Discussion Page

This page is for open discussion of all matters relating to TVT or mesh surgery. Please feel free to leave your comments or describe your experience of TVT.

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Discussion

151 thoughts on “Discussion Page

  1. Hello Readers,

    I’d really welcome your comments on the mesh issue.

    What can be done about the mesh implant problem?

    Do you think the MHRA are doing enough? Are the doctors warning women adequately about the risks? Are they practising careful patient selection? Why are the surgeons’ professional associations continuing to promote mesh?

    Should mesh be banned?

    Please feel free to comment….

    Posted by tvtinfo | June 6, 2013, 11:03 pm
  2. While The MHRA UK are not accepting Hospital Episode Statistics as adverse incidents this certainly needs to be addressed in parliament UK as the figures for mesh removals are being manipulated.

    How can a government agency who are supposed to protect the public go into denial of mesh removal hospital statistics they are the fact and truth.

    The nature of reporting adverse incidents is a complete whitewash and the numbers will never rise while the system the MHRA UK have is in place.

    It just does not work.

    These operations using mesh for prolapse and stress urinary incontinence should be banned.

    Women’s quality of life is diminished which is a knock on effect to husbands partners and family.

    The cost to the NHS must be enormous also for all of the removals which have taken place as well as the initial operation.

    We do not have enough surgeons with the expertise in the field of mesh removal (remembering that this evil stuff is not supposed to be removed).

    This should have been addressed in the first stages of when this mesh first came onto the market.

    These operations should be banned.

    Posted by Teresa Hughes | June 14, 2013, 11:24 pm
  3. I agree.

    Sadly, the MHRA figures for adverse events showed that only 27 clinicians reported adverse events between 2005 and 2013 – that’s an average of around 3 per year! (http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm130603/text/130603w0003.htm#130603w0003.htm_wqn18) Contrast that to the figures in the Hospital Episode Statistics which show that thousands of these devices have been partially or fully removed in that same period. https://tvtinfo.wordpress.com/2012/05/23/uk-parliament-statistics-on-mesh-implant-surgery-and-mesh-removals/ It just doesn’t add up. The MHRA may not want to add them to their database but they should at least show some intelligence and recognise that these figures are telling a story about mesh problems, as are all the support sites which women have set up to help those suffering from complications, not to mention what’s been going on in the US with litigation related to mesh products.

    It’s appearing more and more like a cover-up job to me, I’m afraid. We can only conclude that the MHRA must lack the will or the resources to do something about the mesh problem.

    Posted by tvtinfo | June 15, 2013, 12:49 pm
  4. Before any procedure a patient should be armed with the facts, possible complications, side effects….I wasn’t, most women weren’t. Products should be fully tested before they are used…TVT mesh clearly wasn’t…what is going on here? Women are being treated as guinea pigs, then when it goes wrong few are prepared to listen, believe, help! This is devastating lives! How can it be possible that this is being allowed to go on? There is little or no media coverage apart from the odd individual telling their story, yet there are hundreds and hundreds of women suffering. This surgical procedure should be banned and a full enquiry undertaken. It is nothing less than a complete disgrace and not enough is being done which adds insult to injury. This all comes down to money, isn’t the welfare of women more important…

    Posted by Maxine | August 22, 2013, 1:23 am
  5. Maxine, I am in complete agreement. Women do not seem to be getting honest and accurate information on this TVT procedure and its risks nor the fact that the product has not been properly tested. I, too, am amazed that the media in the UK has not given this topic much coverage – apart from a couple of articles in the Daily Mail and Daily Record there has been very little coverage by the national press and media. The MHRA are ignoring the plight of sufferers and the Royal College of Obstetricians and Gynaecologists are wilfully blind to this massive problem.

    Posted by tvtinfo | August 29, 2013, 9:11 pm
  6. I wonder how many women were told it was a mesh, rather than a tape.

    Posted by Joy Lloyd | October 17, 2013, 9:36 am
  7. Hi Joy
    I think most women believe it is a “tape” because that is what TVT is described as in the hospital literature – tension free vaginal tape. If they knew it was a piece of plastic mesh that may shrink, degrade, cause a foreign body reaction, irritate tissues and nerves causing pain, cut into tissues and nearby organs, sever the urethra and erode into the vagina causing pain, infection and difficulties with intercourse, then they would probably think twice before agreeing to have it.

    Posted by tvtinfo | October 27, 2013, 10:44 pm
  8. I had the mesh implant done just over two years ago and without success I was told this had never happened before and that my consultant said they were disappointed I was the only one to complain about the side effects I have been left with. I did take a bad infection after having it done and have to wear towels every day it is demoralising
    Michelle .C .
    Glasgow

    Posted by MICHELLE CREE | October 29, 2013, 7:02 pm
  9. Hi Michelle
    Please know that you are not alone in Glasgow, there are many of us. I am happy for tvtinfo to give you my email address.
    Elaine
    Glasgow

    Posted by Elaine H | October 29, 2013, 10:56 pm
  10. Yes, thanks Elaine. I will pass it on if Michelle emails me – see my contact details.

    Posted by tvtinfo | October 29, 2013, 11:05 pm
  11. thanks Elaine I would appreciate that
    michelle

    Posted by MICHELLE CREE | October 30, 2013, 3:07 pm
  12. Hello, I’ve just been told I have tape erosion after having a TVT fitted in Dec in Lewes (Sussex). My consultant doesn’t know yet what all my options are but thinks I will need to have the tape split (but says it can’t be fully removed). From my research I understand it can be, but only by a few surgeons experienced in this area. I want to feel in safe hands and trust my surgeon to do the right thing but the more I read up in it, the more confused I am. Is it worth seeking a second opinion, and if so, how doi go about it?

    Posted by catdeanuk | February 13, 2014, 4:40 pm
  13. Hi Cat
    Sorry I did not reply sooner. Sorry to hear you are having problems with your TVT which you had fitted in December. The tape can be fully removed as you can see from this site but often you will be offered the smaller op of cutting the tape under the urethra. You can listen to what options your surgeon presents and yes you can always get a second opinion but that is not always an easy process but don’t rule it out if you are not happy. You didn’t say exactly what your problems are but I would guess it is to do with bladder emptying if the surgeon wants to cut the tape, but yes you need to read up on this and ask your consultant lots of questions.
    tvtinfo

    Posted by tvtinfo | February 27, 2014, 10:48 am
  14. Hi I had my tvt mesh “cut” in 2006 and have been having problems for the last 2 years with pain when sitting,I saw Natalia Price in Oxford at the begging of the year and I have mesh threads eroding parts of my vagina !! Am going into hospital in 2 weeks time to ,hopefully sort this out –I could have had this done some months ago but was due to have knne replacement surgery first—
    I am just sending this message to warn any one who is thinking of having their mesh devided ,just be sure you pick a Consultant with lots of experience and not just a Urogynaeacologistas I did!!
    Best wishes Carole

    Posted by carole jarman | September 20, 2014, 4:09 pm
  15. Hi Carole
    Thanks for the update. Hope the knee replacement went well and you have made a good recovery, ready for your next op – removal.

    Mesh threads eroding – poor you. Hope they manage to get them out OK.

    tvtinfo

    Posted by tvtinfo | September 23, 2014, 8:58 pm
  16. HI TVT ,yes my knee op has gone well thanks,now its onwards and upwards for the mesh threads removal –am not looking forward to that!!!—I was wondering if you could forward Ingrids email to my email—-which I believe you have from our previous contact—please as I have lost hers and thro this site she has offered to visit me in the JR

    Posted by carole jarman | September 27, 2014, 4:09 pm
  17. Hi ,have now had my mesh threads removed,cant say I feel any more comfortable when sitting yet but am hopeing things will improve with time. I was saddened to hear that at least 2 ladies were in the ward to have a tvt fitted hope all goes well for them
    Best wiwhes Carole

    Posted by carole jarman | October 17, 2014, 4:05 pm
  18. Hi Carole,
    I hope you start to feel more comfortable soon. Yes, it’s crazy that you are having yours removed while others are having them fitted on the same ward 😦 Let’s hope they don’t get problems.
    Keep us all posted on your progress.
    tvtinfo

    Posted by tvtinfo | October 20, 2014, 6:16 pm
  19. Hello,
    I have been following the blog here for a while as my daughter has an eroding TVT sling, and is in the throes of investigations to have it removed.
    We would like to know if anyone else has had a TVT sling put in after radiotherapy to the pelvic area affected the bladder?

    Posted by Caro | October 22, 2014, 9:59 am
  20. I’m sorry to hear that, Caro. I will ask around but don’t personally know of someone who had sling fitted after radiotherapy – sounds like adding insult to injury what with the erosion. Surely the tissues around there would be fragile after such treatment (radiotherapy) so makes you question wisdom of plastic implant. I’m no expert though. Are you in UK?

    Posted by tvtinfo | October 23, 2014, 10:04 pm
  21. Hi, Yes we’re in the uk in the south. I guess it was thought to be the quickest simplest solution, but my daughter has many of the symptoms mentioned in all the stories on the blog. It was reading about it here that made her determined to have the tape removed if possible.
    I’m really interested to know from other women who have had the tape removed how all their symptoms are? Obviously for most the pain is the biggest issue, but how are all the other symptoms like the UTI’s, brain fog etc clearing up after tape removal?
    I also notice London operations are usually accompanied by a urethra reconstruction, has this been straightforward for those who had it?
    And what are the reasons London insist on going home with a catheter bag, is it because the op is not done laparoscopically there?
    Thanks, it feels so good to have support out there from others in the same situation, a massive bonus of the internet!!

