m not without problems but not having the terrible feeling of something constantly stuck halfway inside me is the biggest relief, I don’t think I could have gone on much longer as it drove me utterly crazy. I’m trying very hard to rebuild my life back to some form of “normality” whilst trying to tackle some ongoing health issues, but I know I will never be the same and that’s a very hard reality to face. I really feel for my poor husband and what he has had to endure with all this, it’s been really tough on him. This stuff has got to be banned, I find it unbelievable that they are still putting it in innocent women as we speak. It’s made me a very angry person I’m afraid to say.

    Posted by Julie | November 28, 2013, 1:55 pm
  221. Hi Joy, did you have other issues prior to surgery to insert the tvt or have all your health issues come from having this tape in for 18 mths? You were in hospital quite a few days – 5 days is a long time isn’t it – I’m quite worried about the removal surgery…. I’ve been told I will be in hospital 2 nights. Were you quite unwell after the surgery, is that why you stayed longer? I’m hoping that once this tape is out and I start to heal things will go back to how they were?! Particularly as it hasn’t been in long….. I hope that will be the case! I only had mild stress incontinence prior to this, which I can cope with… xx

    Posted by Emma Co | November 28, 2013, 2:10 pm
  222. Hi Emma, tell me about it, I too also only had mild stress incontinence! Yes, I think it’s a good idea that you email me, if TVTINFO could let you have my email address that would be great please.

    Posted by Julie | November 28, 2013, 2:20 pm
  223. I have had the mesh in 8 years. It has always been a problem, but has become worse since menopause. In answer to your question about other health issues – yes and no. No, I have not had health issues other than the mesh related infections, the last being the one that put me in hospital. But again, yes, I have had injuries to my back from a fall, and to my ankles from a congenital fault that is now fixed. Those two things are not health issues, but mechanical ones, but I have had to learn to manage pain over the last 11 years. Both my back and ankles are now not a major issue.
    I did not stay in hospital overnight after having the mesh put in. I have not had it removed yet. I was in hospital for 5 days recently on an IV antibiotic for a bladder and kidney infection.
    Don’t be concerned about a stay in hospital. You will be in until they are sure your pain is controlled, you are free of infection and you can use the toilet. For some it seems that means going home with a catheter. For others, the goal might be to keep you in hospital until you could go home without a catheter. The differences would be entirely dependent on what exactly they had had to do inside you.
    Don’t worry. You will be in good hands the whole way through. And it is very probable that you will be, as others have found, less incontinent after, and fully restored sexually. That will be the aim of the surgery, and there is no reason to think that you will be worse off.
    I know you trusted the surgeon who put the mesh inside you, and that now it must be hard to trust that taking it out will be okay. But, I think you can trust your surgeon to take it out safely and to get you back to a normal life. In a couple of years from now, you might even look back on all this as a distant memory. Unless, that is, you become an anti-mesh campaigner!

    Posted by Joy | November 28, 2013, 2:39 pm
  224. Hi Julie… Who do I contact for your email address?! Joy – I think we should all be anti mesh campaigners, all us women who know how bad it is… Do you get pains down the backs of your thighs and buttocks? Also soreness vaginally? I seem to have constant thrush at the moment also! Horrible horrible stuff! xx

    Posted by Emma Co | November 28, 2013, 2:47 pm
  225. Hi Julie
    I will sort some exchanging of email addresses where requested but this may be later or tomorrow. Please keep contributing to this site too now and then if you can.

    Posted by tvtinfo | November 28, 2013, 4:44 pm
  226. Hi TVTinfo could you please send Joy my email address when it is convenient please as we may well be in hospital at the same time.I have found this site so very helpful ,even tho I am recently retired from nursing I haven’t found any
    one with any info on all our problems
    Emma I to have a lot of vaginal soreness—-my poor hubby hasn’t been near me for years!!!— I have to sit on a rubber ring most times and am only really comfy when lying down .I had my tvt cut about 6 years ago as I couldn’t empty my bladder but have 2 other lots of mesh from previous surgery which will be too hard to remove so I am wating for the exposed fragments of the cut tvt to be removed!!!Oh the joys eh?!!!

    Posted by carole jarman | November 28, 2013, 4:58 pm
  227. Hello Carole

    You really have had a terrible time of it your poor lady. I too have had a lot of vaginal soreness. I was only comfortable lying down as well you have my utmost sympathy. Unfortunately a lot of us mesh injured patients are unable to have sex and that in itself creates tension between yourself and your partner. May I ask you what the other two meshes were for Carole? Are you sure that they are not causing the problem?

    Ann Boni x

    Posted by Ann Boni | November 28, 2013, 6:17 pm
  228. Hi All, Thought it may be helpful to pass on this bit of info….. I am waiting to have surgery with Miss Elneil on 22 Jan in London to have my mesh removed. A couple of wks prior to the surgery a pre-admission appt is needed. As I live in Preston, Miss Elneil has said her pre-admission team will look into whether I can have this done locally at my doctors surgery, to save me the trouble of travelling all the way to London. I thought it may be helpful to tell you about this, as it may be worth asking if you can do this if you have a long journey to make.

    Emma. x

    Posted by Emma Co | November 28, 2013, 7:20 pm
  229. To Joy – Hi
    I am in Oxford on 4th December 2013. Would you like to meet with me , as we are both mesh sufferers? My removal was 2 years ago under Ms N Price, JR. Tvt info can give you my contact details.
    Ingrid Hardacre

    Posted by Ingrid Hardacre | November 28, 2013, 11:42 pm
  230. Dear tvt info,
    if Joy would like my details, I would be happy for you to pass on my details. Thank you. Ingrid H.

    Posted by Ingrid Hardacre | November 28, 2013, 11:43 pm
  231. Hi Ann ,thanks for the sympathy.Mesh was used on me twice before,both times for pelvic floor repairs ,one front ,one back .Am not too sure of the dates now but roughly 2002 and 2007.Natalia is not sure what is causing me the pain at the moment but these exposed threads that she can feel are all she can remove—hopefully!!—the others would be far too difficult.Did you take/use any thing for your soreness?I have used an oestrogen cream for a couple of years now and take 3600mgs of Gabapentin a day,the maximum dose ,which doesn’t do an awful lot
    Remind me,have you had you tvt removed already?
    Emma thanks for the tip re pre op assessment as I live about 1hr 30 mins from Oxford and the John Ratcliffe is apparently awful for parking so I may try that when my turn comes.Good luck with your surgery

    Posted by carole jarman | November 29, 2013, 3:22 pm
  232. Hello Carole

    Yes I have had my TVT removed by Ms Elnei in February 2012. I was unable to use oestrogen cream as it was contraindicated for me due to stong history of breast cancer in family and I also have had a heart attackl. I have tried gabapentin but too many side effects for me. Nerve pain is horrible and never ending you have my greatest sympathies. Have you thought about going to see Ms Elneil as she can help with anterior and posterior mesh removal although Ms Price is a good surgeon and can remove tvt. It would be really helpfull in you case to identify the mesh that is causing the problem.

    Take care and I hope that everything goes alright for you

    Ann x

    Posted by Ann Boni | November 29, 2013, 3:42 pm
  233. Hi Ladies
    Joy, I have emailed you Carole’s and Ingrid’s email addresses via email as they requested.
    Emma and Julie, I have emailed you each other’s email addresses as requested.

    Please keep posting updates if you can!

    tvtinfo

    Posted by tvtinfo | November 29, 2013, 7:27 pm
  234. Carole
    I was coming from much further afield and was given my pre-op checks the day before my surgery at the John Radcliffe Hospital. I then went back to the hotel the evening before the surgery because I felt that I would be too nervous staying in the hospital the night before the surgery – the nursing staff had a bed ready for me which they showed me but were happy for me to go back to the hotel for the night and return very early to the ward the next day ie the day of the surgery. It was much more distracting going out for a pub meal with my partner instead of lying in a hospital ward worrying!

    It sounds awful having two meshes giving you problems. I do hope that you can get some relief. Did you enquire about full removal? I understand Suzy Elneil is experienced with many types of mesh.

    Posted by tvtinfo | November 29, 2013, 7:35 pm
  235. Carole, the email I was given for you has been sent back by the server. Ingrid, I sent you an email, which seemed to go through.

    Posted by Joy | November 30, 2013, 11:23 am
  236. Joy I don’t know why my email should be wrong if you like you could ask TVTINFO to send me yours then I could
    email you ?!!!
    TVTINFO I am now reading about Suzy Elneil so may be I should have chosen her But I went for Natalia as Oxford was so much easier to get to—-in theory!!!—than London ,I wouldn’t like to now to not give her a chance if I don’t get any relief post op I will have to think again As to full removal well I think as my tvt had been cut 7 years ago that all these threads are from that and that was all she seemed concerned about.I intend ringing her NHS secretary on Tuesday ,when she is back from leave ,to make sure I am on her waiting list so I will ask how I can get in touch with Natalia pre op to ask some questions that I forgot
    I can see now why my email didn’t go thro as there is a letter wrong I will rectify this so could you please send it to Joy again.Thanks !!1

    Posted by carole jarman | November 30, 2013, 5:22 pm
  237. Joy ,just a thought for you as you to went down the “private” first consultation with Natalia I believe ?I rang the waiting list office today to see just how long the wait was ,only to be told that the girl couldn’t find me on the list!!!Am told this is probably a delay between private and NHS but I intend pursuing it before I get overlooked all together !!
    Would love to get it all over with privately but know that it would cost in excess of £5000 and that’s if all was quite straight forward.May well be worth your checking for youself if you haven’t done so

    Posted by carole jarman | December 3, 2013, 4:09 pm
  238. Please give me the phone number to call for appointments!!!! It would be my luck to be lost and not listed!

    Posted by Joy lloyd | December 3, 2013, 4:44 pm
  239. Cystoscopy done. Shows no mesh in bladder. Shows badly infected bladder wall. Need MORE antibiotics, and for a long time. I am trying one by mouth this week, but will be back on IV if that does not work. I am shocked at the amount of infection that is entrenched as si am not feeling symptomatic. Mesh removal can’t happen until I am infection free. I am looking at March or April.

    Posted by Joy lloyd | December 4, 2013, 5:20 pm
  240. Oh dear Joy, good news and bad news in a way.

    Hope that you can get the infection cleared do you can have your removal.

    What is causing the infections?

    Posted by tvtinfo | December 4, 2013, 11:48 pm
  241. Hi Joy,am so sorry you are having so much trouble just hope the oral antibiotics do the trick and you are not back in hospital for IV The number I used is 01865231571 which is the gynae waiting list.I did speak to a girl yesterday who told me I was being added to the list and she would ring me when it was done,but I will wait and see!!!When your turn comes will you be able to get to the JR for a 7am admission or go the night before?

    Posted by carole jarman | December 5, 2013, 3:58 pm
  242. Hi All, Can I ask, does anyone get pain in their buttock area and down the back of their thighs? Im getting it in my left buttock and down the back of my left thigh. I never had these pains before the tvt-o was inserted!! Emma.

    Posted by Emma Co | December 5, 2013, 6:10 pm
  243. Dear Emma,
    so sorry to hear you are experiencing the typical pains that many mesh victims are struggling with. Hope you have informed your consultant, so that they know you are struggling and ask them to report your adverse reaction to this implant and do remember to report your adverse incident, yourself, to the MHRA. Tvt info has their contact details on this blog site. Make your voice heard by looking at the petition site tvt-mum/petition and consider signing it and ask friends and family to do the same. Only through strength in numbers we can bring about change to have these mesh products taken off the market. We remember Nelson Mandela, who fought for the right to be heard and leading by example how to bring about change.

    Posted by Ingrid Hardacre | December 5, 2013, 11:43 pm
  244. Hi Emma, oh I do sympathise. Yes, I started with the buttock, thigh and leg pain after the mesh was put in and It makes me wander about the possibility of mesh erosion on your left side with you saying it’s on your left. I’m obviously no medical expert and just going on my own and others experiences that I know of but it may be worth mentioning it at your next appointment and they could make a note for Miss Elneil so she is aware.

    Posted by Julie | December 9, 2013, 1:18 pm
  245. Hi Ann.I see in an earlier post that you said you had contacted Miss Elneil with a question about multiple mesh ,I just wondered how you were able to do this?I know I am Natalias patient but if my problem is not caused by the fragments ot tvt left in me then I don’t think she can help me further and don’t know if she would refer me on to someone else
    It doesn’t appear as tho any one else on the site has had trouble with multiple mesh or tape or indeed from having tvt cut

    Posted by carole jarman | December 9, 2013, 4:10 pm
  246. Hi Julie, The pain I have is sort of localised to a point that feels like its in the bone of the buttock, near to incision site in the top of my inner thigh – its very odd, and Ive had it about a week – I can only think it must be pulling on a nerve or something in that area. Also down the inside of that thigh, but its the pain in the bone area that is most uncomfortable particularly when Im sat down at work. I have emailed Miss Elneil about this, and Im having the TVT-O removed on 22 Jan, so cant do much before then, only take pain killers. I sent you an email to the email address tvt info gave me…. have you not received it? Emma.xx

    Posted by Emma Co | December 9, 2013, 5:33 pm
  247. Hello Carole

    I have Ms Elneil’s e-mail address and sometimes let her know what is going on in the world of mesh. I asked her the question as another lady wanted help with prolapse mesh. I’m sure Miss Price would be delighted to refer you to Ms Elneil especially as you have multiple meshes that she may not be able to facilitate a removal for. I had a partial removal by another surgeon who said it was too dangerous to remove it in it’s entirety before Ms Elneil removed the rest of it. It’s best to get a full removal if possible then there are no further repercussions. Take care and if you need any further info then please contact tvt info for my e-mail address.

    Ann x

    Posted by Ann Boni | December 9, 2013, 5:55 pm
  248. I am back in hospital on an antibiotic IV drip. I have a bacteria that has become resistant over time, and my body has become intolerant to antibiotics. The result of the many UTI’s following the TVT has been that I am now very ill with an infection set in deep in my bladder wall. I had thought I was well, but the cytoscopy showed otherwise. So I am in the infectious diseases ward, and here I stay until they can be sure I will not develop another allergic reaction. When I can go home, it will be to come in daily for IV treatment. I will need antibiotics until and after mesh removal surgery. I contracted this infection in July and, although urine tests came clear several times, infection returned in days, showing what we now know – that the infection is deep in the tissues of my bladder. The mesh itself is causing less pain since being prescribed hrt pessaries, since that has helped the dryness. I would be tempted to live with it in, if it were not the cause of the infections. I am also aware that I cannot use hrt for a lifetime, and so the mesh will again become tight and painful when the pessaries are stopped. My heart goes out to all who are suffering in the many varied ways I read about due to mesh. Be brave and determined, and stay as well as you are able, and I wish for you all what I hope for myself – successful surgery and a post mesh life soon.

    Posted by Joy lloyd | December 10, 2013, 3:26 am
  249. Hello Joy I don’t come on here very often due to time, but I do read most of everyone’s post to see what is going on. I just want to give you some light at the end of the tunnel. I am 10 months post op mesh removal now. What you are going through is dreadful, and we all know the pain and fear. My mesh was in 6 years and Suzi El Neil managed to remove nearly all of it. All I can say to give you hope is, yes it was difficult at the time but 10 months on I am a new woman again. I had a hysterectomy at the same time and it took quite a while to recover. I am quite urine incontinent and have to wear a pad but it doesn’t really interfere that much with daily life and is manageable and is a small price to pay to now be almost totally pain free. Hang on in the Joy and all you other ladies, trust Suzi or Natalia and get it removed in my opinion. The mesh will always be a foreign body and the source of infection and inflammation. Once it is out you have the hope of returning to a relatively normal life. Lots of Love to you all, Lizzy x

    Posted by Lizzy Blanch | December 10, 2013, 9:38 am
  250. Hi Emma, no I’ve not received your email so I’ve sent you one, let me know if you get it?

    Posted by Julie | December 10, 2013, 1:08 pm
  251. Hi Ann ,thanks For replying,when I asked one of my GPs recently about a referral back to the urogynaecologist who put all this mesh in me she said that after 7 years it would be a big problem to remove any of it due to tissue growth etc and that all my nerve endings would be upset even more .When you next are in touch with Miss Elneil would you be a darling and ask if that is true? I am hoping that when I get my surgery date with Natalia that Iwill be able to chat to her about this if her surgery doesn’t help my pain Ta!!!

    Posted by carole jarman | December 10, 2013, 4:30 pm
  252. Hi TVTINFO would you forward Anns email address to me when you have a mo please,you will see in an earlier post that she has okd this .Thanks

    Posted by carole jarman | December 10, 2013, 4:32 pm
  253. Hi Carole, tissue grows into mesh within 2 weeks of insertion and from what I’ve read and heard, the length of time is not a problem in cutting out the tissue. Unfortunately it’s a lot of cutting tissue whatever the length of time after the initial embedding, but it won’t be worse for you after a longer time. Conditions that can make removal harder are when the mesh has been partially cut so it migrates and moves. The laparoscopic techniques that Natalia uses enable her to see through a magnifying lens and then use the mechanised tools to remove the mesh. Ann is better placed to tell you how Suzy works to remove the mesh. Both surgeons are renowned for their skill and understanding but Natalia can only remove TVTs.

    I know that it’s a scary and difficult time trying to weigh up all the options and make an informed decision.

    Posted by Liz RH | December 10, 2013, 4:37 pm
  254. Joy – really sorry to see that you are back in hospital – it’s terrible for you. Just hope that you can get better as soon as possible. The mesh issues will contribute to so much of what you are having to cope with. Thinking of you,

    Posted by Liz RH | December 10, 2013, 4:38 pm
  255. Hi Lizzy I see from reading your post that you had had your tape in for a long time to,was it a TVT or did you have mesh for prolapse repairs as I have had?I had a hysterectomy long before all this mesh surgery was done .Don’t know what area you live in so if it isn’t local to London did you find the travelling for youself and visitors difficult.You say you don’t post on the site often due to tlme restrictions so I will understand if you don’t reply but it would be good if you were able to as quite a few of the girls waiting for ,or having had surgery seemed to have had their tape in for shorter lengths of time

    Posted by carole jarman | December 10, 2013, 4:40 pm
  256. Hi Emma,
    Unfortunately a number of us have suffered buttock pain – and some still have it after removal if the nerves are damaged. Ingrid makes really good points about reporting to the MHRA and adding to the petition site. I do hope that things improve but I guess that you are feeling pretty nervous about the removal. It’s great that you have got booked in so fast. Liz

    Posted by Liz RH | December 10, 2013, 4:40 pm
  257. Hi Carole
    I’ve emailed Ann’s address.

    Tvtinfo

    Posted by tvtinfo | December 10, 2013, 4:50 pm
  258. Hello Carole

    I had my tape in for nine years when Ms Elneil removed it. Please e-mail or phone me for further info. TVT info has emailed me with you email address and I have e-mailed you back with my phone number and email address. Thank you TVT Info for putting Carole in touch

    Ann x

    Posted by Ann Boni | December 10, 2013, 5:53 pm
  259. Just to say, all the pain and fear of continued pain post mesh is understandable. However, from where I am sitting, in a hospital bed, it is not the only consideration. If mesh is, as it seems from stats, a high cause of urinary infections, then removing it is important even if there is likely to be pain remaining. Pain and healing are varied and not easy to quantify. It does seem that the body and brain can heal and adjust over time, and pain for a year or two might be all that needs to be endured. My thoughts are, if you have any problems with mesh, they won’t get better. If you are lucky enough to be problem free, great…I hope you stay that way. Not everyone has problems with mesh. If you don’t, enjoy life. If you do, remove it and get through it, report it, and then enjoy life.

    Posted by Joy lloyd | December 11, 2013, 10:56 am
  260. Hello Joy, just wanted to say that I completely agree with everthing you said in your latest post and I hope you are feeling better very soon x

    Posted by Julie | December 11, 2013, 11:17 am
  261. Hello Carole, yes my tape was in for 6 years and it was a TVTO which is very difficult to remove. I did see a homeopath before hand and I truly believe that helped calm the inflammation down. I had the same symptoms, pain in buttocks, legs, terrible burning pain which was excruciating. I had bowel problems for 4 years where my stomach had swollen like I was pregnant and was so bloated that I could hardly eat. Brain fog.. which I think was all down to the inflammation. I had prolapses which had been repaired a few years before hand (I still have slight prolapses). Suzi is my opinion is fantastic and if it is possible to remove it I believe she is the best option. I am not going to say that I wasn’t in pain afterwards because I was and I seemed to have nerve damage for a good 5 months afterwards, but…. now 10 months on I don’t really have hardly any just a bit if I do too much or get too tired. I do suffer from urine incontinence and I could go back to see Suzi to look at the options but to be truthful I just don’t want any more surgery and am prepared to just live with it and my tena lady! lol… I had private health care so was in the London hospital we live in Bedfordshire and my husband used to travel up to see me, or I took my computer in and skyped my friends. To be truthful I was so tired, and on so many pain killers that I didn’t really want visitors I just wanted to sleep and rest and that is probably the best thing you can do.. as long as you have a phone or maybe can Skype its probably best to just take that time and be kind to yourself. I expected too much too soon (as most of us do) but as long as you give your body some time to rest afterwards then why should there be a reason why you cant return to some sort of normal life after. No it isn’t quite the same, but as Ann told me (who was such a support and help to me during my struggle, and also Liz R) but you will find a new normal. No long term trials of the mesh have been undertaken and there is nothing to say you will get any better… if it were me I would get it out as much as she can at least that is some less for your body to be fighting for. Good luck my prayers are with you all Lizzy xx

    Posted by Lizzy Blanch | December 11, 2013, 12:12 pm
  262. Hi to both Carole and Joy

    I would like to tap into what LizRH has said about removals ( her post 10.12.2013 )

    I had a really kind and encouraging compliment from Natalia when I saw her for my pre op chat with her. She said that it will be better for her doing her laparoscopic work on me, because I had slimmed down prior to the removal op. Natalia said it is easier to perform an op without too much body fat to cut through. I was determined to get my BMI down according to my age height etc. I just cut out most bread, biscuits, cakes and watched my portions and continued with my fresh vegetables and fruit and a decent bit of protein – all portion controlled.

    Get used to eating prunes, they are delicious and drink prune juice well past your recovery period. Arrange your bed so that you can elevate your legs when ever possible. Be kind to yourselves and think about yourselves for a change during recovery – you are supposed to rest. Thank heavens for laptops and I phones etc..

    Best of luck and blessings
    Ingrid H.

    Posted by Ingrid Hardacre | December 12, 2013, 12:48 am
  263. Hi every one I now have a date for my op at the JR with Natalia,it is 11th March ,so a good way off yet ,if I could go thro life without ever having to sit down,and things never got any worse then I could manage without surgery but that’s just not possible!!!My next worry will be how to get there by 7 30 when the hospital is a good 1 45 hrs away and we have 2 dogs that would need to come with us so an over night in an hotel would not be on the cards.Oh well
    .,lots of time to think that one thro,shall wait now and see when my letter re my knee replacement comes
    Joy do hope you are on the mend again by now and have got home ,I do feel for you

    Posted by carole jarman | December 15, 2013, 11:03 am
  264. Hi Carole, I live 30 minutes from the JR and there is a B and B in my village that happily has dogs as well as owners to stay (and horses if you bring one!). I hope that you might find this useful: http://www.colliersbnb.co.uk/ – the owners are just delightful and have a small number of animals and great community spirit. I’m sure they’d be willing to help. Liz

    Posted by Liz RH | December 17, 2013, 8:53 am
  265. Hi Liz thank you so much for that I will hang on to their web site and give it much thought is parking at the JR for visiting etc as bad as I am led to believe?Hope you are well? Carole x

    Posted by carole jarman | December 17, 2013, 2:52 pm
  266. Parking would be absolutely fine at that time of day. Even when I’ve been mid day I can get a space so don’t worry! Liz

    Posted by Liz RH | December 17, 2013, 3:17 pm
  267. Thanks Liz have just spoken to someone at the JR who said it may be possible to be admitted the day before but I have to ring nearer the time.If this is a no no I may try that B and B.As you live fairly near if you felt like visiting me that would be great as I doubt my hubby will get often —if at all–due to the journey time and our animals !!!X
    Joy how are you now,have you had a date or are you still waiting for your infections to clear up?

    Posted by carole jarman | December 17, 2013, 4:49 pm
  268. I’ll certainly visit if I don’t have too much on at work. It’s an hour’s round trip and I haven’t always been able to visit TVT contacts even though I’d like to – I do understand that you’d like visitors. There are now some other women local to Oxford who might also be able to visit which is great. Liz

    Posted by Liz RH | December 17, 2013, 5:02 pm
  269. Sorry Liz I didn’t realize you had a job ,guess I imagine all on this site are “golden oldies” like me !!!!Wouldn’t dream of you giving up precious time to visit a stranger I will be fine with a book and the TV ,its not for long afterall Just hope that what Natalia can do will help and that I can sit in comfort again and not have to seek help further afield.I seem to be constantly doped up with one drug or another but nothing takes the pain,My GP wants me to try the morphine patches again along with some anti emetics this time but if the latter don’t help I don’t have a day in the next couple of weeks to be as sick as I was before—-if that makes sense?!!!-
    Carole

    Posted by carole jarman | December 18, 2013, 4:36 pm
  270. It’s so miserable having to try and deal with the horrible and constant pain – I do understand. I always enjoy visiting Natalia’s patients if I can – see what March brings!
    I do hope that you find something to ease the pain.
    Liz

    Posted by Liz RH | December 18, 2013, 9:43 pm
  271. I don’t think I put that very well! I enjoy visiting anyone if it is of help, and because I live near Oxford which is where Natalia Price works (and she removed my TVT), I have visited some other women who had their TVT removed by Natalia.

    Posted by Liz RH | December 18, 2013, 9:45 pm
  272. I have a date- the 25th Feb. Carole, I also have a spare room you could use, and a dog. You could come and stay overnight and leave the dogs with me. My kitchen has a dog door to the garden and a gate to the rest of the house.

    Posted by Joy lloyd | December 19, 2013, 11:33 am
  273. Joy am so pleased you have got your date ,you beat me by about a week!!!Thank you so much for your kind offer,sadly my male greyhound doesn’t get on with other dogs so I wouldn’t want to mix him with yours.You may well not feel up to a stranger in your house so soon after surgery either.I have to ring up at the end of Jan to see if I can have a bed in the JR the night before my op.
    Hope you stay well until your surgery,are you still on anti biotics ,do you take any form of pain relief?

    Posted by carole jarman | December 19, 2013, 3:49 pm
  274. carole, I am not on anti-biotics anymore. I was unsick for 8 days, and now feel bad again. I take paracetemol and I take tramadol once a day, down from twice a day. I dug out some mebeverine tonight to see if it helps the gut spasms. I am lying low and using hand san all the time. It is nearly 1am and I can’t sleep for the pain, but I know what taking more and more meds can do and would rather deal with the pain using a heat pad, than side effects of drug after drug.
    My dog gets on with all other dogs, but it would be tough on yours to be in a new place without you suddenly. It would not be relaxing for you to be concerned. I hope you can work things out as to their care.
    Maybe I will see you in hospital. It would be nice to have a companion in suffering. only it sounds like we will just miss eachother.

    Posted by Joy | December 20, 2013, 1:01 am
  275. Joy did Natalia give you any idea how long you would be in the JR,have you got a pre-op appointment yet?I have a copy of last Tuesdays Daily Mail in which there is an article about our problem and also mentions Natalia as the consultant this lady used.
    If any one who hasn’t seen this article is interested I could print the gist of it on this page ,it makes for an interesting read
    Healthier New Year to you all

    Posted by carole jarman | December 26, 2013, 5:39 pm
  276. Hi – the DM link to the article is here: http://www.dailymail.co.uk/health/article-2528600/Victory-Mail-surgery-left-thousands-agony-Hospitals-ordered-warn-patients-incontinence-operation-cruelly-wrong.html

    Unfortunately there is not enough emphasis on how the mesh shrinks inside the body or that it is a blind procedure but it is better than nothing. Karen is very brave – she had an awful time.

    Carole -usually women are in the JR for 2-3 nights following removal. Hope that helps. Liz

    Posted by Liz RH | December 26, 2013, 5:49 pm
  277. Hi Liz,thanks its always good to know what to expect I know Natalia will be searching for the tvt fragments she can feel and will also be repairing a prolapse—-not using mesh!!!!—just hope this helps and its not the other mesh giving me problems,I do so need to get my revision knee replacement done to and don’t want too much surgery too close together ,its not really good even if I opt for an epidural for one rather than 2 general anaesthetics Joy hope you are still ok?You mentioned once about some herbal mixture you drank and letting me try some ,is that still in the offing?

    Posted by carole jarman | December 27, 2013, 5:51 pm
  278. I don’t have a pre-op yet, or any idea on how long I would be in hospital. My removal will be one of the simpler removals, so I expect I won;t be there long. but I have become incontinent over the last two weeks, which is a new development, so I will have to talk to Natalia about why that is happening, and what she can do.
    I do have a herb tea mixture if you want me to send you some, Carole. Herbs are not miracles, but there is something in drinking lots of liquid, especially if the liqiud encourages peeing as that can help flush the bladder. It is a mix based on those principles. Dandilion mostly with some other useful herbs to help the bitterness.

    Posted by joy | December 28, 2013, 2:31 pm
  279. Hi Joy sorry to hear you are having new problems I have had urge incontinence for about 8 years now ,ever since my TVT was cut but I no longer worry about it I just wear Tenalady and cross my legs !!!I could try your herbs,cant do any harm ,I am already on the max dose of Gabapentin and also take Tramadol and Stemetil .You have my email address I think ,from TVTINFO so if you email me I could give you my address

    Posted by carole jarman | December 28, 2013, 5:37 pm
  280. Hello ladies, I wonder – has anyone seen Mark Slack at Addenbrooke’s to have their TVT removed? I have been in constant pain (like everyone else has) since I had my TVT op in May 2012 and like you all I wish I’d never had it! I take amitryptiline and solpadol, more often than not I overdose on Solpadol!!!! as I normally have to start taking it at 4am! I told Mr. Slack that I had contacted Suzi El-Neil after reading the article in the Daily Mail and he promised that he would have removed my TVT if he thought that it would help me – I am sure from reading all your comments that we are better off without it than with it – I too can’t stand the bloating, the pain, I think it feels like 24/7 bad period pain – that’s how I have been describing it any way!! I have just got another appointment with Mr. Slack for February – and after reading all your comments I think I am going to ask to have it removed. Suzi El-Neil, Natalia and Mr Slack all know each other well he tells me – I just don’t understand why he isn’t mentioned in any of your emails……… Anyhow, they had a meeting about my case on Tuesday so fingers crossed that they will take it out – even though I know that it will be another “mission impossible” with the pain it has GOT to be better than having this constant pain, hasn’t it?? Can you give me any reassurance please lovely ladies?

    Posted by Anne | January 9, 2014, 4:22 pm
  281. Hello Anne,

    I met Mark Slack when I went to speak about the perils of mesh on Radio 4′s Woman’s Hour http://www.bbc.co.uk/programmes/b019gy9r. I was invited to go on air because I had written to Radio 4 objecting to his interview a few months before when he extolled the virtues of mesh. I have no doubt that he is experienced in his field and I believe that he can remove mesh but you might want to check how many meshes he has removed if they do agree to remove yours in Cambridge. If you are not confident then you could contact one of the others you have read about here.

    I do hope that you can move forward in your search as the misery is just awful. I feel for you. Warmest wishes, Liz

    Posted by Liz RH | January 9, 2014, 4:56 pm
  282. Hi Anne

    Sorry to hear about your pain resulting from the TVT.

    I am sure Mark Slack is a very respected professional in his field and I am reassured to hear that he has been sympathetic to your problems.

    However, I do not personally know of any women who have had a full mesh removal by this surgeon. I would ask him in writing to confirm how many full mesh removals he has performed and what was the outcome in terms of resolution of symptoms and effect on continence.

    Posted by tvtinfo | January 9, 2014, 6:19 pm
  283. multiple mesh agony from the word go unable to walk without help have to stand up to pee use catheters and have to do colonic irrigation every day only comfortable if bent over with nose almost touching the ground or lying in bed I had the mesh inserted for prolapse bowel and pelvic floor and bladder almost 8 years ago Is there any hope for me ? My friend has Dementia and I look after him and he looks after me .Who will operate?

    Posted by jeanette kent | January 14, 2014, 8:22 am
  284. Hi Anne,do hope you are able to get your problems sorted ,I haven’t heard of Mark Slack Im afraid but then until I found this web site I hadn’t heard of Natalia Price either .As TVTINFO says do make sure you get lots of assurance from him before agreeing to surgery I have had numerous operations in the past—-not all gynae—that have made things worse rather than better Jeanette oh my word you are in a state ,I am not confident anough to suggest any one,or thing to you but am sure some of the other ladies on this site will have ideas.I wish you lots of luck

    Posted by carole jarman | January 15, 2014, 1:02 pm
  285. the comfort I have got is from now knowing that I am not alone and the last 8 years have been a nightmare of doubt in my own sanity as I was told it was scar tissue. Just started my 4th lot of antibiotics as usual infection has flared up worse than ever before. This since Christmas Help Help Help

    Posted by jeanette kent | January 15, 2014, 5:51 pm
  286. Hi Jeanette, Have you got a TVT or a TVT-O? I only ask as I know Natalia Price in Oxford cannot remove TVT-O’s. I am currently waiting for surgery to remove my TVT-O which I had inserted on 26 Sept 2013. Ive had pain since it was inserted, and I saw Sohier Elneil in London, privately on 1 November 2013. She says she removes about 3 of these tapes each week now, and she has had some very difficult cases. I would suggest you contact her or Natalia as they are, as far as I am aware, the only two experienced surgeons in the UK who can remove these tapes. I contacted Miss Elneil directly on her email and she replied straight away. I think if anyone can help you, one of these ladies can. Good luck, I hope you get the help you need. Emma. x

    Posted by Emma Co | January 15, 2014, 6:22 pm
  287. Hello ladies! Jeanette definitely contact Susie Elneil! I too contacted her after I saw an article in the daily Mail on 24th December and she replied to me straight away too! I today went to my GP to ask for a referral to her for a second opinion so fingers crossed I will get one! I am due to see Mark Slack again in February and am going to ask him how many removals he has done! I am very grateful to have found this website, it does help me not feel so mad too and feeling like I am the only one!! Today my GP has suggested that I take 3 amitriptyline at night! I’m going to sleep well tonight, I take this at 6pm otherwise I can’t wake up in the morning as you can well imagine!!

    Thank you once again everyone for all the help …… If I can get this damn thing out, and I’m not sure which TVT I have I have to say… Another thing on my list to ask!! Will I need to take out shares with tena lady?? You’ve got to laugh haven’t you otherwise you would cry!!!

    Posted by Anne | January 15, 2014, 7:08 pm
  288. Jeanette – glad that you feel you are not alone. You certainly are not – 30, 000 women are taking out legal cases against the harm done by mesh in the USA…

    Emma – your analysis is the same as that of most of us regarding the only 3 experienced surgeons who can remove. Natalia only does TVTs as the laparascopic technique goes into the pubic ‘space’ – TVTOs are differently configured. You will read about good results from both surgeons on these pages.

    Anne – well done you for keeping your spirits up – Tena lady shares made me giggle. Glad if you feel a bit less alone, and also glad that your GP seems to be listening. Take care,

    Liz x

    Posted by LizRH | January 15, 2014, 7:41 pm
  289. Poor you, Jeanette. You are not alone. You are not imagining it all. You are not a nutcase. There is hope. You will get through it. I am in the same place trying to keep infection at bay.

    Posted by Joy lloyd | January 15, 2014, 7:42 pm
  290. Dear Joyce, thank you for your words of comfort. There is nothing in this world that can’t be faced as long as one has understanding friends

    kindest thoughts Jeanette

    Posted by jeanette kent | January 15, 2014, 9:59 pm
  291. I had a 16 lb cyst removed and they did not tell me that they had cut away my pelvic floor and the wall separating the bowel from the vagina,..after this I was given pelvic floor exercises to do but it took a year of me telling them that there was something wrong and it wasn’t until I had to move the bowel out of the way to pass urine that they listened to me and i
    I had surgery very quickly after that to put the bladder in this tvt nd a wall built to hold the bowel in its rightful place and a pelvic floor put in. that is all I know because its been agony ever since and to crown it all the mesh or whatever they used has failed and I have prolapse and I knew nothing about what was used until I read it in the paper.After the op i could only pass urine standing up and it was as though my stomach was attached to me knee with thick strong elastic i was told this would ease of in time. how do I get in touch with whoever will help me. TVO or TVt it’s all the same to me

    Posted by jeanette kent | January 15, 2014, 10:15 pm
  292. Hello Jeanette

    You have had such a horrible time of it and you have my greatest sympathies. I would suggest that you go and see Sohier Elneil as she is the only one that can help with the removal of prolapse meshes. I wish you all the best.

    Ann x

    Posted by Ann Boni | January 15, 2014, 10:29 pm
  293. Dear Ann
    thank you for your advice I will find out her address or email and get in touch with her

    Posted by jeanette kent | January 16, 2014, 9:11 am
  294. Hello Jeanette

    The address is University College Hospital, 235 Euston Rd, London NW1 2BU. Hope this helps and good luck.

    Ann x

    Posted by Ann Boni | January 16, 2014, 9:25 am
  295. thank you for your prompt reply

    kindest thoughts

    jeanette

    Posted by jeanette kent | January 16, 2014, 12:20 pm
  296. Hi Joy just wondered how you are doing as you haven’t made any comments of late?Only a few weeks now till your surgery,I may well have to delay mine as I fear it will clash with my knee replacement ,its just a case of which is worse as I get nearer the time !!

    Posted by carole jarman | January 22, 2014, 3:25 pm
  297. I am fine, thanks. I am having a period of wellness, and am using to get caught up with things that had to be set aside.

    Posted by duck3GG5 | January 22, 2014, 4:31 pm
  298. Hi there ladies hope you are all doing ok?? I asked my GP to refer me to Susie Elneil and yippee she has been able to do this! the GPS secretary even telephoned me to say that the letter had gone off! Will keep you informed as to how this goes, but thank you all so much for all your help, so glad to know that I’m not the only one ….. Hugs to you all, Anne

    Posted by Anne | January 22, 2014, 5:49 pm
  299. Hi Anne, just a quick note to say how pleased I am for you, Miss Elneil is nothing short of brilliant and a genuine lifesafer. She also has a fantastic team who really care about you as a person and do not fob you off or make you question your sanity as many medical professionals have done to us mesh sufferers. You can trust you are in safe hands now and I wish you all the very best.

    Posted by Julie | January 23, 2014, 1:27 pm
  300. Hi Anne,so glad you have got your referral hope ypu don’t have long to wait,will you have to travel far to see Susie?Are your symptons any easier do you take any prescribed analgesics?

    Posted by carole jarman | January 24, 2014, 3:37 pm
  301. Hi Carole and Julie, thanks for your comments! I do take quite a lot… Well I think it’s a lot … solpadol every 4 hours!! Sometimes this starts at 4am!!! And 2 amitriptyline at 5.30 pm! I sleep well as you can imagine! I live in Royston in Herts so it will be an easy train ride done to London to see Susie! Can’t wait!!! Crickey what has life come to when you can’t wait to see a consultant eh?? I describe my pain as 24/7 bad period pain? Does that ring any bells ? It also sometimes goes down my legs too!! Have a lovely weekend everyone Anne xx

    Posted by Anne | January 24, 2014, 7:35 pm
  302. Hi Anne

    I’m so pleased you managed to get a referral to Suzy and I hope it goes well and she is sympathetic to your problems.