    Posted by Caro | October 24, 2014, 8:03 am
  22. Hi Caro Sorry to hear of your daughters on going problems,poor girl I am assuming that as she had radiotheraphy she may have had a bladder growth?If so ,as TVTINFO says it does sound pretty awful.
    I had my tape “cut ” about 8 years ago having had it in situ for 2 years ,as you will have seen from my previos posts I have just had some eroding bits of mesh removed as I was in a lot of discomfort when sitting.Things are not greatly improved in that area as yet but I am hopeful.However since having the earlier surgery I did find my bladder discomfort eased,as did the uti s
    I hope some one from the south can help re your questions on the catheter etc,I can only assume —being a retired nurse—that its to keep the bladder patent without the patient having to spend longer in hospital,but I could be wrong
    Suzie Elniel ,I believe is excellent in this field
    Good luck Carole

    Posted by carole jarman | October 26, 2014, 5:22 pm
  23. Oooooh dear none of this sounds good at all! I just came across this site as I was looking to find an answer to my question ‘can the TVT tape slacken off over time, thereby causing a return of problems with stress incontinence’?. Luckily I haven’t had any of the pain or problems that many of the ladies seem to have experienced and it seems to have done the job for the last 7 years but now I’m finding my ‘old problem’ is back again ;-(
    I was going to see about having it using private medical insurance but think it may be safest to leave well alone? Anyone any thoughts, ideas, suggestions?

    Jules

    Posted by Julia Johnson | November 24, 2014, 4:45 pm
  24. I have just had major surgery for the removal of a tvt mesh, tape.
    this has to be the worst thing ever, infection after infection, extreme pain from nerve damage from removal, no control over my bladder what so all, I feel I wish I never had the procedure done in the first place, to go throught the pain before and now this, is just unbearable, I do nit blame the surgeon for the pain after the removal one bit, but to think I still have one side of the mesh still inside me, as this wasnt causing me pain, the scaring in my groin where it was removed looks like I have been butchered, and the pain in side my vagina is not good either, will I ever get back to the way I was before xxx

    Posted by janine | November 24, 2014, 9:05 pm
  25. That’s bad so sorry to hear this has happened to you I know a lot of the ladies that suffer and have been left with walking sticks and wheel chairs I hope your surgeon has told you clearly what to expect as a result of this.
    I am a suffering too but still have my mesh in I just had antibiotics for a urine infection still incontinent to.
    I hope you get some answers and hope for a speedy recovery take it easy ok X . RAMONA DAWN

    Posted by RAMONA DAWN | November 24, 2014, 10:22 pm
  26. Oh dear JANINE,am so sorry to hear of your pain and ongoing problems,I do so feel for you as I to am still in a lot of discomfort after having tape removed despite takilg a lot of pain relief —-which it isn’t!!!—May I ask what surgeon you had,or if you would rather just say what hospital you went to?We can only hope that with time things may get better but its a b—–of a life in the mean time isn’t it?Hope you are taking some good pain killers and if not ,do keep on at your GP to help
    If you want my email address I will ok it with tvtinfo
    Keep your chin up Carole

    Posted by carole jarman | November 25, 2014, 3:50 pm
  27. Tvtinfo—Hi ,hope you are well?if Janine wants my email ad its fine for you to forward it !!!You will have read how I am but at least my knee is a lot better now!!
    Have had lots of support from the lovely Ingrid
    Love Carole

    Posted by carole jarman | November 25, 2014, 3:53 pm
  28. Hi carole
    I had the removal surgery at leicester general, by mr c mayne, a lovely man, I went all over the country oxford, hereford hospitals to see who coukd remove it, mr mayne was the only one, nwho would help.
    The biggest thing upset me this morning, I woke up and had wet myself, iam so upset by this, I have hardly any feeling down my leg, do people still work with this condition ? I cant seeing me going back anytime soon either, its just so hard at the min.

    Your e mail would be lovely carole xx

    Posted by janine | November 25, 2014, 7:53 pm
  29. hi there I am sorry to hear that I fear having this done I don’t know what’s worse having it still in or having it removed its a shame you put your faith in someone to help and this happens and puts you back to square one I hope you get it sorted soon xx michelle (c )

    Posted by RAMONA DAWN | November 25, 2014, 8:06 pm
  30. Hi TVTINFO would you give Janine my email address please.Ta hope you are well

    Posted by carole jarman | December 3, 2014, 5:17 pm
  31. Hi Janine,sorry for not being on the site for a while its that time of the year!!!Hope tvtinfo sends you my email ad,as I had my tvt tape put in 12 years ago by Chris Mayne and ,yes he is a lovely man.I hadn’t realized he did removals or else I would have gone back to him as Leicester is a lot closer than Oxford.Do you live in the Midlands?As to the incontinence I think your bladder will take awhile to settle down do you have a follow up appointment before Christmas?I expect you are using inco pads like most of us !!!
    Take heart time makes a lot of difference.As to work cant help you there as I am a retired nurse!!

    Posted by carole jarman | December 3, 2014, 5:24 pm
  32. Yes I can do that for you today Carole

    Posted by tvtinfo | December 4, 2014, 8:06 am
  33. Hi carole
    mr mayne said he had only done 6 of these procedures I was no 7. Yes I agree its gonna take time for my bladder, its just not nice atall, hopefully get your e mail soon, xxxxx

    Posted by janine lowe | December 4, 2014, 10:10 am
  34. Hi Janine,did you get my email address as TVTINFO has told me she passed it on to you a few days ago? Hope you are getting on ok and your bladder is beginning to behave
    xxx

    Posted by carole jarman | December 9, 2014, 5:15 pm
  35. I’ve bee.n reading all these comments, so shocked! I didn’t even know I had mesh in me, how stupid am I! Always was called Tape!

    Posted by janice | January 14, 2015, 10:39 pm
  36. so sorry to hear that like lots of unsuspecting women out there wont know either its shocking to know that the people you put your trust in do this to you.

    Posted by RAMONA DAWN | January 15, 2015, 1:58 pm
  37. Hi There. I had my mesh inserted in 2010. No options other options given and I have to say or was the most horrific experience with infections and scarring.
    Initially I had some relief from my symptoms but over a year ago the symptoms of incontinence returned. finally sought help at end of last year and was told my tape was sagging/loose.
    I also have severe groin and leg pains and awful tearing sensations in my pubic area, I take mess for this.
    I am due to see my doc this week regarding what options can be offered. I’m now of the opinion I want the damn thing removed. However, after reading other ladies comment regarding problems after removal I don’t know which way to go.
    I do understand from my research that there are few doctors specialist in removing this thing but I’d at least like to speak to one who knows and understands and also is sympathetic to all us ladies having problems. I do not think the doctor I am seeing will help as was told the tape was still the best way to go. How do I get them to listen to me and help me find a doctor that is specialist removal. My GP tells me I cannot be referred out with my health authority area.
    I’m so glad I found this site as I now have even more questions to ask. I naively thought removal would sort the pain etc but after reading this I know that that may not be the case and there are so may more things to be considered.
    To say that I am angry that the doc back in 2010 didn’t give me all the facts is an understatement.
    this implant quite clearly has not been tested enough especially on for long term complications. I know recommendations have been made to suspend the use of these things until further investigations are carried out but these are just recommendations and doctors are still doing see operations.
    This issue is overshadowing everything just now, I just want my doctor to help me and admit that this thing is causing my pain.
    Best wishes to you all.

    Posted by Fiona | February 4, 2015, 11:04 am
  38. Hi
    I went to see my surgeon in hereford where I live, he then transferred me to mr main who deals with the removals of the tape, I think if you see your local hospital, tgey should surley refer you to someone who can help, I am afraid iam still suffering, but mr main has agreed to perform5 a suspension but not for another 4 months. I have also started physio, so hopefully xx

    Posted by janine lowe | February 4, 2015, 2:37 pm
  39. Happy to say that my consultant listened to me and didn’t hesitate to refer me to a doctor who specialises in removal to see what if anything can be done. I got the impression that maybe, finally, some doctors are beginning to be aware that these tapes are really causing major problems and we are not to be dismissed. I know it’s going to be a long process to get, hopefully, sorted but I am just glad I’m on the right track. Good luck ladies and most importantly, don’t give up.

    Posted by Fiona | February 6, 2015, 9:10 am
  40. michelle (aka ramona dawn well done hoe you get the results you want

    Posted by RAMONA DAWN | February 6, 2015, 3:05 pm
  41. Hi Fiona
    Glad to hear you are finally getting seen by another consultant.I have had problems for many years with lots of surgery .Mr Maine in Leicester was the consultant that put 3 of my mesh in but Natallia Price in Oxford is whom I have been seeing more recently for help with some removal altho not all can be taken out and I still have lots of pain when sitting and also incontinence which I can live with now but would like to be pain free and not have to take all the strong pain killers that I do!!
    Hope you don’t have too long a wait
    Good luck
    Love Carole

    Posted by carole jarman | February 22, 2015, 6:18 pm
  42. Mr maine, has taken half if my mesh out, as miss price would not do my surgery.
    My update
    still in pain, severe inconvenience, had to finish work, as in too much pain, so now unemployed, tried to claim the new PIP, but I am too well to be able to claim, so now I dont no, more surgery may, maybe it will work xxxx

    Posted by janine lowe | February 22, 2015, 9:49 pm
  43. Oh dear am sorry to hear of your problems,I have been incontinent for a far few years now,its not nice is it ?I wonder why Natalia Price wouldn’t do your surgery but glad Mr Maine could help a bit are you local to Leicester?
    Take care XX

    Posted by carole jarman | February 24, 2015, 4:48 pm
  44. hi i had the tvt mesh in dec 2013. woke with pain in my buttock. muscle pain was blamed and then my back. Had a transvaginal ultrasound, showed partial erosion, right arm is not in right place so makes sling of centre and got an extra loop on the right hand side. seen second opinion dr and he said pulled muscle. went to oxford to see ms price, took all my paper work. sling to tight and it is bothering a nerve. partial eroded on left hand side so yep its coming out in around 4 month. thank god for that she is leaving the centre in as of chronic mixed ui prior to tvt implanted. i could cry as of the road it has taken and i do know that i have a lot more to go. good luck all

    Posted by claire | February 24, 2015, 11:19 pm
  45. Hello Ladies, Very mixed emotions this week. I thought I was getting somewhere with trying to get help but it would seem I was wrong. Found out this week that although I was being referred to the clinic in Glasgow I have no guarantee that I will see the Doctor I want and it will take months to be seen. Due to the off hand and uncaring attitude of the doctor who inserted the tape I now have a fear of Doctors so it was very important to me to see a doctor I had researched and felt comfortable with. Have a great GP who fully supports me and understands that I feel that it’s my body and need to be in charge of what treatments etc I have. I was never given any information when I had tape and just went ahead with it. I am no longer that naive! Constant and sometimes unbearable pain will do that to a person. I am sick of not getting anywhere so this week my husband and I took the decision to travel to Oxford to see Dr Natalia Price. I’m fortunate in that I have insurance through my husbands job now and they will pay but it’s still costly to fly down, stay over etc. I’m at the stage now that insurance or not I need to get some help. I’m fed up of taking antibiotics every few weeks, popping pain killers and having to take Pregablin in high doses not to mention the pain. I have now also been diagnosed with Intersistial Cystitis (IC) which causes even more pain and I am convinced this has something to do with the damn TVT. I’m hoping Dr Price can offer some help. Ideally I want it removed but from previous comments on here and lots of research I know (a) It might not be an option (b) I could end up in worse pain.
    How have any of you ladies that have had it removed been post op? And did any of you see Dr Price?
    I’m just trying to get as much information as I can so that we can make an informed decision when we are give the options if any but I guess more importantly I want to understand what is going on inside me.
    So tired of it all now. I’ve read some good things about Dr Price so I’m hopeful of getting some options now, good or bad when I see her in April.
    I’d really appreciate any input or advice from any of you ladies who has the time to reply.
    Thank you.

    Posted by Fiona | March 26, 2015, 9:59 am
  46. Hi. I had TVT 2013 woke up with buttock pain and now on crutches and the pain in my pelvis and inside me is unbelievable. I am on high dose pregamblin pain killers and oramorph. I went to see natalia price privately and been referred to nhs for op. She thinks it has eroded and is also cutting threw a nerve. So I had good news i was on the road to maybe half a life and looking forward to having a relationship with my hubby. Now another knock back had smear then had to go for a biopsy and found high grade cin 3 so had to go for more biopsies. So saw and bleeding really bad. Had uti 3 weeks ago and now another the doc in a&e said go see your gp to be permanently take antibiotic just 1 100mg each evening. Sick as a pig it’s never ending. Scared of being knocked back for op if this biopsy comes back I have cervical cancer. This mesh should be banned. And if any1 knows that after tape is out the pain is worse as can’t cope now. Xxx good luck ladies xx

    Posted by Claire | March 26, 2015, 10:34 am
  47. Hi Claire. My heart really goes out to you, what a hellish time of it you are having. I so hope the results of the biopsy are in your favour. This whole TVT thing is soul destroying, for me, aside from the pain and the permanent brain fog from the Pregablin, the most distressing thing is the effect it has on my relationship with my husband. He is amazing and so understanding but it hurts me so much emotionally that it’s affecting our relationship. Find it hard to believe that just last month a senior consultant in gynae told me that the TVT a is still the best thing for women. This thing has to be banned.
    Good luck to you Claire, take care x

    Posted by Fiona | March 26, 2015, 1:28 pm
  48. Hello again,
    Hugs to the most recent posters an hope you get the help you need. It is so hard living with constant pain, you remain in my thoughts…
    My daughter had a partial tape removal 2 weeks ago (in London under Ms Greenwell who has done about 40 such operations!!) The tape had eroded into her vagina, and had calcified too.
    Ms Greenwell also did a Martius fat pad procedure to help support the urethra which may just be enough without the need for another suspension operation. That still carries the risk of being put in too tight.
    Still to early to tell how much leakage will remain, but as so many of you say, a little bit of leakage is easier to live with by comparison than with all the other symptoms and pain from the tape itself and the infections caused by erosion.
    Carole, I hope you get some more answers about the pain you are in, does Natalia think taking out more of the sling will help with that?
    Take care everyone
    Caro x

    Posted by Caroline Andrew | March 28, 2015, 1:01 pm
  49. Hi haven’t been on the site for a while ,sorry !!Natalia said at my post op appointment on 30th March that all my tape is now out and that there is not much else to be done for this blasted pain as it may be scar tissue but no one really knows.So I am still taking Gabapentin 900mgs 3 times a day plus Tramadol when things get too bad,am so so sick of this pain and soreness when I sit and it is not an easy thing to talk about
    Fiona I do hope you have now seen Natalia and that she is able to help you? please let us know.I know what you mean about the “brain fog” as I am permanently in that state,its been about 3 years now!!
    Claire am so sorry to hear of your problems and am sending you hugs and so hope your news will be good.Life can be a buuger cant it?
    Carole xxxx

    Posted by carole jarman | April 10, 2015, 5:52 pm
  50. Hi Carole
    I’m so sorry to hear you are still in so much pain, it’s trully awful to waken up each day knowing it’s going to be filled with pain.
    I have just returned from seeing Dr Price in Oxford. Finally a Dr that was able to tell me what exactly is wrong. The relief of knowing was a bit overwhelming to say the least. I was told that it was not a case of if I was to have it removed but that I had to have it removed as it will only get worse as the tape has made its way into my vagina and the constant pain is from inflammation at the anchor site. This would be why my samples keep coming back with unclear results, that and the fact that I have now got IC. She told me that, in my case, the advantages outweigh the risks. I was glad she phrased it that way as up until then I was unsure if I would go ahead with removal knowing that some ladies like yourself are still in so much pain.
    My operation will be done 2nd week in May and quite honestly I cannot wait. Dr Price showed me a tape, is it any wonder that we have been left in such pain. It looks like a bit of packing tape! what the hell were they thinking of using something like that? The consultant I saw last year for help spent ages telling me how good they were which was unbelievable. Unfortunately up here in Scotland there doesn’t seem to be much help for us unless you live in the central belt. GPs have been given no guidance about what to do if someone presents with this problem, as confirmed by my own GP.
    I’m now feeling hopeful and also apprehensive about the operation. I don’t have much faith in doctors except my GP but I have to say that after seeing Dr Price I feel that I may just have found a Dr who will restore my faith.
    Still a long road ahead which may well be rocky but I have to get this packing tape out of me.
    I wish you luck Carole. I hope some day the pain will lessen for you.
    And to Claire, big hugs.
    Fiona x

    Posted by Fiona | April 13, 2015, 11:37 am
  51. Hi. Fiona really glad you got your date for removal and finally hopefully be out of some pain.
    I have had another muck up from my GP she referred me to natalia clinic and not for op so may have a longer wait. I don’t know and not very hopeful now. I seen natalia in clinic in jr on Wednesday and she will take the mesh out but not hopeful of being free of pain as it has played havock with my nerve from opening my eyes the day it was implanted and the pain underneath I feel like I got a saw but nurse says there nothing there but I know there is.
    Just fed up as not allowed to drive as of the electric shocks from my buttock down my leg and across my back so stuck in all day Good luck to all the ladies xxxxx

    Posted by Claire | April 13, 2015, 1:20 pm
  52. ramona dawn good luck to you I hope you get the best results possible

    Posted by RAMONA DAWN | April 13, 2015, 1:55 pm
  53. Hi Fiona
    Am so glad your are being helped by Natalia she is a lovely lady and the nurses on the gynae ward are great,you will be fine.I have had multiple surgery involving mesh in the past so no one really knows where my pain is coming from and the more involved TVT O is not something Natalia does.Any way I can only hope that some day soon my body will start to heal itself.
    Claire.Do you have a date for your removal yet?Poor you ,you are suffering so much and not being able to drive must be awful.Lets just hope that you get a littlr relirf when the tape is out.Do you take Gabapentin or such like for your nerve pain?
    Hugs to you all
    Love Carole

    Posted by carole jarman | April 19, 2015, 5:51 pm
  54. Hi Carole I am on pregabalin 200 mg and putting it up monthly as the gabapentin did not agree with me as they put it up to 900mg 3 * daily so not got any were close to the pain with them. Codydamol and morphine to help with pain. I don’t know when my op is probably June or July hoping sooner. I hate not being able to drive as live on a farm so not really walking distance to the shops or supermarket. And to expensive for a taxi.
    I hope you are feeling some were close to normal soon and everything is a success. Xxx l&p claire

    Posted by Claire | April 19, 2015, 6:18 pm
  55. Hi Claire
    Do hope you don’t have to wait to long for your surgery ,no one other than another “sufferer” can understand what you go thro,and the subject is not that easy to talk about is it? Do you have folk that pop in and see you on the farm,what part of the UK do you live in?
    I am taking Gabapentin 300mgs 3 times a day and like you find it doesn’t do a lot for my pain ,I did try Pregabalin but as I didn’t find it much different and it is quite costly I opted to go back on Gabapentin—I am a retired nurse so know all about GPs budgets!!—
    Take care and try to keep smiling.You can chat with me any time
    Hugs Carole xx

    Posted by carole jarman | April 21, 2015, 5:51 pm
  56. I am just starting to believe the horrible truth of my self diagnosis. With the very recent aid of ‘Dr Google’ and sites like yours I am starting to piece together an answer to my symptoms.
    After quite a few leaky years I trotted along to my GP (long two year story cut short) and in 2012 I had a TVT inserted. The first few months were fine but then I started to get urine infections, one after the other. My bladder appeared to have gone mental and I had blood in my urine which my GP puzzled over for about 2 seconds and shrugged it off. The infections/irritation eased off over the months but on a five day work visit to Spain in 2013 my ankles swelled up and I had really bad back and hip pain. I had bouts of this over the next year. In the summer of 2014 the pain shifted around my hips, there was an immense feeling of pressure in my groin, my legs ached, my back hurt, I thought I was falling to bits. After the summer holidays I lasted a week at work, I was signed of with ‘hip pain’ and my GP referred me to orthopaedics where the consultant swiftly shoved some steroids in as I could hardly stand up. Our wonderful NHS gave me a follow-up appt in 3months. The first consultant shrugged and I was passed to another this April who told me at my age I should expect a ‘few aches and pains’. I am 52, was a size 10, fit, walked for miles, swam, worked with small children and generally enjoyed my life. I am now a ravaged husk who spends her life gobbling tramadol.
    The consultant said that I had no osteoarthritis so it was probably something like soft tissue damage and they would do a hip replacement anyway!
    Some days I cannot stand up. The pain in my groin, hips, legs drags me down and, and, yes, you’ve guessed, the symptoms of leakiness are more leaky than ever.
    So, last week, after being patted on the hand again, I was pumped full of steroids under anaesthetic with the promise of some sort of diagnosis, I found I was back to square one. No relief, no diagnosis and a bloody appointment plopping through the letterbox for August 2014.
    None of it made sense.