    Keep us all posted!

    tvtinfo

    Posted by tvtinfo | January 24, 2014, 8:08 pm
  303. Oh my goodness me, I am in total shock! I thought I was the ONLY one going through this nightmare. I had a TVT-O operation in November 2008 and had a few years of good service from it, apart from during intercourse and particularly orgasm (sorry to be so blunt!) where I would get a horrific deep pain in my lower left groin area. In addition to the stress incontinence, I also had horrendous periods and was terribly anaemic, so I had various gyne procedures to treat this including an Endometrial Ablation in November 2011. It was after this procedure that the pain, and of course ladies, you know what I mean when I say PAIN started. Also the “auto-immune” flu type symptoms that often accompanied the pain. Chronic pelvic pain, that at times made me sick or even faint :( Cutting a very long story short, this pain was thought to be due to my womb having Adenomyosis and indeed it did contain this, but I had never suffered with too much in the way of period pains before, even with the haemorrhaging. I DID mention to my gyne and my gp that I thought it could be the sling, but was told that they hadn’t heard of any complications!!! So this time last year, I had a total abdominal hysterectomy, including cervix. I have a huge thick scar now from that, not to mention having to change jobs etc. And the pain, is still very much present. My GP told me I was depressed “Claire, you have a history of depression, there is nothing the matter down there, it is coming from your mind” I am on gabapentin, duloxetine, I have tried all sorts of analgesia…you poor ladies know the drill. What I didn’t tell you though is that I had my ovaries switched off via a hormone injection to see if the pain was coming from them…and I was given HRT to compensate during this 6 month period….and this HRT made my blood pressure increase so much that on my birthday in 2013, I suffered a mini stroke, that left my right hand and arm paralysed totally for 2 weeks and then partially for another 4. I have had a cystoscopy in the last 3 months that was just “tender” but nothing abnormal, and two weeks ago I had an pelvic MRI but as yet no results. I’ve been referred to the Pain Specialist team who tell me this is all nerve damage from too many procedures, but I really don’t believe it is….I feel infected, inflamed and in pain. I feel ill. Please ladies, can you advise me who to seek help from now. I will pay for private consultations if needed and travel. I am desperate. I’ve just given up work because of this. I am 39.My husband of 20 years will no longer come near me sexually :(

    Thank you for taking the time to read my story. God bless x Claire

    Posted by Claire | January 26, 2014, 10:43 am
  304. Oh Claire, this is just tragic and appalling and there are tears in my eyes as I write. HOW DID THEY DO THIS TO YOU? The medics have let you down so, so badly. Yes – you have come to the best sources of information and support through this excellent, up to date site which is run by a former mesh sufferer.

    Since yours was a TVT O, the best surgeon who you need is Sohier El Neil at UCL in London. Others will give you more information on her (she wasn’t the surgeon who removed my TVT because Natalia Price is in my local hospital and cannot remove TVT Os). But I’ve heard she is excellent. She was on Radio 4′s Face the Facts on 22nd Jan – do listen http://www.bbc.co.uk/programmes/b03q9dc8

    My heart goes out to you.
    Liz

    Posted by LizR | January 26, 2014, 10:53 am
  305. Thank you so much for getting back to me so quickly Liz, I really do appreciate not feeling so alone. I will listen to the link straight away, and try and get in touch with the surgeon tomorrow. I used to be such a fun loving, bubbly, pro-active mum of two and feel such a shell of my former self. I would give anything to reclaim my life back. I will let you know how I get on. Good luck to all of my fellow sufferers, and thank you again Liz. x

    Posted by Claire | January 26, 2014, 11:37 am
  306. You are more than welcome. It’s a nightmare for you – we all understand, even if we have had slightly different stories. You have already suffered so much and you have hopefully come to the end of your quest for knowing what is causing all the pain. If these doctors only knew what it felt like… You might want to listen to my story on Woman’s Hour from 2 years ago http://www.bbc.co.uk/programmes/b019gy9r – not as bad as yours at all, but reassurance for your husband – there are, tragically, many men who are finding it hard to understand the pain that their partner suffers following mesh insertion. This is so wrong – for both of you. If you can, educate your GP with some of the information on this site and when you have the energy, raise all that you have suffered with the MHRA Liz x

    Posted by LizR | January 26, 2014, 11:44 am
  307. Sohiers email is s.elneil@nhs.net Claire!! You poor thing! I emailed her over the Christmas period as I too have reached the end of my tether and I read an article in the daily mail! She had emailed me back within 5 minutes and I now have a referral to see her! Can’t wait!! So get to your doctors ASAP and ask for a referral to her but be sure that the doctors puts urgent on it!!!

    Has any one sued by the way? I keep having a lady team of solicitors come up on my Facebook page…… It is soooo tempting I have to say and did anyone listen to a programme on radio 4 last Wednesday just before 1 pm as it was on TVT s ? I really must listen again as only caught the tail end of it as a friend put me on to it!!

    Kindest thoughts Anne xx

    Posted by Anne | January 26, 2014, 12:46 pm
  308. Oh Liz, how brave and amazing are you to go onto Woman’s hour. Truly inspirational. Having listened to your story and the programme from last week it is very clear to me that we are a band of women who need listening to. I am so sad for us all. Looking through the comments is disheartening but also encouraging, not to be alone, and to have some highly esteemed medical professionals willing to help. I too have already had a reply from Professor Elneil, on a Sunday…how incredible is that! I will (in my usual terrified state) approach my GP for a referral. Husband is going to come with me. He too is feeling encouraged this morning too. I am so grateful to have found you Liz, and all of the contributors to this page, Thank you so much x

    Hello Anne, As you can see from above, I too have heard from Sohier and I am delighted and feel for once, in control. Look on the replies from Liz to my post as they contain the link to this weeks programme. I haven’t thought about litigation, but presume this would go against the mesh manufacturers. Perhaps others will know about that.
    Best wishes and good luck for your appointment. Please keep in touch. x

    Posted by Claire | January 26, 2014, 1:20 pm
  309. Dear Liz and Claire, I have now listened to the radio 4 programme several times this lunchtime! Can’t tell you the words going through my brain, far toooooo rude!!!!! But you can have a guess!!! I didn’t know that
    Susie was a professor either until today! Mark slack must have forgotten to tell me! He just told me that he .suzie and Natalia all trained together!!! Can’t wait to see him either, armed with my notebook!! Thank you so much for being here everyone!!!

    Claire it is lovely that suzie has got in touch with you today! And glad that your husband is encouraged by it too!! We couldn’t believe it either when she came back to me in 5 mins! And now your husband has read all these comments he can definitely hold your hand and jump up and down for you….. Mine couldn’t believe all this either!!

    When I first had my TVT 18 months ago I kept saying that I still felt ill and in pain and that I was suffering with loads of urinary infections, I ended up having 12 weeks off work which is excessive for this type of surgery surely everyone kept saying!!!!!!! in the end I had to insist on a referral back to Mr slack!!! My symptoms are no where near any of you lovely lot by the sounds of it, as my GP will only prescribe solpadol and amitriptyline , this weekend I have added on some ibruprofen extra strong for good measure too! A regular junkie I am!!

    Take care all and keep in touch on how things are going…… I so wish I’d found you all a LOT sooner I have to say! And you are keeping me sane!!!

    Anne xx

    Posted by Anne | January 26, 2014, 3:23 pm
  310. Hi Clare,

    So sorry to hear you have been suffering so much with the TVT-O. I had a TVT-O inserted on 26 Sept 2013, and have had pain ever since. To be honest it has calmed down quite a bit, but I still have a pain ,particularly when I am sitting in an upright position at my pc, or driving, underneath in the area nr the coccyx but more towards the left hand side bone/buttock area, which I can only think is the tape aggravating a nerve. Sometimes it is worse than others. I saw Sohier Elneil privately on 1 Nov at her clinic, and I am due to have surgery to have it removed in two wks, 12 Feb on NHS in London at UCHL. Even though the pain isn’t as bad as it initially was I’m still going to go ahead and get it removed. When it is hurting it makes me feel quite unwell, and I don’t think it will improve, so I’d rather be rid of it. I am worried about the surgery, and not looking forward to having a catheter in when I come home and for two wks afterwards – that is my biggest worry. I’m also worried about incontinence afterwards, but as I wasn’t incontinent before the surgery, only suffered with mild stress incontinence when I laughed or coughed, I’m hoping I’ll be okay. To be honest I’ve leaked since the surgery, so I’m not convinced its even doing that good a job anyway! To go back to how I was would be fine. I’m just praying things will be okay, but with the comments on here about how good Sohier Elniel is, I’m hoping I’ll be in safe hands.

    I live in Preston, so I have a long journey home from the hospital, and I think I may be a bit lonely while I’m there, all on my own, but I won’t be in long hopefully, so I’ll just have to be brave, and think of the long term benefits in getting the thing out!

    Hope you get to see Miss Elneil soon. I’m sure you will. She is a lovely, very caring and understanding lady. I too emailed her direct initially, and she emailed me back immediately, late on a sunday evening. That just shows how caring she is. She knows the pain us women have been put in with these horrible things. I think it won’t be too long before they are completely banned here. I believe they have already been banned in America.

    You can take heart now that you are in contact with the best lady to deal with your problems.

    Lots of love. Emma.x

    Posted by Emma Co | January 26, 2014, 4:36 pm
  311. Hi girls,

    Claire – it’s just great that you had an instant response in the same way that Anne did – and that things can at last move in the right direction. Emma – I really hope it goes well – I’m sure it all feels a bit daunting but you are in excellent hands. DO increase your fibre intake before the op, and take very very loose clothes and boxer shorts to return home in.

    Just a small correction so that you don’t get into any embarrassment in quoting information to medics: in the US, a few of the prolapse mesh kits have been removed, but not SUI mesh devices. For more details go to meshmedicaldevicenewsdesk.com where you can also read about the 30,000 legal cases…. it is just criminal that use of mesh continues. I would be very happy if all mesh use was banned.

    It’s great to know that you are getting some support from this site. It’s an amazing vehicle for information and sharing – both essential, both denied by almost all the consultants.
    Liz x

    Posted by LizR | January 26, 2014, 4:45 pm
  312. Hi Liz,

    I attended a routine appt with the consultant who inserted my TVT-O in Sept last year, and I told him the pain I was in, and he wanted to send me for some nerve studies of my arms and legs! Not acknowledging that the pain could be coming from the TVT-O. Anyway, I haven’t bothered to follow this up. I wasn’t having this pain before it was inserted, so why would i want to have tests on my nerves done when I know what’s causing the pain, just more hassle?! I wonder if anyone else has had this offered by their consultant? I would think they probably have. I just want the thing taking out. He was very doubtful about my having it removed successfully, as it isn’t anything he has ever done himself! I just said thankyou very much and bye! x

    Posted by Emma Co | January 26, 2014, 5:49 pm
  313. LOL apparently if he thought it would help the pain mine would have removed it YESTERDAY!!!!!! Keep going Emma! keep going! It will be worth it in the long run!! Xx

    Posted by Anne | January 26, 2014, 7:21 pm
  314. Poor you, Emma. Nerve pain is common after this awful op. The surgeons can’t see where they’re putting the enormous insertion needles. It’s horrid even to think of it. I agree – no more tests and hopefully removal will greatly improve things. It can take time though as the nerves need to repair. Look into vitamin B12 methylcobalamin.

    Keep going…. nearly there! Liz x

    Posted by LizR | January 26, 2014, 7:24 pm
  315. There will be a run on vitamin b12 tomorrow Liz, I’ll be in boots getting some!! And Emma if I get to go to UCH around that time or if any of us are there perhaps we could look into a visit! Do you know how long you will be in for? I bet it’s longer than the half day you were in having it inserted, I couldn’t pee but was sent home with a catheter and then had to go back to the hospital the next day to be shown how to self catheterise! So lovely eh? Xx

    Posted by Anne | January 26, 2014, 7:32 pm
  316. Thanks Anne! I can only say that my research and experience showed that B12 (and ensure that it’s the methylcobalamin) that dissolves under the tongue (for maximum absorption) has made a difference to my nerve pain. When I forget to take it, the pain gets far worse. I get mine from Amazon -Swanson 5mg for under £5 for 60. Not sure that retailers have the right stuff. http://www.ncbi.nlm.nih.gov/pubmed/8021696 suggests there may be some benefit.

    I guess I should add that this works for me, but in the usual ‘health and safety’ way, it might not be right for you all and if you are unsure whether to take it, check with your GP.
    Liz x

    Posted by LizR | January 26, 2014, 8:02 pm
  317. Thanks Liz, sorted! Good old amazon! H&s understood! I am happy to try ANYTHING! Xx

    Posted by Anne | January 26, 2014, 8:24 pm
  318. Sorry I have been quiet this afternoon, I have a Uni returner for a visit (youngest son, lovely!). I just wanted to say to Emma very quickly, that I am only an hour by train to central London and would be happy to visit you at UCH if you do indeed get a bit lonesome while you are in.
    Will be back in touch soon ladies and thank you again xx

    Posted by Claire | January 26, 2014, 9:21 pm
  319. Claire – these visits from our ‘visiting’ children are rare and special. Enjoy as best you can with the pain.

    Anne – great ! Yup – too easy to buy stuff with Amazon ;-) but ideal for immediate solutions. Let me know how you get on. I was thrilled that an older man tried it and it has certainly helped his sciatica nerve pain after a couple of weeks.

    Posted by LizR | January 26, 2014, 9:31 pm
  320. Hi All

    Just want to repeat Liz’s comments about checking with your GP first that taking these vitamins is not going to interefere with any other medications, and if he/she does give you the go-ahead, buy from a reputable source, of course.
    Also, be sure to ask the consultat lots of questions and make sure you know all the risks of removal if you are offered it. Everybody is different and removal may help some but it may not be the answer to everyone’s problems so make sure you find out as much as you can about what might be causing your issues and whether removal will help and what exactly it involves.
    Good luck with your appointments.
    tvtinfo

    Posted by tvtinfo | January 26, 2014, 10:05 pm
  321. Hi Everyone, Thanks for your comments. I will def try the B12 when I go in to UCHL in two wks. Im pannicking a bit to be honest, especially about the catheter… really don’t fancy that at all! I didn’t have one following the TVT-O insertion, but apparently Miss Elneil always catheterises patients after having the TVT-O removed, due to the damage from the tape to the urethra. Suppose it makes sense, but still really worried about it. xx

    Posted by Emma Co | January 26, 2014, 10:14 pm
  322. Hi Emma

    Don’t panic, no-one will know you have a catheter in and you will soon be back to have it removed. When you have your op, they will give you discreet equipment so you can hide it under clothes and it will probably have a ‘tap’ for emptying. Why not phone the urogynae nurse for some pre-op advice about what to expect.
    tvtinfo

    Posted by tvtinfo | January 26, 2014, 10:20 pm
  323. Hi, Yes I think I will ring the Urogynae nurse before I go, for a bit of info and reassurance. I’m wondering if they will allow me to have the catheter removed at my local hospital rather than having to travel all the way back to London again to have it removed. What do you think? Emma.x

    Posted by Emma Co | January 26, 2014, 10:41 pm
  324. I would ring the urogynae nurse and ask her. I’m sure if this is at all possible they will arrange it for you to save you the trip if they think it is not essential to have it done there but, who knows, there may be a good reason for you to return to their team, I couldn’t tell you I’m afraid.

    Posted by tvtinfo | January 26, 2014, 10:48 pm
  325. Understood re the vitamins thank you though!!

    And Emma I would definitely ring the Urogynae nurse in that she will be a big help I am sure in reassuring you on all levels!

    I had been taking cranberry flavoured aloe Vera for a while, but I haven’t noticed any difference with that so not sure that I will carry on with that!!!

    Thank you once again girls for being there…………. Hugs to all

    Anne x

    Posted by Anne | January 27, 2014, 2:49 pm
  326. Oh just another quick question, where does one get boxer shorts, am thinking of stocking up!!!! :) x

    Posted by Anne | January 27, 2014, 2:50 pm
  327. Hi Anne
    You might not need these as long as you wear loose fitting items. Hopefully someone will be collecting you from the hospital and driving you back when you are discharged. Take a pillow to put under the seatbelt for the journey.

    Posted by tvtinfo | January 27, 2014, 5:06 pm
  328. Men’s clothing ;-)

    Mine are silk and beautiful from ebay! Liz x

    Posted by LizR | January 27, 2014, 5:09 pm
  329. Silk sound a bit fine for post-op wear, Liz! But thanks for the tip. x

    Posted by tvtinfo | January 27, 2014, 5:14 pm
  330. Maybe, but I throw them into the washing machine each day. The advantage of silk is that it provides the least friction against wounds or stitches – even less than cotton. (The reason that I still wear them is that the legacy of mesh when still inside me was a rare cyst near my groin so I cannot wear anything next to it owing to friction causing considerable pain… ).

    Posted by LizR | January 27, 2014, 5:21 pm
  331. That’s awful, Liz. Sorry that you have pain still from the cyst which developed after the TVT. I hope one day it resolves.
    Silk is well known for its properties for keeping cool and warm too. I have a pair of silk longjohns from Landsend clothing which can be worn under dressier trousers as they are not bulky at all and you won’t overheat when you get to the office unlike thermals!

    Posted by tvtinfo | January 27, 2014, 5:26 pm
  332. I accept it – and the silk keeps the problem away. But sadly I shall never wear tights again – although there is nothing to see of the cyst, despite removal, there is a pain site. And yes – silk is lovely and cool/warm as needed. I don’t mind – they are gorgeous bright colours and cost about £30 for 10! I just use a liner for the usual protection (no different from before the mesh!).

    Posted by LizR | January 27, 2014, 5:34 pm
  333. No doubt some nerve damage or something of that ilk :(

    That’s interesting to know about silk being very low friction and gentle on sensitive areas/scar tissue.

    Posted by tvtinfo | January 27, 2014, 5:41 pm
  334. eBay here I come!!!! And gents ones too lol ;) I tend to wear all loose clothing now I have to say from the tummy ache point of view!!! One tip in the night though is that if I need a hot water bottle on my tummy my husband turns over and I cuddle in to him! I find that he is lovely and warm on my aching tummy!! Lol!! It beats getting up to put a wheat bag in the microwave in the middle of the night!!!!

    X

    Posted by Anne | January 27, 2014, 6:30 pm
  335. Nice and close too. Great thing to do. x

    Posted by LizR | January 27, 2014, 8:51 pm
  336. B12 is not a cure all. But it is a miracle cure for the right person, and worth a try. No less than 2000 mg will make a difference if it what your body needs. Nitrous oxide use can inhibit the body’s sbility to use B12, and that is often the reason for the need-and for the high dose.
    I have done my pre-op. I have another uti. Pain on top of pain. I have 20 days to be cured before my removal.
    How long will I bleed afterwards?

    Posted by Joy lloyd | February 5, 2014, 10:02 am
  337. Hi Joy so sorry to hear about the uti bet you cant wait for the end of the month!!!How long did your preop take?I have mine booked for the day you go in I think 27th?May well have to defer my op tho as I still don’t have a date for my knee revision but by the end of March I will have breached the 18 week waiting time and as my gynea is meant to be on 11th it will be a close call As bad as I find this mesh problem I must get my knee done first as I have been trying for over 18months now!!Do let us know how you are and how it all went when you get home GOOD LUCK xx

    Posted by carole jarman | February 5, 2014, 12:53 pm
  338. i have been waiting for an op on my ankle for two years, but had to defer it due to the uti infections. I am getting the mesh removed and getting well, then dealing with the rest. I hope your timings work out for you. I go in on the 25th. If you are having a pre-op on the 27th, come find me on the ward.

    Posted by duck3GG5 | February 5, 2014, 4:10 pm
  339. Hi everyone,

    I’ll be travelling down to London on tuesday next week to get my TVT-O removed on wed 12th by Suzy Elneil. Im feeling pretty apprehensive, worried about how it will go, will she manage to take it all out, will I be incontinent afterwards (hopefully I’ll just go back to being mildly stress incontinent as I was before the tape was inserted!), how much pain will be I be in post op, and how I will cope with a catheter for two wks!! Just hope everything goes okay and isnt too traumatic! Wish me luck everyone…. Emma.xx

    Posted by Emma Co | February 9, 2014, 4:29 pm
  340. Hi Emma,

    GOOD LUCK!!! Don’t forget you are in the very best hands with Miss Elneil. I’ll send you a private email to have a chat xxx

    Posted by Julie | February 9, 2014, 5:28 pm
  341. Good luck Emma am sure you are feeling really scared ,haven’t had a TVT-O removed so cant tell you much as I had my TVT cut many years ago now didn’t find I had that much pain really–I have a prety high pain thresh hold –I had a catheter in situ for a month after ,not nice but you do get use to it ,and if you have any incontinence after then it will be better than all the stuff you have gone thro with the mesh in you!!Let us know how you get on as I still have to go thro removal of threads left in me,but I am under Natalia Price in Oxford XXX

    Posted by carole jarman | February 9, 2014, 5:29 pm
  342. We will all be thinking of you Emma!! Lots of luck! I haven’t had my consultation with suzie ElNeil yet…

    Anne x

    Posted by Anne | February 9, 2014, 7:34 pm
  343. Hello Emma, I don’t come on here very often. One year ago on Tuesday Suzi removed my mesh and also did a hysterectomy. Just take your pain killers the trick is to stay out of pain. Rest, be kind to yourself. One year on I am healthier than I have been for 6 years when it was in. My bowel problems are now sorted out, I don’t have the terrible cutting pain. Yes I am urine incontinent, which Suzi could sort out with another operation probably a Birch Colposuspension, but for me Im not that bothered. Me and Tena Lady are best friends and maybe in another year or so I’ll have surgery again. But, you are in the best hands ever. Suzi is the most fantastically wonderful woman and just trust her. There is no one else who will do a better job. I had a TVTO as well and she was able to remove 99% of mine!! GOOD LUCK – lizzy xx

    Posted by Lizzy Blanch | February 9, 2014, 7:34 pm
  344. Thanks to you all for your kind comments. I’ll come back on here when I’m back from hospital and let you know how I went on, especially for you ladies waiting for surgery with Suzy. I am feeling apprehensive but know I’ll be in good hands with her. Emma.xx

    Posted by Emma Co | February 9, 2014, 8:57 pm
  345. Hi Emma,,

    Best of luck with the surgery on Wednesday. Hope it all goes well. It will soon be all over! Keep us all posted with your progress x

    Posted by tvtinfo | February 9, 2014, 9:12 pm
  346. Hi ladies, I did a little bit of phoning yesterday and was considering going to see Suzie privately – but have just had her NHS secretary phone me and yipppeeeeeee I have got an appointment on 24th February – as you will all understand, the fact that I can’t wait is an understatement!!!!! Emma – am thinking of you – and as my son has just reminded me no pain no gain! :) keep smiling, I know Suzie’s sister Sarah – she is a paediatrician (I used to work on the NICU at Addenbrooke’s hospital with her when she was a registrar!) and if Suzie is anything like her she is so lovely! – you will be in safe hands

    Thank you ladies – just the thought of you lovely lot being there and the fact that I can just type this out helps SO much! Take care and all have a great day

    Anne

    Posted by Anne | February 11, 2014, 11:56 am
  347. That’s great news, Anne. You are very positive and I hope that you can keep on smiling as best possible. Interesting that Susie’s sister is also a medic and that you know her! Not long for you now. Liz

    Posted by LizR | February 11, 2014, 11:58 am
  348. Good luck Emma – I’m sure it will be scary but you are in good hands. Liz

    Posted by LizR | February 11, 2014, 11:59 am
  349. Hope that things are improving, Joy – the endless infections must really get you down. Your removal date is not long away so I do hope you are well enough to go ahead. Liz

    Posted by LizR | February 11, 2014, 12:00 pm
  350. Yes Joy I to wish you well ,let us know how you get on once you are home.I have just deferred my op until June in the hope of getting my knee done before then!!!Am so impressed with the JR they are far more efficient than any of my local hospitals

    Posted by carole jarman | February 12, 2014, 4:03 pm
  351. Dr. Price has told me that my infections are so bad and extreme – something she would see in a woman of 78 or older, never a young woman – that she does not hold much hope that TVT removal will stop the infections. I was thinking about that, and I realise that it makes me a test case for her. If the removal of mesh is followed by a significant reduction in infections and severity of infection, then it would be a strong indicator. I gather that Natalia has not removed mesh from someone whose infections have progressed to having to have hospital treatment every time. There certainly must be cases like mine. Anyway, I am going ahead with the removal, as the pain is as important a factor for me as the infections are.
    Last trip to hospital for IV is tonight. Joy

    Posted by duck3GG5 | February 13, 2014, 1:55 pm
  352. It’s no fun being the ‘rare’ case, Joy, but I can assure you that you are in the best hands possible for this situation. And you know the hospital which helps. You are very positive in your points about test case – maybe that would be something to awaken the many consultants putting these in (including the one that put yours in…). Very best wishes for the next steps. Liz

    Posted by LizR | February 13, 2014, 5:08 pm
  353. Oh Joy ,poor you I hadn’t realized your UTIs were still so awful I do so hope Natalia can sort you out a bit ,not long now.Do you go into the JR for your IV antibiotics are you local to Oxford ?

    Posted by carole jarman | February 14, 2014, 4:50 pm
  354. Hi All, Well Im back from the UCLH and Suzy has removed my TVT-O. It wasnt too bad to be honest….. the pain was managed well with tramadol, paracetamol and Ibuprofen, and Im not just taking paracetamol at home. Ive come home with catheter in situ, which I dont like – Ive got a leg bag for the day and a bigger bag to attach for nights. Im going back next mon 24th to get the catheter removed. Im hoping I’ll be okay to go by train then as my appt in London is 10am and its a good 4 hr drive from here (2 1/4 hrs by train). I’m glad its out. If I continue to leak I’ll speak to Suzy about a possible op called birch suspension I believe, or something along those lines. There were a couple of ladies in there who’d had that done and werent suffering any pain after it.

    Suzy is lovely, and all of you on her waiting list let me assure you that you are in the best hands. I’ll keep in touch and let you know how things go. Power to the ladies!!! Lol…. xx

    Posted by Emma Co | February 17, 2014, 12:32 pm
  355. Great to know that it all went so well, Emma. It’s a scary experience but the experts like Suzy and Natalia are just amazing.

    Take it easy – not that long before the catheter goes, but you need to let your body heal so keep warm, and rest.

    Take care, Liz

    Posted by LizR | February 17, 2014, 12:50 pm
  356. Hi Emma
    Pleased to hear the op went well and you are not too uncomfortable. Sounds like a good plan to get train if the hospital is not too difficult to get to from station. Good luck with getting catheter out and hope you will feel better soon.

    Posted by tvtinfo | February 17, 2014, 10:29 pm
  357. Hi Emma good luck with the catheter removal,you will be fine it doesn’t hurt ,honest!!! I have had a birch colposuspension about 12 years ago so,if at a later tim e you decide to go ahead I can tell you a bit about what I remember Hope you can get a train,its no fun being a fair way away is it ?

    Posted by carole jarman | February 22, 2014, 1:04 pm
  358. Hi Carole, Thanks for that. I cant wait to get this thing out on monday. Ive got a urine infec now because of it and am on antibiotics – i knew that would happen!

    Ive booked a 7am train on monday to be there for 10am – just hope theres no delays! Luckily the hospital is very close to the station. I’ll have to see how I am when the catheter comes out re my stress incontinence, as to whether I’ll need another op or not – hopefully not! It wasnt bad before the surgery, so just hope it hasnt worsened! Did you find the birch colposuspension helpful? There were a couple of ladies in UCLH with me who had had that operation by Suzy Elneil. xx

    Posted by Emma Co | February 22, 2014, 1:58 pm
  359. After finishing a 7 day course of antibiotics by IV last Thursday, I had follow up urine tests. The one on the final day of treatment came up clear. Four days later the test showed a new UTI. I go in for my tvt removal tomorrow. I am scared.

    Posted by duck3GG5 | February 24, 2014, 10:11 am
  360. Hey there don’t be scared !!! It has got to be better than all these uti s ? Who is doing yours? I have met Suzy elneil today and I am on her list for late April early May ! She was gorgeous and so kind and I can’t believe how lucky I am to have met her ! Thank you lovely lovely ladies for all your support

    Anne

    Posted by Anne | February 24, 2014, 5:30 pm
  361. Hi Anne, I also went to UCLH today for my follow up appt after having my tvt-o removed two wks ago. I had my catheter removed, and had tests to check I was emptying my bladder properly. I didnt see Suzy Elneil personally today, but I did see that she was there. I saw one of her team who helped her do my op. I travelled from Preston and feel really sore now, in my buttocks of all places, not abdomen. I prob saw you in the clinic! I did see a blonde lady who looked to be in some pain – maybe that was you? Emma.x

    Posted by Emma Co | February 24, 2014, 5:53 pm
  362. Dr Price is doing mine. No guarantee that the UTI’s will stop. But I hope it will sort the pain and tightness. I am very weak now. Come see me. Liz, if you are near the JR.

    Posted by duck3GG5 | February 24, 2014, 5:57 pm
  363. Hi Emma your poor buttocks !! I my appointment was at 12.20 and yes I was due my meds of solpadol!! I had to start them early today and am desperate for them again now but have to wait til bedtime now!!! I was there with my poor suffering husband ! Isn’t Suzy lovely? I just wanted to cry with joy because she totally understood everything! Now then Emma how did you get home after the op did you do the train? Although our train back was really full and not sure I fancy that leg bag??? Lol I think I should get knitting although they do strap to your leg don’t they? Oh joy of joys! Luckily though am only a 45 minute train journey!!!

    So sorry you are so weak too sorry I don’t know your name duck egg but things can only get better from tomorrow? You will be in brilliant hands in Oxford I am sure if natalia is anything like Suzy? Lots of hugs to you we will all be thinking of you I am positive

    Anne

    Posted by Anne | February 24, 2014, 6:24 pm
  364. Hi Joy,
    Don’t worry one bit. Natalia is just lovely and amazing – you are in good hands.

    It will make such a difference to have the mesh out,Liz

    Posted by LizR | February 24, 2014, 6:36 pm
  365. Hi Anne, Im not sure if I saw you today or not, there were a few women in the waiting area with partners…. no doubt I probably did. Ive just had two paracetamol on my return home…. I wasnt doing too badly at all prior to this trip to London – I think I will have a warm bath tonight and a good long lie in tomorrow morning! I was up this morning at 5.30am to get the 7am train to London for a 10am appt – the train journey from Preston is 2 hrs 15 mins, so not too bad, a lot quicker than by car. I actually got picked up in the car after my surgery two wks ago, dont think I could’ve travelled by train then. The leg bag isnt great, Id never had a catheter in before, but its only for 1-2 wks so you can put up with it. Ive just worn a long skirt the whole time to cover it up. You’ll be fine.xx

    Posted by Emma Co | February 24, 2014, 6:44 pm
  366. Yes Emma have a good rest up tomorrow ! That’s impressive paracetamol!! And actually if you think how far you have come along in two weeks it’s amazing!!! Well done you !! Where did your husband park when he came to get you? Lol my husband is looking for car parks already!!!

    Posted by Anne | February 24, 2014, 7:47 pm
  367. If your hubby picks you up on a sunday parking is free – he can park on yellow lines or anywhere that is free round the hospital. I got picked up on the sunday for this reason, and the traffic was a lot clearer too. xx

    Posted by Emma Co | February 24, 2014, 8:01 pm
  368. Bit strange how I come up as duckeggs intead of Joy. Anyone in charge of this site tell me how to change that?

    Posted by Joy lloyd | February 25, 2014, 11:12 am
  369. Seems to have changed again.

    Posted by Joy lloyd | February 25, 2014, 11:16 am
  370. Joy you are joy !! Hope all is well with you today!! I have been looking for some pj s today!! As realised that the ones I have are not great for being out and about in hospital lol xxx Although any advice on this subject knowing that my tummy will be very sore would be gratefully accepted xx

    Posted by Anne | February 25, 2014, 5:44 pm
  371. Hi Anne – I think you might struggle with pj’s with a catheter in! I just wore a long teeshirt nightie when I was in hospital. xx

    Posted by Emma Co | February 25, 2014, 6:23 pm
  372. Of course Emma!! In my excitement I had forgotten about that blessed catheter for two weeks!! T shirt nighties it will be then!! Thank you xx

    Posted by Anne | February 25, 2014, 6:36 pm
  373. It is out! I am feeling upbeat. Will see natalia in the am. I only wear hospital gowns. Sweat…blood….split anything. Easier to sleep bare backed on my back and not get crease sores. Am treated more like a patient than a well person, which leads to more questions answered and more sympathy. Nurses are human. Plus the gowns are nice and long and wide nowadays. Hospital experience has me leave my night clothes at home. Slippers and a gown are useful.
    It hurts abdominally to move at all, but so far no vaginal pain, which has been a problem for years. That may be the tramadol though, as I am asking for it regularly. Eating pots of yogurt for the sore throat pain from the tube down my throat.

    Posted by Joy lloyd | February 25, 2014, 10:38 pm
  374. Delighted all is going well with you – I’m impressed that you’ve managed to post on your op day! I did the same on mine – well dosed with morphine! I’m glad you feel well treated – the nurses there are usually excellent and Natalia the same. Yes – your tum will hurt for quite a while, in fact that was what ached the longest because of the laparoscopy. But it will get better, be assured. And the rest of you will heal because the mesh monster is out. x

    Posted by LizR | February 26, 2014, 7:06 am
  375. Wish there were “emotions” on here – I would put clapping and party ones on here – but whoop whoop Joy, that is so exciting (anyone would think it was Christmas – but that is how I feel about it now – it IS Christmas as its so exciting – the thought that this THING will be removed!!) – and well done for emailing on your first day – I think that I might take heed and just go with the “gowns” then – sounds VERY sensible!!! I am so pleased for you Joy and Liz “monster mesh” that is sooooooo true!!!!

    Hugs to you Joy – and keep your chin up – its out – onwards and upwards eh??

    xxxxxx

    Posted by Anne | February 26, 2014, 10:14 am
  376. Hi Joy am so pleased you have had your surgery and are on the mend do you know when you can go home yet ?When you do you must make sure you get lots of rest and TLC from whoever!!!I wish I had left my surgery date as it was as I have still not got a date for my knee op and have been on the list for more than14 weeks now!!Couuld have have the mesh bits removed on March 11th had I not deferred sods law eh?!!!!Take care lots of love XXX

    Posted by carole jarman | February 26, 2014, 11:07 am
  377. Lovely having support. It was very odd before the op, sitting with four other women. Three were haing dr put in mesh, and one plus me were having dr price take it out. Awkward situation. I am very low priority today. Everything is delayed. I still need a wash and a fresh pad. But i am glad that i am not one of the high priority ones who are keeping the nurses busy. I can feel i will need to take care for a while at home. No lifting. Just sitting up hurts. The relief of having it out makes up for all pain and inconvenience. I expect to be here until friday. Sorry about the knee, carole. Knee ops take forever to come through, i hear.

    Posted by Joy lloyd | February 26, 2014, 2:13 pm
  378. hi Joy, you are doing really well – keep positive and expect some down days as it is sore around the middle more than in the places you expect.

    Yes – I agree entirely about the oddness of women having mesh put in (and you must feel it particularly, bearing in mind how your mesh insertion came about) and you and another having it removed. Thank goodness for Natalia price and Sohier el Neil above all others.

    Ask for help if you need it – don’t get too uncomfortable.

    Carole – keep going. at least you know that one step at a time you will be right and hearing about the mesh successes can keep you going
    Liz

    Posted by LizR | February 26, 2014, 2:40 pm
  379. Wish I had read all our comments on here BEFORE I had mine put in – I might have had to have said something if I’d been there – but in May 2012 when I was looking for information there wasn’t anything!! Even when I was getting “suspicious” about it when I had the pain still after 12 weeks and couldn’t walk properly!!! In fact I am really surprised that they are still doing this op – putting it in, aren’t you?

    You are doing wonderfully Joy – remember how downbeat you were on Monday – and how scared you were? Well, you’ve done it and well done AND being very very helpful by posting to help the rest of us on waiting lists – “the diary of a TVT removal” with hints and tips on the very latest hospital fashion gowns :) – then we will need ideas of lovely loose clothes (oh I think that long summer dresses with thick cardi’s over them of course) for wearing with our latest catheter bag accessories!!! – hope I’m making you smile?? – cos am sure you could do with it :)

    xxxx

    Posted by Anne | February 26, 2014, 3:31 pm
  380. Yes, I was very scared. The plan to have something cut out that is embedded in flesh is not usually elective. I am in a private room, and am grateful. I wonder if they put mesh removals away from wards? It would be sensible to separate the ins from the outs. What a ludicrous situation it all is. Most medical trials pay the parcipitants.
    Anyway, it is less painful than I expected. My shoulders hurt. My abdomen is swollen and hurts if I move. But it is more achy than painful. I am taking tramadol and paracetemol every 4-6 hours. I dont tolerate the anti infams they offer. I do unususlly well with tramadol and dont get sick on it like others do. Not much bleeding. Laprascopic holes much higher than I thought. Still on IV antibiotics and IV fluids and oxygen. Catheter out in the morning, hopefully.

    Posted by Joy lloyd | February 26, 2014, 7:38 pm
  381. Hi Joy, I had my TVT-O removed two wks ago, 12th feb by Suzy Elneil, and she does things slightly differently. She removes them vaginally so the stitches are inside, and when I woke from the surgery I had packing inside me which felt very uncomfortable and came out the following morning. I think a TVT-O is inserted differently to a TVT and only Suzy Elneil can remove them. I woke with a catheter in and came home with it – I went back this monday to have it removed. I was initially on tramadol, paracetamol and Ibuprofen, but the tramadol made me feel high – very strange feeling, and very itchy! I think I may have had a reaction to it. I dont think Ms Elneil puts TVT’s in at all now, (only in very rare cases she said, in women over aged 70 who have tried everything else). She mainly just removes them, so there was no one in the ward where I was having had one inserted! She takes three out a wk now! I cant believe they are still putting these things inside women!!!

    I am still getting some pain underneath round my left buttock area, but was told the pain often initially gets worse before it gets better. I guess that is probably nerve pain, which I hope will go away eventually now the tape is out!

    Posted by Emma Co | February 26, 2014, 8:40 pm
  382. Day two. My catheter is out. I asked night staff to do it at 5am, as it is quiet then, and they are less busy. I had a stroll twice around the halls in the quiet. My tvt had some vaginal removal as well as laprascopic, but I am only bleeding a tiny bit. Tramadol causes itch and nausea if you are new to it. Best to know what pain meds you do well on before you come in. They offer diclofenac, ibprofen, codeine, tramadol, morphine, paracetemol.
    I feel a little sick after my walk. I think the gas is pressing on my stomach. I am going to drink and try to sleep.

    Posted by Joy lloyd | February 27, 2014, 5:23 am
  383. Hi everyone
    Sorry I haven’t replied for a while. Unfortunately, I do not have as much time to spend on the blog as I would like. But I try to update twitter with useful links so please feel free to follow on twitter.
    Joy, so glad your operation is over and you are coping with the post-op recovery so far.
    Anne, I agree nighties are a much more practical option and cotton ones are cooler on those warm hospital wards and in those plastic covered beds.
    Emma, thanks for keeping us updated. Glad you managed to get the catheter out OK – I didn’t envy you having that train trip only two weeks after having surgery. You must have been exhausted and sore when you got back. Hope you are continuing to make a good recovery. Hope the pain issues soon resolve but it may take some time.
    Carol, yes it’s a shame you cancelled the surgery but it must be difficult having to plan for two different surgeries from different hospitals! Hope you get sorted soon.
    Liz, as always, thanks for your helpful input and support.
    tvtinfo

    Posted by tvtinfo | February 27, 2014, 11:00 am
  384. Hi Joy glad to hear you are doing so well and hope you get your “freedom” tomorrow do take it easy when you get home,do you have far to travel?Like you I tolerate Tramadol quite well am on 800mgs Gabapentin 3 times a day and 500mgs Tramadol when I need it I still feel very uncomfortable when sitting for long but guess I have to put up with that for now,only hope Natalia can help me as she wasn’t certain what was causing my pain!!So wish I had never let anyone near me “down there”
    Anne cant remember if you have a date for your surgery yet and if you are with Natalia or going to London to see Suzie? It is so good to have all this support from you lovely ladies ,I am so glad I found this site XXXX

    Posted by carole jarman | February 27, 2014, 4:37 pm
  385. Hi Carole no, no date as yet end of April beginning of May!! Suzie is doing it! It is brilliant having you lovely lot I have to say and so glad that we are all here for each other!! Anne xx

    Posted by Anne | February 27, 2014, 7:34 pm
  386. Joy well done with everything and that’s great about your catheter too ! Take it easy and take care !! Sleep well and the tips are great for all of us xx

    Posted by Anne | February 27, 2014, 7:41 pm
  387. Tip. Discuss ahead your pain management, and make sure you start on the laxatives gently the first day. Eat soft stuff from the menu or ask for toast and yogurt. Mint tea really does help loosen wind… I just proved it.
    I am doing well. Passed a soft stool. Painful cramps but no straining. I can lie on my front with care, which has helped the gas. Have had more trouble with nausea than expected, and less pain. The pain that is bad is the bowels moving with gas. Vaginal pain-none. Laprascope pain- 1 – 3.

    Posted by Joy lloyd | February 28, 2014, 5:17 am
  388. Well done with the tips Joy……. so sorry to hear about that horrid gas though – I remember it well from when I had the TVT beast put in!!!! I have started making a “hospital list” – I might take some peppermint tea with me and also some sparkling water – I also find that Gaviscon helped – although don’t know why – how about Windeze as well? Know that it can last a couple of weeks (the gas problem) and also sorry to hear about the nausea – that’s when I thought about the sparkling water as that seems to help me too! I often suffer with nausea in the mornings, but think that it is solpadol and the amitrytiline making me feel sick then!!!

    When are you breaking free from the hospital? At least you weren’t just a “day patient” like I was promised that that’s all it took at Addenbrooke’s Hospital by my original consultant!!!!

    Posted by Anne | February 28, 2014, 1:20 pm
  389. I seem to have been able to rid myself of gas with eating soft foods slowly, and drinking mint tea. I have heard that fizzy water makes it worse. Lactulose makes gas worse too, but the trade off of soft stools is worth it.
    The swelling goes down when I lie down and gets worse when Zi walk about. It is the same feeling of having had a baby…walking holding a swollen abdomen, soreness in the same places…. Same feeling of fatigue. Just missing the baby!

    Posted by Joy lloyd | February 28, 2014, 2:04 pm
  390. Good that you have been drinking mint tea to help the gas, Joy. I ate loads of dried fruit to ease the fear of constipation.

    Loose clothes for a while make the stomach swelling bearable: laparascopes do give this discomfort and it can take a while to go. I found that talking was a problem for quite a time because of the diaphragm movement. That shut me up ;-)

    You’re doing really well and I hope that they are still looking after you. Quiet time needed when you get home too.
    Liz

    Posted by LizR | February 28, 2014, 2:07 pm
  391. Thanks for the fizzy water tip Joy, I will cross off my list!!! will peruse the mint teas though – one of my bosses drinks mint humbug tea – that sounds very yummy – would lemon and ginger be nice and soothing too perhaps? and it would be good to stock up with little packets of dried fruit to take in too!!

    Keep us in touch with how its going Joy, will be here! we are thinking of you

    Anne

    Posted by Anne | February 28, 2014, 3:40 pm
  392. I have to stay in over the weekend, due to nausea. They are trying to help me tolerate the penicillin, with anti nausea – ondazatron is working. They have me under observation due to the antibiotic allergies. I am happy to stay. I am getting rest.

    Posted by Joy lloyd | February 28, 2014, 4:02 pm
  393. Hi Joy I guess you didn’t get your discharge as you posted this afternoon ,any idea when you will get out yet,are you a local lady? walking about will help with the wind also peppermint water which use to be given by the nursing staff when I was nursing,maybe they don’t do so now.Glad you don’t have too much pain keep smiling!!!XX

    Posted by carole jarman | February 28, 2014, 4:04 pm
  394. Hello ladies how are you all today? My pain is dictating a quiet day today unfortunately! Would have liked a walk but did yoga for the over 50 s on Friday and now aching a bit more than usual :) !!! I went to the primani shop yesterday and picked up 3 nightdresses for the price of one in m and s or next so was pleased with those!! And won’t be precious if they get messed up either!!

    Joy my thoughts are with you and how you are feeling and Claire have you seen Suzy yet? She is so lovely and kind! I wish that I had taken my husband in to the consultation too but at the last minute decided I was fine to do it on my own ( and am positive that you will all understand that too!!)

    Anyway lovely ladies onwards and upwards if I rest today then work is easier tomorrow although luckily I do work from home so my office is comfortable for me !!!

    Anne xxxx

    Posted by Anne | March 2, 2014, 1:58 pm
  395. I was able to come home on Saturday, after 4pm. It took a small trial to determine which drug, tramadol or amoxicillin, was giving me the nausea. It is the amoxicillin. I knew that, but they had to check. They wanted to determine if I was allergic to penicillin, or simply had strong side effects. The side effects for me are not great, but they have given me ondansetron to take half an hour before the amoxicillin. This helps the nausea. I do still get very dizzy and weak, but will have to put up with that for two months. Thankfully I will only be on one a day. I am thinking of switching to taking it at night and sleeping through the dizziness. I am taking a slow release 50 tramadol morning and night, and it is all I need. The gas pain is minimal. I take one tsp of lactulose in the morning, and will do until I am moving about a lot more. It increases gas, but keeps everything soft. The trade off is good for me as a little gas is tolerable, but constipation and pushing is something I do not want. I want my healing to be safe. So far I am peeing easily – much more easily than before. No pain. I have been keeping a pad in place but it is rarely wet. If it gets no better than this, it is certainly liveable. But it is likely to improve. My abdominal swelling is almost fully down and it is day 5. If it were not for stitches, I would be able to wear my trousers. I am sleeping on my stomach with a pillow under my hips and abdomen, and it is not painful, and seems to have helped the swelling go down. It certainly helps me not to build gas. My main problem now it the wakefulness following being on pain meds in hospital at regular intervals day and night. I want to have a nap, but I am not able to sleep. That will pass. Taking a slow release of tramadol will help ease the transition from drugs to no. No bleeding since day two. A tiny spot of straw colour a couple of times. This has turned out to be much easier than I expected. Dr Price was very pleased with the easy removal. She did say it helped a lot that I am thin, and I think that is benefiting my healing as there will be less disruption inside.

    Posted by joy | March 2, 2014, 3:24 pm
  396. Excellent to get your updates, Joy. You are doing so well and must be thrilled. I’m very pleased for you. Liz

    Posted by LizR | March 2, 2014, 7:19 pm
  397. Glad you are doing so well Joy when do you have to go back to theJR?Are you restricted in what you can do at the moment?EMMA how are you ,you haven’t posted for a while so hope you are getting stronger each day I still haven’t got a date for my knee surgery so could have kept my gynea one which should have been next Tuesday sods law eh?!!!

    Posted by carole jarman | March 6, 2014, 1:53 pm
  398. I am doing well, thanks. I am on day 8. I can wear my jeans again. But I still prefer to have nothing touch my navel. I am tired out all the time, but still not sleeping too well from having been on tramadol. Plus the penicillin makes me fatigued and giddy. I am not wearing a pad as I hardly have any need to. But I have bought some washable mini pads so I can feel fully safe when I do get out and about.
    I am at the stage when all significant healing that I can identify has happened. This is the slow recovery part where my energy will remain lower and my stamina reduced. I am aware that I might have internal stitches and bruising and flesh wounding that is still healing, even though the external stitches and bruising is healed. So I am not lifting anything – not a full kettle or a cooking pot.
    I took a short walk yesterday. 5 mins to a duck pond, 5 mins leaning on a fence looking at the water, and 5 mins back. I was wiped out for the whole rest of the day! I think that everyone is going to have different rates of healing and different speeds. The variables are TVT pre damage, and operative difficulty, age, health, weight, medications needed, and amount of help post op. This is definitely a harder recovery than the TVT insertion.

    Posted by Joy Lloyd | March 6, 2014, 2:11 pm
  399. Hi Carole, Im doing well thanks. Im still quite tired but the soreness is reducing. I am still wearing a pad 3 wks post op, Im not sure whether this is due to urine leakage (which I didnt have before the tvt-o was inserted, so I hope its not that!) or due to some discharge following the surgery, as my surgery was done vaginally. Im going to go to the docs this aft just to check I dont have any sort of post surgery infection hanging around down there. I wont be happy if I now have to wear a pad due to urine leakage!! If that is the case I will speak to Suzy, as she has said there is another surgery that can be done to stop that. Im not sure at the min what is leaking!! It is early days. Im due back at work next wed, so I’ll see if I feel up to that early next wk. xx

    Posted by Emma Co | March 6, 2014, 2:23 pm
  400. Apart from the slight leakage, I am in less pain than I was following the TVT-O insertion. Just wish I’d never had it put in in the first place, but dont we all?!! I never wore a pad before it went in, so just hope this isnt a permanent thing! xx

    Posted by Emma Co | March 6, 2014, 2:25 pm
  401. As to leakage – the TVT made urge incontinence much worse for me. It made stress incontinence fully better. Now that it is out, I still do not seem to have stress incontinence – but it is too early to say for sure. I can cough and sneeze without leaking, but have not tried to run, nor have I coughed with a full bladder.
    Urge incontinence is the leaking when needing the loo and not being able to hold it fully in on route. I have had that a tiny tiny bit. I seem to be able to hold it most times and what I can’t hold is just a dribble not a rush. I am in such early days that again I can’t tell if it might get better with healing. It could get worse. What I do know is that the solifenicin that I had to take for urge before will definitely fix this much urge incontinence. I am remaining hopeful.

    Posted by Joy Lloyd | March 6, 2014, 2:37 pm
  402. Hi there lovely ladies – well done Joy and Emma – you sound like you are doing amazingly and Emma – going back to work next week – impressive, but are you sure? I am self employed so I am hoping that this is the case for you Emma – luckily I work at home, so will be able to rest when I need it I am sure!!

    But…… I do actually have a date for Suzy to do the op now (how exciting) – its a while off yet – 14th May, but can’t wait!!! – I just want to get rid of this blasted pain!!

    I got some new tablets today from the doctors for the urge incontinence – she has given me Neditol XL – I was on Vesicare – and something else before that – so will try the Neditol tomorrow and see how I get on!!

    Suzy said that she would review me 3 months after the TVT removal and see how I am getting on and if there is a problem with the stress incontinence she will do a Birch Colposuspension!

    Look forward to any updates, you are giving everyone hope by posting how you are doing ladies………..

    Anne x

    Posted by Anne | March 6, 2014, 3:26 pm
  403. Hello ladies

    So sorry for not being on here for an age. We’ve suffered a terrible and tragic young bereavement in the family :(

    Cutting a long story short, my GP referred me to Dr Elneil, well I thought he did, but UCLH didn’t receive it….and I didn’t realised this for a month, however the referral was sent up last Monday by fax, so I hope to see her by the end of April.

    I have an appointment at the pain clinic tomorrow and I am going armed with the latest news and print outs in the hopes that I wont be deemed a depressed nut job who cant accept simple “nerve damage”. SIMPLE!

    Can I just ask…How many ladies had undergone an abdominal hysterectomy after the mesh implant pain? I had one as I was misdiagnosed with Adenomyosis , instead of looking at the obvious….TVT!!! I never had pain before the blasted thing was put in, even when I had horrific periods that left me with a Hb of 7 and a serum ferritin of 2.5!!! Never had pain…. Why do these people NOT LISTEN TO US!!!

    Anyway…sorry for the ramble, and I’m so sorry I haven’t been there to support any recent removals and appointments. I was up all night with pain, and ive now given up work too as I cant do it anymore.

    Hopefully none of you have had a hysterectomy for no reason….but if you have, please let me know.

    Love and best wishes

    Claire x

    Posted by Claire Cooper | March 11, 2014, 10:03 am
  404. Hi Claire,
    So very sad to learn that you have had a young bereavement. The world turns upside down at such loss and it makes everything else really hard to cope with. Yet you have had ongoing pain to deal with and also not been ‘put through the system’ to get the appointment you need. It sounds as though, yet again, consultants refuse to see the damage that this ‘simple’ procedure with the ‘harmless’ mesh has done. I do feel for you.

    I can’t help with the question. But my thoughts are with you, Liz

    Posted by LizR | March 11, 2014, 10:10 am
  405. Up-date on me. It has been two weeks now. I remain slightly swollen in the abdomen. Abdominal stitches are gone. Vaginal stitches are prickling me. I have found that I do have stress incontinence again, along with urge incontinence. Both seem manageable with a pantyliner. What is really nice, although disconcerting, is that it no longer hurts to pee. This means that I am not as aware of the small leak that happens when I stand up, or cough, or am on my way to the loo. Because it no longer hurts, I can’t feel it. I suspect I will become better at feeling the sensation, and in controlling it as I continue to recover. I am hoping to start resting in a squat position, Indian style, and training my self to hold. I think that will help. I am conscious not to do much still, as two weeks means I still have healing internally that I can’t see. I do not want to damage anything. I am still very tired. It is really nice to be able to pee straight, instead of off to the side and trying to keep it in the toilet. (Funny how open I can be on a public forum. I am being open in the hopes that it helps someone else in their TVT journey.)

    Posted by Joy | March 11, 2014, 11:12 am
  406. Hi Joy,

    That all sounds really good news.
    Please, please don’t start doing squats for a long time. You need to allow longer than 8 weeks… I made the mistake of walking on sand when I thought all was healed 5 months after the removal, and set myself back badly. Just take your time. It’s excellent that at least the normal body functions are going well! Liz

    Posted by LizR | March 11, 2014, 11:19 am
  407. I don’t mean exercise squats. Should I not even do the type of sitting where you have feet on the floor and bum on heels? I won’t if you think not. I guess two weeks is really early for anything. Even a short ride in a car is not good yet. Thanks for the warning.

    Posted by Joy | March 11, 2014, 12:06 pm
  408. The physio said that it would be 2 years before the scars are all fully healed. Whilst that doesn’t mean you have to wait for that long to be back to normal, it does give a sense of proportion to full healing. Just expect it all to take longer than you are told, and don’t put stress on the healing tissue. From my own experience, I would not have been pulling my legs up much – it even hurt to do pelvic exercises several months later and that is enough to start with.

    Posted by LizR | March 11, 2014, 12:10 pm
  409. That is great perspective. I never saw a physio, although Dr. Price expected me to see one before I left. I am happy to stick to slowly building up walking on flat ground, and have a two year perspective. What is going to be hard for me this year is not being able to garden much. My healing is well worth the time and caution though. Thanks.

    Posted by Joy | March 11, 2014, 12:19 pm
  410. Im still very sore in the area that was sore prior to the tvt-o removal 4 wks ago… I keep thinking all is fine and doing normal stuff, like going for quite a long walk at the wkend… I know about it afterwards though! Ive been very sore since the walk, so I wont be doing that again for a while, just a short stroll from now on for a few wks I think! Ive been doing some pelvic floor exercises too as Im leaking a bit when my bladder is full, but that too is making me very sore. I was due to go back to work tomorrow after 4 wks, but Ive been back to the docs for another sick note for another wk… might even stretch it to two!… I feel bad being off work this long again though, as I was off for 10 wks when I initially had the tape inserted in sept last yr, and Im sure they will think I am taking the mickey with all this time off! xx

    Posted by Emma Co | March 11, 2014, 12:59 pm
  411. Firstly Claire it is worth giving UCH appointments a call on 0203 456 7014 if they’ve been faxed your letter – that’s what I did and was given a cancellation appointment which of course I took with pleasure!! My pain clinic appointment (at Addenbrookes) is for 2 days before my surgery – I am going to cancel it – couldn’t believe that I had to wait 5 months for a pain clinic appointment!!!!!!

    Oh and Emma and Joy please keep posting – we are going on holiday just 5 weeks after my op – but luckily we decided to stay in this country this year (although I have been trying to persuade my husband that we should wait until September instead!!) He will probably suss it out when he sees what its like just to do a small walk and we haven’t booked anything (and as I am self employed I can take when I like)!!

    I too know what you mean Emma about work thinking you were taking the Michael!!! I too had that after the flaming TVT op – I went back after 6 weeks and was quite quickly sent home again after the MD saw that I couldn’t even walk or stand up properly!! I had 12 weeks off in the end!!!! I am planning on working from the sofa – I am now a self employed Virtual Assistant and work from home!

    and Joy, your description of you going to the loo (I did have to have a chuckle, sorry) it takes me an AGE to go to the loo these days – and then when I think that I have finished I have to make a pad with loo paper and press on my anus to get more out!!! Yes, I too hope that this will help others!!! That is quite good news that you only need a pantyliner though – I had wondered about starting to stock up with tena ladies!!

    I am going to over 50′s yoga on Fridays (and think I am the youngest in the group, as sure they all go for a cuppa afterwards, I have to come home to finish work) and boy do I know about it on Saturday – I will keep going until the op as am sure its doing me a bit of good – as they say, no pain no gain!!!!!! LOL

    I just hope that there are ladies out there who see all our posts BEFORE they have the dreaded TVT op and decide against it – this post only started after I had had mine – I desperately tried to find stuff on the internet after I had had it done and was in such pain as I thought that I was the “only one”!!!!

    Anne xx

    Posted by Anne | March 11, 2014, 2:02 pm
  412. Hi Anne, What’s a Virtual Assistant, and how did you get into that sort of work? I wish I could work from home, it would be so much easier than trying to drag myself into the office after this horrible op! xx

    Posted by Emma Co | March 11, 2014, 2:18 pm
  413. Hello Claire, I am responding to your comment about hysterectomy and mesh removal. This time last year Suzi ElNeil removed my mesh and did a hysterectomy at the same time. I can honestly say (and not to frighten anyone) the pain was incredible, despite every medication every hour but I would still go through it again, and it took me probably 6 months to be relatively pain free. However… now one year on, I very rarely have pain. I am stress and urge incontinent and tena lady are my best friend… but do you know what!!???…. every bit was worth it. That horrible cutting, burning terrible deep pain has gone…and I will love Suzi El Neil until the day I die for giving me my life back! I couldn’t do anything hardly before it came out and had endured six years of pain with bowels, burning, cutting, feeling unwell, foggy brain.. and now….. yes a bit of inconvenience…. which I can always get sorted with her with a Burch Colposuspension when I decide to… but… I have a life again. Please hang on in there….all of you. Get that dreaded mesh out… for me … whatever the consequences.. life has a new normal and look forward to normality xx Good luck ladies… I don’t sign in very often but I read all of your comments xx

    Posted by Lizzy Blanch | March 11, 2014, 6:54 pm
  414. Hi Emma a virtual assistant is a pa but I work for 4 different bosses and companies at home!! It is great I have to say! I got made redundant 18 months ago and after not being able to get another pa job being a lady of a certain age ! Lol you don’t have 30 years experience if you are young!! I decided to set up on my own and started by going to network meetings where I met someone who put me touch with a va company! I work for them now and we are 5 lovely ladies who all work at home. We also do call handling so need to be in the office from 9 – 5 but can take time out whenever ! We are going to train my husband up to do call handling too when I go into hospital…. he is retired! So basically I spend my days sorting meetings out or sending out quotes for a spiral staircase company or entering receipts on a spreadsheet! Thank goodness for dropbox and email!! Xx

    Posted by Anne | March 11, 2014, 7:02 pm
  415. Thankyou for your comments Lizzy, it gives me hope that soon I will feel better. At the moment, one month after my mesh was removed by Suzy I am feeling very sore (went for a 1 1/2 mile walk on sunday and that was a very bad idea I am finding out now!)… Thankyou for letting us know that things will improve. I am still glad I got the mesh removed, and am due to see Suzy in June for a followup. I too am having a bit of stress and urge leakage, but in time will also probably look at a Burch colposuspension to sort that out. Anne – I am so envious of your work from home lifestyle! I would love to do that….. how did you find the network meetings you went to which led to you setting up your own business? The call handling sounds great too… I have done that most of my working life, and currently work as a complaints handler for a Customer Relations dept at a Finance Company. Did it take you a lot of money to set yourself up as a VA and do you have any contacts I could get in touch with about possibly setting myself up? Might be easier to email me direct? xx

    Posted by Emma Co | March 12, 2014, 11:08 am
  416. Hnag on in there Emma… even if you are left with a few problems after removal… believe it will get better! The dreaded mesh is out, your body can start to heal and detox against the chemicals. One year on.. the brain fog has gone… I used to hardly know what day it was some days… my mind is a lot clearer and quicker now. I also see a homeopath who helps me immensely and of course manuka honey! You are doing brilliantly…I just feel now things are good… even if I do have wet pants a lot haha!! lol x

    Posted by Lizzy | March 12, 2014, 12:24 pm
  417. Hi All, I wonder if anyone could help me with a question regarding leaking after TVT removal. I had my TVT-O removed four wks ago by Suzy Elneil and find to my dismay that I am leaking quite a bit, and having to wear a pad during the day/night. I didn’t have this prior to having the tape inserted, so I didn’t really expect to have this following removal. Prior to having the tape inserted I just had mild stress incontinence when I laughed or sneezed a lot, nothing much at all. Now I find I’m having to wear a pad. Suzy Elneil did say that I may need further surgery if my incontinence returned after removal (Burch Colposuspension), and I wondered if anyone on here has any experience of that surgery, and whether it helped. I really don’t want this to be a permanent thing – I’m too young at 53 to be incontinent!! xx

    Posted by Emma Co | March 14, 2014, 3:50 pm
  418. Hi there Emma – ohhhh noooooo! poor you! Suzy told me that I may need a Burch Colposuspension too – my friend had one of these years and years ago and it is apparently marvellous – I am so going to go for one of those if my problems return – I couldn’t even pick my grandchildren up or even put washing in the washing machine ( I also feel that I am too young – LOL 59 tomorrow!!! ha ha!!) – hope this helps? Wish we’d been offered one of those to START with eh????? xx

    Posted by Anne | March 14, 2014, 4:50 pm
  419. Hi Anne, Yes I’m def going to ask Suzy about this. I don’ understand why I’m getting this leaking now when I didn’t have it before the TVT-O was inserted! Anyway, it must be something to do with the surgery I guess. I’ll see what she says, but I’m not putting up with this if something further can be done to help! Work will love me – 10 wks off when the tape was inserted, 5 wks off when it is removed, and now further time off if I have the Burch Colposuspension op….. oops! Oh well what can I do?! Yes wish we’d had the Burch Colposuspension initially! And 53 and 59 are far too young to be incontinent! I’m a bit worried how this new leaking problem may affect my sex life now!!!! xx

    Posted by Emma Co | March 14, 2014, 5:00 pm
  420. I am finding I am leaking more now too. I am 17 days post surgery. I have to wear a pad day and night. It is not a lot, but it leaks/dribbles when I need to go – urge, and it leaks when I sneeze – stress. I am waiting until I get past my 6 week check, and then trying solifenicin for the urge. My only concern is that I do not get infections. If leaking a bit is the price I pay, that is fine with me. Yes, I am also young at 49. I do not want to go in for more surgery though. I have bought panty liners that seems to be enough. What is great is the lack of pain, and the ease of peeing. I had forgotten that it was an easy thing to do. I have no prolapse, so I will have to see if time will give my sphincter more tone and memory.
    Emma, it is early days still for both of us. Limit your tea drinking, and be patient. It may get better.
    Joy

    Posted by Joy | March 14, 2014, 5:06 pm
  421. Hi Joy – Its good fun all this isn’t it?!! Oh the fun of the TVT!! I am glad I’ve had the tape removed, but I’m not very happy about this leaking…. I’ve emailed Suzy who says it is to be expected and that she will make arrangements for me to go and have uro dynamic testing done as soon as possible, and then discuss further surgery. I will def have the Burch Colposuspension surgery if this doesn’t stop. I’m a bit concerned about leaking during sex when all is healed down there – do you know if this is likely to happen? xx

    Posted by Emma Co | March 14, 2014, 5:53 pm
  422. Hello Emma, Anne and Joy

    I had a Burch colposuspension fitted by Miss Elneil two years ago with very good results. I also had a colposuspension at 32 and it lasted for 14 years again with a good result. I did not find the procedure particularly painfull but you will be in hospital. Please don’t hesitate to have it done because as you say you are too young to be incontinent. All the very best of luck with that and if you have any questions don’t hesitate to ask.

    Ann x

    Posted by Ann Boni | March 14, 2014, 5:58 pm
  423. sorry there should have been a longer after hospital Ooops

    Ann x

    Posted by Ann Boni | March 14, 2014, 6:00 pm
  424. Hi Emma and Joy
    Sorry to hear you are having stress incontinence issues following removal. It is hard to predict whether you are going to have problems following removal, as not all women do have a return of symptoms. I know others that have been fine. Unfortunately, some women do report symptoms returning even worse than before the mesh was inserted and I guess this is not surprising given the delicate tissues surrounding the urethra and how the mesh tape embeds itself in this area and how this tissue must be cut around or even cut away? I’m no expert but I can only imagine how tricky this surgery must be and that is the horror of mesh ie it is so difficult to remove because of the way it embeds itself into tissues. It does seem to be pot luck with what happens after removal but most women are still relieved to have their other complications resolved. I hope you can get some resolution eventually even if it does mean surgery and time off. Emma, please don’t go back to work before you are fit because you will regret it – unless your job is part-time and involves sitting down all day – you will find it tiring when you go back as it is not like pottering around in the house and going for the odd walk. I took 9 weeks off after removal. Joy, please don’t do any exercises involving squatting!! This puts excessive strain on the pelvic floor and I am sure is not recommended for anyone recovering from pelvic floor surgery. I would ask for a referral to a gynae physiotherapist.
    tvtinfo

    Posted by tvtinfo | March 14, 2014, 6:31 pm
  425. Hi All cant remember who asked what so will just have a general “chat” I am some one who has all sorts of gynea surgery over the years,sadlly my bladder and pelvic floor have been the bane of my life for many years now I had a Birch Colposuspension way back in 1994 which helped for about 6 years altho I did have a lot of trouble with bladder instability for 12 months or so after .In 2000 I had a hysterectomy due to what the consultant thought to be a uterine prolapse,not so tho as I still had the prolapse post op!!! I was refered to a different consultant who carried out a sacrocolpoplexy which is a more drastic sort of pelvic floor repair,this is done thro an abdominal inscision same as a hysterectomy.This was ok for a couple of years and then I had the dreaded tvt inserted as whilst I had no stress incontince I still had urge—–Are you still with me ?!!!!—-2 years down the line my tvt was found to be occluding my bladder making it hard for me to empty my bladder—so uncomfy!!—my tvt was cut and at the same time the nice chap perforated my bladder—you couldn’t make it up could you?!!!I had a gents catheter in situ for a month and was ok after that altho of course my incontince returned A year later I had an op called an apogee which again is a prolapse repair but for the posterior of the pelvic floor 2of my repairs were done using mesh hence Natalia doesn’t know if my pain is caused by that or by more,as she hopes,the tvt threads left behind.Any one worrying about a bit of incontince please don’t be,its not nice at any age I agree but such a small price to pay I have been unlucky ,so very many ops are so sucsessful please if you have the chance get the mesh out of your body
    good luck all of you XXX

    Posted by carole jarman | March 14, 2014, 6:37 pm
  426. Bless you Carole what …..! And no you couldn’t make it up!! Lol I was,going to answer to Emma what’s sex?? Even if it is my birthday???? When you have as I call it bad period pain 24/7 what the heck? Love and hugs to you all x we should all get together and have a tvt removal party although realise that from 14th May my life will be somewhat restricted for a while xxx 8 weeks today!! Xx

    Posted by Anne | March 14, 2014, 7:04 pm
  427. I do not think leaking during sex is likely. If you are incontinent only with stress or urge, it should be fine. If you are incontinent and leaking or dribbling even when you do not cough, or even when you do not need the loo, then that might be a worry.
    I am not at the trial stage yet. Natalia repaired the lesions at the top of the vaginal vault that formed in the last two years after a hysterectomy 15 years ago. At least she said she repaired them. They seem to be worse than before. I will see her at my six week check and ask if she can sort them out, as sex is out of the question if those lessions are not fixed – way too painful.
    I won’t do squats. Is cycling a no no as well?
    I am walking more, and even that takes it’s toll. This surgery feels like it needs a whole lot more care and protection than the hysterectomy and the tvt insertion. I suppose that is because those had things put in place, whereas this has something removed. That leads me to think I am a lot more vulnerable to accidental harm.

    Posted by Joy | March 15, 2014, 12:13 pm
  428. Hi Joy, Emma and co
    Please do take the point I made earlier that this is a long road to FULL recovery but everything really does heal up well in a few months and then it still takes a couple of years for the tissue to be as strong as it was before. Keep that in mind and tell the family so that they know to help you. For several months just don’t take any risks tiring your poor body, or straining the new tissue and healing. It’s best to stick to walking but not miles! You are so recently out of hospital, Joy, so please don’t expect this all to be a quick process. I think i sent you my recovery diary a while back and it might be worth re-visiting.

    After internal ops it can take 6-8 weeks for the internal healing to slough off the dead cells inside and they will collect as a grey/brown colour. That is quite an unpleasant process (scared me a lot! no-one told me!). Just be patient with the healing.
    I have a difficult week ahead so might not be following the posts much. Liz x

    Posted by LizR | March 15, 2014, 12:25 pm
  429. Hello Anne and everyone.
    Hope this email finds you all as well as can be expected. I’m really sorry for not replying sooner….I’m just so very down and in so much pain I’m climbing the walls. I did call outpatients appointments Anne as recommended but no joy for a date as yet, apparently I’m on the list to be seen in June(was referred end if Jan) but I’ve been graded to be seen by end of April by Dr Elneil so the managers are trying to sort something. The clinic is chocca. I wish I could afford to see her privately. I ended up at the local hospital on Saturday with yet another urine infection, and it just can’t get on with anything for pain. Very short of money due to giving up work. I had an appointment with the pain consultant last week who urged me to up my dose of Pregablin now I am unemployed, and I have done so….but really wish I could claim some sort of income support as I can’t even drive on this dose.
    Sorry to be so morose, I just don’t know what to do. Today the pain is so bad down into my left hand groin it’s difficult to walk. Surely this counts as sick? I don’t want much, but a little money towards prescriptions or a bus ticket would go along way to giving me back some control over my life.

    Fed up, so fed up. I’ve been like this since Sept 2011 now.

    Love to all xx

    Posted by Claire Cooper | March 18, 2014, 12:22 pm
  430. Hi Claire, So sorry to hear of your problems. I am sure you would qualify for ESA and possibly DLA if you contact them. My daughter had to give up uni due to ill health a couple of yrs ago and she qualified to claim both. That would def help you pay your bills in your current circumstances. Also I would email Suzy Elneil direct and tell her of your plight – she is a lovely lady and I am sure she will do her best to get you into her clinic sooner. I did that and she pulled out all stops to help me. If you want to email me direct I can give you her contact details. You shouldnt be suffering like this without any help. Emma.xx

    Posted by Emma Co | March 18, 2014, 2:15 pm
  431. Thank you Emma x I do have Suzi’s contact details, I just seem to have lost my confidence to stick up for myself. Even as I type this I don’t recognise the woman I’ve become. Perhaps I should email her again, I did in the first place you see after heating her on Radio 4 and she came straight back to me on a Sunday. Bless her.

    Perhaps I should call the DWP or whomever it is. I’ve never claimed for anything before and wouldn’t want to be seen as a leach on society. I’ve always worked, only part time after the boys, but the loss of independence is hard. You feel a double burden.

    I think I will use your encouragement as a prop and get on the phone and email. Thank you again

    How are you now? X

    Posted by Claire Cooper | March 18, 2014, 3:09 pm
  432. I just sent an email to Suzi. Thank you again for the encouragement. X

    Posted by Claire Cooper | March 18, 2014, 3:20 pm
  433. The feeling of being a leech on society not a fair one. Insurance means you put into a system and, when you are in need, you claim. A national insurance is a system that is large and spreads the costs fairly effectively. Claim for your needs. You have worked and paid into the system. Now you are in need. Claim for any and all the needs you have without any guilt.
    If you are in a lot of pain, call Suzi and tell her. I am sure she would like to know. She wants you as healthy and well as possible for your operation. If you are getting worse, she would want to know.
    Meds can make us feel all sorts of odd things. You are not to blame for the pain. You are not at fault for needing time off work. You did not choose to be suffering. You are not to blame. You are certainly not a leech on society if you take benefits while you are ill and out of work. Take care of yourself. It is the best thing you can do for you, and it is the best thing you can do for society as well.

    Posted by Joy | March 18, 2014, 5:45 pm
  434. Hi Claire am so sorry to hear how awful you are feeling I can only suggest you make a “pest”of your self and if you don’t get an earlier appointment from Suzie after your email then ring her NHS secretary on a weekly basis to see if she has a date for your appointment .As a retired nurse I know how easy it is to misplace folk on the waiting list!!!!As to your pain meds they certainly seem to need to be upped but that is easy for me to say,being an oldie who no longer pays for hers.Have you thought of giving the citizens advice place a ring to see if they know some thing you don’t about getting financial help.Please don’t feel awful about trying to claim ,am sure you have more than paid your way in the past Take care xxx

    Posted by carole jarman | March 18, 2014, 6:21 pm
  435. Hello Emma, Joy, Carole and all ladies.

    Thank you for your amazing support and encouragement. I emailed Suzi and she came straight back to me, with a copy of an email she had sent to her secretary saying to overbook her clinic on the 31st march as she wants me in that day. How amazing is she. I am overwhelmed by how patient focused she is. It is such a weight off my mind I can’t tell you. If I hadn’t written my post earlier I’d have never braved the email. So I’m very grateful to you Emma and for your replies too Joy and Carole.

    I spent 55 minutes on hold to the benefits agency but then their offices closed for the night. But I am going to try and see if there is anything I can claim. I have always worked as has my husband, always paid our taxes. In fact I am ex NHS and local government so no wriggle room there.

    I shouldn’t have just walked out if my job, but when you face occupational health advisors after two days off, something has to give.

    God bless you all for being there x

    Posted by Claire Cooper | March 18, 2014, 6:55 pm
  436. Thanks to all of you ladies for providing support and and advice to one another. It is really good to know that this site is helping women and also getting the message out about the dangers of mesh. Let’s hope we can get this dreadful mesh implant issue resolved before more women are harmed.

    Posted by tvtinfo | March 18, 2014, 7:52 pm
  437. Hi Claire, Yes def email Suzy Elneil again, I was forever emailing her before she removed my tape, she was lovely and very understanding, she knows what we women are going through. If you email her and tell her what constant pain you are in and how miserable it is making you I am sure she will do her best to get you seen earlier. I can understand you feeling you have lost your confidence, when you feel so ill you do feel weak and vulnerable, but just pluck up your courage and send an email asking for her help. And definitely look at claiming ESA and DLA, you are as entitled to claim those benefits as any other people who are ill and claiming them, so ring up and ask for forms to complete. You will feel less stressed and more able to cope if you know your bills are being paid. I have contact details if you want to get in touch with me, or google them.

    Im feeling better though still quite sore down below, and leaking a bit… Im waiting to go back to London to have uro dynamic studies done to check whether I have stress and/or urge incontinence, and then I may need another op. Im going back to work tomorrow, but only for two days this week. Im hoping I’ll be okay.

    Anyway, good luck and let me know how you go on. Emma.xx

    Posted by Emma Co | March 18, 2014, 10:26 pm
  438. Hi again Claire, Just read your other post, and Im so glad you got in touch with Suzy and she’s brought your appt forward, I knew she would do, she really is a very caring woman. Now get in touch with ESA and DLA and you’re on your way to feeling better in all areas. Good luck, keep strong. xx

    Posted by Emma Co | March 18, 2014, 10:29 pm
  439. Oh Claire I missed all this going on last night as was “out” at a business meeting with the other VA’s I work with!! Poor you Claire, but I am sooo glad to hear that you got in touch with Suzy though – I would have told you to do that too!!! I tell you when I left her I gave her a big hug and a kiss I was so grateful to her!! I just wanted to cry with happiness that someone is so understanding – just wish I’d had this site before I found you all.

    When I am off sick I was going to get in touch with the ESA – as not sure how I am going to sit at my desk all day every day – although of course I can sit with my lap top on my lap for a bit I am sure on the sofa with my feet up!! although the scrambled brain probably won’t work properly to be honest!!!

    Believe me Claire we all understand how you feel – becoming people who we aren’t – this flaming pain business!! Sometimes I am so horrid in the mornings, before the meds kick in – wish we could “sue” TVT manufacturers for all the rubbish we have had eh?

    Anyway, just wanted to send my love and thoughts to you, but had better do some work, ie pay a parking ticket that one of my chaps got before it goes up!!!! LOL – my job is very diverse!!

    Anne

    Posted by Anne | March 19, 2014, 9:14 am
  440. Hello again my friends,
    I’ve spent most of the day dozing as I had to give in the the pain meds and just kick back today, I think that may have been a lot of what sent me feeling so very low…overtired ness due to lack of sleep and of course, pain.
    I did however call the DWP and I have started a claim for ESA and boy does it feel good just trying for it. I’ve written to my pain clinic consultant and asked for supporting evidence as well. I think it will have more clout coming from her. My husband has booked the day off work to travel to UCH with me too. So while the dog hasn’t been walked yet, and it looks like microwave jacket spuds again for tea, I do feel I’ve gained a bit of momentum today. I have you all to thank for the encouragement. I’m so grateful.
    Before my mesh, my friends and family used to joke that I ought to be a Professional Party Starter because I was always the first on a dance floor. I worked hard to balance my life as a parent with my job and a husband that works overseas 60% of the year. I was a volunteer mentor, did evening classes, climbed trees and went to football matches with the boys. I’m not this woman sat here now in her dressing gown at 4pm. I know the old me is in here lurking and I can’t wait to see her again. I’m sure that sentiment goes the same for all of us.
    My love and gratitude to you all once again xxx

    Posted by Claire Cooper | March 19, 2014, 4:45 pm
  441. Hi there Claire, so glad you have listened to your body today!! My GP upped my amitriptyline a couple of weeks ago and now I take 3 early evening ( I ve finished work at 5 today so have just taken them!!!! As she says that they are great for pain and they do actually manage to keep me asleep ALL night! Just a thought! I am not going to the pain clinic now as my appointment is two days before my op!! Bring it on is all I can say!! It’s like looking forward to Christmas, really exciting, now how sad is THAT? Although I know that you will all know what I mean!!!

    Take your husband in with you too…. I didn’t but actually wished I had as know that it would have given him more understanding of what you are going through…. If yours is anything like mine although he knows I am in pain he doesn’t really understand it, I don’t think??? Does anyone else understand that concept? Bless him!

    Lol I am still waiting for my urgent take it out op in the day surgery unit in Cambridge!! It will give me so much pleasure when they finally ring me to say please don’t bother and that I already have an op date at UCH!!!

    Have as good an evening as everyone can, I can’t wait to not be drugged up all the time……… Although I did manage an evening out at Pizza express last night with my lovely colleagues… As long as I don’t do it too often as I did have a worse tummy ache today for my sins!!! I too am normally a party animal, we’ll perhaps I’d better start acting my age now……!!!