    Then.

    Then I found you. And other sites like yours and I found that my brain is not as addled as I think because all of this makes sense to me.

    Yesterday I saw a GP. I was careful not to tell him that I was researching with Dr Google but have persuaded him that at the very least my continuing leaky bladder should be investigated. He did state that there maybe no connection with my pain and my bladder problems because he had done these operations.
    I won’t tell you what was going through my head but I smiled. In the meantime I have a plan. I will try and resolve this through the NHS but will try and contact this lady that you are all talking about in Oxford.

    Thanks to all of you for writing this and letting me find you – I have a bit of hope now.

    Posted by Kate Bousfield | May 12, 2015, 10:18 am
  57. Hi Kate. I am so glad you are getting sorted. My left ankle swells all the time and yesterday morning I woke up to my right leg all swollen and purple I have been referred to vascular consultant emergency. my leg has gone down and back to normal colour but I have a lot of pins and needles like feeling in my leg. I was always fobbed of by gps and doctors and I went private for a translibial scan and then on to Natalia who is lovely. I am awaiting removal of the arms and then hope to be feeling a bit better after that. I do hope you get sorted soon and get some of your life back. L&b

    Posted by Claire | May 12, 2015, 10:38 am
  58. Hi Claire, I am still reeling from all this information. Two days ago I was still reading and re-reading about hip complaints etc. I had no idea, and had made no connection, to the fact it could be the TVT. It still might not be but I can feel all of you nodding sagely and saying “yeah, we thought that”.
    I have spent the whole morning reading and have told some of my friends what I think. Two of my friends had the same procedure at about the same time as me. We referred to ourselves as ‘the p**s your pants club’. Out of the 3 of us, 3 of us have problems – me, unable to walk and them with troubled and prolonged weeing. Umm, statistically that means something quite bad, doesn’t it? 3 out of 3 ain’t good.

    I live in Cornwall – is there anyone else who is close and if so did you manage to avoid death at Treliske?

    Posted by Kate Bousfield | May 12, 2015, 12:28 pm
  59. To i travelled 5hrs to see mr mayne,as we have moved,he removed my sling niv last year, he was the onlybperson who would do this.
    today he has decided to transfer me yo Newcastle hospital under karen brown,wich will be easier for travel etc, i need to have a suspension done, to try and help with the incontinence, the pain is not as bad, but he also said he only moved the left hand side, but could not get to the right hand side tape, so thats staying in, has anyone else seen karen brown ? Hopefully she’s as good as mr mayne

    Posted by Janine Lowe | May 12, 2015, 7:26 pm
  60. Hi Kate unfortunately I live co Durham North East so I don’t know doctors in Cornwall. I travelled 450 miles to see miss Natalia price as the consultant who implanted the mesh said to me and in a letter to my GP there is no nerves were the TVT sling is unlike the tot, which was wrong information as to Mr Google and I emailed consultants asking them ?s about it all. I also joined a group called messed up mesh which has learned me so much and they say what is happening in parliament and the House of Commons. They help with ?s and answers. I read threw this group but no1 knows what you are going threw until u go threw it. I listened to my gut and I was right and because mine is nerve problems then it could be me for life. I to was active ran a stood yard, competed, jumped in shows against my children and laughed with them cried with them. Now I cannot even get on a horse never mind care for it. My hubby works all the hours God sends to keep the farm going. I was forced to sell a lot of horses as I couldn’t do job so they couldn’t do there’s. I told my GP if I left one of my horses, chickens or dogs in the pain I am left in I would be in prison so why are u allowed to do it to me. It’s wrong what we are left with with no1 that believes us. L&p xxxx

    Posted by Claire | May 12, 2015, 7:41 pm
  61. Dear Kate, All the very best, sounds like you are on the right track! Xxx

    Posted by Carp | May 12, 2015, 9:17 pm
  62. Hi Ladies

    Happy to say I am now 10 days past removal. Dr Natalia Price and her team were amazing. It would seem that the mash had eroded into my vagina and all was a bit of a mess. Thankfully it had not eroded into my bladder which was my biggest fear. On recovery I was told that my surgery took a good bit longer than was anticipated due to the fact that it was discovered the tape had been incorrectly situated on one side. This explains why I was in such terrible pain on one side of my abdomen. Dr Price even took the time between my surgery and the next to visit with my husband and explain why I’d not been taken back to the room at the time expected. This truly is a sign of a Doctor who cares. She shows kindness, compassion, professionalism and most importantly for all of us suffering, an understanding of what we are experiencing. I woke up in recovery and started smiling, I couldn’t have cared how sore I was because that hellish thing was gone!!
    I’m still very sore but it’s post op pain mainly. The ‘cheese wire’ pain in the groin is gone as are the spasms, leg pain, back pain and many of the other things you will all know about. The incontinence is marginally worse but I’m working on physio for that as I get stronger. Strangely I feel different in myself. I can’t quite put my finger on what it is but I believe it has to do with that horrible toxic thing being removed from my body. My itchy, dry, scaly skin is gone and is now so smooth. I’d had this on my abdomen, thighs and back since the tape was inserted. I’m still on a lot of meds and with time I hope to stop taking them.
    It was worth travelling almost 600 miles to have the operation done by a wonderful Doctor that I will remain ever grateful to.
    There’s still a long way to go and it won’t all be plain sailing but I’m so happy I made the decision.
    To you all, good luck and ladies don’t give up. Keep pushing to get our GPs to understand what is happening to ladies with this awful mesh.
    I’m very grateful to you all on this blog, I didn’t feel so alone and I have picked up so much information and advice especially for being post removal….so Thank you and lots of love xx

    Posted by Fiona | May 19, 2015, 10:11 am
  63. Get well soon thats great news hopefully you have a speedy recoveryits great to hear some good news i wish my gp was as understanding as yours. take care xx

    Posted by michelle (aka ramona dawn) | May 19, 2015, 2:18 pm
  64. Hello everybody – I am a journalist who has also had the TVT operation (March 2015) with terrible consequences. I am having it removed by Natalia Price at John Radcliffe in Oxford in August or September – waiting for my op date…

    I am currently preparing a media release urging English Parliament to suspend this operation as it was by Scottish Parliament in June 2014. I also want a National Register of mesh incidents and I want UK Government to toughen up the laws on how new medical devices are passed – that goes for all devices such as hip implants cochlea implants and of course the TVT mesh sling – currently is is quite simply too easy for pharmaceutical companies to get new devices passed without strict testing.

    I am putting my story out as a case study but am looking for other women who are happy to tell their story to the press to be additional case studies – either named (preferably) or anonymous. If you would like to help get this operation suspended and are happy to help do please email me on evolutionphotos@yahoo.co.uk or add me on Facebook Kath Sansom – Im the one with brown hair and a cover photo of reggae colours! Many thanks for your help

    Thankyou

    Kath
    x

    PS Anything I write for your case study will be emailed to you for approval before doing anything with it

    Posted by Kath Sansom | May 20, 2015, 7:21 am
  65. I’m terrified!!! I had TVT done 4 weeks 2 days ago. For the first 2 weeks I had what I can only describe as slicing pain radiating from the left side pubic wound. I went back to the Spire twice but was told it was normal for some women to have pain afterwards. I couldn’t walk without this pain. Around 2 weeks this subsided and by the time I saw consultant a few days later it was fine so he discharged me as he said I was healing well and the op was successful. I have no leaking and can urinate fine. A week later my right thigh started to go numb and I was getting shooting pains down my leg. This has now developed into burning skin, tingling and pins & needles. Numbness had spread to my groin today and the side of my foot is numb and has pins & needles too. I can still urinate fine. I’ve been to docs twice over last 10 days and was told it was sciatica and been given nefopam and naproxen in addition to my normal meds for fibromyalgia which are pregablin, paracetamol and amytriptiline. The shooting pains have dulled a little but I can still feel everything. I’ve got another appt this afternoon and want to know from you ladies if this could be down to my TVT op??? Help?

    Posted by gorillasbegone | May 21, 2015, 11:59 am
  66. I have no medical insurances to fall back on. I am going to try and get a private translibial scan but can anyone give me some idea of cost? And for that matter how much Natalia Price or anyone else charges. I am just an ordinary person with a very ordinary life and a very ordinary bank account! I am still on the list to see an orthopaedic consultant next month. They haven’t found anything so far and are confused by the amount of debilitating pain I have in my groin. I feel it’s time to look further afield but the NHS are so slow. I just need a diagnosis to stop me going mad.

    Posted by Kate Bousfield | May 21, 2015, 12:54 pm
  67. Hi i am so sorry it’s not worked out for you. I have the same burning in my buttock on the right and a electric shock pain down my leg I went and had a private scan which cost £271.00 an then went to Natalia which cost £200.00. My advice is to just go straight to Natalia manor hospital Nuffield Oxford I hope you get answers xxx

    Posted by Claire | May 21, 2015, 2:35 pm
  68. Hi Kate I agree with Claire as I to went straight to see Natalia at the private hospital in Oxford If you phone her secretary you should get an appointment within a couple of weeks.Natalias bill was £200 which is money well spent.See her first and good luck

    Posted by carole jarman | May 21, 2015, 3:22 pm
  69. Thank you both so much. If it turns out not to be the TVT I feel like I want to campaign for all you wonderful women who are supporting each other. I have completely lost faith in the NHS about anything. Three days ago I fell over and was in so much pain I couldn’t move. The ambulance crew were wonderful but the staff at A&E patted me on the head, gave me two tramadol and sent me home! Jeez, if I was a dog you’d have put me down! Thanks again – you all give me strength to find answers xxxx

    Posted by Kate Bousfield | May 21, 2015, 4:50 pm
  70. Every time I go to a&e I ask if they have ever heard of the mesh and complications and when they say no I just say how can you care for me if you don’t know about me. So if it is the tape get use to the pat on the head. I hope you get sorted soon. But there is a 3 half month waiting list from your GP referral. L&p xxx

    Posted by Claire | May 21, 2015, 5:19 pm
  71. Claire, I am presuming you mean it will be a three month wait to see an NHS gyny consultant after getting a diagnosis from Natalia Price? I have already started this process by asking my GP to refer me back to the consultant because my stress incontinence is as bad as it was before the TVT was put in 3 years ago. He reluctantly agreed. He told me that he didn’t think my chronic groin pain was connected with the TVT because he himself had done a number of these operations. I nearly slapped him and wanted to say “I suppose you have also removed some of them as well?”
    I nearly lost my life many years ago to a doctor not listening to what I said. I had a nine week ectopic pregnancy that was killing me so I know all about fighting for what you believe in.
    Btw here’s a little trick I learned called jumping the queue. Wait until you know a letter has gone off to the consulting team then ring your GP for the details and ask for their secretary’s email. If you write a humble letter (with a few pleas thrown in) and a request for a quicker apt or cancellation due to your mental state/pain levels etc then I usually find a magical apt arrives quicker than expected!

    Posted by Kate Bousfield | May 21, 2015, 6:40 pm
  72. Hi Kate. The procedure is you make an appointment with Natalia private secretary which costs £200.00. Then you GP refers you to john Radcliffe hospital nhs for your operation, which has a 3 half month waiting list. I to have had an eptopic emergency operation after I collapsed in the street while I had my 2 year old daughter. I don’t intend to try and que jump as there are a lot of ladies which suffer the same as me and you. I have been advised to ring Natalia secretary on here as I had a very bad couple days of which put me in a chair, my leg swelled and I have now have constant pins and needles in my foot and it is constantly like a block of ice a&e said it was the nerve after they done tests and I emailed the secretary but not rang lol as there is someone worse than me out there. I hope everyone a successful recovery. L&p xxx

    Posted by Claire | May 22, 2015, 5:45 am
  73. Claire, you got me wrong here. I wouldn’t try to queue jump if I was diagnosed and waiting for the final operation, not at all. I started with symptoms two years ago. I have been given follow-up appointments with orthopaedics every three months. I have been trying to get quicker appts because I have been off work for 9 months, about to lose my job and nearly broke. It is only my partner who keeps me going. I can barely walk for the pain and none of the drugs work. My blood pressure is very high but no one knows what is wrong. I am about as low as you can get.

    Posted by Kate Bousfield | May 22, 2015, 7:42 am
  74. I think this queue jumping business is wrong, just my opinion, we are all in the same boat and all need help, it took me nearly a year to get sorted,seeing different surgeons, until i found one who would remove my mesh, and now waiting again to see a new surgeon after moving, i also need more surgery but would never dream of trying to jump the queue, you could be taking aappt off someone who is worse than yourself
    hope i dont offend anyone

    Posted by Janine Lowe | May 22, 2015, 8:35 am
  75. I also disagree with queue jumping as like I said there is always someone worse than yourself. Like everyone on this site they have seen multiple consultants who have never known what was wrong with them. Most of us have sought private help then transferred to nhs for operations and all waited our turn. I myself don’t even like taking up an appointment at the GP as she don’t know about my operation so I get telephone appointments. I don’t like going to a&e as they not got a clue apart from 1 doctor who who I am
    Not garranteed to see. Every body is in the same boat and all started researching the same way with Google. L&p claire

    Posted by Claire | May 22, 2015, 9:12 am
  76. Oh dear, I seem to have upset a few people and I am very sorry. To term it queue jumping is not strictly true, all I have done is email a secretary to ask for any cancellation appointments even to take one on the day of cancellation. When a secretary rang me one day with an appointment she told me that she would be glad if more people put themselves on the emergency cancellation list as the consultants time was wasted otherwise. I suppose there is two ways of looking at this.
    I am sorry again if I have annoyed or upset some people but shouldn’t we all be annoyed and upset. Many of us are still waiting for a diagnosis after two years of being in constant pain. I am determined to stay angry in order to get something done. Orthopaedics have just injected steroids and told me I don’t have arthritis but too much pain for a labral tear. My next apt was going to be in Aug but I have a cancelled apt now for next month. In the meantime I have just rung my GP to find out what gyny team my referral letter went to. Bearing in mind that the GP I saw didn’t believe a word I said about TVT, the pain and the return of my incontinence possibly being connected, I find that the letter has been marked ‘not urgent’ and hasn’t been sent yet. I am hanging on by my fingernails here and if I am not angry and trying to do something then I am nearly drowning in my own tears. Please don’t judge me for trying to get myself diagnosed. I am off now to get my blood pressure checked again, which is extremely high, and some cream for my itchy legs and the rash on my chest, oh, and some more anti-depressants. Whatever is wrong with us we are all trying to find answers and we should start getting angry with an NHS system that we are funding.

    Posted by Kate Bousfield | May 22, 2015, 10:24 am
  77. Hi we all take a cancellation appointment which is not queue jumping. Most of if not all know what you feel like having a GP that dosnt believe you. My consultant wrote to my GP telling her that she has reassured me that there is no nerve there and it is not the tape that is causing my pain. I had no change then as my GP was always going to believe a consultant over me. So I had to be my own doctor ad nurse. Luckily I did have a pain doctor who believed me and helped me get advice and support me in my research. Xxx

    Posted by Claire | May 22, 2015, 10:44 am
  78. Thank you, Claire, I didn’t want to alienate people when I have just found a group of women who make sense to me.
    Does anyone else suffer from high blood pressure. Is it related or just a symptom of the stress of being un-diagnosed? I am average weight, non-smoker, non-drinker (imagine the mess of alcohol and tramadol?)and never suffered with it before.

    Posted by Kate Bousfield | May 22, 2015, 12:57 pm
  79. Hi gorillas begone
    Sorry to hear your story and that you are having so many problems. It could be down your TVT but who knows? You certainly need answers. There seems to be a time connection with your problems and the surgery for sure. Go back and press for answers. Don’t wait for it to ‘settle’.

    Posted by tvtinfo | May 22, 2015, 4:55 pm
  80. I cant answer the high blood pressure as mine has always been slightly low but when the pain is really intense to stop me getting out of bed it goes very very low so could be a bit of stress and your body coping with the amount of pain you are in. I hope you get sorted soon and finally diagnosed l&p claire

    Posted by Claire | May 22, 2015, 7:58 pm
  81. Hi Kate
    I to hope you get things sorted out fairly soon but not to put a dampener on your hopes I will just say that I went into the John Radcliffe under Natalia Price last Oct hoping I would be free of the pain on sitting that has been the bane of my life for 3 years but sadly it has not been so !!!She removed what was left of the TVT mesh that I had had cut in 2006 but as the pain remains she feels this is either caused by the “deeper”mesh I still have in situ having had 3 other repairs carried out in the late 90s /early 2000—and which she is unable to do any more surgery for—-or indeed scar tissue. I still take 900mgs Gabapentin 3 times a day and the occasional Tramadol when things get bad.I had hoped to enjoy my retirement from nursing but it seems its not to happen and my dear long suffering hubby must have forgotten what sex is like by now!!!I have had urge incontinence for many years now and get quite cross when I remember that that’s what sent me in search of specialist help in the first place!!Soooo wish I had never bothered

    Posted by carole jarman | May 31, 2015, 3:05 pm
  82. I have seen the third urologist in the last three months today for some guidance on what my options are. I had TOT insertion and a posterior vaginal wall repair in 2007. For the last 12 months have experienced pelvic pain, thigh pain frequent urinary tract infections. The pain is made worse when I sit. After having three cystoscopys , urodynamics x2, CT, MRI and Ultrasounds my current consultation, who is female and at least empathic, has told me I have an obstructed urethral outlet, interstitial cystitis and a dis functional pelvic floor. She believes the outlet obstruction is due to tapes being too taught and causing irritation to the urethra. She has seen and treated women who have had similar issues following tape insertion and has found carrying out a urethrolysis ( separating the tape that is around the urethra) and freeing the urethra from surrounding tissue to be effective in relieving symptoms and reducing the frequency of infections. I told her that I had read that dividing the tapes may create more problems in the long term if they then coil up as no longer under tension and she stated that in her experience this had not occurred. She has told me that my symptoms won’t get better and will in fact get worse as time goes on. I just don’t know what to do and who to trust now. I know that I cannot go on like this but am afraid of having more surgery that may make things worse. Does anyone have any experience with the procedure Urethrolysis. Thanking you Andrea

    Posted by Andrea Donaldson | June 4, 2015, 7:37 am
  83. Forgot to mention I am now living in Australia although had initial repair done in the UK.