    Love and hugs To you all Anne xxxx

    Posted by Anne | March 19, 2014, 5:33 pm
  442. Just a thought …… On my Facebook page sometimes a solicitors pops up and seems to know that I might need to claim for TVT removal!!!! Does anyone else have that I wondered and has anyone else gone down that route..??? We could all do with a VERY nice holiday to recuperate :) xxx

    Posted by Anne | March 19, 2014, 5:40 pm
  443. Hi All, Well I wish I’d listened to whoever it was who told me not to go back to work too early! I went back this morning 5 wks after my TVT removal, and I’ve just driven home in tears… I wasn’t too bad this morning, but later this afternoon the pain and soreness was just too much, so I ended up leaving work earlier than I had intended, looking and feeling like death! Sitting down at my pc is the worst thing for me, with my pain being underneath, in the left buttock bone area – oooh honestly it was awful. So I am now going to have to go back to the docs again tomorrow for yet another sick note – I can’t sit at my office desk with this debilitating pain. I’m sure work won’t be happy but nothing I can do!! I think I will also email Ms Elneil and ask if she will write me a covering letter that I can forward on to HR, so hopefully they will continue to pay me! Hopefully!!

    Can I just ask what painkillers you ladies take, as I have been taking Naproxin and Paracetamol, and that just wasn’t enough today! I’ve not been too bad at home, as I can move around more, and move away from the pc when I start getting pain. At work I can’t do that, I’m stuck at my desk.

    Anne – Do you mind me asking who you got in touch with about VA work?… if I continue like this I am going to have to look at trying to work from home.

    Emma.xx

    Posted by Emma Co | March 19, 2014, 6:24 pm
  444. Hi Emma oh what a shame about work!! Lol I was like that going back to work after the TVT until my boss actually saw what I looked like! Although I did actually get made redundant which is why I started my VA business! I went to a networking meeting and met an accountant who introduced me to The VA Partnership! I had to buy in to it though, and luckily had my redundancy money still to be able to do that, I also went to Wenta which is a company that trains you, that was through the job centre, to run your own business! There may be a virtual assistant company in your area too as it is important to keep in touch with the others!! My email is annecook1955@gmail.com if you want any more info!

    The meds I take are solpadol and amitriptyline which just about keeps it ok!! Hope you GP helps although I am sure she/he will! Now rest up and don’t even think of work for a while! I am sure your colleagues will have seen how you were! What do you do? At least I will be able to do something from the sofa…with my feet up!! Those are my plans anyhow!!

    Anne x

    Posted by Anne | March 19, 2014, 6:56 pm
  445. I am very happy to report that, so far, taking solifenicin (vesicare) for urge incontinence has almost fully resolved the problem. I say almost because holding on and trying to finish something before going to the loo may be possible now, but not smart to have strong pressure or to test the boundaries at this early stage.
    I still have a stitch vaginally. What do I do? It should have dissolved by now. Do I go to my GP nurse who is not gynae, or do I wait for my post op check, or do I phone the ward? It is not bothering me, so I could wait.

    Posted by Joy | March 20, 2014, 9:39 am
  446. Hi Joy, I’ve also just started taking solifenicin for urge incontinence, and have yet to see a difference, but I’ve only taken three tablets up to now. What dose are you on? My doctor has started me on 5mg once a day, when Ms Elneil suggested 10mg! I think my doc wants to see if 5mg helps first. I also have a stitch left internally, which I think should have dissolved by now also. I was also wondering whether to ask the nurse at my doctors surgery to remove it or leave it alone. What do you think?

    I went back to work yesterday, and was so sore sat at my pc that Ive stayed off again today, and am going back to my docs this afternoon to get another sick note for two more wks initially to see how I go. The worst thing for me is sitting upright at a pc/office desk as my soreness/pain is underneath in my left buttock bone area. Not nice! xx

    Posted by Emma Co | March 20, 2014, 12:31 pm
  447. I was taking solifenicin before my tvt removal. It is one thing that I needed after having the tvt put in that I had not needed before. That being the case, I just started to take it again. I took 5mg one morning, then 5mg in the evening, then 5mg in the morning to get it working, then settled down to 5mg every evening. When I took it before, I sometimes needed to take an extra. Other times I needed to stop taking it for a few days as it seemed to work too well and inhibit my ability to pee. My GP said it is a drug that can be used on an as needed basis without any dangers. I always stopped when I had a UTI. It makes you thirsty. I seems to get a faint and wobbly on it to start with, but have found that lucozade is very effective – also re-hydration salts.
    I don’t know what to do about the stitch. I don’t want a nurse messing with it really, so I think I will wait until my post op assessment. That way I can get an internal examination for sure, which would give me peace of mind, as I have some other questions to ask. It is not easy to ask for an internal without a specific reason, is it?
    I do find sitting makes me a little sore. Hard chairs. Upright chairs. Soft chairs, unless I curl up my legs and semi recline. Take as much time off work as you can. When you go back, see if you can vary yourself lots. Standing. Sitting is different positions or trying types of cushions. Maybe a chair that is designed to kneel/sit at.
    I hope you can get rest now.

    Posted by Joy | March 20, 2014, 12:49 pm
  448. To all you girls that are finding it painful to sit I know what you are going thro only too well,I have got a “donut”to sit on its a bit like a rubber ring but covered in a material and more of an oval shape.I do find it enables me to sit at the table to eat a meal !!I I take Gabapentin to the maximum daily dose and also Tramadol 500mgs when I need more pain relief ,usually if I have been sitting for awhile.I still don’t have a date for my knee revision surgery ,really don’t want to have to defer my surgery with Natalia again but may have to if I don’t get a date soon .Have been on the waiting list for over 17 weeks now so have emailed our MP to see what is happening !!
    Take good care all of you xx

    Posted by carole jarman | March 20, 2014, 3:10 pm
  449. Hi Carole, A donut sounds like a good idea, I might have to invest in one of those! xx

    Posted by Emma Co | March 20, 2014, 4:19 pm
  450. Hey everyone

    I was just wondering you you were all doing? Emma, did you get another sick note? How are things going with you?
    I’m still in silly pain, something very weird must be going on in there. My paperwork arrived from the benefits department today so I’m just waiting a sick note myself and fingers crossed i maybe able to get a little cash to take away the sting a touch.
    Feeling very much like litigation against someone, something….and I was always such a anti suing type person. Amazing what pain does to you!
    X

    Posted by Claire cooper | March 22, 2014, 3:53 pm
  451. Hi Claire, I’m fed up to be honest, still feeling very sore in the area where I was sore prior to removal surgery, in fact its worse now, not better….. I’m hoping this will ease in time! Ive been back to the doctors for another sick note, but work has now decided to stop paying me, so I’m in a bit of a mess really, and I’ll prob have to go back next wk rather than having two wks off sick to try and feel a bit better. I’m taking paracetamol, naproxin and codeine now, and don’t feel like doing anything much at all….. I’m feeling very lethargic and not in the best of moods, but as you say thats what pain does to you! Hopefully brighter things are round the corner for us! xx

    Posted by Emma Co | March 22, 2014, 4:58 pm
  452. Oh sweetheart, you do sound fed up. I’m sorry you are finding you’re still in so much pain. Have you checked through the posts to see how the other ladies were after removal? Can you get ssp? Or have you used all of your weeks up? If there is anything practical I can do to help, forms or phone calls let me know. Codeine can make you feel very sleepy, but I know sometimes it’s the only choice. Perhaps after a week of feet up you’ll be ok to return again. Would your employers let you be flexible? Gradual return? Thinking of you.
    X

    Posted by Claire Cooper | March 23, 2014, 12:39 am
  453. Hugs

    Posted by Joy | March 23, 2014, 9:20 am
  454. Hi Claire, I’m sorry for sounding such a misery, but Ive been in quite a bit of pain for a few days so am feeling quite sorry for myself! I’m sure things will improve, I’m only 5 wks post surgery and I don’t think Ive been taking things as easily as I should have been, which is probably why my body is now reacting as it is! I find it difficult to just rest, and that has probably been my downfall…… Up to now today I’m not feeling too bad. I’m sitting on my foot when I sit at the pc so as not to put any weight on the sore area on my left underside…. I’m gonna try and buy a ring to sit on tomorrow if I can find one – hopefully that might help when I go back to work next thursday. They’ve stopped paying me so I can’t stay off on sick any longer. I am going to ask if I can take some of my holidays though, and maybe work a 3 day wk for a month or so…. that may help.

    I think you’re right about the litigation – there must be a solicitor somewhere who can fight this for us….. these mesh things need to be banned from use, and us women who are now suffering because of them and losing money through not being able to work should be able to get some sort of recompense. It isn’t our fault that we are suffering like this. xx

    Posted by Emma Co | March 23, 2014, 1:42 pm
  455. Hi Emma

    Sorry to hear that you are in lots of pain and that your work will no longer pay you while off sick. Before going back to work you could have asked your GP for a “phased return” on the fit note which could have stipulated no prolonged sitting, no prolonged standing and no heavy lifting for a specified period and it could also have stipulated a gradual building up of hours, eg, in the first four weeks of your return. This is a good idea because we often feel great at home a few weeks after surgery when we are allowed to rest and move around as we feel the need, but at work it can be full on when you get back and nobody can see that you are still healing inside because there are no plaster casts or bandages to show if you know what I mean.
    I know what you mean about the sitting on the foot – I used to do this too as it kind of provides that little lift to take off pressure from sitting. The donut cushion sounds like a good solution and I guess you could disguise it when you get back to work by throwing a sweater over it perhaps… Or be brave and proud of the cushion and then people will see that you’re recovering from surgery!
    As for the legal stuff, well I think we might need another post about that because some of the followers on this site have been through this channel with varying results. It is still early days with mesh litigation.
    tvtinfo

    Posted by tvtinfo | March 23, 2014, 9:53 pm
  456. Wow! So many similar stories and such a relief to hear of others who have been through tape erosion too. My story is nowhere near as much of a nightmare as some of them on here and I have had other medical complications as a result of my tvt but I have felt quite alone over the last three years and reading your posts have really helped me.
    I had my tvt put in in 2011 for fairly mild stress incontinance. Unfortunately I couldn’t wee after the procedure and had to be kept in hospital and catheterised. The trial without catheter didn’t work and the next week I had another op to loosen the tape, a urethral stretch and to put a supra-pubic catheter in. After a couple of weeks I was able to wee on my own again and life started to go back to normal until a couple of months later when I noticed something sharp inside my vagina! I called my amazing Uro-Gynae nurses who had me in straight away and sure enough said they could see something blue sticking out of my vaginal wall which would have to be removed asap. I then had surgery a few days later and had the tape divided. Unfortunately I had the same problems with retention and learnt to self catheterise every time I needed to wee but after a few weeks managed to wee on my own again and apart from recurrent UTIs, life resumed as normal again.
    The UTIs persisted and despite weeing on my own for 9 months, I went into complete urinary retention in 2012 for no reason whatsoever. I had another op to put in a suprapubic catheter again as self catheterising was causing me so much pain and I have had it ever since.
    In the meantime I was having terrible pain in my groin, down my leg and in my bum but this was thought to be back pain and I was referred to a neurologist who poo-pooed all my symptoms after clear MRIs of my brain and back and made me feel like my problems were all in my head. Luckily my Uro-Gynae surgeon has been very supportive throughout all of this and put me in touch with Miss Elneil. She has now diagnosed Fowler’s Syndrome and I had the second stage op having a sacral neuromodulator fitted last week. I can now wee on my own again and feel like I am getting my life back in track.
    However, I still get pains in my groin sometimes and although my leg and bum pains disappeared last year out of the blue, I wonder whether I should ask her about the rest of my tape. I have always assumed my recurrent UTIs are due to my indwelling catheter and when I have this removed next week I will have a better idea of this if they go away or not. I mentioned my groin pain and tape to my GP a couple of months ago as it had got really bad but she said it was probably nothing to do with it. Now I’m wondering again. As my pain comes and goes though, does this fit in with tape problems in your opinion?
    Suzi Elneil is amazing as many of you have said and I am really grateful that my original surgeon contacted her and referred me to her without any hassle at all. I can’t recommend her highly enough!

    Posted by Sar | March 23, 2014, 11:50 pm
  457. Hi Sar, You sound like you have gone through a nightmare over the past 3 yrs…. and yes I would definitely ask Ms Elneil about having the tape fully removed, as it does sound like the pains you have had and are getting are caused by this. Many of us have the same pains, in different places, and certainly in my case the pain was intermittent before I had the tape removed. Ms Elneil told me she is removing three of these tapes per wk now, so she will understand your concerns. Good luck and lots of hugs. xx

    Posted by Emma Co | March 24, 2014, 9:56 am
  458. Hi Sar Welcome to our club of tvt grumblers!!!!You have been thro the mill haven’t you, I can feel for you re the retention as I have had spats of this myself ,usually when I have had an anaesthetic ,and have gone thro the agony of a uti following self catheterization I had to have my tape split as it was occluding my bladder and I couldn’t wee well I now have mesh particles in my vagina that are making me so sore when I sit and need to be removed before they cause more problems .Unfortunatly I have had to defere surgery once as I am waiting for major knee surgery .I recommend a donut to sit on for any one who has a similar problem they do take the pressure off for a while ,altho I still have to take 500mgs Tramadol to back up my 800mgs Gabapentin if I am making an evening of it !!! Hugs to you al xx

    Posted by carole jarman | March 24, 2014, 4:41 pm
  459. Hi All, I’ve just bought myself a donut cushion to sit on at work… I’m trying it out while I’m on my pc now and it does seem to take the pressure off the area which is giving me the most pain at the moment. Its memory foam with a hole in the middle! I tried a few and this seemed the best one I think.

    Ive also been to the docs and got a prescription for Gabapentin – my doctor’s given me 75mg capsules to take twice a day – it does seem quite a small dose looking at the doses some of you are taking, so will have to see if it helps, along with the paracetamol, naproxin and codeine…. I find Tramadol completely spaces me out – I took it in hospital but I felt drugged up so I don’t really want to take that, and it made me itch like mad, which is probably an allergic reaction to it, although it did help the pain. Hugs to you all. xx

    Posted by Emma Co | March 24, 2014, 5:35 pm
  460. Hi all I have missed all the recent posts for some reason! Oh a donut cushion that’s going on my.list of must haves as I will.definitely be trying to work soon after the opportunity but very gently as I work for myself so am sure that will be ok!

    Take care and really sorry to hear that work is being so horrible Emma! Surely they can see how you are? And welcome to sar too! I have asked my friend who is a.solicitor by the way and she has given me a name of one who do medical stuff in herts! But won’t do it til.after I have had the op though!

    Posted by Anne | March 25, 2014, 7:27 pm
  461. Anyone know if there is a gentler version of vesicare (solifenicen) for urge incontinence? It is working too well.

    Posted by Joy | March 25, 2014, 8:04 pm
  462. I think there are quite a few different meds for urge incontinence. Tolterodine XL 4mg is another med that Ms Elneil mentioned I could try, poss a change to that may help? xx

    Posted by Emma Co | March 25, 2014, 11:11 pm
  463. Hello Emma love (and all)
    So sorry for taking three days to get back to you, I did check that you didn’t need anything practical from me..before once again retreating to wallow in my own self pity! God this week has been hideous and what are we….Wednesday! Still no confirmation of an appointment on Monday despite Dr Elneil asking them to overbook the clinic so I have just sent off an email to her secretary.

    But back to you….how are you finding the Gabapentin? I wouldn’t worry too much about being on a lower dose as I think the idea is to build up gradually, as they can make you feel quite sleepy to begin with? Did work compromise with the holiday and sick leave combination?

    I have also been in touch with a solicitor who I follow on twitter, whom also follows this site and “tvt info” who has quite a it of knowledge on these cases, but more from the standpoint of did we need the slings in the first place….were we mis sold them etc. not from the erosion or movement themselves. I think a lot depends n if you had stress or urge incontinence prior to surgery as they shouldn’t have been used for urge….I think? I am going to peruse something, but mainly because despite asking for my TVT to be checked out thoroughly, I was still told it wasn’t it…and told I needed the total hysterectomy for the pain. If any ladies are interested in contact details I can give them. Not sure of the legality of posting a solicitors contact details via a forum though, so I will wait for advice on that.
    Wishing you and all ladies a pain and sadness free Wednesday x

    Posted by Claire | March 26, 2014, 8:16 am
  464. Hello ladies.
    I have just been to my GP who has said I must see a Gynacologist and took me really seriously. She asked who I’d like to see and I said def Miss Elneil again and she’s agreed that’s the best plan. I’ve booked to see her privately next week with the hope of going back on the NHS for any follow up appointments. My GP was really interested in my symptoms as I’m the second lady she’s had in this week with identical symptoms and concerns about the tape. What a relief! Thank you all for giving me the courage to do something about this. I’ll let you know what she says.
    Sar x

    Posted by Sar | March 26, 2014, 4:41 pm
  465. Well done Sar and well done GP! So glad you have been listened to. Amazing and a great step forward for you.
    I’m still chasing up my appointment with UCLH as they do seem to have once again, lost me in the system, but a lovely chap called Greg is trying to help today.

    Posted by claire | March 26, 2014, 5:04 pm
  466. Hi Emma how are you finding Gabapentin as Claire says don’t worry about the dose as I was started on 300mgs 3 times a day and had to apologize to all I met in case they thought I was drunk!!!But now I don’t really notice the effects of 3600mgs a day I hope you get your appointment with Suzie confirmedsoon
    Good for your GP sending you to Suzie I am sure you will go back on her NHS list as that is what I did with Natalia.Do you have far to travel?
    Hugs to you all

    Posted by carole jarman | March 26, 2014, 6:31 pm
  467. Hi all, well for no reason whatsoever my Wednesday isn’t a good one! Just need to go and get some ibuprofen as the codafen not kicking in!! 7 weeks and counting!! I have been prescribed neditol xl for urge !! Was on vesicare before that! Neditol seems to be quite good though! Oh the joys eh?

    Claire I would be interested in details ‘re the solicitor and hope they do get you in soon to see Suzie! I have a pre.op appointment on 14th April at 2.00 if anyone is at uch then and wants to meet for coffee it would be great to see you and just wanted to say to.Sar well done too!

    Love and hugs all

    Anne xxx

    Posted by Anne | March 26, 2014, 8:16 pm
  468. Hi All, Well I’m having my second try at going back to work tomorrow, this time with donut cushion!! I’m a bit embarrassed about the cushion, but if that’s the only way I can comfortably go back to work I don’t have a lot of choice! I’ve not been too bad at all pain wise the last few days, it does seem to be sitting for long periods at a pc on an upright office chair that gives me the worst problems…. I’ll have to see how I go on tomorrow, but I don’t have a lot of choice but to go back, as they’ve stopped paying me!

    I’m still waiting for my appt at UCLH for my tests for stress/urge incontinence to see if I need further surgery. I’m still leaking since the tape was removed which is a bit of a pain as I wasnt leaking before it went in!! Anyway, I’ll just have to wait and see what Ms Elneil thinks and whether further surgery may help.

    Hugs to everyone. xx

    Posted by Emma Co | March 26, 2014, 10:01 pm
  469. Hey Emma, I have just been looking at those donut cushions on Amazon, have you got a pillow case you could put over it perhaps – just to make it look pretty? Good luck with trying to go back to work tomorrow and very glad to hear that pain wise you are feeling a bit better. Such a shame that they have stopped paying you (that’s not fair!!) – today I have spent about 40 minutes setting up my statutory sick pay, am so glad that I have done it now as it was a long old phone call – at least I get SSP being self employed which at least is something!!!!

    I am going to go up to 4 amitriptyline tonight – just to get me through the evening!!!! goodness only knows what sets off the pain with me, its just there and even at Meditation the other night I managed to totally go off in the “zone” with a “puddle of a pain in my tummy” left – so weird!! – I thought that I would try meditation for a few weeks to see if that helped at all!

    Have a great pain free evening all – I am looking forward to bedtime – so sad to wish your life away isn’t it, but am sure you know how I feel.

    Love Anne xxxx

    Posted by Anne | March 27, 2014, 5:29 pm
  470. Hi readers
    Would any of you who have had mesh removal by Suzy Elneil be willing to support someone (by email) who is considering surgery with Ms Elneil but who is very nervous about it. She’s particularly interested in those who have had urethroplasty which Dr. Elneil says is necessary, and wants to speak with others who have had that surgery. Please could you email me at tvtinfo@yahoo.co.uk if you are willing to support this lady and have experienced surgery with Ms Elneil. Thank you.
    tvtinfo

    Posted by tvtinfo | March 27, 2014, 10:27 pm
  471. Hi TVTinfo cant help with your quest as I have never seen Suzie but am sure one of our other lovely girls can help.ANNE did you go to a meditation class or try it on your own as that is something I have thought about ?As to the donut mine is covered with a blue velvet type material ,that’s how it came so is not really that obvious as it looks like a cushion.Did you find the higher dose of Amitriptylne helped ? we are all different but I have found Gabapentin much better ,it zonks me out a bit so I am not always moaning about pain!!Its a wonder I have any friends left cos if its not my knee Im on about its my “””Other”bits!!!

    Posted by carole jarman | March 29, 2014, 5:40 pm
  472. Hi Carole I’ve been going to a meditation class which has been really great! I also am doing yoga until I go for my surgery and we did a relaxation at the end and I was able to totally go into these zone so to sow!! The 4 amitriptyline did work but boy did I wake up with a headache but that’s ok cos the solpadol first thing sorted that out ! So just back to three again now! Know what you mean about gabapentin though ! I could have been on them for the past two years!! Ye gods!!! What a junkie xx. Lovely lady who is nervous I am having the same treatment you are and have no idea how it’s going to turn out but I trust Suzie El neil implicitly !! I am sure we will be absolutely fine xx and Carole I will go for the covered donut did you get from Amazon?? Happy day tomorrow lovelies xxx

    Posted by Anne | March 29, 2014, 9:32 pm
  473. Hi Anne ,got my donut from one of these magazines that come inside the “glossys” but am sure they would be the same as Amazon.Remind me do you have a date for your surgery yet,will you have far to traveldown to London?Will have to look out for a relaxation class around here did ring about one before Christmas but all the places were fullhad to give up yoga because of my knee.Glad you found your new dose of meds helpful Hugs xx

    Posted by carole jarman | March 30, 2014, 1:49 pm
  474. Hi Joy how are things with you now,have you got your bladder sorted out yet are you on the lowest dose of versicare ,or is there only one dose ,long time since I have had any meds for my urge inco I just put up with it and use good old tena lady!!!Have you been signed off by Natalia yet ?xxx

    Posted by carole jarman | March 30, 2014, 1:54 pm
  475. Hi Carole my op is on 14th May!! Can’t wait to be honest! The new urge meds that I have seem quite good I have to say – I am on neditol now! We have a really good leisure centre here and I go to yoga for the over 50s so it’s very gentle ! I take my lunch then because I can :) !! It’s handy working from home I have to say! Although the no sick pay won’t be so clever!! Hope you’ve all had a lovely mothers day ladies xx

    Posted by Anne | March 30, 2014, 6:20 pm
  476. Hello lovelies, I was wondering if anyone could tell me how long the usual waiting time is at UCLH from seeing Suzy until Op day? I didn’t ask. I got to see her this morning…..oh my goodness me what a wonderful compassionate lady she is. My tvt is coming out!!!! Yippee! November 2008 this nightmare began for me…..I am beyond relieved but also very scared. I think I’d feel differently had I not had to have had the hysterectomy….but having had that done to ‘cure’ my pain and the of course finding out that it wasn’t my womb all along….has left me a little jaded and disbelieving in miracles :(. I am scared of further disappointment I think more than the procedure and the aftercare etc.

    I didn’t ask how long my stay in hospital would be either! Wombat! I literally sat numb!

    I am also off my head a little on pain medication this afternoon after the train journey from hell so please excuse my incoherent chattering a!

    Anne…..am i allowed to give the name of the solicitor over this forum do you think?

    Hope you are all doing ok today xxx

    Posted by Claire | March 31, 2014, 6:10 pm
  477. Hi Claire
    So glad you had excellent treatment from Ms Elneil and you will be getting surgery for TVT removal. Hope it will be successful and you won’t have to wait long .
    If people want to mention solicitors that’s fine with me as long as readers accept that this site does not personally endorse any particular legal firm. Also I would keep the details of your case private for obvious reasons.
    Tvtinfo

    Posted by tvtinfo | March 31, 2014, 6:37 pm
  478. Thank you! I feel much more positive today. Counting down and hoping it will be soonish. I read through other posts last night and it looks as though 8 weeks was a rough guesstimate at waiting times just before Christmas. If anyone could clarify, I would be grateful.

    The solicitor who I have spoken to is Ian Cohen, of Slater and Gordon. I found out about him via twitter and he had a vast amount of knowledge on TVT complications etc. I haven’t instructed him, so I can’t endorse him or his firm but certainly google the company, and email him if you feel you want to make your own decisions. His email is iancohen@slatergordon.co.uk His company have other cases ongoing to do with mesh I believe.

    Have a good Tuesday everyone xx

    Posted by claire | April 1, 2014, 6:50 am
  479. Hi ladies,
    I saw Miss El-neil tonight and I am having my tape out! She has said it will probably be May/June on the NHS which is so soon. She was really lovely as usual and so understanding. She only did my other operation two weeks ago, so I think she was quite surprised to see me but she made me feel like I’ve done the right thing. Thank you for convincing me to go and see her and for the encouragement that your posts gave me.
    I’ll keep you posted!
    Sar x

    Posted by Sar | April 2, 2014, 8:38 pm
  480. Hi Sar
    Glad you are getting sorted with your tape and hope it resolves your remaining issues. What a lot of problems you have had!
    Hi Claire
    Thanks for the information, it is a bit of a minefield for women thinking of making a claim and who have never done anything like that before. It seems that solicitors in the UK are mostly going down the clinical/medical negligence route with claims. I’m not sure if there are any pursuing product liability as well or instead, like in the current trial going on in Dallas in the United States right now, although that of course comes under US law we do have consumer protection laws in the UK but from what I can glean from reading about previous trials, it would appear very costly to prove which is perhaps why most legal firms seem unwilling to take on a product liability action against the manufacturers.

    Posted by tvtinfo | April 3, 2014, 8:10 am
  481. I am almost at 6 weeks, and going for my post-op soon. My pain has gone and I do not take any painkillers any more. I find my abdomen still gets sore on prolonged sitting. Sex does not hurt. For the first time in years I do not have to worry about internal positioning. The tape inhibited feeling, and having it gone has improved feeling. I am on the Harcombe Diet for candida, and feeling much better healthwise.

    Posted by Joy | April 3, 2014, 8:53 am
  482. Sounds really good Joy. Just please don’t do too much – your inside tissue takes up to 2 years to fully heal (as told to me by the physio) so give it lots of easy exercise, nothing too strenuous.

    Sar – you have had a great deal to cope with and I do hope that you get the outcome that so many have had with mesh removal.

    Claire – I agree with tvtinfo’s comments about how difficult it can be to take this on legally. However, it is remarkable that this stuff continues to be used unchallenged – when there is enough evidence even on this site to show the terrible damage done to lives.

    Posted by LizR | April 3, 2014, 9:15 am
  483. I am trying to find out how successful tvt-o removal is . My wife’s gynecologist is recommending partial removal . It seems from reading these posts that a full removal of the TVT-O would be better . Does miss Sohier El Neil carry out ful removal? How successful is the procedure?
    Vince

    Posted by Vincent | April 3, 2014, 10:11 pm
  484. Yes Sohier Elneil does perform full TVTO removal. I couldn’t tell you how successful the procedure is ie what the success rates are, and of course it would depend on your goals for removing the tape and what complications your wife is currently experiencing. It would be best to get a second opinion from Ms Elneil if you are unsure about partial removal. You could try emailing her with an initial enquiry as I believe she does respond to these types of emails from mesh sufferers.

    Posted by tvtinfo | April 3, 2014, 10:19 pm
  485. To let you all know, I’m not over doing. I have not even touched my vacuum cleaner. I get help for everything. Laundry basket, making beds, any type of carrying anything heavier than a small pot. The postman handed me a box the other day. I took it without thinking. It was not very heavy, but as soon as I took a step, the leaking started. That experience has made me be determined to be very very careful. I am walking my dog with two leads. If she were to pull, it would be easy to control her. She walks without pulling generally. My walking is up to an hour or two hours most days.
    I would say to anyone – get all the mesh removed, rather than partial. My mesh seemed to be perfectly placed, was not eroding. If it were not for the severe UTIs Dr. Price would not have removed it. But now it is out, I have no vaginal pain, and I have vaginal feelings that the mesh has been interupting. No Dr. can determine that side of things in an examination. Of course, it does depend on what you want in life. I would prefer a good sex life and some leaking issues. Some others might prefer to have no leaking due to their lifestyle and would take the compromise sexually. It is something we each need to think carefully about.
    If only I never had the mesh in the first place!

    Posted by Joy | April 4, 2014, 8:11 am
  486. Hi Joy, Glad you’re doing well – I’m feeling a lot better too! I’m still sitting on my donut cushion at work and at my pc and it is helping a lot….. I’ve to go back to UCLH for imaging/uro dynamics studies to check on stress/urge incontinence on 11th June, and then I have a follow up appt with Ms Elneil on 23 June. Onwards and upwards eh?! I’m still glad I had the mesh removed, even if I’m leaking a bit now, and things take a while to properly heal…. If Ms Elneil feels I need further surgery for the stress incontinence I think I’ll leave it a while for things to properly settle first. xx

    Posted by Emma Co | April 4, 2014, 4:23 pm
  487. Emma, my thoughts exactly. Find out a little, wait a bit. No rushing.

    Posted by Joy | April 4, 2014, 6:51 pm
  488. Hi again!
    I just wondered if anybody could explain the urethroplasty bit of the mesh removal? I stupidly didn’t ask why I would need one. Miss Elneil mentioned it in the appointment and then in the letter to my GP it says I will have one. I’ve had that mid-section of the tape removed already when it eroded into my vagina and I don’t have any problems in that area as far as I know…
    I keep thinking of things I should have asked and didn’t! Next time I’ll take a list.
    Thank you!
    Sar x

    Posted by Sar | April 5, 2014, 6:33 pm
  489. Hi Sar, I had my tvt-o removed by Ms Elneil on 12 Feb this year, and she also did a urethroplasty at the same time. I was also quite unsure about this and why it needed to be done. I sent her an email and she answered that she always does a urethroplasty on every patient when taking out a tvt because of any possible damage that could have been done to the urethras while the tvt was in place. The tvt wraps round the urethra so she does the urethroplasty as a matter of course to ensure any possible damage is corrected. I think shes very thorough and I did trust her implicitly. After the urethroplasty you have to have a catheter in place for 1-2 wks, you come home with it in and go back to have it removed. Mine was in for about 12 days, and again I was not looking forward to this, but it isn’t as bad as you think it will be. They give you a leg bag which straps to your leg, and I wore a long skirt while I had it in. I contacted my doctors and they sent a district nurse to check on me at home to make sure everything was okay. I did get a urine infection while I had the catheter in, and I think this is quite common, but my doctor just gave me antibiotics which cleared it up. You’ll be fine. Email me if you’d like to ask me anything else. emmacostello1@o2.co.uk. xx

    Posted by Emma Co | April 6, 2014, 12:29 pm
  490. Am feeling very sorry for my self today,hence this post!!!Just cant seem to get rid of this “sore”feeling when I sit for long ,even my high dose of Gabapentin isn’t helping much and I have found that the last 3 times I have taken Tramadol as a back up I have had very bad headaches the next day.It may be coincidental as I haven’t had the problem before What do you girls use for pain relief? I get a bit down as I will be on my feet for a while and my knee will start hurting but I know that a nice sit down will only bring problems in another area !!!Still don’t have a date for my knee replacement and my previously deferred gynae op is fast approaching as my given date is 19th June.Really don’t want to put it off again but neither do I want to wait until the winter to get my knee sorted and I know how long his list is if you postpone —-woe is me!!!!!!—-
    Hugs to you all xx

    Posted by carole jarman | April 9, 2014, 11:34 am
  491. hi Carole,

    It sounds miserable – and I remember it well. You also have your knee to deal with so a lot of pain.

    Have you tried having hot baths with essential oils? This might relax the area and help soothe some of the pain. No easy solution I’m afraid – but I know that hot water made a huge difference to me.

    Hope things improve and really hope that you get your appointment soon….

    Liz x

    Posted by LizR | April 9, 2014, 11:37 am
  492. Hi there Carole have you ever tried biofreeze by any chance it’s quite a lovely pain relief gel! I use it on my tummy sometimes even !!! It’s worth a try!!!

    Hugs to all – is anyone going to UCH ON Monday I am there for my pre opportunity at 2pm !!

    Xx

    Posted by Anne | April 9, 2014, 6:59 pm
  493. Hi Anne thanks for that ,doubt if it could be used internally which is where I feel the pain.Good luck for Monday do you have far to travel UCH,I have never been there .
    Lizr will give the hot bath, a try sounds lovely Thanks for your kind wishes I often feel like my life is on hold,guess a few of you girls cad relate to that to/?!!!!
    Hugs to you all

    Posted by carole jarman | April 10, 2014, 5:22 pm
  494. Lol yes don’t use it internally but it does help rubbed into the tummy! Mine is constant tummy ache:( !!! I’ve been given another appointment for tomorrow so am now there for 9.50 and 2-00pm so ……… not sure what that’s about? 4 weeks and counting and love to you all this lovely sunny Sunday xx

    Posted by Anne | April 13, 2014, 12:06 pm
  495. Good luck tomorrow Anne. Long time there. Hope it all goes well. x

    Posted by LizR | April 13, 2014, 7:21 pm
  496. Good Luck Anne, I hope you find some answers today.
    Love from Claire GRUMPY PANTS. (so fed up with life) Cooper xx

    Posted by Claire Cooper | April 14, 2014, 3:50 pm
  497. Hi Claire, I saw on another forum that you were asking about legal action against manufacturers. There are solicitors in England taking on cases, I don’t know if I’m allowed to say who, but a quick internet search for London solicitors dealing with mesh claims should give you the info.

    Posted by Jillian | April 14, 2014, 7:24 pm
  498. Thank you for the info Jillian, I’ll look it up and have a sift through. I’m trying to get a little control back in my life after so long feeling the victim. I’d be happy to share anything I find with any fellow suffers if allowed to.
    X

    Posted by Claire Cooper | April 14, 2014, 7:53 pm
  499. Hi girls! Had my trip.to uch today! They had made a boob but they put it all right as the pre assessment lovely nurse was able to see me! She was great then had to go upstairs for blood tests and an ecg! It was slightly worrying when I saw the queue for the blood tests but my were they efficient and I just took my ticket and went to have my ecg then came back to bloods again and probably o n my waited about 5 mins and hey preso.all.done! So all in all was back home by two!! If anyone has any good tips on how you get picked up AFTER the op we would be grateful please? We have cussed out the car park at euston station but the pre.op nurse said it was a bit of a nightmare there for picking up!!

    And sorry to.mentioned this but a.month and counting down now!!

    Hugs. Anne xxxx

    Posted by Anne | April 14, 2014, 8:30 pm
  500. Hi Anne,

    You must be weary but happy – sounds as though things went OK although a little tricky at times. Not long now before the monster mesh is removed. Liz x

    Posted by LizR | April 14, 2014, 8:52 pm
  501. Really pleased for you Anne, well done you for the happy spirits too xx

    Posted by Claire Cooper | April 14, 2014, 8:58 pm
  502. Hi Anne, I had my mesh removed at UCLH on 12th Feb by Ms Elneil. She’s a lovely woman, you’ll be in good hands. I was picked up by my ex hubby on the sunday after the op – there are no parking restrictions on sundays in London apparently, so he just pulled up in a space he found outside the hospital, was really easy and I didnt have to walk far with my lovely catheter in!! xx

    Posted by Emma Co | April 14, 2014, 9:10 pm
  503. Hi Anne so glad all went ok at your pre op and not long to wait now!!!Every one using the site at the moment seems to be a patient of Sohier s is no one bar me seeing Natalia now?!!!
    Claire do you have a date for your surgery as yet?Have you had any luck re solicitors? That wouldn’t be an easy route to go down but I guess a lot of ladies have done so ,good luck and let us know how you get on
    Hope you are feeling a little less of a GRUMPY PANNTS today!!!!
    Hugs to you all ,what a personal problem we all share !!!XX

    Posted by carole jarman | April 15, 2014, 3:00 pm
  504. hi Carole,
    As a former patient of Natalia, let me reassure you that you are in very safe hands although Natalia cannot remove TVT Os so will not be able to help all the women on here. The two surgeons work differently but I have only heard praise for them both, and have come into contact with a huge number of mesh sufferers seeking help. Hope you are OK.

    Posted by LizR | April 15, 2014, 3:04 pm
  505. Hi All. I had my mesh removed last Tuesday at the John Radcliffe hospital by the brilliant Natalia Price. I want to say what a relief it is to no longer have the awful thing inside me, and what a positive experience it has all been so far! I spent one night in the hospital after the op, no catheter and only glue covering the external stitches. I am being very well looked after by my family at home and have been very tired but only a small twinge of discomfort in the area where I had nerve pain from the tape. The most discomfort was from the gas left in the tissues after the laparoscopy in my shoulder and under my ribs but this only lasted for a day. It’s a very worrying time coming up to the date of surgery, but the surgeons we are discussing here are amazing. Good luck to all.
    Katherine.

    Posted by Katherine | April 15, 2014, 6:25 pm
  506. Very good to hear your good outcome, Katherine. I remember well that pain from the gas – took a while for my tummy to go down!
    Take life slowly – don’t overdo the recovery as you can’t see how much has been done inside (I rushed at being active a bit fast!). Take care, Liz

    Posted by LizR | April 15, 2014, 6:31 pm
  507. Hello Carole and lovely ladies…

    A little less grumpy pants today yes :) no news on an op date yet, but on Friday my back wall of my vagina prolapsed (god….so graphic…hope you aren’t eating!) and I had to get more antibiotics for another infection….so I must call the booked admissions office and find out if they have any idea yet. Feeling more up for tackling that now after the antibiotics have kicked in. I also had a very good phone call with a solicitor today, Emma Nash, thanks to your tip Jillian (Google London solicitors mesh implants and probably Emma Nash) and we talked at length about the types of litigation going ahead and about possible group action against the manufacturers if there was no real clinical negligence. I’m not suggesting you all run follow suit, but we are not alone ladies, and there are various time limits according to who you sue, so if you are thinking of persuing a legal case, it’s best to find out sooner rather than leave it I would think.

    I do read and follow all of your posts even though I’m too much of a misery to reply sometimes, I only had 2hours sleep last night….and that’s about the norm, but I’m still sorry if I’m not as supportive as I could be. You wait until after this poison is out!
    Lots of love x

    Posted by Claire Cooper | April 15, 2014, 7:31 pm
  508. Hi there Claire and Emma – Emma firstly thank you for your tip – in which case I can hope that I get “let out” on the Sunday :)

    Claire I have been thinking of you overnight and I used to have really bad nights sleeps – waking up 2am and 3am (4 hours after the solpadol wore off) and not able to sleep again because of the pain and my GP has suggested that I took an extra amitriptyline – so basically I take them at 5.30 (3 or sometimes 4) which at least keeps me asleep, all night long, and because I take them early I am not sooooo zonked out by the time I need to get up! Although I have to say that am really looking forward to knocking them on the head!!!! So is it worth going to your GP to see if you could have some of those – apparently they are “antidepressants” too – :) – you’ve just got to laugh or you would bliming well cry wouldn’t you??? Claire you are VERY supportive – just by putting on here how you are feeling there may be another lovely lady who is going through what we are and it helps her, even if she doesn’t comment on here people can see what this monster mesh does – even if they are considering HAVING it done they might truly think about it twice and realise how horrid it is…………..

    love and hugs all too – and try and have a nice easter too xxxxx

    Posted by Anne | April 16, 2014, 10:54 am
  509. Hey there lovelies just heard you and yours on radio 4 catch up re there being a register for Tvt implants! I think I might have to write an email to sir Bruce keogh! Am positive I will find his email easily eh?? ;) am away for the weekend but will get on to it next week lol !! Hapy Easter xxx

    Posted by Anne | April 17, 2014, 1:31 pm
  510. Hello Anne

    Thank you for your really kind and supportive words, meant so much,they truly did. I’m going to get an appointment on Tuesday and ask to try the amytriptaline then, I know my mother in law has it for her back condition. I can also update him on the good news that I’m soon in for the chop. Had a good day yesterday so did a bit of weeding in the garden, some ironing etc and the usual mum/wife stuff. Today, started enthusiastically and decided to walk the dog, cook the family a fry up and go food shopping. MISTAKE!

    Now in bed with my best friend/enemy Monsuier Tramadol and Madame Tens.

    Happy Easter to you and to everyone. God Bless x

    Posted by Claire Cooper | April 18, 2014, 2:33 pm
  511. Hi Claire so sorry to hear you have overdone the “housewifely” things do hope you will feel better soon and be able to enjoy the rest of the weekend.I see you to take Tramadol do you ever find you get headaches with it ?I have had a fairly bad and long lasting one the next day on the last 3 occasions I have used it a nuisance really as I do find them quite good.Hope your GP gives you your script, I did try Amytriptaline for a while but got better pain relief with Gabapentin Listening to some of you ladies talking about your pain I do feel a bit of a fraud for moaning tho as I am only really bothered when I am sitting
    Hugs to you all ,have a lovely Easter

    Posted by carole jarman | April 18, 2014, 4:23 pm
  512. Hi Carole, don’t for goodness sake feel a fraud; none of us should be in this state and sitting down is a big part of life! Can I ask how long your mesh has been in and if it’s the TVTO or TVT, you have probably said before so I could beat you too it by looking through your posts :)
    I didn’t find Gabepentin nearly enough as the months and years dragged on, as the pain intensified. I also had a thermal endometrial ablation which I’m sure accelerated any melting. I’m pretty much housebound from about lunchtime onwards nowadays, but not for too much longer…yippee!
    I have recently changed the way I have tramadol, I used to be prescribed slow release tablets….in either 100 or 200mg form and I would often get a colossal headache after using them. But now I have the 50g and I think because they peak and trough in strength my body copes better metabolising them. Thank you for your encouragement in visiting the quack…fingers crossed eh.

    In other news, I sent of the paperwork yesterday to view my medical records, in order to get the information from the packaging for my TVTO. I am definitely considering legal action, although terrified what this will actually entail. My family, hubby and I have suffered a great deal of pain and strain, and I want an apology if nothing else. It also gives me a bit of control back and something to think about other than what I am missing out on.

    Wishing everyone a comfortable night, take care Carole, take care all x

    Posted by Claire Cooper | April 18, 2014, 6:17 pm
  513. Thanks for the good advice Liz! I know I am likely to do too much too soon after the removal, so it’s good to be reminded to take it easy! I am going to Center Parcs in August, which will be 4 months post op, do you think I will be okay to cycle and swim by then?
    I have stumbled across the fact that vitamin D3 seems to be helpful in maintaining good pelvic floor health, just google to find some interesting info which could potentially help lots of us!
    Good health and a Happy Easter, Katherine.

    Posted by Katherine | April 20, 2014, 12:53 pm
  514. Hi Katherine,
    Everyone is different but I would hope that you could cope with the sort of swimming and cycling that Center Parcs offers (I have very very happy memories of holidays with the children there). Just listen to your body and if there are pains, then cut down on what you do. Avoid very soft sand that pulls your pelvis, (my downfall after removal) – but cycling and swimming are mainly continuous motion rather than pulling. The other thing to avoid is heavy lifting…

    Interesting about D3. Vitamin D is currently well rated to help a number of things. Sunshine is a better source than supplements so get out with bare arms when you can!
    Happy Easter

    Posted by LizR | April 20, 2014, 3:13 pm
  515. Hi Claire you may well have found out about my surgical history by now if you searched back far enough,but just in case,I had a tvt put in in 2002 and had it”cut” 4 years later as it was occluding my bladder and I had trouble passing urine —the nice kind chappy also perforated my bladder at the same time so I had a catheter in situ for 5 weeks!!!since 2000 I have had a hysterectomy and also 2 other repairs using—as I now know—mesh ,so Natalia is only hoping that the cause of my pain on sitting is the mesh threads she could feel on examination,as I don’t have any deep pain.I do so want to get the surgery done but I also need to get this revision knee replacement that I have been waiting 22 weeks for .I was told that would be done in March,so when I got my gynae date thro for 11th March I deferred it and was given 19th June but how things are going I will have to defer again cos surely by then I will have had my knee op!!!!!!
    Katherine ,how are you now how did you find the JR hospital is it a nice place—as hospitals go!!!!–Do you live localish as Natalia told me I would have to be in for a couple of days post op because we lived quite a distance away .Take things nice and easy for awhile,its easy to think as you haven’t been cut open that you don’t need to
    Hugs to you all xxxxx

    Posted by carole jarman | April 20, 2014, 4:55 pm
  516. Thanks Liz, I will remember to avoid the wet sand for some time as I can imagine that being hard on those deep muscles. Yes definitely need some sun on those bare arms, I did manage a few hours lying in the sun last week!
    Carole I found the JR hospital great to be honest. Really clean and comfortable, and the nursing staff were all very lovely. Natalia, as you know is amazing, and made sure she explained everything thoroughly and was there to see me first thing the morning after the op to let me know how it had gone. I live an hours drive from the hospital, but I was keen to get home ASAP, so I did jump in and ask Natalia if I could go home as soon as I saw her! She agreed that I would probably get more rest at home (it’s a little noisy at night, so take headphones!) and I did not need antibiotics or a catheter so that probably helped my early release. I would say that you may be happy to stay longer, and you will certainly be well looked after, so maybe don’t rush to be discharged, especially if you are still having problems with your knee. Enjoy having people waiting on you! Wishing you lots of luck and a speedy recovery afterwards! Katherine

    Posted by Katherine | April 20, 2014, 5:49 pm
  517. Hi Katherine ,thanks for the info did you find it hard to find a parking space at the JR have you been back for your post op check yet?
    Joy how are you now you seem to have been”quiet”of late so hope you are ok also Emma ,are you well
    Hugs to you all xxx

    Posted by carole jarman | April 22, 2014, 5:28 pm
  518. I am fine, thanks. I am still waiting for my post op, which was set at 11 weeks instead of six – due to busyness. That is fine by me. I still leak quite a lot. But no infections at all. I am not as tired each day, but am still not using a vaccum cleaner or doing any lifting – although I have been doing gardening…weeding with a hoe and bending. I am being careful, I promise. I think that I will end up needing the colposuspension that I went in for back when they gave me the tvt instead. I will have to talk it through with Natalia, as it is more important that I stay free of infection…even if that means being leaky. I have urge incontinence that is fixed with a daily dose. But the stress incontinence is in full swing…much worse than it was before. In fact, it is not just a matter of a sneeze or cough, it happens when I walk out with the dog or do any movement that is not just a pottering about. Sometimes it is just a little bit….sometimes it simply does not stop. I honestly am still happier to endure the indignity of wearing a pad to having painful UTI’s all the time. Health is best.
    I found the JR fine, but the nurses vary. Some are clearly prejudiced against those who have a tvt removal. It does not matter what they think. Best to keep quiet about what we have endured and be kind and gracious to them. I was unfortunate in that I was in with a very vocal woman who had a tvt removal. She had suffered greatly and was needing to share. I have a friend who is on the physio staff, and she told me about the staff meeting that discussed this woman. I advise that we keep the battle out of the ward. Go to hospital to recover and take the fight on, if we wish, when we are well.
    I was treated quite badly by one nurse on the first day. I chose not to report her. I felt that it would only make her more intrenched in her opinions. But there were some absolutely wonderful nurses, and my care under those women was excellent.

    Posted by Joy | April 23, 2014, 8:10 am
  519. Joy that is such a shame that you went through that awful experience with the nurse being unkind to you. It’s hard to know whether to say anything or not, as you say but maybe you could mention it to Natalia at your post op appointment as it may prevent someone else suffering the same treatment. Glad you were able to rise above it and remain positive! It sounds as though you are doing really well, will be interesting to hear what options you will have for the leaking. I seem to be okay so far, but I really haven’t done too much moving around, so we will see!
    Carole I found the parking okay, as I was dropped off very early in the morning for the op, my partner came in and stayed about 10 mins but then left as no point him hanging around and he didn’t even have to pay for parking! And when he picked me up at lunchtime the next day he was parked practically outside the door! It’s luck on the day I think.
    I just got my post op appt through for 28th July, so hopefully by then I will be up and running! Or walking at a moderate pace maybe!
    Good health to all,
    Katherine

    Posted by Katherine | April 23, 2014, 1:41 pm
  520. Hello Carole…..blimey I didn’t realise you had such a complicated history and kerfuffle! Especially with the bladder perforation (!) and knee too. Did you have the hysterectomy after the TVT? I’m just curious as I did, and my hysterectomy was to cure my pain!! So wondered if that’s why you had yours. I had an ablation to sort my periods prior to the hysterectomy. Wondered if any more of us ladies had been through the gyne route with bleeding and if their was a link? I’m a life long ‘bleeder’ so no link there for me. Thank you for the information though, I guess you are still waiting a date for the knee op then? Poor thing.

    Joy,I am so saddened but not surprised to hear of your treatment at the JR. Nursing staff in my experience are living gems, or intolerant divas! Really upsetting that you felt negativity towards yourself and the fellow more vocal sufferer. I’ll definitely take this on board with me when I go in.

    I’m hoping Emma is just enjoying life mesh free at the moment!

    As for me, well I emailed the appointments team for inpatients at UCLH this morning as bordering on desperate now. Just having the focus on a date, whenever it is, would be something to look forward to. I hope I hear soon.

    Love to all xx

    Posted by claire | April 23, 2014, 2:07 pm
  521. Hi Carole, Kind of you to ask after me. I’m doing okay thanks, back at work, and still using my donut cushion on my work pc chair – I think I’d be struggling without it, but with it I’m managing fine and not taking any pain relief. I’m due back in London on 11th June for uro dynamic studies/imaging and then I have a follow up appt with Ms Elneil on 23rd June. I still have urge incontinence, which is now worse than my stress incontinence, very strange as I didn’t have this before the tape was removed. I think I will probably need further surgery in time, but I think it will have to be next year as I’ve had so much time off work this year and have run out of sick pay entitlement! Also I want to heal properly before anything further is done to my body. Anyway, I’m still glad to have the dreaded tape out of me. Hope things will soon improve for you. Love to you all. xx

    Posted by Emma Co | April 23, 2014, 4:50 pm
  522. Lovely to hear your news Emma and that you remain, on the whole positive. Fingers crossed for you with the urge issue.
    X

    Posted by Claire Cooper | April 23, 2014, 7:44 pm
  523. Thank you Katherine for your helpful info for the JR ladies too. Thank god we all have each other x

    Posted by Claire Cooper | April 23, 2014, 7:45 pm
  524. Hi Claire, Yeh I’m doing okay thanks. Just wish I’d never had the thing put in in the first place… I now leak when I need a loo which I never did before, which is very annoying! I’ve got some tablets for the urge incontinence, but wonder if the dose needs to be increased possibly. Ms Elneil suggested 10mg and my doctor has given me 5mg, so I may go back and ask about that. I do also have some stress incontinence but that doesn’t seem as bad somehow, strange! Anyway I’ll give it time and see how things go. There’s always the further colposuspension op to consider in the future if needed. xx

    Posted by Emma Co | April 24, 2014, 10:33 am
  525. Hi Joy,glad you are doing so well altho the stress inco must be awful for you.I have suffered with urge inco for years but my stress was cured many years ago when I had a colposuspension so that may be the route you will go down eventually .Same thing goes for you to Emma.Was sorry to hear of the treatment you had from a nurse at theJR think you did right in not saying any thing as that may well have made things worse.Being a retired nurse I am saddened when I hear such tales but know only too well how bigoted some nurse can be and very set in their way.
    Katherine,thanks for the info re parking my admission time is 7 30 also but I was told if I made enquires a month before that I may be able to go in the night before as we have 1hr 45 mins drive and with traffic etc I may be late ,don’t know if I would want to do that but will see.Did you hubby visit you at all as I have told mine not to.Do they have by the bed tv and phone?
    Claire have ypu had a reply from UCLH yet it is so frustrating just waiting for every thing isn’t it?I have been on the list to have my knee op for 23 weeks now!!!I had my hysterectomy about 6 years before the tvt was done,had the hyst for a prolapsed uterus only to find the prolapse was still there as it was the bladder!!!The joys of my life!!!
    Hugs to you all

    Posted by carole jarman | April 24, 2014, 3:35 pm
  526. Hi Carole, I was also admitted onto the ward at UCLH at 7.30am and I stayed the night before at accommodation the hospital arranged for me called The Cotton Rooms, which were very nice, like a hotel, and just down the road from the hospital. I stayed on my own, but they will allow a partner to stay with you there, and the room was very plush with a huge bed, smart bathroom and tea/coffee making facilities. I had my evening meal in the hospital restaurant the night before my op, which wasn’t great, but there are loads of pubs/restaurants about, I just didn’t want to go on my own, so the hospital seemed the better option for me. I live in Preston which is a 2 1/4 hr train ride or a 4 hr car journey, so staying over the night before seemed a good idea and I’m glad I did it. I also arranged for the hospital to discharge me on the sunday after my op, as parking is free in London then, so much easier. xx

    Posted by Emma Co | April 24, 2014, 4:30 pm
  527. Hi Carole, Just noticed you’re going to to JR hospital not UCLH, so my info wont be much help for you lol! Nevermind, it may help someone else. xx

    Posted by Emma Co | April 24, 2014, 4:31 pm
  528. Hello.lovelies I’ve been away over Easter with dodgy email.so have just caught up.with all.the news! Now 3 weeks.and counting! I am not being admitted at UCH until.11.00 am ladies so.that it gives me a chance to get there so you can always ask for.a.later.admission time if it helps.you! How long are visitors.allowed to.stay with you?.it is quite expensive for my husband to travel down although might be actually be quite useful to get him.a travel.card for the over 60.s! So hoping that some friends fancy a trip to.London.so.they can come.and visit too! And the tip.about leaving on Sunday so.it’s easier parking is great too! Joy I am sure you were blogging from hospital.so.did you have internet ok?.

    How is everyone doing? Well I hope, well as well.as us lot manage.anyhow!!

    Love and hugs.Anne xxxx

    Posted by Anne | April 24, 2014, 4:53 pm
  529. The JR has a new and unpleasant system. They have taken beds out of a room and put in high back chairs. You go in at 7;30 am and wait with the six or so others for your slot. I waited until 2pm, with no water, and fainted, and was taken on a stretcher to surgery. I needed to be in a bed waiting that long on an empty stomach. Be ready for a long uncomfortable wait. If you need to be put in a bed before surgery, take that up with the ward before you even get to the hospital.

    Posted by Joy | April 24, 2014, 5:29 pm
  530. Omg joy that was horrible! Poor you xx

    Posted by Anne | April 24, 2014, 5:59 pm
  531. That was not good Joy! When I arrived at the JR we were shown to a room with other women, just as you said. Everyone had their partner/husband waiting with them, but I sent my other half home and when I saw the nurse for my assessment I asked when I would get a bed and she said there was one free immediately and let me go and spend the morning resting on the bed. Whether it was because I asked or because I was on my own I do not know but I was very grateful as I didn’t go down to surgery until 13.40 and was very dehydrated resulting in a migraine later on when I came round. So maybe ask for a bed ASAP otherwise it will be a long wait.
    Carole, my partner picked me up the next day so there was not time for him to visit, but I must say I would have told him not to bother, as I just wanted to be left alone, (maybe just how I was feeling with my migraine) but I certainly would not have been up for chatting as I was sleeping when I could. I think it’s a very personal choice though, and I would have preferred my partner to be at home with our children, but others may have different situations. There was free tv and phone by every bed, I think it was only free on a temporary basis, so although it may be chargeable it will be available. Not sure of cost.
    Happy, healthy weekend to all,
    Katherine

    Posted by Katherine | April 25, 2014, 10:08 am
  532. Hi Joy, The system at the UCLH is pretty similar I’m afraid! I was in at 7.30am with quite a few other ladies, waiting for different ops…. we all had to sit in a room on the same high backed chairs, nothing to eat or drink, then one by one we had to change in a side room and walk to theatre…. I was the last one in theatre, at 4pm, after sitting there since 7.30am! I felt dreadful and dizzy by then, but there’s nothing you can do…. just wait and try not to stress about it. Not pleasant, but just something that had to be endured…. all character building stuff I’d say lol! Having said that I don’t need my character building any more!! xx

    Posted by Emma Co | April 25, 2014, 10:09 am
  533. Oh Emma that’s awful! Thank goodness it is all behind you now, and you can concentrate on healing and being well again. Katherine x

    Posted by Katherine | April 25, 2014, 1:18 pm
  534. Not great but when you can’t change something you just have to tolerate it don’t you, and know it will end eventually! There are people enduring a lot worse! xx

    Posted by Emma Co | April 25, 2014, 1:35 pm
  535. Thanks all of you for the comments,cant say that I will be rushing to be admitted to the JR now!!!At least at my local place we are fairly sociable stil and you get admitted straight to a bed on a ward,it is still the long and very draining wait tho,must admit I have “cheated”on more than one occasion and had a handful of water from the bathroom tap—-have had 20 or so operations with no undo problems to!!!!—At least WHEN I get my knee done as it is a fairly long job I may get taken down first ,before the consultant gets too tired!!!
    Have a comfy weekend all of you Hugs xx-

    Posted by carole jarman | April 25, 2014, 2:45 pm
  536. Hope you’ve all had a lovely pain free weekend? Well as much as possible anyhow! Can I ask some UCH advice please? Will I be able to get internet there please? And how do I get away with staying until Sunday morning so that it will be easier to get picked up? Just 2 and a bit weeks to go!

    Thank you Anne xxx

    Posted by Anne | April 27, 2014, 8:36 pm
  537. Hi Anne, I had my tvt-o removed in Feb at UCLH. I think there is internet connection as one or two ladies were using tablets, though I didn’t bother to take my laptop myself. I went in on wed 12th Feb for my op and they said I could leave on the sat…. I asked if I could stay till sunday as I was getting picked up by my ex-hubby, who was coming all the way from Preston, and that it would be easier for him to pick me up on the sunday – they were a bit iffy when I first asked, but they went along with it, and I got picked up at 11am on the sunday. Good luck! xx

    Posted by Emma Co | April 28, 2014, 5:52 pm
  538. Thank you Emma! That’s a big help! I am hoping to be able to do a bit of work ! Just be on hand just in case! As I am self employed it will be great just to have email!!

    Anne xxx

    Posted by Camdenroad55 | April 28, 2014, 8:32 pm
  539. Hi Claire have you had any news yet it is like a cloud hanging over your head just waiting isn’t it?I often wonder how long a surgeons relative would have to wait!!
    Sar what is happening with you as you haven’t been on the site foe a while?
    Thanks to all you lovely girls who are here to offer support and help with all we go thro—-oh to be a man!!—
    Hugs xxx

    Posted by carole jarman | April 29, 2014, 12:37 pm
  540. Ha ha ive just seen a post from me yesterday saying it’s from Camden road55 weird!! Carole you haven’t said how you are at the moment? Hope you are well?. I was going.to.go and start a.collection of tena s today as don’t trust my husband when I need them not to come.back with the new pants!! But it rained so will.go.tomorrow now! You have definitely got to laugh haven’t you?
    Love Anne xx

    Posted by Anne | April 29, 2014, 1:01 pm
  541. Hi Carole
    I’m doing ok thanks at the moment. I went back to work last week after three months off after my last two ops. I’m absolutely exhausted as I’m a teacher and it’s very full on, but as I’m finally infection free for the first time in almost three years I’m actually feeling quite well! I’m waiting for a date for my mesh removal at UCLH which Miss Elneil thought would be May/June time but I’m guessing it will be later rather than earlier now. My mesh still gives me pain on and off every day but compared to how awful I’ve felt with my suprapubic catheter and the infections until my last op I feel amazing and can cope with the pain. I still want it sorted as there are times when I really reach for the painkillers but I just feel grateful it’s all underway now.
    I hope everyone else is doing ok?
    Sar x

    Posted by Sar | April 29, 2014, 9:33 pm
  542. Hi Anne ,thanks for asking,am much the same ta!!Will soon be back to the decision I had to make inFeb do I defere my gynae op which is booked for July 3rd in the hope I will get my much needed knee replacement done before then as I really cant put that back but as I have now been on the waiting list for 23 weeks I beginning to wonder if its ever going to get done!!
    How are you then,yes I think you should get your own inco pants ,hate to think what my hubby would bring back!!!I use Sainsburys own or Aldi when they have them,lots cheaper than Tena and after all they only go in the bin

    Posted by carole jarman | April 30, 2014, 5:50 pm
  543. Hi Carole I went and got some tena s today they had a special offer in boots but thanks for the Sainsbury tip! Will have a look next time I am in there ? 2 weeks and counting down in days now! Yippee how sad that I am so excited! I am most excited that I will be able to knock the amitriptyline on the head soon as am so tired every morning and hopefully will be feeling much better in the evenings too instead of a worn out wreak!!

    Sar shame you aren’t in with me in 2 weeks aka 13 days!

    Good luck girls xx

    Posted by Anne | April 30, 2014, 6:22 pm
  544. Hello ladies,
    I have a date! 13th August! Perfect timing as I can finish off the term with my class and be there until the end. Is anyone else scheduled for August?
    I hope you’re all doing ok. I spoke too soon the other day when I said I’d been fine with pain lately, as it’s been quite bad again this week but hey ho -onwards and upwards!
    Sar x

    Posted by Sar | May 2, 2014, 2:57 pm
  545. Hi Sar,glad you have at last got a date its a bit of a long wait but if it fits in with your life that’s good.Nice to have a date to plan towards isn’t it?So sorry to hear you are in pain ,this sort of ailment tends to do that don’t you think,as I can have a good day or two followed by a “throwing myself under a bus “day !!!
    I have been chasing around my knee operation this week as they still couldn’t give me a date and its nearly 6 months now my GP has sent my consultant an email which may ,or may not bring some response and have also spoken to my MP re the length of waiting time at our hospital!!!All I want is a date so that I know when I must defer my gynae op to as its not fair to the JR hospital to keep messing them around.Seems our NHS is in a bit of a mess at the
    moment Have sat for too long now so must shift .Hugs to you all ,hope you are all okish XX Sar meant to ask before,what age group do you teach?

    Posted by carole jarman | May 3, 2014, 12:13 pm
  546. Just wrote you an enormous reply Carole, all about the last week, your knee op and how I think you deserve to be selfish in this instance and keep the gyne op date until you know for sure you can’t attend. Lastly about my disappointment at still not hearing from the hospital despite badgering them. I saw Suzy on the 31st of March and if Sar has a date Mid Aug then goodness knows when mine will be, but between wringing my essay and pressing send, we lost our internet connection and my huge narrative went off into nowhere but disappeared from here :(
    Sending you lots of love in this maddening time! Think we are both losing our little marbles waiting for dates!
    Claire xx

    Posted by Claire Cooper | May 3, 2014, 10:43 pm
  547. Hi Claire
    thanks for the thought of a huge essay our internet plays up a lot to ,maddening isn’t it ?!!!!!Oh I do hope you don’t have an awful long wait,when did you last badger them?If you want my email address to have a “meaningless “chat I will let TVTINFO know that is fine,only a thought you may not want to.I have long since lost my marbles believe you me,what with pain and my full whack of Gabapentin I am away with the fairies a lot of the time!!!!Heres hoping next week brings you a date
    Hope the rest of the girls are ok and at least enjoying some sunshine /XXX

    Posted by carole jarman | May 4, 2014, 4:13 pm
  548. Hi All,
    For the last few months I have followed the comments on this message board and have found it a great help.(no a life saver).. I should introduce myself–I had a SPARC bladder sling inserted in december 2007 and a posterior and anterior repair at the same time–2 surgeons both used mesh……since then I have had continuous supra-pubic pain, 100′s of UTI’s, seen numerous consultants, prescribed mountains of pain medications(most of which zonk me so much that I cannot function and so cannot take them). attended counselling sessions, etc .had to give up work in 2011 as driving, sitting for long periods all made the pain unbearable…now am unable to walk much without right groin pain, unable to have sex as it hurts too much….I could go on and on but ye all know how it feels…I have numerous diagnosis(depending on whom I have seen) but all the gynae dr’s and urologists have denied it is anything to so with the mesh!!!! have always said it could not be removed and that I needed to improve my core stability(hence physiotherapy with a specialist in female disorders) until I went to a new gynae guy last February following a post menapausal bleed…he told me it was the mesh and to google it…..that is how I found this website
    I want to say a big thank you to you all….I cried so much with relief when I first read all the comments left here–as I read it was like I was reading about myself and it was the first time in a few years that I felt like I was finally finding out what was wrong with me…..but I felt I couldn’t share my story yet…not until today …it is so difficult to put it on paper–this monster that has taken over my liffe for the last 6 years and has changed everything for me and my family….
    Thank you for the information re Ms Elneil–she is the only surgeon in the London area who will deal with both mesh products…..I am very lucky in that I have private health insurance and and was able to see her on March 14th with my first surgery scheduled for tomorrow may 6th!! I live in the west of Ireland so the journey over has been a challenge but we are here now and will need to stay until may 18th as my gp almost had a stroke when I mentioned I could travel home with the catheter in…..so it will be removed here before going home…..
    I will be in for 3 nights so hopefully out on friday as she will attempt to remove the lower half of the bladder sling and may also be able to remove the anterior prolapse repair mesh but that’s not for sure as she will not know until she is actually doing the surgery…….she told me I will need at least 3 surgeries to remove it all and repair the incontinence……
    There is little or no understanding of mesh complications in Ireland and I have been told no-one who is qualified to remove it and so I am in London……thank you all once again for putting your stories in writing and I just wanted to let ye know that it has helped me a lot and thought perhaps I could help others by putting my story in writing too…sorry for the long entry…years of pain takes a while to expalin!!!!.

    Posted by catherine | May 5, 2014, 9:44 am
  549. Catherine,

    Thank you so much for sharing your story with us – I am sure it will help others who are in a similar position, looking for answers and a way forward. You have gone through a lot with all your mesh problems, and I am glad you found this site and, through it, Ms Elneil who will hopefully set you on the road to recovery. You must be very determined, and desperate, to travel all the way from Western Ireland. I wish you all the luck with your surgery tomorrow and hope all goes well with it and any subsequent surgeries you might need. Keep us all posted on your progress. X

    Posted by tvtinfo | May 5, 2014, 2:49 pm
  550. Catherine,
    So glad you found Ms Elneil after all this time! There is light at the end of the tunnel now:). Wishing you well for tomorrow, this is first step to healing! Keep us all posted,
    Best of luck, Katherine. X

    Posted by Katherine | May 5, 2014, 3:02 pm
  551. hi Catherine,
    It’s great that you’ve found help from these life-saving posts. I do hope that your appointment tomorrow begins the journey to recovery as it sounds as though it’s been a living nightmare. We empathise.
    Liz x

    Posted by LizR | May 5, 2014, 5:11 pm
  552. Hi Catherine, Awful to hear what you’ve been through, but great that you have been able to put yourself in the very capable hands of Ms Elneil. I had my tvt-o removed by Ms Elneil on Feb 12 this year at UCLH… I went home with a catheter in (strapped to my leg) and had to travel back to London by train two wks later. I live in Preston, which is quite a journey from London. Im quite surprised to hear Ms Elneil has agreed to take your catheter out before you travel home, but you don’t have a tvt-o so its most prob a different op she will be doing. You’ll be in excellent hands with Ms Elneil, and she is a lovely compassionate lady. Good luck, I’m sure all will go well tomorrow. xx

    Posted by Emma Co | May 5, 2014, 5:57 pm
  553. Hi all,
    Thank you for your kind thoughts and wishes I am glad to be here waiting to go to theatre…yes Emma I leave hospital with the catheter in & get it taken out in her rooms on May 15th before travelling home on May 18th I am very lucky that my husband can take the time off from work to stay with me. So far the staff here have been very kind.. I am in the Harley street clinic everything is very clean so hoping for a good outcome

    Posted by Catherine | May 6, 2014, 12:10 pm
  554. Hello Carole, yes please to the email address. But be warned, I’m very much a grump :) will try my best though to be the old Coops , can’t quite recall her though!
    And Welcome to Catherine, I’m do sorry you have had to join us and as a fellow long term sufferer, I do appreciate how it wears you down. You are possibly having surgery right now, so I’m keeping you in my thoughts.
    Love to all x

    Posted by Claire Cooper | May 6, 2014, 1:51 pm
  555. So wonderful to hear that Catherine is at last able to get some help.I wish you well with all you surgery and hope you will continue to let us know how you are getting on .Hope you are well enough to enjoy a little of London before you go home .Hugs to you
    TVTINFO would be great if you were able to forward my email address to Claire please
    Emma how are you now after your surgery are you getting back to normal yet?
    Joy have you had your follow up appointment yet,how is the incontinence?

    Posted by carole jarman | May 6, 2014, 2:36 pm
  556. Hi Carole, I’m feeling a lot better thanks, though leaking a little and having to wear a panty liner, which is a pain as I didn’t before the tvt-o went in! I seem to have more urge incontinence now rather than stress, which is also odd, but there you go! At least the mesh is out, and things are settling down pain wise. I’m still sitting on a donut cushion at work as I was getting a lot of pain sitting at my pc, and the cushion helps massively. I may need further surgery in the future for the leaking, but for now I’m just going to let things heal. I’m back in London for imaging on June 11th and again to see Ms Elneil on 23rd June. Good to hear most of us on here are recovering well or booked in for surgery. xx

    Posted by Emma Co | May 6, 2014, 5:26 pm
  557. Hi Carole
    I’ve sent your email address to Claire as requested.
    tvtinfo

    Posted by tvtinfo | May 6, 2014, 6:40 pm
  558. Hello lovelies! 6 days and counting! This time next week no more nasty mesh! Am beginning to feel a little bit nervous now but you are all so great that I know that I will be FINE!!! So thank you, you are all keeping me sane!! Catherine welcome to you and hope that you aren’t feeling too bad? Suzy is my lovely consultant too, I will be at UCH !! My pain is horrid at the moment so am alternating solpadol and ibuprofen every 2 hours!! Am sure it’s just nerves though? Take care all and have a good evening

    Love Anne xxxxx

    Posted by Anne | May 7, 2014, 7:03 pm
  559. Hi Anne, look forward to the new you! Don’t worry – it will indeed be fine. Mesh free, you will be released from the internal drip of poison from the leaching plastic as well as the pain. Take care, Liz x

    Posted by LizR | May 7, 2014, 7:27 pm
  560. Hello girls.
    I’m so utterly miserable. I had my op date through today, 27th Aug. I was referred to Suzi on the 18th of Jan and they lost the referral, so I ended up seeing her by begging and begging ( you all encouraged me so sure you can remember) on the 31st March. It will be 20 weeks from that consultation until the op.
    I’m on 100mg tramadol and 60mg co codomol, four hourly as well as Duloxitine and an ibruprofen 600mg twice a day. Last week on my youngest sons 19th birthday I needed to use a wheelchair to from one end of a shopping centre as it was too far to walk. I want so bad to go private but we can’t afford it unless we put it on a credit card and husband is very very reluctant. I hate myself, I worry I’ll have no friends soon, they must think I’m a lunatic saying it will be in May or June but it’s actually nearly September. I’m just done the hell in.
    Please tell me if you think I’m being a pain the bum and a massive 5ft baby. I don’t remember myself before this so don’t know who I am anymore.
    Xxx

    Posted by Claire Cooper | May 7, 2014, 7:28 pm
  561. Hello Claire,

    I do feel so for you – and remember well the despair at having to wait weeks before removal of the mesh that was crippling me. I know I’m the other side of the fence from you, 3 years after removal, so it’s easy for me. But I vividly remember how it felt – and know the pain you are suffering. You are not a baby – you are in agony and being cut up inside by that mesh. Is there any chance that Suzy will have a cancellation before then that you could drop everything for to go to if possible? Liz

    Posted by LizR | May 7, 2014, 7:33 pm
  562. Hi Claire, I’m sure if you email Suzy direct (do you have her email address?) and tell her what pain you are in, she will try and get you in sooner. She is a very compassionate woman, and I know she would do her very best to help you if you contact her. xx

    Posted by Emma Co | May 7, 2014, 8:27 pm
  563. Hello again,
    Liz….I know….I know we have all been there with this and I’m not nor will I be alone. I should think about that more often instead of wallowing. I am so scared I won’t return to being ‘Me’ after this and I am frustrated too. I had looked through all the other posts and deuces that their was about an 8 week waiting from consultation, but of course most were cases prior to the second airing of Suzi on Radio 4 and I guess her list just got bigger since. I’m sure everyone else is in as much need. I think I’ve got a bit depressed.
    I emailed twice last week the secretary, and asked her to forward the email to the admissions manager stating that I was desperate and would take a cancellation lasts minute, but I didn’t hear back. I called today but got a machine, and then a chap who really didn’t seem sure what he was up to called back to say they had made the list that they were working on today, the 27th August. Thank you for your kind words though and just being there.
    Hi Emma…..I do have her direct email yes, but I’m scared to mail again as the last time I did. To tell her I had yet another infection and a prolapse, she didn’t reply. I haven’t emailed her since the middle of March before this though, but wonder if I’ve made a nuisance of myself. I’m not heavy on the old self esteem at the best of times. I went back to my gp today, who confirmed I have shingles, but also because I have a leaking and crusty nipple too!! I think I’m just done in with infection. She didn’t say she would ring the hospital on my behalf or write again, buts this was prior to me getting that date. I just don’t know what to do anymore. X
    And Carole…the email address I have been given doesn’t appear to be yours! TVTINFO please can you send Carole my address instead, that may work.
    Thank you girls, for getting me over a rough evening…again. God what would I do without this forum, I don’t even want to think about that.
    Xx

    Posted by Claire Cooper | May 7, 2014, 8:43 pm
  564. I’m not surprised it’s been a really bad day. You are very insightful – i’m sure that Suzy is now busier than ever with the Radio 4 airings…

    Since you are suffering in so many ways, I think that if you feel able to, go back to your GP and explain how desperate you are. Remember to explain that the pain is like … barbed wire inside or similar – make it so clear. The shingles is another sign of your poor body struggling. See if she can put any pressure on UCLH. I hated doing that sort of thing but it did make things happen… Liz x

    Posted by LizR | May 7, 2014, 8:49 pm
  565. I’m also worried about being well enough to travel to France on the 23/24th September with that date but I know I will be needed there. It will be the first anniversary of when my eldest son lost his new fiancé and girlfriend of 3 years, in St Emillion. It’s been such a tough year for him, the worst imaginable and I need to travel with him out there. He is only 22. It’s such an incredible mess. God I’m so lost.

    Posted by Claire Cooper | May 7, 2014, 9:10 pm
  566. It sounds tragic and so sad for you all. Again, something to add to your GP discussion. I leant on my GP a lot when I was working out what to do about the mesh inside me (before I’d found my saviour, Natalia Price).
    That’s a heavy load on you. I hope that things feel a bit brighter in the morning.

    Posted by LizR | May 7, 2014, 9:14 pm
  567. I just had my post op with Dr Price yesterday. She is thrilled that I have not had even a hint of an infection since the mesh removal. She said she had not before seen a case like mine so extremely resistant to treatment for so long. Her conclusion was that the mesh was causing me an auto-immune response, and that they simply do not know enough about mesh. A case like mine where there was no mesh erosion, the mesh was well placed, it worked for incontinence perfectly, but caused extreme treatment resistant infections, is a compelling example of why mesh is the wrong material for the purpose.
    My incontinence is annoying and she could treat it with a sling made from my own tissue (no brainer), but I asked to wait for a year or two to see if physio can help, to get through menopause, and to not rush into more surgery. I do think that leaking might be helping keep my bladder flowing and stopping infections, and it is a price I am willing to pay after having been sick with a UTI for 9 months straight, and hospitalised three times.
    I go through about seven light pads a day. Night time I do not leak, but I do use the loo about twice in the night. My priorities have changed through this trial. Health is appreciated more than convenience.

    Posted by joy | May 8, 2014, 8:22 am
  568. Joy – that sounds essentially good news although the leaking is indeed annoying. At least you are being offered options for future consideration. I’m also glad to know that Natalia admits that they simply don’t know enough about mesh. Your case is yet another where auto immune problems have arisen – many of us have had ongoing problems of all kinds that we attribute to the mesh – so it’s good that she has noted that. We need more surgeons with compassion and skill like Natalia and Suzy – it’s just too few, with too many inserting the mesh…

    Posted by LizR | May 8, 2014, 9:56 am
  569. Joy- I am so pleased to hear you are relatively recovered from your removal and infection free after a long slog battling against them. It is just so scary that your mesh was intact, but your body was reacting to the material. It has to be that, as you are no longer systematic now it’s removed. Amazing how our opinions on surgical intervention differ to that prior to this nightmare and how reluctant most of us are to be tampered with again. Good luck to you.

    Liz and ladies who witnessed my meltdown last night, firstly I’m so sorry you got the raw edge of my emotions. I was so distressed and it get insurmountable, and it still does but I’m more resigned to it today. I made enquiries with Dr Elneils private secretary as to when I could be operated on that way, and how much. £10000 approx and a 3rd of June operation date, which she said was a long time privately to wait. She then went on to add that she had received two further enquiries this morning from ladies in Scotland whose NHS will not pay for them to be treated on the English one, so they have no option but to go private. That must be a living hell for the Scottish sufferers. Utter hell. It’s just so unfair.

    I’ve just written to my gp and begged for help, and again to Suzy, but failing that, I will bide my time and try and count my blessings that at least I can access the care in the end.

    Thank you Liz, Emma and all who took the time to read my posts and love to all xx

    Posted by Claire Cooper | May 8, 2014, 11:13 am
  570. Hi Claire I am so so sorry to hear just how poorly and peed off you are and I can understand that completely ,not so much over my mesh problem as I could,and should have had that done in March as you know but thinking my knee surgery was going to be about then I deferred,but over that same operation as I am in constant pain with my knee and spaced out on pills .I do so hope your GP can be of more help,my own one has emailed my consultant but as that was a week ago now and I have heard nowt I doubt that that has done much!!!
    I don’t know Suzy at all but reading others posts it doesn’t seem like her to ignore your email,having said that ,I do remember sending one to Natalia not long ago to which I had no reply.
    On the meds subject I guess you must tolerate Tramadol ok to take it regularly but have you tried one that acts differently like Gabapentin or Amytryptline?
    Once before my email got passed on with one wrong letter so I will make sure TVTINFO have it right
    Try to keep smiling xxx

    Posted by carole jarman | May 8, 2014, 3:28 pm
  571. Hi TVTINFO I see one my email address there is an f where an r should be !!!!Many thanks can you send it on to Claire please ?

    Posted by carole jarman | May 8, 2014, 3:31 pm
  572. Carole/Claire, I’ve sent another email – one of the addresses provided must have been wrong.
    tvtinfo

    Posted by tvtinfo | May 8, 2014, 5:04 pm
  573. Oh Claire poor you!! What hell you are going through!! I must have missed all this going on last night and am sorry I wasn’t here to.support you as well! Definitely email Suzy I got an email back from her within 10 minutes when I emailed her on boxing day! It really can’t hurt to ask! I don’t know how many ladies are done per day but apparently my op is at 2pm on Wednesday and am sure she told me it takes 4 hours so perhaps it’s only 2 of us poor buggers a day eh? Lol don’t forget we need reconstruction in there to??