    Posted by Andrea | June 4, 2015, 7:38 am
  84. Oh dear Andrea,what a mess we get ourselves into when we first get into trying to sort out our pelvic floors!!!I have had a colposuspension a sacrocolpopexy and an apogee all since 2000 when I had a hysterectomy and removal of ovaries and tubes I have more incontinence than ever now and this constant pain when sitting I am not inclined to look for further surgery as I am sooo afraid things will be made worse!!!I have to learn to live with fairly ineffective pain relief and not sit down for too long.What ever you decide to do I do wish you luck,am afraid I don’t know of any one having had a urethrolysis but mahbe TVTInfo will have
    Good luck Hugs Carole

    Posted by carole jarman | June 4, 2015, 5:42 pm
  85. My name is Emma and i have had tvt op 10yrs ago. i developed a rash across my trunk 3 weeks after the op which was diagnosed as rem syndrome 7YEARS later. this is an autoimmune disease which has given me all sorts of complications . now i have neuropathy (numbness and tingling ,loss of feeling in my legs and incontinence both ends) i cannot drive, and have a neurologist who insists my issues are to do with my brain. after an mri in walton on my brain it is apparent i do NOT have any brain issues. i have been told to ask my gp for a referal to miss sophia of uclh . im 45 and live on amglsey in north wales. i am petrified abt the damage this may have done to my nerves,bowel and bladdet and fear i will b fobbed off by my gp as i have been for the last 10yrs i have felt so ill and now have incontinence and funny electric like tinglings in my anus and pubic bone. i just dont know IF i will b able to get this sorted even if i can manage to get a refferal in the first place!! im VERY scared i may lose the use of my legs altogether and if ill EVER feel normal again. if YOU are contemplating this surgery i BEG you DONT DO IT.

    Emma Ashby.

    Posted by Emma Ashby | September 8, 2015, 1:37 pm
  86. Hi emma if i were you i would go back to your gp and insist he reffer you or contact the hospital you had it done in and ask to speak to your consultant i know what your going through i am waiting to have tvt-o removed after it has been done wrong after 5 years of telling them something was wrong final tests found it has been done wrong and put in the wrong place. Fight all the way to be seen ask for video dynamics to be done hope this helps so sorry you are going through this kep in touch and let us know how you get on ok..Ramona Dawn (michelle )

    Posted by michelle (aka ramona dawn) | September 8, 2015, 2:04 pm
  87. thankyou sweetheart. i just want it removed full stop. i havent had more than 4 weeks in the last 10yrs without a uti, my body in my humble opinion has been rejecting the mesh from week 3 of insertion. its disgraceful . ive been so poorly for so long its normal if u know what i mean?. i am going to INSIST i get a referal to miss sally or sophia el-neil. how the hell im going to get there i dont know but i cant take any more of the distress its caused me. no family or friends for support as i havent been out in nearly 10yrs for fear of voiding myself. I wish you the very best of luck and so well done for recognising ur problems in half the time its taken me.

    Emma

    Posted by Emma Ashby | September 8, 2015, 2:13 pm
  88. i notice there are not many people on this site. is it still used or are there other sites or have ppl all just been fixed???

    Posted by Emma Ashby | September 9, 2015, 6:18 am
  89. hi Emma poor you i feel for you and know what your going through but you hang in there i have had the run around from my consultant for nearly five years so take someone with you dont be fobbed off tell them what you want.. dont let them tell you stand your ground be firm and insist you will get there i am just waiting for word to go in for my operation to have mine removed but they say they can only remove the largest portion of it and then use my own tissue to re do it because i told them they wont be using mesh again but as far as i am led to believe it is banned now well i hope it is as they offered to do mine again so i dont know if it is still being done or not.
    let me know how you get on ok michelle (aka ramona dawn)

    Posted by michelle (aka ramona dawn) | September 9, 2015, 1:54 pm
  90. Hi Emma if I can give you any advice it is not to give up. Gps do not have a clue about this issue. Do your research which I am sure you have, print it out and present it to them. I am 4 months post removal, its been hell but its been worth it. That evil tape is now gone. Yes the incontinence has come back but I can deal with that. I couldn’t walk properly, had constant brain fog which actually cleared a bit after removal the rest of the fog was due to medication for nerve damage. Like you I had the horrible rash all around my torso and I scratched it so much it bled all the time. The pain was hell absolutely no quality of life.Removal was pretty awful but knowing it was gone kept me going. Im still in pain but that is due to reduced mobility in my joints and ligaments and the fact that the tape was originally put in wrongly. This was discovered during the operation and my muscle is badly damaged and very painful where the person that called herself a consultant placed the tape. To say that I am angry and bitter is an understatement and my heart just went out to you last night when I saw your post. This discussion page helped me so much when I was trying to get help. I didn’t feel so alone when I read other ladies stories but it also felt as if the pieces of a puzzle fell in to place when I read some of the problems ladies have been having. As Michelle says ‘stand your ground’. I know there are many days where you just want to curl up and cry and give up, punch walls and howl at the moon and its ok to do that too but, sweetie, do not give up. If there is no specialist in your health area for this issue then they are obliged to refer you to where there is a specialist. Getting them to admit it is the tape is the hard part but when you present them with what you have found they cannot deny it. I was fed up feeling like a hypocondriac, constantly feeling I was wasting the doctors time and that it was all in my mind when all the time my body was rejecting the tape and the tape was cutting me like a cheese wire. This site helped so much. You will come up against brick walls and doctors who just don’t care. I had one arrogant male consultant that told me the tape was just the best invention for women and he wanted to put another one in with no word of removal……………..I promptly left his office before I punched him. I so hope you get some help, it breaks my heart to hear your story and I will keep thinking about you and hoping you find someone to listen and to help you. sending you big hugs Fiona xx

    Posted by Fiona | September 9, 2015, 4:33 pm
  91. omg Michelle!!- you are so brave getting it sorted!!- im on gabapentin which like you say brain fogs u!! – i think i have been rejecting the tape from the start!! had me on immunosupressants to stop my symtoms!! they r 4 ppl that have TRANSPLANTS for organs fgs!!! ive just got in touch with a solicitor today cos im DONE with all the bs these consultants feed you. its sickening!! ive got skin issues my hair has been falling out the works! 1thing after another n now mobility going??- they can DO one!!- i WILL NOT LET THIS GO – now the penny has dropped,im like a yorkshire terrier with a rat!! seeing neurologist am tomoz and hes going to tell me after brain mri theres NOTHING wrong with my brain – theres a surprise!! he also poo pooed me when i mentioned tvt so u r right its getting them to admit its that now!!- going to ask for a scan i think. they have already noted that my bladder is NOT emptying properly utis every other WEEK- im sickened by it all but u telling me how much better u r is giving me a lot of hope. i really really appreciate ur story n am soooo glad u r on the mend hun!! thankyou for sharing

    Posted by Emma Ashby | September 9, 2015, 7:50 pm
  92. sorry FIONA i meant!!- brain fog!!

    Posted by Emma Ashby | September 9, 2015, 7:51 pm
  93. thankyou too Michelle and i look forward to hearing abt ur life AFTER u have it removed!! very good luck i hope to be where you are 1 day we shall keep each other posted eh??- u and fiona have given me the confidence to fight this all the way!! xxx to u both!!!

    Posted by Emma Ashby | September 9, 2015, 8:12 pm
  94. Hi Emma, it’s so hard to find the strength to fight this but I think you just found it and I’m so glad. I was told that a scan won’t always show the tape due to the make up of the tape so if they come back and say they cannot find anything keep fighting. my tape was protruding into my vagina and was discovered when I was examined properly. I’d previously been examined by the doc that wanted to put in another tape and he just said it was maybe loose. Recently I was at the hospital for my physiotherapy to help my joint and muscle pain and I saw leaflets in the waiting room for the tvt. I brought it to the attention of my physiotherapist and she took them to her boss to have them removed. Apparently they had been put there by mistake as they looked like a similar pamphlet. I cannot tell you how seeing these in the waiting room affected me. I received an apology from the hospital as they had stopped using the tapes a few months ago. Angry, upset, bitter and many other emotions over that one. Keep fighting girl! I’m glad you are going to see a lawyer. I have too as there are some group actions going to court all over the country on this issue. Some days I feel as if I’ve been to the gates of hell and back but I have no option but to go on. Even now after removal I still have bad days and when I read stories like yours I get so angry. I’ve lost time that I will never get back and I’ve shed so many tears I could float the titanic. People ask me what’s been wrong, it’s hard to try and explain what’s happened when they don’t understand that’s why this page helped me so much. I just hope you get a doctor that understands, the relief you will feel that day is indescribable. I told my husband I felt vindicated, he’s been amazing but until the doctor told him exactly what she’d found I think he questioned all the different ailments I had. Please let us know how you get on, remember you are not alone. Look after yourself and do not give up! Xxxx

    Posted by Fiona | September 9, 2015, 8:45 pm
  95. What a lovely reply.
    My daughter had part of her TVT sling removed as it eroded into her vagina, causing pain and infection. She is now hoping for the operation, which in hind sight she should have had originally, using part of her own muscle tissue as a sling for the neck of her bladder damaged by radiotherapy.
    Fingers crossed.
    TVT slings are often not the quick fix they’re designed to be. It put my dayghter through another tough couple of years.
    You are not alone and this site provides huge support. Thanks to all you ladies out there. Xx

    Posted by Caro | September 9, 2015, 9:54 pm
  96. Fiona – i cannot believe the amount of us women that are having to fight this on a daily basis. i had no choice but to put my 10yr old into care 2yrs ago as my family all think im mad and deserted me yrs ago bcause im a ‘hypocondriac’ and i just physically could NOT care for her. my partner walked because im ‘mental’ i have asked and asked about this tape over the last ten yrs and after finding this site i am absolutely STEAMING mad!. you are soo lucky they found it and that u have understanding partner Fiona. I was told to get a scan privately then get refferel to sophia el neil ruchl?? – but now u have mentioned that yours was NOT picked up on a scan im not sure what to do. I think gp first armed with info. My incontinence is back with a vengence anyway so i really dont care if i come out of this incontinent i just want all the side effects ive suffered over the last 10yrs to go away. feeling ill and crawling around day after day. NO MORE. Im calling my gp out for a home visit THIS morning and i will insist they listen. giving me drug after drug to quell all these problems without even INVESTIGATING the cause!!- IM hopping mad abt it!!! never mind the effect on my 12yr old. i put her in care at 10. i see her regularly but shes never forgiven me for it and now i know the reasons ive been so poorly i will NEVER forgive the nhs for promoting this op or forget. I will get my daughter back as soon as i can physically do it but i need to get my gp to help first. this is going to be an uphill struggle but im ready. i can take no more of these medical so called professionals apathy. You have been through the mill Fiona and 1 day you will NOT have a bad day. it will be a faded drama that took the stuffing out of you but is no longer in your thoughts even. It will happen.time Fiona. I know its short but you got there my girl!!! my turn now. xxxx

    Posted by Emma Ashby | September 10, 2015, 3:23 am
  97. Emma, I cannot believe or begin to understand the hell you have been through and are still going through. I’m a mum too and it’s hurt so much not being able to do the things I wanted to do because of the pain. I was fortunate enough to be able to use my husbands work medical insurance to finally get help after months of being given the run around. I saw Dr Natalia Price in Oxford. I will be grateful to that very special lady until I draw my last breath. I do know from some of the previous comments on this page that you could call and get a private referral to see her in Oxford and after that I think some ladies were then put onto the nhs list for her to do the removal not quite sure how that works but she will tell you the truth and will listen and really does understand. I have heard very good things about Dr elniel?? too. during all my research they were the two doctors most people spoke about. I had to travel from Scotland to have the op done, I was so desperate for help. I hope your scan will show something. It’s so disheartening to go for tests and then be told they can’t find anything. I had what felt like constant UTIs and each time the tests came back negative for infection. I was eventually told that I could have intersistal cystitis as my bladder really wasn’t happy. We discovered that I was very inflamed and slightly infected down below and that was causing some of the problems. Every one has different symptoms and the list just seems to go on and on. Doctors do not want to admit it’s the tape causing the problems. I asked my GP if they had been given any guidance on what to do if a woman presented with this issue and she said they hadn’t yet a petition to ban this has been lodged with the Scottish Parliament. a recommendation was made by govt to health boards to suspend use until there is some type of enquiry, yet the GPs have not been told very much. My GP has been great but I think even she doubted some of it until she saw the report from Dr Price. It’s a long and rocky road but given what you have lost I think it will make you even more determined to get sorted. some people are only able to have part of it removed some it’s a complete removal. Everyone is different but it does help seeing blogs like this. It helped me so much, I realised I wasn’t going mad. I still get very upset when I read stories like yours or see anything in the press about it knowing what it has taken from me and what it continues to take from people. The emotional toll is huge on top of everything else but take it day at a time and keep fighting. I hope some day you will have your girl home with you, that really is something to fight for. Xx

    Posted by Fiona | September 10, 2015, 8:22 am
  98. hi ema go for it good luck with the consultant remember to ask for video dynamics thats the last test they do that tells all thats going on thats how they found out my mesh /tape was done wrong hope your lawyer is on the ball with this there are so many test cases going to court the consultants are good at saying the benefitsb far outway the risk thats nonsence how is being in a wheel chair or on crutches a benefit so stick to your guns dont back down good luck xx

    Posted by michelle (aka ramona dawn) | September 10, 2015, 8:29 am
  99. emma you can email elainholmes1@live.co.uk she helped me with all the information i needed she called me on the phone her and olive are lovely and karen she came to a hospital appointment with me too the girls are great get in touch with elaine she is so nice and will tell you anything you need to know ok

    Posted by michelle (aka ramona dawn) | September 10, 2015, 8:40 am
  100. http://www.scottishmeshsurvivors.com for any info you might want to look for

    Posted by michelle (aka ramona dawn) | September 10, 2015, 8:44 am
  101. Hi, there is a big campaign on Facebook … Sling the mesh. Kath Sansom, a journalist and fellow sufferer is heading it. You will find loads of support and info there. You are not alone, there are thousands of us ….love and light xxx

    Posted by Kate B | September 10, 2015, 8:56 am
  102. ive just emailed elain ty all soo very much i dont go on fb but the advice u have given me is amazing thankyou ALL so very much

    Emma xxxxx

    Posted by Emma Ashby | September 10, 2015, 11:02 am
  103. no problem at all take care x

    Posted by michelle (aka ramona dawn) | September 10, 2015, 1:32 pm
  104. to Fiona,Michelle Dawn- im on the road!!- gp has reffered me to local urogynae who fitted the damn thing so its a start!!! long haul ahead i know but will keep all posted. as i knew neurologist found nothing wrong with my brain!! lol!!so i feel totally vindicated insisting on this referral 4 uro dynamics and scan to c where the damn mesh is!!

    Very releived Emma xxx

    Posted by Emma Ashby | September 11, 2015, 12:26 pm
  105. well done emma stick to your guns girl good luck x

    Posted by michelle (aka ramona dawn) | September 11, 2015, 1:51 pm
  106. Hi every one its so good to read all the posts altho none of us should have been put thro all the pain and discomfort we have suffered.–I wont repeat my tale of woe but if you scrawl back far enough you should come across my posts— I to saw Natalia Price privately in Oxford then went on to her NHS list to have the remains of my tape removed.I waited about 7months but could have had surgery after a 3 month wait but I was also waiting for a knee replacement which came up first.Natalia is a lovely caring lady who told me my tape had wrapped around the bladder neck.I cant say I am at all pain free ,dspite taking 900mgs Gabapentin 3 times a day ,but the pain is only on sitting now.I am also incontinent again but I use pads and it isn’t any thing I cant handle easily.Go for it ladies ,get the stuff out of your body,we all heal differently ,am sure some of you will go back to being”normal”again!!! I am a retired nurse and make sure all the medical folk I know are aware of all the awful things we are going thro
    Hugs to you all
    Carole xx

    Posted by carole jarman | September 12, 2015, 4:51 pm
  107. to nurse Carol- im so pleased u got ur mesh out even though u r not completely pain free…not good but im sure better than things were. Could i ask u- how do i ask 4 a private app with natalie and how much??. im on benefits so need to save the money first and asap b4 any more damage is done….also live at the other end of the country in north wales and on crutches with no family or m8s to support me, so its not an ideal situation but im determined to get it out n sorted. i want my life bk!!-

    kind regards
    disgruntled 45yr old Emma

    Posted by Emma Ashby | September 13, 2015, 7:34 am
  108. Hi Emma I just phoned Natalias secretary and asked about a private appointment–you will find her number on her web site—It cost me £200 so quite a lot of cash ,especially as you are on benefits.I also had my gp do a letter with all my problems which she sent direct for me.I saw Natalia within 10 days , so much better than her quite lengthy NHS wait I am so sorry to hear of all your ailments and only wish I could offer a solution to your travel dilemma take my hat off to you for your perseverance tho.
    Good luck and do let us know how you get on.If you think of any thing else youd like to know I am sure one of us on the site could help
    Carole xx

    Posted by carole jarman | September 13, 2015, 4:05 pm
  109. hi Carole- ive left an email and someone will b in touch i think this week. i can get 200 and 103 for train but its gonna take 3 changes and trains for oxford dont leave holyhead b4 11am so id get 2 oxford at 4pm and then have no clue if id be within taxi distance from the centre. i can get a gp letter no problem they are excellent in my surgery it just seems to be a logistics problem now!! lol!! oh my life!! thankyou so very much for the effort you have gone to finding info out for me!! i really appreciate it and will NOT give up!!

    Emma xx

    Posted by Emma Ashby | September 13, 2015, 5:54 pm
  110. Hi Emma,
    It will be the best 200 you ever spend. Natalia really is a lovely lady who understands. I know the logistics are crazy but it will be worth it if you can manage. I travelled from Scotland and that wasn’t easy but knowing what others had said about her made me determined to get there. I wish you all the luck in the world. Xx

    Posted by Fiona | September 13, 2015, 7:45 pm
  111. EVERYBODY on this site has been an amazing help to me thankyou all so very much!!- i WILL get there fiona if i have to thumb it lol!!- I need to get all the info on my health i can this week from my gp and i am so on my way!!! I WILL UPDATE AS I GO GIRLS !!! XX

    Posted by Emma Ashby | September 13, 2015, 7:55 pm
  112. Good luck Emma.

    Posted by Caroline Andrew | September 14, 2015, 6:23 pm
  113. Hi, I’ve read every single comment on here. I only wish I done that before my tvt-o operation in July 2015. I wasn’t aware of any problems I am now facing after having this horrible tvt-o sling put in. There isn’t 1 urogyneologist in all of Australia who is able to do a full removal. Many women from Australia are having the same drama as I am now facing. I would like to make contact with all of the doctors mentioned in the above discussions but I haven’t seen any email contact details listed. If you know can you please let me know. Also I have no idea how much it would cost or even the logistics of travelling from Australia to I don’t know where in England (never even been to England). But I feel must at least see if its possible. Thanks for your help.

    Posted by jo | October 12, 2015, 8:07 am
  114. I have been offered full removal and hysterectomy abdominally at the same time. has anybody got any info about abdominal removal of tvt mesh?? please message back if you have im scared witless!!- jo in australia-do some more research at your end first?? there must be SOMEBODY that can help you even privately?? travelling so far is not a good idea although when u are suffering you will do almost anything-i know. ladies in the uk if you have ANY info for me on abdominal removal pls message me before i have a meltdown!! thanks everybody!!