    Love to you all xxxx

    Posted by Anne | May 8, 2014, 7:09 pm
  574. Hi Claire have you any news from your GP or Suzy yet ,how are things with you today.it is miserable isn’t it?I know my pain only really rears its head when I sit or don’t lie down properly so does not have to be constant but I get fed up with my hubby laughing at me when he sees me on the lap top like I am now,kneeling infront of it!!!At least my knee will let me do so as a lot of knee replacement folk cant
    Havent as yet got your email address so you may have to ask TVTINFO as I know she gets very busy
    Joy ,am so glad things are looking up for you ,don’t worry about the incontinence cos no one knows ,only you .Pads can get a bit of an expense I know but as I said in an earlier post I go for shops own brand which I have found as good as Tena
    Anne ,hope you are keeping those nerves under control,just think of hoe good you will feel minus mesh.Do you know how long you will be in for?Remind me,do you have a long journey?
    Have a comfy weekend girls hugs to you all

    Posted by carole jarman | May 9, 2014, 2:55 pm
  575. Hi TVTINFO ,sorry for messing you about .I must have entered a letter wrong when I first joined the site I have corrected it now !!I Incidently I had an email from you about this,should it have gone to Claire?—-I am not very good when it comes to computers!!Ta

    Posted by carole jarman | May 9, 2014, 2:59 pm
  576. Not a problem , I did email Claire and CC’d you in but I’ll check again just in case.

    Posted by tvtinfo | May 9, 2014, 4:16 pm
  577. Catherine have been thinking about you as your last post was pre surgery,do hope all went well and that you are feeling lots better now.Are you coping with the catheter ok,I had one in for 3 weeks after my bladder was perforated during surgery,mine had to be mens size as they wanted to make sure my bladder stayed patent!!You do get use to them tho don’t you ,and its nice not having to get out of bed for a wee at night.
    Were you able to have your anterior prolapse mesh removed as I have that also but Natalia,whom I am seeing doesn’t do that she is just able to do the tvts.I will be interested to here how you got on
    Hugs to you all have a comfy weekend xxx

    Posted by carole jarman | May 10, 2014, 5:48 pm
  578. Hello Anne, Hello everyone

    I’m so sorry I haven’t gotten back to you sooner, but I gave great news! I spent all day Friday in A and E, after a night of terrible pain, bloody urine, flapping about gp and a row with husband about how stressed HE is because I’m leaning on him too much (!). Decided I was either off a cliff, or I was going to make someone somewhere see how poorly I was clinically not just emotionally. I am lucky that one of my best friends is a staff nurse in that department there and was off duty, so she took me in and basically had me seen straight away by a consultant chap who did my stats…..normal for me is bp 110/60 and pulse at rest 55ish. Well my BP was 165/95 and my pulse 145, just laying there and that’s where it continued to stay until someone started asking me questions that I felt were questioning the mesh being the problem, when it would climb to 170+!!! So they started on controlling my pain and gave me Oxynorm….nothing reduced…..Voltorol suppository and IV paracetamol, no change, went onto Morphine and I think he was doing ml doses and they all stood in my room as one by one dose went in, and my pukse didn’t drop and my speech didn’t slur and I was like YOU SEE, YOU SEE NOW HOW HORRIFIC THIS IS….I CAN TAKE THIS MUCH NARCOTIC AND BE BLOODY AWAKE AND IN PAIN. Finally, everything started working and I had a lovely pain free few hours. They wanted to admit me for the weekend and The urology reg said that they could cut the TVTO n Monday, but after being butchered there 5 times already my friend put her foot down and demanded they call Suzy’s secretary to bring forward my op date. And an hour later, they did….19th May!!!!!!!! Eight days time!
    I AM IN SO MUCH SHOCK. I’m so under prepared! Talk about one extreme to the other. 27th aug to 19th May.
    My hubby is away for work until Monday night of the op! He leaves tomorrow, and goes to the Far East. My youngest son comes back from uni for a visit from Fri to Tuesday. And I haven’t let you ladies know, that I also took in a short term foster (niece, family has broken down, so no choice but help her) two weeks ago and have been trying not to show her my misery, as she starts her GCSES Tomorrow, so it’s a bit frantic and chaotic but still great :) it does mean that I can’t go up until the Monday morning as I don’t think it’s fair to leave her with the two boys (22 and 19)
    But, if I leave here at 4.45 am I can catch the first train to London Victoria for 6.32 and get a cab to the hospital in time for 7. Eldest son will travel up and do the ‘husband’ bit for dad later in the day unless it’s not worth it? I wonder what you all think about that (probably stopped reading ages ago as I’m rambling on like an over excited loon).

    But…this is the real me….this is what I normally sound like. Hopeful.

    Thank you for sharing and supporting and propping me up my meshy friends.

    Xxx

    Ps…TVTINFO, Carole and I have now made contact via the email address you supplied, thank you.

    Posted by Claire | May 11, 2014, 7:51 pm
  579. Oh Claire, I am sooooo happy for you! You must be over the moon! What a brilliant outcome after a not so brilliant time on Friday, but at least you were able to show them what an absolutely hellish time you are having and they listened!!
    I bet you are counting sleeps now!!!
    Good luck, you really deserve it!
    Love Katherine. X

    Posted by Katherine | May 11, 2014, 9:00 pm
  580. WOW Claire – I am just sorry that its not THIS Wednesday and then we could be in together!!! LOL you will probably be surprised that I am a prize cow to live with at the moment – 2 more sleeps and yes I am now bricking it!!! BUT I have had my hair cur and do look “wonderful” – I am going out with my colleagues tonight – yes I WILL be drinking wine – we are supposed to be talking about my “work cover” whilst I am out of action!!!!! ha ha!!!! Anyway the husband is staying out of my way, bless him!!! – he asked a very silly question this morning about some post and I bit his head off!!!!! I will keep an eye on here next week Claire and see how you are doing, but I am soooo excited for you – at last getting rid of this ghastly stuff!!!! Claire don’t forget to get some Poweraid – you have to drink it at 6am – it apparently helps with coming out of the anaesthetic – I have to have mine at 9am – I have a 11am admission as my op is at 2pm!!!

    So think of me my lovelies – ohhh and a catheter for THREE weeks? – as you say at least no getting up in the night to wee, but….. I haven’t been getting up anyway!!! woops!!! think that that’s the Neditol that does that, although not sure, or is it the amitriptyline that keeps me asleep all night!! I’ve got to get up at 5am for my breakfast on Wednesday- goodness knows how I will do that with all the amitriptyline LOL!!!! I have brought a couple of long dresses to keep my lovely “leg bag” covered!!!!! Claire where are you coming in to London from – I have to come in from Hertfordshire so will get a 9 o’clockish train with my husband

    I think I have just rambled there girls, but hey ho I am sure you will forgive me and Claire – WELL DONE you!! so glad you didn’t go the cliff route :)

    xxxxxx

    Posted by Anne | May 12, 2014, 3:28 pm
  581. Hello Katherine, thank you for your lovely message and support. Yes, I AM counting sleeps! I really and truly cannot wait to be rid of this nightmare and get back to some semblance of me again. I feel like the luckiest girl in the world all of a sudden, like I have been given a second chance, like My prayers were answered. I was so desperate. I just wish I could speed everyone else’s waits up now. That would be amazing.
    Take care! X

    Anne, LOLOLOL! That cracked me up! And yes, would have been great to have been in together. I wonder if you will have any other meshie as a roommate? What a personality changing, all consuming, botheration of a flipping nightmare eh, but only one more whole day for you and you are on an Amyltriptaline fuelled trip into London for fixing. You did remind me to get Powerade actually, I’ve been so busy fussing about organising things for over the coming weeks and getting bills paid etc I’ve forgotten about getting my stuff ready. I only have one long skirt. I’m normally a knee length girl with tights or leggings. Oh well, have to stay in my nightie a lot I guess.

    I’m coming up from East Sussex for a 7am admission so I have to get the 5.22am from my nearest station, about 20 mins away. But a small price to pay.

    Please let us all know how you are getting on when you are up to it.
    Wishing you the worlds luck!
    Claire x

    Posted by Claire | May 12, 2014, 7:20 pm
  582. WOW – what a great outcome from a truly hell and back situation for you Claire. Thank goodness Suzy gathered the situation and your friend did the right thing.

    Not long now… make sure you have loose clothes, food that improves soft stools (e.g. dried figs), something soothing and cleaning to wipe yourself clean with before you can shower (e.g. almond oil and j cloths that can be chucked – but don’t use baby wipes as they are full of foul stuff).

    Thinking of you
    liz

    Posted by LizR | May 12, 2014, 8:07 pm
  583. Good luck with the ops, Anne and Claire. Not long now.
    Hope your op was successful, Catherine.
    Hope you get sorted with knee or mesh removal whatever cones first, Carole
    Tvtinfo

    Posted by tvtinfo | May 12, 2014, 9:56 pm
  584. Oh Claire what an awful thing to have to happen last week but a fantastic outcome in the end. I am so pleased you don’t have to wait until August now. I do feel very lucky that my pain has not been that bad. I get pain every day but I can cope with it and can carry on working etc. At times it wakes me up in the night and is worse but as a rule it is manageable. It makes me even more keen to get it out ASAP when I hear what a horrible time some of you are having. When my tape eroded into my vagina it was pretty awful so I can only imagine it is doing horrendous things to our insides.
    I am on my way into London for a check up for my last op in March and I’ve just popped out at Euston Square station to check out where UCH is ready for August. Nice and near the station!
    Well good luck Anne and Claire. I hope it goes really well for you both and I hope everyone else is doing ok.
    Take care,
    Sar x

    Posted by Sar | May 13, 2014, 9:06 am
  585. Hi All, soory for not getting back to ye but was having some computer trouble(showed no more posts after my last one. thought ye had all abandoned me!!!! haha) then tried to post a comment this morning and couldn’t –seem to have it sorted now though…..
    Claire, I am so pleased that you have finally gotten an appointment so soon….waiting is a nightmare, the stress of it alone is enough to make one ill, never mind trying to cope with pain, family, life work etc…your life is pretty full-on at the minute so will be thinking of you as you try to prepare for your surgery….this is the beginning of a new you!!! thank you for your message and thinking of me..it’s so good to know there are others out there who really understand
    how I feel.
    Anne, 24 hrs to go….so glad, try not to worry too much(even though it’s natural) I freaked out my husband I was so calm before my surgery…I just felt so relieved that I had finally found someone who seemed to know what they were talking about…….I had made up my mind that I had to have it removed and just wanted it to be the next day….I hope that tomorrow goes well for you and will be thinking of you..
    So I am 7 days post-op, I had removal of the tvt only, Ms Elneil said my tape was incorrectly placed and had caused severe damage to my urethra, it was a very difficult job to remove the tape which was embedded into the urethra but she managed it and then did a urethroplasty, because of the damage to my urethra I will have the catheter in for 14 days and will have to stay close by for a few days after removal too in case of any problems!!! but she managed to get out the anchors to so I am so pleased, there is a possibility that a small bit of tape mesh is still behind my pubic bone but she will not be able to know that until I have my next surgery…….I feel so lucky to have had it removed before it caused any more damage..I was in the hosp.for 3 nights
    so we have had to rearrange our stay here in the UK, I am to get the catheter out on tues 20th(next week) and will stay around until 23rd, should be home for the 25th…..luckily we were able to get a lovely cottage in Essex (near fitchenfield-such a cute viillage from the brief look I got coming through last saturday) so I am trying to relax and heal as much as possible…..I am quite weak though improving slowly, just cleaning the catheter area and getting dressed is a big job and leaves me exhausted and sweating… having a shower is like running a marathon but I know that is only temporary. I am having a lot of pain at times but am taking my painkillers regularly as instruced by Ms Elneil.
    I will need further surgery to remove the prolapse mesh but that will be after I have the 3 month check up and urodymanic studies test done.
    Carole J –thank you for your post, as you have read above I did not have any of the proplapse mesh removed last week–I can look forward to that in the future! Ms Elneil said that I will need the dual appraoch, both abdominally and vaginally to remove it and I think she felt she might be able to repair any incontinance I may have at the same time…. all for the future. I hope that you get one of your surgeries soon, time waiting can feel like such a wasted life I know…
    soory for the large entry!!!!! thanks for reading
    .

    Posted by catherine | May 13, 2014, 12:29 pm
  586. Thank you all – I am being a cow still but hey ho – this time tomorrow I will be asleep – its 2pm now!!! ha ha ha ha!!! and the monster mesh mess will be GOING!!!!!!! but the husband will just have to put up with me for one more day!!!! he he!! At least am working today so that is keeping me quiet!! Opps just realised I am supposed to be meeting some friends for late lunch, so will post this and then come back to it later on, if I can.

    love me xxx

    Posted by Anne | May 13, 2014, 1:01 pm
  587. Catherine, Finchingfield is lovely – such a shame you won’t get a proper chance to have a look round it – and not that far from where I am – sorry I won’t be able to pop in and see you!! But am interested to know that its quite a big job getting up and dressed LOL!!!! At least I know where I stand!!!

    Liz, thank you for the almond oil/j cloth tip – I had brought some baby wipes but that is a great tip as I actually do have some almond oil so will use that – and the tip about the figs too – I was wondering how one manages that side of things!!!!!

    Claire, just in case I don’t manage to get on here again, although am taking my tablet with me (am sure that Joy “blogged from her hospital bed”?? – good luck for Monday, I will be thinking of you

    Think I might take my amitriptyline NOW – it might calm me down and then I can get through til tomorrow – breakfast at 6am and poweraid at 9, train at 9.37

    Good night my lovely meshie friends

    Anne xxxxx

    Posted by Anne | May 13, 2014, 4:02 pm
  588. Hope it all goes really well Anne – I’ll be thinking of you. Glad that the tips are helpful! Liz

    Posted by LizR | May 13, 2014, 5:19 pm
  589. Good luck for tomorrow Anne! You are in good hands and will soon be mesh free! Yay!
    Katherine x

    Posted by Katherine | May 13, 2014, 7:29 pm
  590. Thank you ladies for your kind and caring replies. You are all treasures and so understanding. I am beyond appreciative, you have made such a positive difference. I love it when one of us gets good news, we all get so excited for each other. Thank you also for the hints and tips around admission and aftercare. I’m going to write them all out in the morning and spend my days gathering supplies. I am too excited for words now. Terrified but elated. Hubby flew away today on business but I’ve had good news, I am the 11am admission on Monday and not the 9am, so there is a good chance he will get to heathrow in time to get across London and get to me before I go down. I don’t even know why I want him there as he’s hopeless in a crisis, hates hospitals, needles, blood and bits! I think it’s more so he can see what I’m going through LOLOLOL!
    Anne is hopefully tucked up asleep now, but incase she gets the chance to log on when you wake….GOOD LUCK, will be thinking of you! Xxxx

    Night to all, god bless and thank you again, love Claire xx

    Sent from my iPad

    >

    Posted by Claire Cooper | May 13, 2014, 9:45 pm
  591. Anne thinking of you today hope your not too nervous! Heres rejoicing in a good outcome….positive thinking is difficult for those of us who have suffered so long ………Catherine

    Posted by Catherine | May 14, 2014, 8:38 am
  592. Lol I am in the waiting area! Just got WiFi so I could log in!! Hmmmm Claire not sure you should take your husband in with you to see the doctor? He was VERY frank but glad that I took Stuart in with me as he didn’t really have a clue, but he has now!!! They are doing some little ops and then me! He told Stuart that I probably won’t be back on a ward until about 11 tonight so he is not going to wait after I have gone in!! Have a headache from dehydration and a little bit of stress I expect but all good and it’s quite pleasant here so no worries Claire xxxx

    Posted by Anne | May 14, 2014, 12:26 pm
  593. Hi Anne,hope by the time you are reading this that you are feeling a lot better and relieved to have your tape out.Take things nice and easy for a few weeks and let your body mend.
    Catherine stop jumping up and down with excitement!!!Your hubby sounds like mine as he to hates hospitals needles drips etc etc and I have put him thro so much over the years!!!Have at last got the date for my knee surgery its 30th June which is my birthday!!!!Hey ho.Have just deferred my gynae op and said early Sept would be fine so you will all be well over surgery by then
    Hugs to you all xx

    Posted by carole jarman | May 14, 2014, 3:41 pm
  594. Oh dearie me I hate to let you know this! I am back home after having a total.meltdown at uch as at 5.30 I got cancelled!! Waiting for Suzy to call.me now!! I did post something whilst having meltdown but luckily I forgot to press post!!! :( Anne xxxxx

    Posted by Anne | May 14, 2014, 7:21 pm
  595. Sorry to hear about the cancellation. I am sure Suzy will soon have you back in, these things can’t be helped sometimes but it’s disappointing I know.

    Posted by tvtinfo | May 14, 2014, 9:02 pm
  596. Need your advice lovelies……. should I call her she hasn’t rung! Obviously tomorrow now ? Xx

    Posted by Anne | May 14, 2014, 9:02 pm
  597. What did they tell you before you left?

    Posted by tvtinfo | May 14, 2014, 9:05 pm
  598. Oh no! I’m gutted for you Anne. I really hope you get a new date sorted this morning. I really feel for you as I would have been distraught had any of my ops been cancelled this year. What a disappointment. Chin up today and try and do something nice.
    Sending hugs.
    Sar xx

    Posted by Sar | May 15, 2014, 7:26 am
  599. Morning Anne, how awful for you could I suggest that you request to be first on the list when you get rescheduled? That way you might have the best chance of getting done?? Hope you get some answers today. Sending you best wishes Catherine

    Posted by Catherine | May 15, 2014, 7:52 am
  600. Hi TVT info, they told us that we could either hang on last night and they would come down and talk to us, but it might be 1 1/2 hours or 7 pm or that they would phone us up last night!!! Nothing heard!!!!! X. We left as I had definitely had enough! Headache upset and fed up!! You know how it is??

    It is now 11.30 and still no joy!!

    My husband has left all sorts of messages all over the place!!!

    Anne :(

    Posted by Anne | May 15, 2014, 10:31 am
  601. Oh yes Catherine they said that I would be FIRST next time!!! But WHEN????????? Anne

    Posted by Anne | May 15, 2014, 10:32 am
  602. Hi Anne,do hope you have heard somrthing by now it is so so horrid when you get cancelled it happened to me once and I was almost on my way to theatre.I was given a date for 2 weeks later before I left.The problem happens when there is either an emergency that your consultant has to deal with or they run out of theatre time .It may well depend on how often she has a theatre list as of course it wont be daily altho she may well be able to do her cancelled list “out of hours”,what ever I do hope you get done very soon chin up love it cant be long
    Hugs to you xxx
    Joy hope you are getting on ok and not clearing the shelves of Tena lady?!!!!

    Posted by carole jarman | May 15, 2014, 11:10 am
  603. Hi there, good morning at least those fabulous amitriptyline do a good job with calming me down! Lol could you lot imagine me without them!!!! Lol in fact I think we should ALL be on them! The charge nurse promised me yesterday that I would be first on the list at least! But obviously NOT going back today! I run my own virtual assistant company so.it’s going to get difficult to keep on the support that I had in place for longer as we have holidays coming up and there is only 5 of us!!! Just about to ring the admissions manager now…. Will report back later on …

    Anne xxxx

    Posted by Anne | May 15, 2014, 11:58 am
  604. Hellooooo Claire we will probably get to see each other! I have the guaranteed slot on Wednesday and have to be there at.7!!! What a relief!! They have been really lovely when they phoned at 12-30!! It has been a long morning again!

    So…… 5 and a half.days and counting AGAIN!!

    Anne xxw

    Posted by Anne | May 15, 2014, 12:03 pm
  605. Anne so glad for you…..pity I’m in the city on Tuesday not Wednesday! We could all have a catch-up…….remember I said I found just getting up a whole lot of work? Well it only got worse & yesterday I had to see a GP here….seems I have a urine infection…..common with catheters on antibiotics so starting to feel a little stronger today!!!

    Posted by Catherine | May 15, 2014, 2:28 pm
  606. Hi there
    There appears to have been a problem with some posts being considered spam and not appearing but I hope it is OK now. Not sure why that happened.
    Anyway, so glad you have got another date, Anne, and hope it goes ahead next week – I’m sure they’ll put you first on the list! Clare has been trying to post to express her disappointment for you but had trouble with her posts, so please know that she is thinking of you. Hope she can post now.
    Sorry to hear you have an infeciton, Catherine, good that you got straight to see a GP though, you can’t mess around with these bladder infections.
    Glad you have got a date for your knee surgery, Carole, at long last.
    tvtinfo

    Posted by tvtinfo | May 15, 2014, 3:35 pm
  607. Testing, can you hear me, over?

    Posted by Claire | May 15, 2014, 5:10 pm
  608. We can hear your Claire x oh and yes Catherine we could have had such fun in the coffee shop at uch! With our catheter bags in tow!! Lol was thinking of knitting one!! As you can see I am feeling better tonight! Probably best that I couldn’t manage to post my post last night !!

    We have decided that I will go up to London on .my own on Wednesday am as it’s only half an hour on the fast train and then a taxi from kings cross so no sitting around for me on Wednesday ! And Claire I think that we will have all the drips and bags afterwards but nothing horrid in the surgical lounge/reception! Oh and the sexy stockings and knickers we get given OH AND SLIPPERS hmmmmmmmm! Great stuff!! I have learnt though that my fitflops aren’t going to be much good with the stockings (dark green) btw!!! Am I describing it properly Catherine? :) xx

    Anne xx

    Posted by Anne | May 15, 2014, 6:12 pm
  609. Anne am so glad you have got your date for next week you sound lovely and bubbly again now !!!Hope all goes well for you and will look forward to hearing your tails
    Does any one out there have any remedies for this awful soreness I get ,vaginally,when I am sitting it really gets me down and my Gabapentin and Tramadol done seem to do much –apart from make me feel spaced out and able to nod off at the drop of a hat!!!—I have tried a warm bath but of course cant spend all day sitting in one Vit e oil doesn’t do any thing either and my GP is at a loss
    Hugs to you all have a good weekend xxxx

    Posted by carole jarman | May 16, 2014, 4:19 pm
  610. Carole, ask for Diclofenic in suppository form, Voltorol I think is the brand name. I don’t have the energy to walk upstairs at the moment but will check. The 100mg ones are very good for localised pelvic pain. I know they are a bit yucky but they do bring some relief quite quickly.
    They top up my tramadol etc. sorry you are struggling today, poor you.

    Hello everyone else, hoping that this post will stick! Xx

    Posted by Claire | May 16, 2014, 6:03 pm
  611. Testing Testing just in case this does manage to appear good luck Claire for tomorrow xxxx

    Posted by Anne | May 18, 2014, 3:23 pm
  612. Thank you xx doing my headless chicken bit right now :) see you Wednesday if I’m not kicked out as you were!
    So much pain today, I think it’s natures way of stopping me feeling scared, and instead welcoming the scalpel with open arms.
    Speak soon xxx

    Posted by Claire | May 18, 2014, 4:40 pm
  613. Good luck Claire it will be worth it wishing you a speedy recovery Catherine

    Posted by Catherine | May 18, 2014, 8:22 pm
  614. Catherine how are you doing? Is it less of a marathon now …. ? Do hope so? And that you are recovering a bit better now? How is finchingfield ?

    Hope Claire is tucked up in her bed as she has a date with dishy doctor called Anthony tomorrow am! Lol

    Night night all

    Anne xxxxxx

    Posted by Anne | May 18, 2014, 9:10 pm
  615. Thank you ladies….not much sleep going on at Cooper Towers!! Just wan to get on with it now. Xx

    Posted by Claire | May 19, 2014, 3:32 am
  616. I am thinking of you Claire – thank goodness for Amitriptyline is all I can say otherwise I would have had no sleep for the past 2 weeks or so!!!!

    Hugs and hope all is going well?

    Anne xxxx

    Posted by Anne | May 19, 2014, 10:30 am
  617. Hi Anne, I will be finished my antibiotics today & getting my catheter out later so am really looking forward to that. I seem to have had issues with it..my leg bags disconnect easily & so I’ve had to use the night bag most of the time…..not sure how I’ll manage the journey today into London!!!….I’m feeling stronger but get a lot of pain if I don’t lie down most of the time..& have had some nasty urethral pain too…just like I would have if having a UTI .had some family visit yesterday & it was a struggle to engage with them even though I took my strongest painkillers…….I’ll be asking the nurse today ……….bet your a bag of emotions re tomorrow?! Heres Hoping today flies by quickly.
    Claire….hope you feel better soon & that your surgery went well Catherine

    Posted by Catherine | May 20, 2014, 7:53 am
  618. Hi Catherine ohh that doesn’t sound too great!! Yes glad work is over today my eyes are playing up today as I stupidly slept in my contact lenses last night!!! Doh!! They are sore and red today so hope they are ok tomorrow morning!! I don’t look great so hope I pass the I am fit and healthy test!!

    Take care and let’s hope Claire is ok? Hope you also got to London ok…..?

    Anne xxx

    Posted by Anne | May 20, 2014, 4:48 pm
  619. Good luck today Anne! I’ll be thinking of you!
    How are you Claire? I have been thinking of you too.
    I’m actually coming into London today for yet another hospital appointment but to do with the allergic reaction I had just after my tape was put in. It has only dawned on me this morning that this could be connected! I hadn’t even considered it until just now. I think I’ll definitely mention it though as they’re trying to find out what I’m allergic to…
    Another thing to think about!
    Take care ladies and look forward to hearing how you are.
    Sar x

    Posted by Sar | May 21, 2014, 6:14 am
  620. Thinking of you Anne – you’ve had a rollercoaster so far, so I hope it’s the home straight now…

    Sar – have a look at this http://tvtno.org/the-facts/surgical-mesh-and-autoimmune-disease-connection/ before you go in to discuss your reaction. Many of us have allergies or auto immune problems that we never had before mesh.
    Liz

    Posted by LizR | May 21, 2014, 6:24 am
  621. Hi Boy do I wish I had seen this site 10 months ago!!! I stupidly trusted the consultant I saw and so fixed on the thought of having a relationship again at last I had a SUI TOT fitted. Woke up and could not move my left leg from thigh to toes. Took a month of hard work to learn to walk again and 6 months before I could walk more than around the house. 24/7 pain – leg and pelvic nerve pain and groin pain like no other. 9 months of war trying to get listened to.
    Finally the solution after research via all you ladies before me I have got to the REMOVAL stage. German consultants think 9 months is to late and permanent damage may well be my lot – they said if this happened in their theater they would have re operated after 3 days saying they would have looked for the mesh pressing on a leg nerve.
    I am searching doctors willing to remove the TOT mesh:
    Dr Marcus Drake – Bristol – does NOT remove the TOT
    Dr Natalia Price – Oxford- does NOT remove the TOT
    Dr Sohier Elneil – London – DOES remove the mesh – has been removing TOT’s for 4 years and does 3-4 a week.
    Dr Susie Venn – Portsmouth/Chichester – SAYS SHE DOES REMOVE the mesh but will not disclose her experience level or how many she has done….

    My GP wants me to stay local (Portsmouth/Chichester) so that I can be referred by him via the NHS and then notes are easily available.

    However, if a doctor is so closed about a simple question, I am very very scared to pay £200 for a 1/2 hr consultation to see if she can perform the operation.

    Can anyone help? Do you know of a consultant that removes TOT’s in the hampshire area with success? Has anyone ever used Dr Venn – I have to decide who to trust and see this friday 23rd May 2014.

    Any help would be grateful ;))

    Posted by Suki Mann | May 21, 2014, 5:29 pm
  622. Hi I had tvt surgery on 18 March this year. I have been in constant pain since and I have to self catheterise 3-4 times daily. I paid to see Natalia Price privately and she has recommended division of the tape initially which is scheduled for June 6. However it is likely that I will need complete removal of the tape which I would prefer to have done now but I have to go on the NHS waiting list for this as I cannot afford to go private. I’ve had steroid injections suprapubically without effect and now I’m on a whole cocktail of drugs including gabapentin, diazepam, zapain and temgesic patches. The side effects are horrible and I’ve been signed off work. I have no quality of life,am very tearful and I’m getting married in August! I am no longer looking forward to the wedding and have even considered cancelling it. I really don’t know what to do. I am a nurse practitioner in a large practice but even the GP’s I work for don’;t understand. Does anyone on here have any recommendations about where I go from here or what I should or shouldn’t do because I am at my wits end now. I have reported it as an adverse reaction to the MHRA.

    Dawn

    Posted by Dawn Akehurst | May 21, 2014, 5:35 pm
  623. Welcome Suki. Such a shame that you are in a position to need this site, but there is a lot here to be grateful for. We have all been through or are going through what you are dealing with and empathise totally. It’s incredibly painful and pretty scary. I hope that you can use some of the information to inform your GP so that s/he is informed

    You’ve done some good research. I think you’ll find that the two surgeons who we refer to exclusively on this site are Natalia (as you say, she does not remove TOTs) and Sohier Elneil who has probably got more experience than any other UK based consultant in removing mesh. You can read above here all the women’s comments relating to these two surgeons (my was removed by Natalia in the same hospital as insertion).

    You make excellent points about being concerned about the level of experience of your more local consultant and perhaps you can use some of the information on this site on other pages to help your GP see reasons for choosing Sohier if that is what you want.

    So – in simple answer to your questions: I have not heard of Dr Venn (and I’ve spent the last 3.5 years researching this awful mesh mess) at all. Turning it round, could you ask Sohier El Neil if she knows of Dr Venn’s experience…

    Wishing you the very best in your difficult decisions, Liz

    Posted by LizR | May 21, 2014, 5:40 pm
  624. Hi Dawn,

    I know you’ve written to me today by email and might prefer me to respond privately which I will do. Others may have new ideas too. Liz

    Posted by LizR | May 21, 2014, 5:43 pm
  625. Suki I live in Waterlooville and had my surgery done in Portsmouth. I would love to make contact with you to discuss this especially as you are local. I have done a lot of research on this awful tape and I am also a Nurse Practitioner so I wont allow them to pull the wool over my eyes anymore ! I don’t know if there is any way I can contact you directly but believe me I understand what you are going through !

    Dawn

    Posted by Dawn Akehurst | May 21, 2014, 5:47 pm
  626. Thank you all for replying so quickly!! I have been soo alone and so tortured by doctors saying this was in my head, so LizR, yes I am very grateful that we are in an age where we can connect and help each other. I like your suggestion, so will send an email in a short while to Sohier Elneil and ask her if she knows Mrs Venn- Thank you!
    Because my GP could only come up with Dr Venn’s name and her reluctance to be open I’m not happy seeing her, so may call my GP and push harder to be allowed to see Dr Elneil.

    If you hear anymore about TOT removal doctors let me know. And questions to ask as compiling my list now.

    Dawn, when I was in hospital I had women who thought I had a hip operation come and would talk to me and they were having the same problems as you, I was silent because I was so drugged and focused on being able to walk I thought that was my only worry.
    When I got out my boiler broke and the man who came to fix it said ” you look like my wife – had a bladder op in QA and a month in hospital and hobbles on crutches like you” Since then I have noticed that there are thousands of women age 30+/- to 70 +/- hobbling on a crutch and with afo braces…… all in southampton and Portsmouth – we are being butchered very quickly!

    and I think out of all these suffering we are the lucky ones as we have found each other via the web. I am so so grateful to have this support that we are experiencing now and we can help each other.

    Many go on and on listening to the doctors and following their advice that makes things worse! I am really sorry you are going through this mess too and so near your wedding – I know how it takes the joy out of life – the pain alone does that, then the painkillers, then what the mesh is doing inside –

    Dawn I would be happy to talk to you and meet you. Not sure how to privately contact you or hand out my details but if you know reply and I will give you my number and we can go for a coffee and chat.

    I can recommend my solicitors Erwin Mitchell and they have just opened a office in Southampton – Laura Barlow. They really listen and have been excellent in getting a case together. I don’t know about you but I have not been able to work, and am now in debt, about to declare I can’t pay my bills and the disability benefit is nowhere in site – so just having in the background that someone is fighting my corner makes me have some relief.

    I have had really bad reactions to the drugs they had given me the gabapentin was hell and gabapentin and tradamol so bad and in such high doses it made things so much worse. (plus others in hospital) and continue to do so.

    I go to and can recommend Dr Steve Williams at the St James Chiropractic Clinic in southampton ( I knew him before for my son and childbirth) – He was the one who spotted that I was having a reaction to the gabapentin and got my GP to listen.
    He also does amazing pain relief – it is a 24 hr window from the hell and he helps with my leg and nerve pain. My sisters have researched a lot with me and the drugs and combinations they give are terrible – the gabapentin withdrawal was a herion full blown withdrawal and I was not able to look after my son age 9. I am now working a program ( with discussion with GP and research) that is working for me better – but namely getting off the drugs safely and finding alternatives. I am hoping the removal will help further.

    We can chat about this when I see you and I can tell you how to approach your doctor etc to review the drugs.

    Hope it helps some,Dawn …..and anyone else out there going through this hell!

    Posted by Suki Mann | May 21, 2014, 6:35 pm
  627. Hi Suki,

    Support helps a bit – but of course you need the right medic to sort out the mesh. Glad to be of some help!

    How horrendous about the boilerman’s wife too… I must admit, I look at women on crutches and wonder if there is mesh involved…

    Glad that you have some medical support with the drugs. Do read as much of this site and further links as you can so that you can be fully informed. There is a great deal being reported about the Scottish women’s campaign against mesh, with weekly reports in their main paper. You might glean some strength as well as information from the stories.
    Liz

    Posted by LizR | May 21, 2014, 6:49 pm
  628. Hi Suki

    Would be great to meet for a cuppa and chat as you are local. I had tvt but by the sounds of it you had tot. I trained at st Richards many years ago. I’m assuming you had your surgery there or at Worthing? I will attempt to send you my contact details but otherwise you can find me on fb under dawn Akehurst. My ema address is dawnsera@hotmail.com. I am currently signed off work but I can’t afford to be off for long so I’m really pushing to get something done ASAP. By the way liz is a great help and really knowledgable. The one thing we all need is support because the gp’s don’t understand!

    Dawn x

    Sent from my iPhone

    >

    Posted by Dawn Akehurst | May 21, 2014, 6:51 pm
  629. Thanks Liz! I will post any information that might help others in the future and will let everyone know the outcome of the doctors situation.

    Dawn well done for pushing to get things sorted – I waited far to long thinking I could overcome this. sent an email to you.

    Posted by Suki Mann | May 21, 2014, 6:59 pm
  630. Dear all and welcome dawn and sumi to our fab forum which we all don’t know how to live without!!! Claire and I are opposite each other on the ward!! She is going home today :( will be sad to loose my friend as we are believe it or not having a laugh in here fab views of bt tower and lovely sunset last night! Morphine is great!! Now I have got this on my phone will try and keep in touch!!
    We both send our love to you
    Sleepy Anne and sleepy claire as we had our obs done every hour in the night!!!!!! Xxxxxxxx

    Posted by Anne | May 22, 2014, 8:01 am
  631. Hello Anne

    Hope you are recovering well ? Have you had the entire tape removed and if so where? I have just contacted Natalia price private secretary to see how much it will cost to get the tape removed privately as I don’t feel I can wait for the nhs to come up with a date! Please let me know how the op went and how you are getting on.

    Dawn x

    Posted by Dawn Akehurst | May 22, 2014, 8:16 am
  632. Hi dawn I am at uch with claire ! We are under Suzy El Neil who is soooo wonderful !! superwoman! Although Anthony her registrar is great too ;) we can definitely recommend it here! I have heard it’s £10k though it’s such a big op and then if you are like me and claire we will need a colposuspension in approx 6 months too so be aware of that bit too ! Xx

    Posted by Anne | May 22, 2014, 8:59 am
  633. hi Anne, keep that wonderfully cheery nature going. Glad that you are being looked after. Claire – hope you and Anne are not laughing too much and making too much noise in the ward ;-)

    Liz x

    Posted by LizR | May 22, 2014, 9:04 am
  634. Hello Anne

    Am glad you two have managed to have your surgery. I am playing a waiting game but in the meantime the pain and side effect of the drugs are horrible to deal with. Did you have keyhole surgery? I’ve watched the operation on youtube. Probably not a good idea but I wanted to know what lies ahead. I hope you make a good recovery and it hope you will be pain free now the tape has gone. I’m having division of the tape on 6 June although I don’t think this is going to be the solution! X

    Posted by Dawn Akehurst | May 22, 2014, 9:21 am
  635. Thank you Anne Thank you Clare for your kind words from your hospital bed! Thinking of you and sending positive thoughts to speed your recoveries. :) x

    Posted by Suki Mann | May 22, 2014, 11:12 am
  636. Yes when you are a bit more recovered would welcome more information if you are willing.

    Posted by Suki Mann | May 22, 2014, 11:15 am
  637. I am seeing Dr Elneil tomorrow for my first consultation. My solicitor has sent me my surgical notes and the manufacturer serial number and packing number so ready to go! You ladies give me hope thank you. X

    Posted by Suki Mann | May 22, 2014, 11:24 am
  638. Dear All I did not let up with questioning Mrs Suzie Venn about her experience and quoted the MHRA questions on experience and expertise in my final email ( 5th one) Today I got this email ( see below ).
    A GOOD LESSON TO ALL TO ASK THE QUESTION AND MAKE SURE YOU GET THE ANSWER BEFORE SEEING THEM! Also good to make sure you have the correct device information from your surgeon before book an appointment to see anyone.

    Dear Miss Mann

    Thank you for your emails.

    Mrs Venn has said that she doesn’t have a great deal of experience with removal of tape procedures and would be happier for you to see another Consultant although unfortunately cannot recommend anyone in this area.

    I will therefore cancel the appointment for tomorrow but thank you for your enquiry.

    Best wishes.

    Julia Grant
    Medical Secretary to
    Mr J P Britton, Mr P G Carter, Mr J Hicks and Mrs S Venn

    Posted by Suki Mann | May 22, 2014, 12:43 pm
  639. Hi every one and a big “hello”to Dawn and Suki,its very sad that us ladies should have to meet up on this kind of site but a wonderful thing that it is here for us !!!When I first went down the “cure the incontinence “route over 20 years ago there was no such help about nor were there means to research consultants or procedures so I just trusted the docs that I was refered to hence all the many problems and huge amount of surgical procedures I have had done ,and all that despite the fact I was a nurse myself at the time!!!
    Anne am so pleased to hear you are doing so well and still such a cheery soul,glad you have palled up with Catherine,say Hi to her for me if she is still there when you are reading this ,we email each other so I will be pleased to hear how she is doing .
    Dawn I to am a Natalia Price patient I saw her privately last Dec and as my tvt was “cut”—but not by her!!—8years ago she thinks my pain ,which is mainly when I sit ,is caused by fragments that have been left behind,so I need to have them removed plus have a posterior prolapse repaired.I should have had this done in March,so only a 3 month wait on the NHS but as I was told my revision knee replacement was to be done in that month I deferred the op until July.As my luck would have it my knee still hasn’t been done —this is due to be done in my local hospital and not Oxford—I now have a date for that for 30th june –my birthday!!!—which I will keep as I have waited 7 months for it so have had to defer yet again!!When I first saw Natalia I did ask about costing to have it done privately which turned out to be around £9000 a bit out of my price range!!!–Do hope you can understand my ramblings as on reading back it is a bit garbled !!!
    Suki do hope you have got your pain relief sorted I to take Gabapentin I have been on 900mgs 3 times a day for about 6 months now ,also 100mgs Tramadol 4 times a day when neededI did get very “high”at the start but am very use to it now and don’t feel it has much effect on my pain level but I do sleep very well!!Th e other girls on the site are better able to help with your search as altho I have had 2 other ops using mesh I don’t think it is that which is causing my present symptoms as I don’t have “deep”pain mine is a localized vaginal pain when sitting which is like a very intense burning,not at all nice!!!
    Hugs to you all keep smiling thro the pain!!!
    Carole XXX

    Posted by carole jarman | May 22, 2014, 3:29 pm
  640. Hi Carole
    Thank you for the info. Your email is a great help:) I to am a nurse and I feel pretty stupid and naive for having the surgery done in the first place!!! I’m taking gabapentin, diazepam and temgesic patches so I get very tired. I get vaginal pain as well as leg groin and suprspubic pain and I can’t pee! I don’t know whether to go ahead with division of the tape on June 6. I would prefer to see Natalia again and have the entire tape removed but 3 months will take me up to my wedding day ! I’ve researched mesh removal extensively on the net and have found a surgeon in the USA who removes it routinely and is highly experienced. However it’s a long way to go and it’s a scary prospect. I don’t know if anyone else on here had experience of having it removed abroad? I feel I have no quality of life since this operation and I live life one day at a time. I need to return to work ASAP as I can’t afford to stay off sick but I can’t think straight on this cocktail of drugs! I worry that tape division will lead to future problems but right now it’s the only option I have. I may have to consider a loan to get it removed privately. Had anyone gone down the litigation route and succeeded ? I am slightly afraid of doing it as I don’t want to irritate the medical staff more while I’m still under treatment ! There are so many issues and so many questions I don’t really know where to start . I’m so glad to have found other women in the same position as myself because it’s a long road ahead and difficult to make decisions when there is so much uncertainty about the outcome xx

    Posted by Dawn akehurst | May 22, 2014, 3:56 pm
  641. Hi Dawn, I have read your posts and wonder if I can give you a little insight into having surgery abroad…..firstly I too am a nurse, or rather was, unfortunatly I had to give up work in 2011 as a direct result of my pain. If you read back you will see that I have travelled from the West of Ireland to London to have Ms S Elneil remove all the mesh I have inserted(tvt+anterior and posterior mesh for POP) It is indeed a scary prospect to move abroad to have surgery and very expensive…I am very lucky to have private insurance which has covered my hospital stay, however, the costs certainly add up. I left home on April 30th so factor in several weeks acommodation(approx £100 a night), flights, transfers, train journeys, food, dr appts–its £200 to see ms Elneil(well worth it, could I suggest you get a 2nd opinion on the way forward?–at my first appt she told me I was very lucky that I had not allowed a surgeon at home split the tape as that makes full removal very very difficult)–another £200 to have catheter removed, add 6 week check up, video urodynamics at 3 months post-op(£525) and that’s only my first surgery. the hospital originally quoted me £17,000 for my 3 night stay, however my insurance company agreed a final price of less than 6000 euro(approx £4875), I was amazed at the difference in price!!!!!!! I have also worked in the USA some years back and costs there are very high.
    I get a sense from your posts that you are unsure of the way forward, so perhaps a second opinion could clarify some of your questions?? Ms Elneil answers all questions readily, even ones about her experience, patient outcomes etc, she puts a plan of care to you for consideration and answers any other questions you may have by email….I sent many emails to her secretary, all were answered very quickly and I felt very calm and reassured when I decided to come over. I would have gone for a second opinion, however, Ms Price does not remove POP mesh.
    As to the litigation process, it takes years in Ireland and there is a cut off point after which you cannot sue (2 yrs after your injury)so I would suggest that you contact a solicitor with a proven backround in personal injury claimsto assist you in that decision. It too is a very expensive process!! (The law is different in the UK but a lot of Irish law is based on UK law)
    I hope this info is of some help I had my tvt removed vaginally on May 6th recovery is slow–catheter in for 2 weeks, and healing takes a considerable time. Ms Elneil advised me to take things very slowly until she sees me in 4 weeks time. catherine

    Posted by catherine | May 22, 2014, 6:52 pm
  642. hi Dawn, just one correction its actually £250 for a first visit to Ms Elneil catherine

    Posted by catherine | May 22, 2014, 7:12 pm
  643. Hello Catherine

    Thank you for your email. It’s certainly good for thought and I am
    Overwhelmed with the amount of support I’ve had from this forum. I guess my second opinion was Natalia price and she is willing to remove the tape if the division of the tape in Portsmouth fails to relieve my symptoms. The drugs have improved things a bit but I’m drowsy and unable to function at work on them which is why I’m currently off sick. I can’t afford to have tape removal done privately. The American consultant estimate is 12,000 dollars! I think I need to devise a plan of action and stick to it. The more I read the more frightened I get with some of the horror stories ! I feel my quality of life is poor and I am no longer the person I was. I’m miserable and antisocial and pptobably quite difficult to live with. I should be looking forward to my wedding in August but I’m not. I can’t see further than one day ahead. It’s all very frustrating but I am hoping for a positive outcome eventually.
    Dawn

    Posted by Dawn | May 22, 2014, 7:19 pm
  644. Hi girls just to say that claire went home and am missing my buddy! But if I am good I will be the same tomorrow :) really difficult posting on phone so we will fill you in soon xxx

    Posted by Anne | May 23, 2014, 1:56 pm
  645. Hi Dawn I am sorry you have such a dilemma ,would you have full removal with Natalia if the wait wasn’t 3 months ,in which case maybe you could speak to –or email –her secretary and explain about your wedding ,as you know folk do cancel or defer ,like I did ,it would be worth the effort .As I have only had my tape cut in the past I cant say what post op recovery is like ,but you can read about it on this site .I didn’t have a happy experience with my surgery but I wont dwell on that as I don’t want to put any one off!!! I can imagine how spaced out you will feel on your meds what dose of Gabapentin are you on and for how long as I got very “drunk”on a very low dose to start with but I am now on the max,900mg tds and don’t really notice much effect apart from being able to nod off.I couldn’t tolerate the patches I was very sick 3 hours after putting one on.Are you able to self catheterise to help with the peeing?
    Catherine so glad you are getting over your surgery quite well do you feel fairly comfy?do you know when,and what further surgery you are to have ?How very very lucky it was that you have private cover I use to but when I was nursing found I could get help quite swiftly if needs be so I cancelled
    Anne hope all is well with you and you are getting lots of rest and tlc when you get home XXX

    Posted by carole jarman | May 23, 2014, 2:36 pm
  646. Hi Carole I would have the entire tape removed tomorrow given the opportunity. Natalia is aware of my wedding date but they can’t promise anything more than the usual wait on the nhs waiting list. Have you had your tape divided and if so had it made any difference? I’m on 300mg gabapentin three times daily but it’s made me very twitchy and I don’t like it. I really need to get back to work so I’m desperate to get something done ASAP. I’m worried division of the tape could make things worse or make complete removal of the tape more difficult. I’m in no mans land at the mo and I don’t know which way to turn. It’s affected me both physically and emotionally and i can’t look forward to anything not even my wedding which is really sad xx

    Sent from my iPhone

    >

    Posted by Dawn Akehurst | May 23, 2014, 2:46 pm
  647. Hello girls, it’s only me! A.k.a NEW LEASE OF LIFE COOPER :)
    I am home and tucked up in bed, having left Anne, my partner in crime back in London.
    Sadly, Suzi was utterly aghast and visibly moved when she came to see my after my surgery; I had been left to get on in a very in humane state. She said she didn’t have the words to even describe what she had seen.
    I hope I have the strength to take this up with the gp who told me I was depressed and attention seeking, and the one who said I was impatient.

    Writing just that little has whacked me out, but any questions sent in, I’ll endeavour to ask. Please keep our lovely Anna amused xx
    Love Claire xxx
    Sent from my iPad

    >

    Posted by Claire Cooper | May 23, 2014, 2:55 pm
  648. Hi Carole
    I sent reply but it seems to have disappeared somewhere! I’m on 300mg gabapentin three times daily but it’s making me quite twitchy. Did you have division if tape and if so did it make any difference? I’m terrified that it could make things worse or make total excision of the tape more difficult. Natalia and her secretary are aware of my wedding date but it would seem there is no moving up the nhs waiting lists and I think she wants to see how division of the tape works first. That procedure is 2 weeks today. If I had the money I would definitely pay to have it done privately xx

    Posted by Dawn Akehurst | May 23, 2014, 2:57 pm
  649. Hi Claire
    Glad you’re home and doing well. Did you have the entire tape removed and is it a big operation? I’m very worried, just wish I was further down the line x

    Posted by Dawn | May 23, 2014, 3:01 pm
  650. Lovely to hear from you so soon after returning home. But you must rest and not do much for quite a while… just enjoy being mesh free! Liz

    Posted by LizR | May 23, 2014, 3:01 pm
  651. Hi Claire,
    So pleased you are home and it’s all over and the results sound very promising so far. I’m intrigued by Susie’s comments – could you tell us what she meant? Could you be more specific about what she found? I understand if you don’t wish to say.
    I would certainly agree with Liz that you will need to take it really easy because you will be sore if you overdo it!

    Hi Anne
    Glad your surgery went well and hope you will be able to go home soon. How lucky you were able to have Claire as company on the ward. Take it easy when you get home or you will regret it, believe me…

    Hi Dawn
    It is a very difficult situation to be in and there are no clearcut answers with respect to division or full removal going from what I’ve read or heard. There are risks to leaving it in but on the other hand there are risks to taking it out. I would go with your gut feeling.
    Of note, however, I have been told that the sides of the tape do not provide support as the support comes from the piece under the urethra. You can ask the consultant for her current stance on this one but that is what I was told. To be honest, in my opinion, I don’t think even the experts agree on this issue, so, to some degree, you will be taking pot luck with your decision so need to be prepared for the consequences, whether positive or negative. Perhaps you could consider what is the worst case scenario in each case and what could be done to remedy it if this scenario presented itself?
    tvtinfo

    Posted by tvtinfo | May 23, 2014, 3:39 pm
  652. Hi Dawn
    With respect to your wedding, could you get through a long day of celebration if you had recently had removal? Knowing how I felt, I think this is a tall order. The option would be to either (a) postpone wedding (b) postpone surgery till after wedding depending on advice of consultant as to whether further delay could make things worse. As for work, you will be no good to anyone if you are not fully fit, in my opinion.
    tvtinfo

    Posted by tvtinfo | May 23, 2014, 3:42 pm
  653. Hi I think I will go ahead with the tape division on June 6. If I need complete removal I will wait until after our wedding because if I cancelled it at this late stage we would lose so much money now. My partner had open heart surgery in February this year and we’ve already been through so much together I don’t want to spoil our wedding at this late stage

    Posted by Dawn | May 23, 2014, 3:47 pm
  654. Hi Dawn
    Sounds like you have answered your own question. I hope you get relief from the tape division and everything goes well with the wedding.

    Posted by tvtinfo | May 23, 2014, 3:55 pm
  655. Hi All
    Just a gentle reminder that this is a public blog and whilst I welcome people sharing their personal experiences, you may want to be very circumspect when it comes to giving out details of hospitals where you received initial treatment or any other potentially identifying personal details. Many come on this site out of desperation in order to seek help and advice. However, I am occasionally asked to edit or remove details later on, and I try to oblige wherever possible but (a) it gives me extra work :( and (b) doesn’t guarantee they will be removed from search engine results.

    Posted by tvtinfo | May 23, 2014, 4:08 pm
  656. Hi All
    Just sitting in my hotel room after seeing Dr Elneil. From the moment I walked into the room it felt like my war was over. She knew exactly what was wrong, talked such sense and it felt like at long last I had someone on my side saying don’t worry I’m fighting your corner … Explained everything so well, operation procedure, how to overcome complication if nerve adhesion to tape and aftercare. Finally my heart and mind is at peace. I know there is more to this journey but peace … Maybe I might sleep tonight!
    Clare and Annie still thinking of you. Xx

    Posted by Suki Mann | May 23, 2014, 5:10 pm
  657. Hi Carole,
    Since I got the catheter out my urethral discomfort is improving, however my supra-pubic pain is crazy right now but we have been travelling since 10am. Thankfully we are settled into our overnight stop & I know once I get home I will be able to rest plenty. Yes, private insurance in Ireland is a lot more common than in UK, we have had it for 30years, given the very long waiting lists in our public service (up to 1 year to see a consultant in some disciplines) we have always viewed it as an essential even through our economic crisis. Unfortunately being in the healthcare industry means you know a certain amount re some Dr’s so to be able to choose, private is the only way to go!!!
    However, I think from reading what Anne has said re UCH & the aftercare there I would have preferred to be there!! It took 2 days to get a catheter bag holder!! & they didn’t have anti – embolism stockings in my size!!!!!!(x.large) no effort was made to order a pair!!!! Luckily I had a pair with me from my last hospital admission in Ireland. As for getting a leg bag to go home with they didn’t have those in stock either but luckily I asked for it 2 days before going home so they managed to get them in.There was no help re getting out of bed, first shower etc. Etc I could go on (re hand washing, cleaning…I used to work in infection control, lack of pain relief after the surgery) but I feel it’s important to address my issues with the hospital first.
    To answer your question re further surgery, ms Elneil said when I’ve had my video urodynamic studies in August she will be able to advise me further. I will need the dual approach, abdominally and vaginally to remove the POP mesh. And perhaps more surgery to repair any incontinence. Its a slow process she said but thats OK I’ve suffered since 2007!!
    Claire, I am so glad you’re home safely. I am looking forward to that moment. Hope the catheter is going OK & that your pain levels are manageable……
    Anne, hang in there you will soon be home. Hope your pain levels are bearable.
    Dawn, trust your instinct, it will guide you in your decisions, I hope this journey gets easier for you.
    OK now I’m exhausted!! Take care all Catherine

    Posted by Catherine | May 23, 2014, 5:25 pm
  658. Suki – that’s great news.

    Catherine – sounds as though it’s a tough place to be but I really hope that it won’t be long before you can rest at home in Ireland. Then you can take your time to recover.
    Liz

    Posted by LizR | May 23, 2014, 5:33 pm
  659. Hi All, Glad to see you are all getting sorted by Suzy! I had my tvt-o removed on 12 Feb and am now back at work and doing well…. still some leaking, but even that is getting less now. I’m taking meds for urge incontinence so maybe they are helping. My stress incontinence seems fine. I still get some soreness and am sitting on a donut cushion at work to stop any pressure on the area which was giving me a lot of discomfort. I’m back in London for imaging studies on 11 June and back again to see Suzy on 23 June. Thank goodness we all found Suzy and got the dreaded mesh removed…. Just wish Id never had it put in in the first place… xx

    Posted by Emma Co | May 23, 2014, 5:33 pm
  660. Hi Dawn Elneil said to me that she would see to it that I was moved up the nhs waiting list because she saw the urgency … I don’t know if worth seeing another person or adds to the confusion, but just wanted to say its possible. She did say would still be 6 weeks on NHS as priority . Sorry doesn’t help does it?

    Posted by Suki Mann | May 23, 2014, 6:25 pm
  661. Bless you Clare I mentioned you and how touched I was you had written to me via the site from your bedside. I could see real compassion from Suzy. Hope you recover quickly. X

    Posted by Suki Mann | May 23, 2014, 6:27 pm
  662. Hi Suki
    Glad all went well for you today :) I think if I try to get opinions from too many consultants I will end up confusing everyone including myself. I think I’ve learnt to accept that nothing is going to happen quickly unless I win the lottery lol. I’m trying to think positive that division of the tape might help in which case I’ll be able to avoid a major operation. My leg pain is worse today and I’ve got tingling all down my leg which I don’t know is to do with the op or the gabapentin ! It could also be anxiety of course because I’m a bit of an emotional liability these days:) xx

    Posted by Dawn | May 23, 2014, 6:50 pm
  663. Hi all am missing claire and no one in her bed at the moment! It’s just me and franchesca still our Spanish poorly friend! But I do have the only fan in the hospital!! Clare and I were so good at getting things done! And the electric blinds were mended today due to us being too hot !! Ohhh claire your bed is taken now whilst I have been writing this ! It’s taken a while!! Am signing out now ! Dawn it takes a while to recover from any little surgery btw! Even having the Tvt investigated was a nightmare again as it stirred it all up!

    Anne who needs more movicol! But off the morphine pump!! Xxxxxx

    Posted by Anne | May 23, 2014, 7:54 pm
  664. Hi Anne
    Reading all this has just about terrified me. I think I will only have the mesh completely removed as a last resort! I don’t think I could cope with having a catheter in for 2 weeks as I already suffer from recurrent urinary tract infections and I find self catheterising causes irritation. I will go ahead and have the tape divided on June 6 as planned. That should solve weeing problems but there are no guarantees it will solve the pain I know. I think TVT is perhaps a bit easier to remedy than TOT surgery but I’m not 100% sure on that. I hope you continue to make a good and speedy recovery.
    Dawn x x

    Posted by Dawn Akehurst | May 24, 2014, 11:46 am
  665. Hi Dawn,

    Suzi and Natalia use completely different techniques for removal. Unless it’s changed, you are less likely to have a catheter after full removal with Natalia. The TVT is accessible in the pelvic space by laparoscopy, which is her specialism, but TOTs are accessed in a different way which Suzy does through more open surgery and Natalia cannot help with. I gather good recovery is usual with both methods and I am not in any way recommending one over the other. however, for anyone asking about removal, do ask and get clear what to expect in the way of scars and recovery pain. Although there were tiny scars after my laparoscopy, the internal pain from being ‘blown up’ by gas to ensure easy movement of the surgery, was quite painful for a while, but others didn’t have the same (I’m short which may have contributed!). But this was worth suffering for removal.

    Liz

    Posted by LizR | May 24, 2014, 11:52 am
  666. Thanks Liz that’s reassuring to know. I’ve had a laparoscopy before and agree the gas is uncomfortable but you get over it relatively quickly. I have a high pain threshold but my pet hates are indwelling catheters! I have an appointment to see Natalia again as an outpatient on the NHS on June 25. If division hasn’t worked I am expecting her to suggest full removal of the tape ,.At the moment I don’t know which way it is going to go I guess time will tell.

    Dawn x x

    Posted by Dawn Akehurst | May 24, 2014, 12:00 pm
  667. Hi Dawn Suzy Elneil said she would be using both labaroscopy and from below with me as was necessary for a full removal. I think maybe everyone will be slightly different as all our complications are not the same . X

    Posted by Suki Mann | May 24, 2014, 12:22 pm
  668. Dawn I do so feel for you as all this pain and uncertainty are the last thing you need so near to your wedding day —is it to be a biggish affair?—-my advice,and it is only an opinion,is to have the planned division of the tape and see how your pain is after that.Some one has already commented that she thought it was just the mid section of tape that held up the bladder and that was my thought to .Yes I did have mine done like that but remember that was 8 years ago and tvt s were not talked about much then being a fairly new aid to incontince so I had no idea what the urologist was going to do apart from enable me to pee without straining and pushing !!!He did run into problems but I now know had I researched a more experienced surgeon things may have turned out differently,hey ho we all know how good hind sight is!!!
    Claire am so pleased you are home again and ,hopefully getting lots of tlc Will look forward to “talking” to you when you feel stronger
    Catherine glad you are doing ok but sad to hear you were not impressed with your private care .When do you hope to go back to Ireland,do you have to see Suzie again first?
    Hugs to you all xxx carole

    Posted by carole jarman | May 24, 2014, 12:41 pm
  669. Hi Carole thanks for your comments. The wedding is big enough. We are holding it at the Royal Marines museum in Portsmouth so I don’t want to be the physical and emotional wreck I have been over the past 2 months! Did you end up having your entire tape removed or just the division of the tape? I am seriously hoping the division will work. I can cope with pain but I can’t cope with not being able to pee ! Xx

    Posted by Dawn Akehurst | May 24, 2014, 12:54 pm
  670. Hello ladies!
    I’m so pleased to hear that Anne and Claire are on their way to recovery now. You must be so relieved to be all done now!
    I’m also so sorry to hear that Suki and Dawn have had such a terrible time. Ladies on the subject of catheters, I feel I am able to offer you my experience of them to perhaps help inform any decisions you have to make. I am living catheter free for the first time in three years after my last operation in March which Miss Elneil performed for my Fowler’s Syndrome. I too hate urethral catheters but self-catheterising was so painful I was left with no option but to have one. Eventually I had a suprapubic catheter inserted into my tummy which was infinitely better but you do get used to any sort of catheter eventually. The longest I had a urethral catheter was 6 weeks and whilst it was a bit of a pain I learnt to carry on as normal and even went back to work with one in -I am a primary school teacher. I too had permanent UTIs which is painful and frustrating, but again I did get used to it and antibiotics were just something I took every day. I was a bit disappointed when I found out from Mis Elneil I would have to have a catheter for two weeks after my op in August but it will be so worth it compared to having the tape. I’m going to ask if I can use a flip flow valve which is what I had before and means you don’t have a leg bag attached and just empty your bladder into the toilet through the valve when your bladder is full. However, it all depends on how much your bladder needs a rest. I hated leg bags so much but again, when I think of what I managed to do with my two young children with one attached to my leg I think I will cope for two more weeks! I also figure I will be recovering so not doing much anyway.
    I’m not sure if this will be helpful to anyone but I just want you all to know that although they sound terrible, you will cope and the two weeks will be over before you know it.
    I hope that Anne, Claire and Catherine, you continue to recover well and that everyone else is doing ok. I’m counting down the weeks until my op in August!
    Take care,
    Sar x

    Posted by Sar | May 24, 2014, 2:10 pm
  671. Thanks Sar the information you provided is really helpful, I had no idea there was a choice and no idea I could strap it to my leg and carry on life! Will let you know when my op is :) x

    Posted by Suki Mann | May 24, 2014, 2:20 pm
  672. Hi All
    I’ve just had an email from Miss ElNeil. I guess she is my third opinion on this TVT seeing as I have already seen Natalia Price in Oxford. I didn’t discuss with Natalia exactly how the removal would take place but as Liz says I know she does a lot of keyhole surgery. Miss Elneil seems to feel the tape needs removing in a 2-3 hour operation by removing the tape arms via the abdominal route and the vaginal arms removed via vaginal surgery. She did however mention this could be done laparoscopically but 2-3 hours seems an awful long time. I daren’t ask about price????

    Posted by Dawn Akehurst | May 24, 2014, 3:24 pm
  673. Hi Dawn I have never had the whole of my tape removed it was just cut but as my consultant at the time wasn’t clued up on tvts it seems I now have a small area of mesh erosion under the urethra which is giving me jip.I am hoping that when I get around to having the surgery that Natalia is right as 18 months ago I had a EUA and that consultant could feel something but not find it to remove!!As things got slowly worse I researched ,found Natalia and got her private opinion,at the time I got a quote from her sec for that to be done privately and it was £9000!!!In the past I have had a MALE catheter in situ for 3 weeks to keep my bladder patent and as Sar says you do get use to them they are not really as obtrusive as you would imagine
    Suki I hope you get your op date soon.The way I am going if I stay on the site long enough some one is bound to appear who is to go in to the JR at the same time as me !!!I am hoping this will be early to mid Sept but don’t expect to get a date for a few weeks yet,have found they always give you quite good notice.This reminds me ,anyone who has been a patient there this year do you still have to take a pillow in with you ?
    XXX Carole

    Posted by carole jarman | May 24, 2014, 4:10 pm
  674. Hi all, we had super doper beds in UCH ! State of the art and so comfortable! I am now home and even on Saturday Anthony our lovely registrar came and saw me!! We had amazing care and attention I have to say! I have a leg bag and it’s not too bad although my cat is actually sitting on it which is quite funny as it’s obviously warm! It doesn’t come out until 4th June!!!

    So all fine here!! Apart from the face that I have got to think about what I want to eat and I haven’t got a clue as frankly no brain!! Would love chocolate, crisps and snarky things ie pineapple and fruit but the husband came back with fruit but no pineapple!! So am no being Mrs Grumpy pants…… Claire help???? :) xx

    Posted by Anne | May 24, 2014, 4:32 pm
  675. Hi Dawn
    Has the surgeon in Portsmouth done many tape divisions and what was the outcome?
    My removal at JR took about 1 hour and a catheter was only needed for 24 hours.

    Posted by tvtinfo | May 24, 2014, 11:12 pm
  676. Hi
    I don’t know how many tape divisions she has done but I know she is a good friend of Natalia Price. That’s very reassuring to know your removal only took an hour. As my tvt tape has only been in for 10 weeks I am assuming it’s not too embedded in the tissues which is when removal becomes difficult

    Posted by Dawn Akehurst | May 25, 2014, 9:19 am
  677. Oh dear have just re read my last post! My dear friends you will know and understand that the brain transplant is all part of this journey! I will keep quiet and just let you know that claire is feeling a tad poorly and will be in touch soon!! And I will too when my brain is back to normal xx. But to just let you know that at least the pain is not too bad!! X

    Posted by Anne | May 25, 2014, 9:54 am
  678. Hi everyone
    Am just looking for some opinions please. It’s been 10 weeks now since my tvt surgery and as I’ve said before I am due to have division of the tape on 6 June. After my emotional meltdown with my gp 10 days ago he started me on gabapentin diazepam ( just 5mg at night) and low dose buprenorphine patch. Over the past 4 days I am almost pain free and have not needed to self catheterise at all as I seem to be weeing ok! My question is do I come off the meds to see if my symptoms come back ? I’m obviously wondering whether to go ahead with division if the tape. I still have a slight niggle in my groin area but nothing compared to the pain I was in. It’s all very odd how I can suddenly pee again because if the tape is too tight then it’s too tight and no amount of meds would be able to remedy that! I am very confused now about the way forward. Xx

    Posted by Dawn | May 26, 2014, 9:44 am
  679. Hello Dawn

    So sorry for my absence from the forum, I have had the worst D and V bug ever since leaving UCH. I’m thrilled to bits to hear you are getting by pain free….such good news. In my opinion, and I didn’t have any voiding issues, I wouldn’t cancel your surgery until the last minute and leave the option open for yourself. But with the hopes of not needing it doing, enjoying your wedding, and waiting for full removal instead. I suffered from chronic pain since Sept 11 and it’s incredible to be free of the tape now but as I say, I could void without issue.

    Hello everyone, as you can see I’ve been poorly since leaving hospital. I am finally out of bed today though and downstairs. The smell from the kitchen isn’t making me vomit for once!
    Will be in touch properly soon but for now…..IM PAIN FREE!!!!!!!!!!!!!!!!!
    Amazing!
    Xx

    Sent from my iPad

    >

    Posted by Claire Cooper | May 26, 2014, 12:26 pm
  680. Poor you Clare. D and V is the last thing you need but must be lovely to be pain free:) I won’t be cancelling division of the tape as I can still feel it in situe and I don’t think that’s normal. I’m due for some pain killers now and the nagging groin pain is increasing. I don’t think division if the tape will help the groin pain but as you say I might be able to wait until after my wedding to have full removal if that’s required. I hope the d and v settles down soon. Flat coca cola is very good for it so might be worth a try xx

    Posted by Dawn | May 26, 2014, 12:36 pm
  681. Dawn that is amazing news! If I were you and I did only have my second wedding 5 years ago…. you NEED to enjoy it all, and your honeymoon and I can’t see how you can if you are just getting over even a little surgery…… these are just my thoughts though…… and if you are pain free with the meds that is good news!

    Claire I just thank the Lord (lol) and fransisca must have helped…. that I didn’t need to use the loo the day you did so I too didn’t get d and v!! Poor poor you…. (fransisca was a very Catholic Spanish lady in the opposite bed, who although lovely didn’t speak English but I tell you after Claire left her Ecuadorian English speaking friend latched on to me and I must have been triple blessed so not to get it!! (And I was in bed on a morphine pump for two days after Claire was up and about! And the other lady kept leaving her wee in there to be measured! Just saying so no one else gets caught out! ) You never know where germs come from do you?

    I am pain free too btw it’s all just a bit tender in the nether regions and I definitely don’t have my leg pain anymore as the tape was going through a muscle!

    Loads of love to all and so glad to hear you are downstairs today Claire

    Anne xxxx

    Posted by Anne | May 26, 2014, 1:21 pm
  682. Ps dawn could be that the meds have relaxed your bladder which is making it ok to pee again? Xx

    Posted by Anne | May 26, 2014, 1:25 pm
  683. Dawn please listen very carefully – gabapentin in not like a normal painkiller drug – it works over a period of time ( which is why it took a few days to feel the effects ) – it is a heroin based drug and please listen YOU CANNOT just stop these drugs. My GP tried to reduce me quickly over a period of 2 weeks and I had full blown heroin withdrawal symptoms – it will take 4/5 days to kick in and then trust me please please trust me it will takes weeks and weeks to sort out again. If you are going to reduce a) read up about gabapentin on talk to frank and b) make sure you have a clued up GP to guide you with the reduction . Also be aware that gabapentin is a drug your body gets used to the dose ( just like heroin) and eventually it will stop working and you will need to increase the dose . Please go to your GP before stopping – gabapentin and pregabalin are not drugs to play around with and most GP’s are clueless to its drastic withdrawal effect however small your dose !

    Posted by Suki Mann | May 26, 2014, 1:37 pm
  684. Hi Suki
    I would reduce the gabapentin slowly. Fortunately I am a nurse prescriber and I know how to wean off meds. I need to get back to work ASAP but the meds are making me very tired. Being off work has given me some time to sleep so maybe my muscles have relaxed a bit and made it easier for me to pee! The other thing is I don’t get the time to pee at work. Sounds ridiculous I know but the demand in gp practice is so high going to the toilet isn’t high priority. I am thinking of asking my gp for a fit note with either reduced hours or duties because working the hours I do on this cocktail of drugs won’t be easy ! I don’t think I’ve ever felt so tired in my entire life and I think the gabapentin is causing muscle twitches which I don’t like. Xx

    Posted by Dawn | May 26, 2014, 2:04 pm
  685. My recent personal experiences made it hard not to reply without emotion – sorry!

    PHEW!
    I really had such a terrible time with the withdrawal and the leg and groin pain, so I am relieved to hear you knew already to go slowly!

    Yes they make you tired and yes you twitch and will get spasms – the switch from gabapentin the cheaper version to pregabalin the more deluxe version really helped as you don’t get as many side effects from it – I am coping on a lower dose of pregabalin with none of the side effects mentioned so maybe an option to discuss with the GP?

    I really know how it feels to have to get back to work. Many a time I have been there in life and even now have to calm myself not to panic about my current situation.

    In the past I found a rush back to work was to the determent of my health ( and I lost being able to do the job I loved and was my life’s love) and I realised it is only me who can ensure that I remain healthy.

    So now if my body is saying rest I rest and put aside the worry of money and what people at work say. Remember next week you have a division and your body will need to heal – just saying be kind to yourself the best you can Dawn and take care of yourself – and forgive me if sounds too much like preaching!!
    ( Words written with good intent ;) ) x

    Posted by Suki Mann | May 26, 2014, 3:11 pm
  686. That’s ok Suki I know how frustrating it all is. I think I’ve tried to switch off from the pain but I’m probably only kidding myself and will no doubt end up with complete mesh removal at some stage. I think I’m terrified what it might do to me in the long term if it stays there as it’s obviously caused chronic inflammation since day 1. One day at a time I suppose. We will all get there eventually x

    Posted by Dawn | May 26, 2014, 3:23 pm
  687. Hi Dawn I would agree that you should hang on to your surgery date until the last day if you feel you can and see how your pain is ,remind me when your wedding is cos I am sure you will know that even for a smallish op you need to have a couple of weeks you get over a general.I have been on Gabapentin for months now and as Suki says your body gets use to it and you have to up your dose .Good luck with whatever you decide it must be difficult for you
    Suki ,can I talk to you about Gabapentin —just your opinion not any thing written in stone —-I have been on 900mg tds for quite a few months now ,I did try Pregablin for a while but didn’t find it as good,i don’t really get any side effects now apart from being sleepy at times,I am having revision Knee surgery in 5 weeks time and am now wondering if I should start and cut down my dose before having a general anaesthetic don’t want to get even worse vaginal soreness —-which is what the Gabapentin is meant to be for ,along with Tramadol prn—-if I am having to sit for longer spells,but don’t know how this big dose would mix with a general any thoughts please??!!!
    Claire so sorry you have been poorly with d and v that’s the last thing you need ,take care dear ,will speak to you soon
    XXX

    Posted by carole jarman | May 26, 2014, 4:23 pm
  688. Hi Dawn
    Pleased to hear the voiding has improved and you do not need to self catheterise. Perhaps all the post op swelling has gone down? Have you had your bladder scanned to confirm there are no post void residuals? It is not enough to rely on sensation alone as this can be unreliable in my experience.

    It’s difficult to know what to do about the tape division. Perhaps the pain will also ease off too but it does sound severe to warrant those drugs. I would still want to know how many of these procedures your surgeon has performed. You will still be sore as pointed out so will need time to recover before your wedding.
    It’s great you are so informed about your drugs and know the risks of staying or coming off them so can discuss with your doc. Do they have any known effects on the bladder?

    Posted by tvtinfo | May 26, 2014, 9:48 pm
  689. Hi Carole
    I’d be happy to share my experience and give whatever help my experience can give. Because of the adverse reactions I was having I was fortunate my sisters helped with the research and so it helped when I talked to doctors to get the outcome I wanted . You can email me directly or share here – just let me know how I can help :)

    Posted by Suki Mann | May 26, 2014, 9:59 pm
  690. Suki, are you wanting me to give Carole your email details?

    Posted by tvtinfo | May 26, 2014, 10:07 pm
  691. Hi
    Well since posting my improvement in symptoms I seem to have developed a uti. An USS 2 weeks ago confirmed a large residual of 375mls and after self catheterising I’ve drained 650mls but I no longer feel I have that amount in my bladder. The low dose diazepam taken at night helps me to sleep and relax but none of the drugs have a direct effect on my bladder. I still feel the tape is tight but I think I’ve started to get used to it. The bladder infection is probably due to the self catheterisation and the large residuals. I think I will go ahead and have the tape divided because I should be able to pee more easily by now. I do believe some of the post op inflammation has resolved but I don’t think I will be comfortable unless I get something done. I think the thing that’s shocked me the most is the emotional impact this op has had on me. I’m currently off work following a complete meltdown last week. I just couldn’t get my gp or consultant to understand how much pain I was in. I was sceptical about the gabapentin which is what my gp offered me but desperate enough to try anything and I have noticed some improvement since taking it. Now I just need rid of this infection!!!

    Posted by Dawn | May 26, 2014, 10:13 pm
  692. Hi Dawn
    I’m a bit confused. When did you drain 650mls? Was that after voiding? I would not stop self cathing until you have had confirmation of zero or very low residuals. I was told the stale urine left behind can be harmful – but on the other hand self cathing can also lead to infection. Catch 22. Are you in touch with a urogynae nurse who could advise?

    Posted by tvtinfo | May 26, 2014, 10:22 pm
  693. I am happy for Carole to have my email address :)

    Posted by Suki Mann | May 26, 2014, 10:46 pm
  694. Ok I’ve done this for you, Suki

    Posted by tvtinfo | May 26, 2014, 10:55 pm
  695. Hi the 650mls was about a week ago and at the time I was just dribbling small amounts of urine. I am able to pee almost normally now most of the time with what appears to be a strong flow.
    My wedding is 23 August. Sorry I keep forgetting to answer that question. A uro gynae nurse had been in touch with me once. She wasn’t all that helpful and as she works all of about 12 hours a week she isn’t very easy to get hold of! This morning the uti symptoms have subsided but that’s probably because I started myself on some cipro yesterday. It’s all very draining getting recurrent infections but I’ve taken prophylactic antibiotic therapy for the last 20 years for recurrent uti’s. The self catheterisation is causing urethral irritation and making things worse for me. Hopefully the tape division will help. My surgeon is doing it on a Friday and says I will be ok to go back to work on the Monday. What does everyone think?

    Posted by Dawn | May 27, 2014, 6:09 am
  696. Hi all,
    A quick update for you on what Suzy found:

    The tape was pulled tautly across the base of the urethra, so much so that the entry into the bladder did not appear circular )normal) but more like dome structure with a flattened base. The tape had obviously partially shrunk on itself that it had become like cheese wire. It was incredibly tight and hard to get off the posterior urethral wall as it had partially embedded within it.

    It was also quite near to the urethral meatus (or urethral outlet), where normally it is mid-urethral. This can happen in some cases, in that it slips.

    So there we have it. I wasn’t ‘clinically depressed’ thank you Mr GP, I wasn’t a victim of ‘multiple surgeries because of my need for answers to the unanswerable’ I wasn’t addicted to the ‘buzz’ of opiates thank you Mrs PainManagement. (What buzz….? ) I didn’t have a ‘perfectly positioned sling’ Mr Urologist, aka ‘top bloke in the field of urology’ according to Mr GP. And I most certainly didn’t require a total abdominal hysterectomy, Due to ‘adenomyosis’ Mrs Gynecologist.
    Don’t get me started on the complications from that surgery again!!

    I’m feeling a little emotional today after Suzies email…how good is she…bank holiday Monday too! Still have the D part of D&V, so nauseous, and hubby has had to go to work. I was 34 when this began, I turn 40 in 6 weeks. Surely they should have been the best years of my life. But I’m jobless, without any confidence, overweight and most probably incontinent. Some days it just smarts a little.

    BUT ITS OUT! And it’s down to you guys…..I wish I felt able to advise others more positively. Anne will vouch for me….I’m a bubbly sort. But today I feel voiceless and cross. God knows what that cheese wire did to my insides, I wish I could go on the TV with a news flash style report and bring attention to the fight like those before me. Bloody mesh. (Look, I feel better already :)

    Love you all xxx

    Sent from my iPad

    >

    Posted by Claire Cooper | May 27, 2014, 8:00 am
  697. Hi Dawn,

    I had the bottom section of my tvt tape cut out -three months after I had it put in- for similar reasons to yourself. I wasn’t in loads of pain but it was really uncomfortable as it has eroded through into my vagina and I couldn’t wee. This was 2.5 years ago. I had two weeks off work after however. I could probably have gone back to work after a week had I had an office job, but as I’m a teacher there’s no way I was ready to go back after 7 days.
    I don’t think surgeons always think about what your job is when they say you can go back to work really quickly! Just think about how much standing you need to do in the day in your job and how you are after a general anaesthetic as well before you rush back to work.
    I hope that helps and that your UTI clears up quickly.
    Sarah x

    Posted by Sar | May 27, 2014, 10:21 am
  698. Hi Everyone

    Just thinking of Claire and Anne and wondering how they are getting on. You have been in my thoughts a great deal as I am still so touched that you contacted me from your beds hours after your operations :). Dr Elneil was amused when I told her.
    Sending positive thoughts to you both and others recovering.
    Just seen my GP who looked genuinely moved by what Dr Elneil said and printed off and started written to the. Commissioning board while in my appointment :) I was so grateful – hoping I am a few steps closer to the beginning of my resolution :)

    Wishing you all well and big hugs to all of you – your help and support has kept me from falling into a very dark place. X

    Posted by Suki Mann | May 27, 2014, 11:05 am
  699. Thank you Sarah that’s useful. I’m a nurse practitioner in a gp surgery. I’m not on my feet a lot but the job is demanding. The uti symptoms are improving but pain in groin is a nuisance today. Am hoping division of the tape will solve most of my problems x

    Posted by Dawn | May 27, 2014, 11:22 am
  700. Woooowwwww!!!!!!!!!!!! Dawn with all those symptoms going on I wouldn’t be so sure!! Put it like this I had an “investigation” op last July and came away with the diagnosis of intersistial cystitis and had been in enough agony ever since then to need solpadol and amitriptyline ever since!!! Draw your own conclusions as it was only a look see under anaesthetic!!!

    I am now pain free for the first time in a whole 2 years!

    I feel for all you lovelies but am so grateful to Suzy Elneil and her team at UCH – I just can’t tell you how amazing AND competent she is!!

    Anne xxx

    Posted by Anne | May 27, 2014, 11:33 am
  701. Ahh Suki!! Thank you for thinking about us! LOL I think that Suzy and Anthony her specialist registrar were quite amused by us to be honest, what are your thoughts Claire? ;)

    Tips from me – when you have to have a catheter ask for a mesh leg holder rather than the straps! I was lucky and was offered one, as my straps kept falling down when I walked and the health care assistant felt sorry for me!! Also Liz had idea of j clothes and almond oil for cleaning, well I had managed to get 99.9 percent water wipes with o.1 percent fruit oil which are in the baby wipe section in boots! Not your average baby wipes and then I put almond oil on that!!

    All good here and just had paracetamol pain relief!! Wow!!! Still feeling great although I might have to have a snooze in a while

    Anne xxxxx

    Posted by Anne | May 27, 2014, 11:47 am
  702. Sounds as though things are really going in the right direction, Anne – and I’m glad you found fruit oil wipes!! Definitely need to rest, sleep and do very little to start with as that ensures healing long term rather than set backs. So pleased that you are pain free at last – the recovery from surgery is such a different pain from the mesh.

    I understand what you are saying about investigations and anaesthetics. It takes over 2 weeks for the body to get rid of the anaesthesia, and I would think that any surgical intervention is going to be unpleasant let alone painful.

    Unfortunately Woman’s Hour today http://www.bbc.co.uk/programmes/b044gtk7 was advocating mesh. I wrote to them over 2 years ago when they did the same in another programme about incontinence, and they ended up inviting me to the programme which I took up. Please, please will you all write to WH to complain…http://www.bbc.co.uk/radio4/womanshour/contact/email.shtml

    Posted by LizR | May 27, 2014, 11:57 am
  703. Hi Anne
    I was investigated years ago because they thought I might’ve had interstitial cystitis but they decided I didn’t which was a relief because it’s a horrid condition and do difficult to treat. I think I’m probably just trying to be optimistic :) have done too much today in cleaning mode lol and the pain is far worse. Does anyone else get involuntary twitches of fingers on gabapentin or one of the related drugs? It’s innerving me and after looking on google I’ve decided I have all sorts of nasty neurological conditions!!! I know I should know better being a nurse !!! Xxx

    Posted by Dawn | May 27, 2014, 12:01 pm
  704. Dawn, naughty naughty!!! Get off Google and let’s get writing to woman’s hour!!! My step son in law works at the sun…nice and high up!!! And step daughter is also a journalist!!!! . I think I might chivvy them up into doing something tooo!!!!!
    :)

    Xxx

    Posted by Anne | May 27, 2014, 12:19 pm
  705. I promise to email them Anne. I’ve already emailed that embarrassing bodies programme for recommending tvt surgery to a woman. They followed her up 2 weeks later. Might’ve been better if they followed her up 2 months + later with her self catheterisation kit and cocktail of meds! Xx

    Posted by Dawn | May 27, 2014, 12:25 pm
  706. Anne – if you seriously have those connections then we need to use them. This has been a discussion point in other TVT circles for a while: Scotland’s key paper has a proactive journalist who has featured mesh injured patients and even deaths, week after week. if we could get willing journalist and women to do the same for England, then the powers that be might sit up and take note.

    There are a number of us who have been on the mesh scene for many years now and are doing what we can to write to the MHRA, RCOG, MPs, etc (lots of women are doing this) and we feel as though we are not getting anywhere and mesh continues to be used. We need your relatives…. if at all possible.

    Liz

    Posted by LizR | May 27, 2014, 12:25 pm
  707. Just putting the call in now to step daughter!! And will write to woman’s hour!!! X

    Posted by Anne | May 27, 2014, 12:38 pm
  708. I have emailed woman’s hour too Liz!!! Xx

    Posted by Anne | May 27, 2014, 1:08 pm
  709. Thanks Liz I will write to complain for sure. Dawn had said via Facebook that the lady in embarrassing bodies also promoted the mesh. I emailed a compliant but never heard from them – perhaps we need to complain on mass to the bbc CEO for their insensitivity and show how many of us are suffering!

    Posted by Suki Mann | May 27, 2014, 1:27 pm
  710. My whole body twitched involuntarily on gabapentin especially on the 900mg – twitching fingers happened too- I won’t scare what happened to me in the 1200mg dose! But Dawn if you have just started the dose it may settle after a while – just very interested that you too have been put on a high dose to start ( you did say 300mg X 3 a day? ) your body has to adjust to the medicine and once used to it it had to be increased as doesn’t work any more / ( took about 3 months for that to happen in my case) the way it should be given is lower dose and see where your tolerance is. If you get sweats ( drenched) extreme fatigue , memory loss and inability to move arms – let your GP know as these are signs you don’t tolerate gabapentin . Hope that helps. X

    Posted by Suki Mann | May 27, 2014, 1:35 pm
  711. Great if many complain on WH.

    It’s worth bearing in mind that You and Yours have now featured two programmes questioning use of mesh, and Woman’s Hour did at least feature me (both programmes are linked on this TVTInfo site, as are the awful stories in the Scottish press that are making things happen there).

    Embarrassing Bodies (Channel 4) have an outrageous record for promoting mesh so they are worth writing to as well.

    If any of you have not yet done so, please report your mesh problems to the MHRA – again, details on this site. There are many of us campaigning hard against their lack of action in the face of evidence…

    Anything you can do to raise awareness that sufferers are not a single person (as many consultants would have us believe that we are the only one suffering with mesh) but are a significant number – there are petitions that testify to this, as well as my inbox and this forum!

    Posted by LizR | May 27, 2014, 1:35 pm
  712. Sounds like you are the person to know! If they could do a piece on us so public can see how many we really are suffering that would be amazing! I also know Dj at radio 105 – how would every one like to do an interview in the impact this operation had had on our lives ?!

    Posted by Suki Mann | May 27, 2014, 1:41 pm
  713. Yes to any interviews, emailing, canvassing, writing.
    Have a UTI on top of my very much still present D part of D&V, hence my quietness. I did write a huge post this morning but it did that thing again when it didn’t show on the site. District nurse has been out and catheter looks ok, have antibiotics for UTI and have to give in a stool sample in the morning.

    BUT IM STILL TVTO PAIN FREE :0)

    Part of my message this morning was this extract from the email that Suzy sent me last night.
    :

    The tape was pulled tautly across the base of the urethra, so much so that the entry into the bladder did not appear circular )normal) but more like dome structure with a flattened base. The tape had obviously partially shrunk on itself that it had become like cheese wire. It was incredibly tight and hard to get off the posterior urethral wall as it had partially embedded within it.

    It was also quite near to the urethral meatus (or urethral outlet), where normally it is mid-urethral. This can happen in some cases, in that it slips.

    Hope it posts this time xx
    Sent from my iPad

    >

    Posted by Claire Cooper | May 27, 2014, 2:34 pm
  714. Hi Liz

    I have asked my sister a cousin of her husband a journalist ( I think the times ) so see if any help there too. Would you speak on the radio too? X

    Posted by Suki Mann | May 27, 2014, 2:49 pm
  715. Hi ladies
    I can’t keep up with all these emails:) just had my hair done as this surgery had turned me grey overnight!!! I would happily speak out to anyone against tvt surgery. There is a journalist on my fb page called Lauren Ashleigh who is always looking for stories for woman magazine as far as I know. She may be happy to do an article

    Posted by Dawn | May 27, 2014, 3:35 pm
  716. Clare is trying to post but it isn’t letting her post it TVT info? Is this normal? X. If I could work out how to copy and paste from the iPad I would give it a go, but sorry Clare it’s not letting me……. I would need to get onto my computer to do that xxx

    Posted by Anne | May 27, 2014, 3:39 pm
  717. Oh Hello! I would also be interested to know if the thermal ablation I had in 2011 was the demon that shrunk my mesh to UNDER A THIRD of it’s original size? Why boil a womb for 45minutes when there is a polythene tape less than an inch away. My pain started that very day! Only pain during intercourse before this. How can I find out if the other “cheese wire” effected meshies had an ablation too?
    So annoying feeling muted by the health bodies. X

    Posted by Claire | May 27, 2014, 3:57 pm
  718. Great to get such a lot of responses about the possibility of media focus. You need to be careful not to litigate if you are going to get yourself in the public eye with your name, but anonymous stories are fine for those going through the legal route.
    I think that the difficulty with this is that it really needs a co-ordinator and few of us have the time to offer that. I run my own business which is suffering with so much TVT stuff to help with!

    But if we can start by finding a journo who is interested in the principle of reporting over several articles (It seems have far more impact that way) – that would be an amazing focus on the situation. it might even make some big organisations take action – them that are not doing anything to protect women (and their families) from mesh when it is their role to do so, or at least their role is to ‘do no harm’. Liz

    Posted by LizR | May 27, 2014, 4:27 pm
  719. Hi liz
    That’s a good point about litigation. I am not currently going down any legal route as I don’t know whether I have a case. I’m pretty sure they will argue that the risks of tvt surgery were discussed with me pre op which they were but obviously I hadn’t bargained on long term pain, a multitude of drugs and time of work as a result of it! I have thought about contacting one of these no win no fee solicitors but I’m not sure I am far enough down the line yet to prove they have caused me harm? Time is of the essence and once I am back at work I will have difficulty responding to emails let alone managing a media campaign. It’s hard to believe they are still promoting the stuff with its track record but it’s considered a quick fix. My sister in law had her tvt surgery 8 years ago and so far has had no problems whatsoever but that doesn’t mean problems aren’t lying around the corner for her! For all of us on here it’s been a bloody nightmare which is ongoing!!!

    Posted by Dawn | May 27, 2014, 4:47 pm
  720. Hi Claire
    I’m pretty sure my gp thinks I’m a complete head case after my emotional meltdown last week. I’m also employed by gp, s so god knows what they think but I’m beyond caring now!!! I had a LAVH last year for adenomyosis and that was the best thing I ever had done. This was definitely the worse decision I’ve ever made. I’ve lost a stone in weight and I didn’t need to. I’m lucky I still have a job but psychologically I am traumatised by this surgery and I don’t think I’ll ever be positive or objective to any lady who comes to me asking for uro dynamics and subsequent tvt surgery! I am hoping as it’s only 10 weeks since my op that division of the tape won’t be too difficult although I can feel it cutting in and have done so since day 1. They had the opportunity to put it right on day 8 post op but chose not to ! This is the hospital that apparently removed my appendix in 2000 as a result of peritonitis. I found out last May when I had my hysterectomy that they had not only removed my appendix but my right ovary and Fallopian tube also as my notes said I had an ectopic pregnancy!!!

    Posted by Dawn | May 27, 2014, 5:11 pm
  721. Poor you. what a total disasster. Yes, I am ready for a documentary too. Roll on the cameras! You are on the up side now, and you still have the best years to come.

    Posted by Joy | May 27, 2014, 5:38 pm
  722. I agree that mesh is a nightmare, and part of the living hell is getting your situation understood, believed in, and acted upon. I know that Suzy and Natalia are rare in their field – they can do all three (Natalia only for TVTs). The anger that can go with it is sometimes difficult to manage and yet so understandable – we have often lost some of the best years of our life, and our partners and families have to try and understand but they also struggle a lot.

    Your stories posted today are further evidence of what we know from research: mesh shrinks, so this can cause problems sooner or later (indeed, many years later so the docs really have no idea what is going to hit if this is a timebomb…)

    Thanks for all the positive thoughts re media. The main thing to be careful of – I’m told by someone who knows! – is naming names or hospitals specifically if talking to media. Focusing on what needs to change is also very important – informed consent, compulsory reporting of complications by medics, clearer statement of complications etc. So it doesn’t have to affect any potential litigation. On that subject, it is hard work in English law as far as I gather but I have not taken legal action.

    liz

    Posted by LizR | May 27, 2014, 5:53 pm
  723. Thanks for the update Claire and hope you are feeling better soon. I do not know why your post got put into spam by the filter – sometimes this happens when there are other spam comments around the same time – but I have taken it out and it should appear now. You have explained what Suzi found and expressed so aptly how you feel now that you know what was causing all your problems. I’m so glad you are feeling better other than the D&V. Thank goodness for surgeons like Suzi.

    Posted by tvtinfo | May 27, 2014, 9:06 pm
  724. Hi there all,
    If any of you are willing to give your stories to either appear on this blog or in the press, please could you email me: tvtinfo@yahoo.co.uk. I will just keep a record of who expressed interest in the event that I am approached or I get any interest. I am also considering running a series of posts with personal stories of mesh. I would always ask you first for permission to pass your details on of course if I am approached at a later date.
    tvtinfo

    Posted by tvtinfo | May 27, 2014, 9:10 pm
  725. Hehe, just seen newly restored 8am meltdown post. Perhaps it was better it went into junk lol xx
    Thank you for scooping it out though, if it helps others feel at ease with their anger it will have achieved more than just relieving my insanity at the time. Yes of course to being on any blog or release. I’ll email you to confirm.
    Night all xxx

    Posted by Claire | May 27, 2014, 10:37 pm
  726. Hi Liz

    Before I found this site I had a meeting with my solicitor and asked the question:
    “could I go public with this story while going through the law suit. ”

    She said I can speak to whoever I liked about my story but they normally wait until after the medical expert has given their opinion ( which for me will be in about 5 months time :( – this will also decide whether they will file against Johnson and Johnson gynacare as well) and then they have a press office that manages the press and will help get the story in the public eye ( she said the vet calls from journalists etc for you)

    I have tried to get media to take up the story already but no luck – I think that having the right contact who talks a certain way helps. Being in pain I think I have sounded to emotional! A good PR or campaigning person would do better!

    You are right one person co ordinating it would be great. Has anyone spoken to the Scottish group? They joined with the USA groups and the corporate action network who really raised the awareness of their campaign ( listen to radio interview by Michelle Llamas on drugwatch ( I got the link on tweeter and I think posted it on my Facebook )

    Hope that helps a bit :)

    Suki x

    Posted by Suki Mann | May 28, 2014, 5:45 am
  727. Yes those points are all very good ones and English law is harder apparently Scottish law makes it easier to bring a case.

    Posted by Suki Mann | May 28, 2014, 5:48 am
  728. Clare I can totally feel what you are feeling and I am sure others will feel the same.
    The continued insistence to make our problem something else other than the mesh and in particular trying to force us to believe this is in our minds and treat us as such quite honestly means we have a right to feel this way.

    It makes me more angry when consultants in other countries recognise that there are complications with the mesh and even if still using the mesh – act and remove the mesh within days of complications starting.

    I think feeling angry is part of the healing process.

    we also are on drugs that affect our emotions.

    You’ve been through lot and what you were told after the removal and knowing the truth is there in black and white would make anyone scream you owe me an apology !

    Even with the truth in front of them in black and white I am sure some doctors would be still insist otherwise.

    The one tiny and it is tiny thing that we have to be grateful for in all this is … We are the lucky ones who refused to believe the untruths being offered as a reason for our pain- we are the lucky ones that found each other on this site and were able to help each other get to the doctors who can help us .
    Tears appear when I think many many women who will be believing the rubbish fed to them after their surgery and making things worse by taking anti depressants etc and living broken lives without hope.
    We stood up and we all have been brave enough to face the only real solution which is the removal of this awful device .

    Clare I too have been unable to work and an apprenticeship I have been waiting for just accepted me last week to do something I love but which is physical. I’m devastated as I think I can’t do this and know I have months more of this to go. A friend of mine who works for the citizens advice B is helping me with forms for disability benefits which I feel I never wanted to do. But I think now it’s helpful as takes away one worry.

    Nobody would have imagined how far reaching this operation would affect us, jobs, critical illness insurances, re mortgages – everything has been affected.

    I find I cope best when I live just for today, I cope with today and enjoy today as best I can – it’s the only way I can get to tomorrow .

    Sending you my thoughts and hope you feel better today .

    Sorry I rambled !!

    Posted by Suki Mann | May 28, 2014, 6:30 am
  729. All that you say is true and valid. And very common for us as mesh sufferers. I agree – we are the lucky ones.

    Re campaigns, yes, we are in almost daily contact with the Scottish group who are amazing in their campaign. The solid support of a journalist has brought their story to light…

    Posted by LizR | May 28, 2014, 6:52 am
  730. Ps everyone re awareness : Ingrid hard acre ( mp) and Graeme Morrice ( York mp) spoke out in parliament over mesh concerns – I am meeting with my MP next week to discuss getting her to do the same for me.
    They can only represent their constituents so the more of you that do this too – the more it will be Heard in parliament !

    Posted by Suki Mann | May 28, 2014, 8:05 am
  731. Well I’ve just had a positive response from the MHRA but as expected they want the make model and batch number of the mesh used. I’ve just emailed my consultant asking for this information. Hopefully this request is not going to piss her off too much bearing in mind I’m due more surgery next week!!!!

    Posted by Dawn | May 28, 2014, 11:47 am
  732. Can anyone help? I reported to the MHRA about a month ago without the packing number. When I found out the packing number I reported that too.

    I got a response asking permission for the manufacturer to contact the hospital… BUT I know I saw on a website a warning to NEVER agree to this … But I can’t remember seeing why this was — does any one know why?

    Posted by Suki Mann | May 28, 2014, 12:43 pm
  733. Hi Suki
    Such a lovely message from you; brought a tear to two, but not from sadness. It feels like validation, every single time one of you poorly souls or reformed fighters say you totally understand every facet of this horror of an ordeal. I have no idea how long the psychological affects of the past 3 years will last for. I had very low self esteem to begin with so I’m in negative figures right now. So thank you, it means so much xxxxx
    I hope you have better luck claiming for benefits than I did. Apparently I didn’t pay enough national insurance in 2012 to be eligible for ESA and my husband works more than 24 hours a week, which leaves me entitled to nothing. I have a sick certificate, but no one to send it to. I left employment of the NHS in April 2013 but in 2011 because of pressure from management regarding my illness I switched from a permanent contract, to go onto the bank. IDIOT but that way I could work my socks off when I felt well and not, when it was inflamed. In 2012 I was very ill for the second half of it, so only earnt about 6000 for the year.
    According to the replies to my protest letter to being turned down, they use 2011 and 2012 only to calculate this benefit. The preceding 16 years of NI didn’t count. So annoying!!
    I do hope you are more successful. Let me know.

    I still have the D but I can feel the antibiotics working on the UTI already. Bit worried that they are feeding the tummy bug more so I’m sprinkling probiotic powder into my drinks! My mother in law bless her (!) made me some chicken soup and we’ve bunged it in there.

    Well love, I’m going to sign out but again many thank you’s for your lovely post xxx

    Posted by Claire | May 28, 2014, 3:39 pm
  734. Hi everyone

    I found the article on meshed up TVTmum about the MHRA asking for the manufacturer to contact the hospital – I think it has some valid points.

    I have said no to the MHRA – I offered my surgical notes ( maybe ) if my solicitor agreed. They have not bothered to replied. I offered Dr Elneils findings but they haven’t replied… Read this page as there are valid warnings!

    http://www.tvt-messed-up-mesh.org.uk/notice-mhra-concerns.html

    Posted by Suki Mann | May 28, 2014, 8:57 pm
  735. Thanks, Suki, the link is fine – people can read all the info via the link.
    tvtinfo

    Posted by tvtinfo | May 28, 2014, 9:57 pm
  736. I could never bring myself to ask Natalia for my mesh model number or info. I think it is a terrible thing to expect a patient to find this out and risk prejudice. I could get the info from her if needed at any time, I guess. But I think it is a wrong expectation.

    Posted by Joy | May 29, 2014, 8:26 am
  737. Hello joy
    I understand where you are coming from. It didn’t feel ethical to ask but then again we are all suffering because of this stuff and something needs doing and the MHRA need to act soon. I am a medical professional so it feels even more awkward but I’ve never felt so desolate since having this surgery and sometimes we have to speak out and be heard even though we may not want to. In my case Natalia has to put right what’s gone wrong at another hospital and from what I have read her and the lady in London are spending a lot of time trying to rebuild women’s lives after tvt surgery. I don’t plan to go down the route of litigation but I would like the MHRA to investigate this mesh further to prevent other women suffering the way we a have.

    Posted by Dawn | May 29, 2014, 8:41 am
  738. I got this email today from the email I wrote raising concerns. They were willing to compromise giving only details of the device and an anonymous reporting ( ie does not have my name or the hospitals name ) I was happy with this. May have been because I copied my solicitor in on all communication.

    Here is the reply:

    Dear Ms Mann,

    Thank you for your emails dated 28/05/2014.

    I appreciate the points you have raised in your emails with regards to not allowing the manufacturer to contact the hospital. All medical devices on the market in the UK have to comply with device-specific legislation. The legislation places obligations on manufacturers to conduct post-market surveillance activities on the performance of their medical devices and investigate all adverse incident reports associated with their products.

    As a compromise, would it be acceptable if I notified the manufacturer with anonymous details? For example, I could send the following information and send you a copy of the email for your records. It is important that the manufacturer is aware that you suffered after having the device implanted.

    Dawn I emailed you the full version :) xx

    Posted by Suki Mann | May 29, 2014, 10:50 am
  739. Every body must do what they feel is right for them and it’s ok if you just want to have the removal and leave it there. For me I feel I could not go through all this pain without learning taking place and that for me is fighting to help make sure other women like me do not suffer.
    There is always going to be different feelings and it’s ok to have differences and still be there for each other and support each other – we have been put in a situation where we need to support each other – and we need to be a united group voice. :))
    Wishing you well joy- any decision you make that feels right for you is ok. :)) x

    Posted by Suki Mann | May 29, 2014, 10:58 am
  740. On a lighter note ladies…. I am feeling great!!! Well, after having an afternoon snooze that is…. You do certainly need to take it easy, which is what I am doing, although it is quite difficult to fancy doing anything with the catheter strapped to your leg I have to say!! Ohh and I REALLY want a bath, but that’s not going to happen any time soon either!!
    Just wanted you to know how it feels one week TVT free!!!!!!!! I am soooo glad it’s out! I am just using paracetamol during the day and then the solpadol at night and first thing in the morning…. Here’s to paracetamol 3 times a day! And am also reducing the amitriptyline slowly, slowly!!! Am sure that that is giving me twitchy legs though!!! LOL!!

    Lots of love all

    Anne xxx

    Posted by Anne | May 29, 2014, 6:26 pm
  741. Great news, Anne. You’re doing really well and I agree about the value of regular paracetamol – often with ibuprofen – once the worst surgery pain has gone. Yes – can imagine you’re dying for a bath! keep resting and smiling,

    Liz x

    Posted by LizR | May 29, 2014, 7:27 pm
  742. Hi Anne,so glad you are feeling so well it must be a great relief to you,when do you have the catheter removed,do you have far to travel to the hospital?
    I have heard that Gabapentin can cause body twitches so maybe Amitriptyline does to as they are fairly similar,I find I don’t stay awake for long when sitting down but as I am on 900mg 3 times a day I guess that is to be expected
    Hugs to you ,get lots of rest and keep on being cheery !!!XXXX Carole

    Posted by carole jarman | May 30, 2014, 3:37 pm
  743. Hi TVTINFO I notice that quite a few girls from this site disappear and never write again I often wonder how they are doing —well I guess if they don’t have the need of the site—-do you ever hear from them privately ?Thanks again for starting this up you have been a life saver for many of us XXX Carole

    Posted by carole jarman | May 30, 2014, 3:40 pm
  744. Aw, thanks Carole. It’s nice to hear my efforts are appreciated and the site has helped people. Just wish I could spend time writing some posts to keep people informed and updated. Hope readers are following Twitter too as I do put more regular stuff on there.
    I know people stop posting comments but I do think they may be following still as I have quite a few signed up to receive notification of comments or updates by email. I have also passed on emails to others at their request and so some are maybe supporting each other by email. I do have my stalwart network of contacts too with whom I exchange info and discuss mesh issues and news. Some of these women also support others. I am setting up a discussion forum and will let you know when it’s up and running.

    Posted by tvtinfo | May 30, 2014, 9:17 pm
  745. Hi Anne
    I am so pleased to hear you are doing well after your removal and the results look promising by all accounts. Hope you continue to make improvements and thanks for keeping us all posted on your progress. Keep having plenty of snoozes cos it’s early days and you still need plenty of rest to recover from your surgery.

    Posted by tvtinfo | May 30, 2014, 9:23 pm
  746. Hi all
    I think the discussion on getting your mesh model and serial number from the implanting surgeon sums up the issues surrounding reporting of complications or adverse events. The MHRA always quote their figures of reports made and we can see why the numbers are so low. It does make things awkward if you are still hoping for remedies from your original hospital or surgeon (although you are perfectly entitled to this information and I think it should be mandatory to be given it along with your discharge notes) because you worry about getting on their wrong side. So, at what point do you request them? Shouldn’t your surgeon report the adverse events him or herself? LOL That isn’t going to happen! So that leaves it up to the woman suffering from complications and trying to find treatment to report it and being asked for implant info so the manufacturer can ‘investigate’ any problems. LOL It’s a joke.

    Posted by tvtinfo | May 30, 2014, 9:37 pm
  747. Hello
    I agree totally even though it does put the victims of mesh in a difficult situation. To date I’ve had no response to my request for the information from my consultant but as I’m seeing her next Friday for division of the tape I will ask again then. As a health care professional I personally would have no hesitation reporting to the MHRA but consultants seem reluctant to do so probably due to fear of litigation. Unfortunately it’s a case of those who shout the loudest are the ones that are heard! I have and always will remain professional and believe there are ways of asking that are non threatening and cause the least offence. My issue isn’t with my surgeon even though I do believe she should have acted sooner when I was readmitted only 8 days after the tape was inserted. At the end of the day we all want the best outcome whatever that may be for ourselves and for others who are suffering as a result of this mesh. Please don’t be afraid to ask for the details of your mesh because if we don’t ask the MHRA won’t act.

    Posted by Dawn | May 31, 2014, 8:57 am
  748. I think reporting to the MHRA isn’t against the surgeons – it’s against the device not being suitable for its use in SUI and POP, and surgeons should not be afraid to report either. The MHRA form is just facts about the device.

    If surgeons and hospitals were more honest about the possible risks and told us about the material about to be inserted and how then that would let us make more informed choices.
    If they reacted to our complications immediately – ie removed the mesh – I don’t think any of us would have to fight or go down the litigation route .

    It’s because we get left with drugs as the only solution and treated like we are mad that causes people to feel wronged and take action.

    There are two things to fight –
    Stopping an unsuitable material being used as it’s in fit for the purpose.
    And
    Surgeons listening and dealing with complications quickly instead of using their power and position to hide complications for fear of legal action.

    Posted by Suki Mann | May 31, 2014, 10:14 am
  749. Hello lovely ladies. I have been reading through all your comments for the last few months, and I am amazed by your strength and drive to connect and support each other. I have cried so much for all of us and the thousands of other women who have had their lives ruined by vaginal mesh/tape.

    I had a TVTO implant in 2009. Like you I have been living a nightmare ever since. I was 36 when I had my surgery. My son was two and my daughter was fourteen at that time. For the first year I was housebound because I couldn’t stand up straight and walk without it causing me extreme pain. Since then I have had 5 surgeries; attempts to cut and remove the tape and temporary nerve blocks (sounds familiar, right?). I was able to make a few attempts to return to work in that time but I sadly had to retire aged 40 because of my health. We are now in the process of selling our house because we can no longer afford to live here. It has been one of the most difficult events in my life and as so many of you know all too well, feelings of despair and hopelessness are never far away.

    But there is always hope. This blog is one of the most important sources of hope I have found. I just want to say thank you for every post, every comment, every story shared. I found Suzy Elneil because of you. I have my removal surgery with her next Tuesday. I am nervous, but take great comfort in knowing there is still hope that I may regain some quality of life. Thank you for posting about your removal surgeries – from your hospital beds too! I read them when I feel scared and they shine a light for me and keep me strong and ready for my own removal journey.

    Like most of you, I have been on the usual cocktail of drugs and have been using morphine patches for the last 4 months. Incredibly I am still in so much pain. It is insane! I’ve told my hubby I’ll be signing myself into rehab to detox from all the drugs once I get this tape out!

    When I fell into a deep depression about 3 years ago, I started meditating and it has been a great tool to help cope with the pain and fatigue as well as the depression. More recently I have been using Mindfullness bodyscape meditations and I have found it does wonders for me. You can find them on You Tube, so if you fancy trying it, there is no need to buy a CD.

    So a huge big “Thank you!” from me.
    Sending you all healing love and light.
    Cat

    Posted by Cat Lee | June 1, 2014, 12:22 am
  750. Hi Cat

    Thank you so much for sharing your story – I can see this has also effected every aspect of your life and I know it has been hard for me trying to be the mother I wanted to be with this – my son was 8 and it was hard enough so hearing your story has made me see others have had to cope with much younger children through all this. For me this is the hardest aspect of what this TVT-O has messed up.

    Hearing another story that is so similar to mine about TVT-O complications really really saddens me. Because the MHRA has deemed the TVT-O safe it is so important we share our stories because every medical article I have read says they do so much more damage!
    Cat, I feel your nervousness too – putting yourself under the knife again and trusting in another surgeon is hard after what we have been through – Clare and Annie’s stories really helped me too and everyone’s faith in Dr Elneil.
    I will be thinking of you on Tuesday :)

    Thank you for sharing about your mediation – before this operation and the month in hospital I mediated every day sometimes twice a day- and I did yoga 2-3 times a week. But as the pain got worse and the drug side effects kicked in I have been unable to mediate since the last weeks in hospital. I know it helped me before but I have lost the connection! You have reminded me to try again thank you!

    Cat, I’d gladly join you in rehab to get off these drugs – trying to withdraw under my GP was such an awful experience and I’m dreading going through it again – doing it together will help :) ( only you are a little ahead with operation times :) )

    Thinking of you and wishing you all the best – pleaser us all know how you are after Tuesday.. X

    Posted by Suki Mann | June 1, 2014, 7:08 am
  751. Cat, Suki and all mesh affected women – we all gain through the shared support provided by this forum. I had my mesh TVT removed 3 years ago but still remember how scary it was and there was only one woman who I could talk to about her removal by the same surgeon as so few had been done.

    It is thanks to the continual hard work of Ms TVTinfo that such fantastic outcomes are now possible through this forum (yes, I do know her and she is a remarkable woman!). It was really moving to read your story, Cat, and I know that you must be full of hope for the outcome of Tuesday’s surgery. You have been through so much – and yet still the MHRA don’t act, as Suki says and as so many of us have written here and directly to them to point out, repeatedly. You are in good hands and we look forward to hearing your positive progress. Liz

    Posted by LizR | June 1, 2014, 8:14 am
  752. Both you and ms tvtinfo have been amazing Liz – I think most people would not want to be constantly reminded of their trauma and therefore not be able to continue to support all is new comers, but the 2 of you do and manage to have so much intuition and understanding and no judgement on us – it’s a life saver – and really hope one day this turmoil will end for us all and future victims will be a thing of the past :)) x

    Posted by Suki Mann | June 1, 2014, 9:29 am
  753. Hello Cat,

    I’m so sorry to hear your story; you remind me very much of myself although I have older children, I was only 34 at the time of implant. Well done for having the courage and energy to come forward and say hello.

    I’m two weeks post revision surgery by Suzy Elneil and I am truly transformed. I have been given the chance of the future that at times, I didn’t even want. You will be in the safest of hands with her and her committed team.

    This will not be the same experience that I imagine you have had with health professionals over the last 5 years, this will be one in which you are empowered, believed and respected.

    Is your op this Tuesday or next? Please let me know if you get a chance so I can be thinking and praying for you on the correct day :)

    And don’t forget that although we may not all reply to a post, for various reasons from time constraints to bad memories, we often read them and you will be listened to.

    Lots of love to you,

    Claire xxxx

    Hello lovelies,

    Quick update for you all on progress post surgery, now the bug has finally cleared! I am catheter free!!!! And about 75% free from pain. How terrific is THAT! I’m am quite incontinent though, stress and urge and also when I hear running water! I had a few embarrassing accidents at the beginning before I realised how bad I was….but there is the second stage of surgery if it’s too much of a problem. I get quite achey if I do too much, and that can be as little as stand to peel the potatoes and similar but I’m being a good patient for once and not letting my house proud OCDness get the better of me. (My kitchen floor….oh my kitchen floor).

    I still have very little energy but then again I’ve had the bug for 9 days so hardly surprising.

    In total agreement with Suki, Mrs TVTINFO and Liz R are wonderful selfless and giving supporters of all of us who come to the forum to seek advice or a virtual hand hold. We all have our unique ways of advising and helping each other, we can all give levels of input depending on our circumstances, and it is always valued and welcome. I find strength and friendship through this forum, I’m uplifted when I read about the progression many of you are making to get this horror story made public, because I don’t have the energy or confidence yet to do this myself.

    One day we should all try and meet up. I’ve obviously met our lovely Anne and I natter to her and Carole over email about our lives other than this mesh (Carole…..it’s June!)… One day I’d like to meet you all xxx

    Sent from my iPad

    >

    Posted by Claire Cooper | June 1, 2014, 12:57 pm
  754. Hi Suki, Liz,
    Thank you for your lovely messages and for taking the time to write back.

    Yes, trying to be a mum and wife – those everyday family things you can no longer share is the most heartbreaking thing for me. My husband was a nurse in his early career and is so caring and understanding. I know I am very lucky to have that and I would be lost without him for sure. It’s his birthday today and I managed to get up to let him have a lie in this morning. It is very rare that he gets the chance to rest, so I am so happy I was okay to do it today. I am back in bed now because I just need to lie flat for some relief, but I will try to watch a movie with him later in bed.

    My little boy Charlie is a gentle and sensitive soul. He has seen me going through all of this more than anyone else, being so young and at home with me in the first couple of years. I had to involve support for him so he could have social time to aid his development. I made a call to Family Services and had a lot of support from our local children’s centre and also Home Start. The children’s centre assigned us a link worker and she came every Friday afternoon to take us to the park. I was able to sit and watch as she did all the physical stuff with him and running around. Home Start assigned me a volunteer support person and she also came once a week. So every Monday afternoon she would drive us to the library to a session for pre-school children. These ladies were amazing and even though Charlie is at school now, we still see them. He calls them his aunties :)) They are actually helping out to do the school run next half term. They really are like extended family members and I will be eternally grateful to them for all their support. If anyone out there is struggling with a young family I would advise you to contact your local Family Services team and see what they can offer. I was unable to do lots with Charlie and it helped us so much. I found that the things I could do with him were art and craft activites. That was our special thing we did together. Charlie is an amazing drawer now and wants to be an artist when he’s older. That makes me feel so proud and negates any concerns I had about not being an active mum. I do miss a lot of outdoor time with him, but we still have lots of fun together. Also he is so sensitive and understanding. So if I can’t do anything he usually says “Don’t worry mum, get some rest. It’s not your fault.” (it melts my heart every time, I am so lucky). When Suzy asked me what I would like to be able to do that I can’t do at the moment, my reply was “The school run every day!” That would be enough to make a difference for me and it’s my first goal.

    My daughter has had a totally different experience being that much older. She knows me as a mum who was really active in her early years and who worked and studied as she was growing up. It has been tough on her and we have missed out on so much mother/daughter time through her teens. No shopping trips, girly days etc.. She is off to London to university in September so I am hoping to be well enough to help her move down later this year. I am so proud of her and how hard she has worked despite the challenges we have faced at home.

    The MHRA and lots of doctors, consultants etc. really have so little understanding and compassion for us and our families. It is astonishing really. I sent in my adverse report about two years ago but not much has happened since then.

    One of the things I have felt about what has happened to us, is that this is a woman’s health issue, a gender issue even. I was a lecturer when I was working and out-earned my husband, so my wage was so important to try to hold on to. However every single male consultant I had appointments with dismissed my concerns about work and a few even said I could probably get a desk job if I wanted to work. How sexist and infuriating they were!

    But I know I am in good hands now thanks to this forum. So when I am in a bit better shape, I really want to help in any way I can to support and raise awareness of our plight. Thanks Liz and Ms TVTO and everyone else for making this happen. I really do owe you my life you know.

    I am travelling down to London from Hebden Bridge in West Yorkshire, so we set off tomorrow. I have family there we can stay over with so I am not too far away from the hospital on Tuesday morning. I will bring my I-pad with me and let you know how it goes.

    Suki, when I am not well enough or too doped up to meditate, I just stay in bed and practice yogic breathing/pranayama. Do you have a date for your surgery yet? I hope you don’t have too much longer to wait.

    Here’s a link with details about yogic breathing if anyone is interested;

    http://www.artofliving.org/yoga/breathing-techniques/yoga-and-breath

    Thanks again lovely ladies. I will be thinking of you all and will let you know how it goes. Stay positive :)

    Cat xx

    Posted by Cat Lee | June 1, 2014, 1:04 pm
  755. Thank you Claire! I just read your lovely message.

    My surgery is this Tuesday. I am scheduled for a 4pm start, so can actually have breakfast so long as it’s before 9am which is perfect!
    I am so happy for you that your pain levels are so much better. It really is amazing and gives me so much hope. Thank goodness for the Internet!

    Your comment about your kitchen floor made me laugh. It seems men and teenagers are blind to dirty floors. It drives me crazy too. I have had on occasion to just do it because it looks so bad, but I always end up in bed then from hoovering, so by the time I can get up again the floors are usually grubby again – lol! It is even worse now the house is on the market. I hate the thought of viewers looking around if the place isn’t clean and tidy. Luckily my mum in law springs into action and comes over to spruce the place up if we have someone coming though, so that’s great.

    Keep taking it easy and thanks again for your loving thoughts and words. They keep me in a happy place :))

    Cat xx

    Posted by Cat Lee | June 1, 2014, 1:23 pm
  756. Hello Clare
    So happy to hear from you – I has not seen a post for a while and knew you had the infection and was worried about you. I was going to leave it a day or two more and then try and find out from Anne or mrs tvtinfo or Liz .
    Fabulous news about being transformed and almost pain free !!! It gives us all hope :))
    Keep up the good work of loving and caring about yourself above the housework and chores :)

    Can’t believe 2 weeks has flown by! My GP has filled put the form to the commissioning board so praying date with Dr Elneil will come in soon!

    Keep in touch :)) x

    Posted by Suki Mann | June 1, 2014, 2:04 pm
  757. Hi Cat

    Thanks for sharing more of your story, it has lifted a little black cloud and given me hope. The solicitor has a liaison officer who called to listen to the things I’m not coping with and because my 82 year old mum has had to do all the school runs, cutting grass, cooking and cleaning, she felt I needed to ask adult social services for help. I didn’t know there was a family social services and they’d help in the way you described so that gives me a new starter point. My son Jakob was such a gem in the beginning but of course the silly hospital told him it would sort its self out in 6 months – so he was all supportive and cheery until after 6 months when he realised things were getting worse not better and he was shipped off to friends on weekends because I could not deal with his basic needs. Now he is very resentful and angry and lashes out at me and others. It is a unhappy feeling for us all.
    I will call tomorrow to see what help they can offer. I also need to go to the citizens advice about help now paying bills which is scary.
    Cat I had a homestart volunteer when Jakob was little and she was just amazing. After the 5 years were up we still were firm friends ( even though she is my mums age! ) she was the one who came after my time in hospital and said if you are not getting the help you need from physio let’s do it together. She then proceeded to hold my hand through every step of learning to walk, she celebrated the smallest success with me, and as I improved she held me and walked with me getting me into and out of pools to where I am now – amazing people and amazing charity is homestart!

    Thank you for the mediation tips and breathing – I had forgotten how effective simple breathing exercise can be – so I might just do that tonight when I can’t sleep – now that out tv has broken I have no excuse!!

    I will think of you travelling to london and on Tuesday ..

    Oh and Clare … Definitely we must all meet one day in person :)) bless you all. X

    Posted by Suki Mann | June 1, 2014, 2:29 pm
  758. Ps everyone the cinnamon trust has been myife saver. My dog was getting really depressed not being able to walk him any more. My mum(82) was trying but he was used to 2 hour hikes. At first the cinnamon trust who only helps over. Age 60′s who have been hospitised or injuried with their dogs from dog walking to fostering , had said no to me as not 60+ but when my friend called and explained my mother was stressed with the walking – we got several dog walkers who are just fabulous and have started taking my dog for walks and for a day or weekend to help out- if anyone is struggling give them a call .

    Posted by <