    Posted by Emma Ashby | October 12, 2015, 8:17 am
  115. Hi Jo, horrified to see that you cannot find anyone to help you in Australia and you would have to contemplate coming over to the UK. Keep researching as you may just find a site like this over in OZ, this horrible problem is world wide. I saw Dr Natalia Price in Oxford to have mine removed. She works NHS but also has a private practice called Oxford Gynaecology and the phone number is 01865 851105 her secretary is called Tracey but sometimes a lady called Nikki will answer if Tracey is not there. the email for the private practice is secretary.oxfordgynaecology@gmail.com. The website you would be looking for is Oxford Gynaecology but if you just google Dr Natalia Price it will direct you to the site. She is a very skilled doctor but most importantly she understands and is so caring. There is also another doctor, I think her name is Suzi Elneil? I hear very good things about her, maybe someone on here could confirm her name and details for you. She is also based in England. Wishing you so much luck.
    Emma Im glad you have been offered some help. I only had the TVT removed and that was done vaginally and keyhole but if I’d been told it had to be abdominally removed then i’d have had it done, anything to get rid of it. Hopefully someone on here can answer your questions. The whole thing is scary but keep doing your research. Im so glad you found the strength to keep going. Hugs to you all and please let us know how you get on. xx

    Posted by Fiona | October 12, 2015, 4:49 pm
  116. Thanks Fiona!!- im glad you have put Jo in the right direction you are a star chick!!- Im waiting for my pre-op assessment and am having total hysterectomy at the same time. it sounds ridiculous but im ecstatic about it!! the relief knowing the tape is coming out is just immense. i realise recovery is going to be long and arduous but it will be sooo worth it to me!!- Jo please hang in there DONT give up and carry on getting support on here if you can. ALL the ladies ive spoken to on here have been AMAZING!!

    Love and hugs to all
    Emma xx

    Posted by Emma Ashby | October 12, 2015, 5:17 pm
  117. Hi Emma, recovery is no picnic that’s for sure but it is so worth it, pain, tears and all. I’m heading back to see my angel doctor as I call Dr Price as have just been told I have ovarian cysts now. Sod’s law but at least I know I have a doctor I trust. Another long journey from the north of Scotland but I’m so scared of going to another doctor that I don’t know. I have absolutely no faith in the doctors up here except my lovely GP. On the plus side I am now 5 months post removal and feel like a different person. Yes I still get pain but that’s muscular from not being able to walk properly for so long and also the muscle is still healing and physio is heIping that. I totally understand why you feel ecstatic, I felt like that after my consultation when I was told I wasn’t going mad, it wasn’t all in my head. I almost ran down the corridor to the theatre I was so happy I was getting rid of the evil mesh, I’m sure the theatre nurse that came to get me thought I was nuts but I was, to use your phrase, ecstatic. I just wish we had discovered the cysts then and I’d have had the double op like you. The pain from the cysts really only started a couple of months ago but to be honest I’m not too worried because this time I know what’s wrong with me and it can be sorted.
    Before my op I made sure I had plenty of medication and provisions in the house in case my husband had to go abroad for work as I don’t have family around me to help. Just a little thing like that gave me peace of mind. I’m quite house proud but that went out the window, I didn’t feel confident enough to drive for eight weeks. I really couldn’t have cared less because for once I was putting myself first and resting as much as possible in those first few weeks after the op…after all we go through hell to get as far as the removal I wasn’t going to mess it up. So be kind to yourself. I hope you don’t have to wait too long for your operation but at least now you might just be starting to see a glimmer of light at the end of what is a hellish long tunnel. Just remember Emma, that us women have a hidden inner strength that we find when we need it. Keep us posted on your progress. Lots of luck and hugs xx

    Posted by Fiona | October 12, 2015, 10:43 pm
  118. Thanks for your well wishes Fiona. I will be doing EXACTLY the same as you as im on my own too -lots of provisions and sorted neighbour for my bin lol!!- will be having op before xmas and glad hysterectomy at the same time. Im expecting pain and lack of movement afterwards so forewarned is forearmed . like you i was very house proud until 6mnths ago !- im hoping for a spurt before i go in and have also got a mechanic to make sure my batt doesnt go flat while i cant drive!!- I was a bit disappointed to hear about cysts you have now causing you bother. I hope they sort it out for you soon but you are over the worst of it at least-its just a small hurdle for you left now i hope. and yes i like you will be sprinting into theatre with jubilation!! – as soon as im able i will let you know how my post op journey goes and will be thinking of you and hoping you manage to sort your ovaries out before you have any more grief!! Our lives WILL be our own again Fiona and we will be even stronger for it!! These things make us that way!!

    I will update after my op and let you know how its all gone (saving your messages cos they keep me going!!) and how my recovery is going. Good luck with cyst investigations hopefully they will be sorted for you soon Fiona.

    lots of hugs

    Emma xx

    Posted by Emma Ashby | October 13, 2015, 4:06 am
  119. good luck emma i am having my tvt removal in november just waiting on a date hope all goes well for you xx

    Posted by michelle (aka ramona dawn) | October 13, 2015, 1:02 pm
  120. Hi Michelle!!- I remember you saying and was wondering if youd had a date to be honest!!- hope its soon sweetheart and the VERY best luck when you do get it-just in case im out of action myself!- It will be the best thing youve ever done for yourself im CERTAIN!- just make sure you look after yourself afterwards like i will. im going to jump on that trolley like cannon fodder!!- im so relieved my urogynae con was understanding and is doing hysterectomy at the same time. its like a weight off!! i think i will be waiting on list for a while but ive heard others have been whipped in and out in weeks after seeing con so fingers crossed xmas ill b recovering! im living in hope for that to happen anyway. fingers crossed you are recovering then too Michelle. let us know how you get on wont you?? i believe recovery isnt easy but its better than pain and feeling ill all the time i say!!- i shall b thinking of you until i hear your date for op hun

    massive hugs
    Emma xx

    Posted by Emma Ashby | October 13, 2015, 4:14 pm
  121. hi emma i hope you get a date soon and get sorted out its been too long for you i know i am just waiting for a letter or phone call i will keep in touch and let you know how i get on ok you take care good luck xx michelle

    Posted by michelle (aka ramona dawn) | October 13, 2015, 8:05 pm
  122. Hi Emma, there are many women just like me in Australia who are suffering are unable to get a full removal of the tvt-o in Australia. Many of these Australia women have been dealing their tvt or tot or tvt-o for years. Some women have chosen to go privately to America for surgery (costing between $40,000-$70,000 aussie dollars). Most of us don’t have anywhere near that sort of money to do the same thing. I have contacted so many gyno, urogyno all around Australia as have many other Australian women for a full removal of this horrible tvt-o sling and I’m constantly told they have never heard of such problems (rubbish I say). Hence, the reason I am looking overseas myself but I gather the cost will be out of reach.

    Posted by jo | October 14, 2015, 6:19 am
  123. Jo what im hearing is absolutely despicable. To be placed in a position where NOBODY will remove something you KNOW is harming u is horrendous. I feel for you all out there in Australia because you cant be the only one who cant afford to go and get it removed elsewhere. Im speechless. Honestly sounds like you are up against a brick wall.If its any help at all if you manage to get anything sorted in the uk in the future you are more than welcome to stay in my home. other than that i think you should start a campaign to GET surgeons out there that CAN do the removal op. This is an impossible position to be placed in Jo. I really am at a loss as to what you CAN do??… Its unbelievable. The only other option for you at the moment really is to get information about homeopathic remedies for pain, immune system etc and try them?? I really feel for you and am glad we have removal surgeons here to do this op.Keep in touch on here because the ladies on here are unbelievably supportive ive found Jo.

    a big massive hug goes out from me to ALL you ladies struggling out there.

    Emma xx

    Posted by Emma Ashby | October 14, 2015, 8:26 am
  124. Hi Jo I know how you feel I am also from Australia and had a TVT done 5 weeks ago and in pain and now thinking to travel to America to get it removed or London trying to make a decision where and the amount of money that I will have to spent is ridiculous what is wrong with doctors they are suppost to make people feel better I am so worried about the whole situation and praying for all of us that are suffering the horrible nightmare that one day can be all gone and we are all back to normal and pain free God bless everyone !!!

    Posted by Pat | April 3, 2016, 9:56 am
  125. hi there I had mine removed in December and re done using my own tissue that has not gone problem free either still having problems and still have to use catheters to empty my bladder cant have anything with caffeine in it either still have leakage and when we would normally try holding in when we need to pee my bladder empties and I wet myself I hate this I don’t know what is going to happen from here in but you should get advice from your Doctor about what to do I wish you well

    Posted by michelle | April 16, 2016, 5:14 pm
  126. Hi Michelle sorry to hear you are having some issues I hope in time it gets better for you. Who was the surgeon that did your removal and what is the recovery time well apart from the incontenance it seems that everybody has different outcomes I had a TVT surgery 7 weeks ago and have an on and off groin pain that is driving me insane it doesn’t look like is gonna go away I don’t know if removal will be the solution but I guess the longer you leave it the more damage it can cause I hope things get better for you all the best

    Pat

    Posted by Pat | April 17, 2016, 10:11 am
  127. Hi Pat thank you I would certainly have it checked out don’t leave it if your having that type of pain it could get much worse
    Miss Granitsiotis done my both my operations I am waiting to see her again I now have a lump that maybe a back prolapse that she told me I had after my surgery and then told me she does not remember saying that and didn’t write it in her notes and said she must have forgot to so does not instil any confidence in her now I know she is leaving in June to work in Edinburgh.
    please don’t leave your pain to get worse I have seen what it can do to other women so go get checked out as soon as possible get an alternative opinion from someone else if your not happy ok don’t be scared to ask either.
    good luck all the best let me know how you get on

    Posted by michelle | April 22, 2016, 2:06 pm
  128. I had a TVT in 2007 now starting to get very sore underneath! What is my first step into finding out if it is the TVT that is causing this?

    Posted by Pamela | May 6, 2016, 11:30 pm
  129. Hi all, I had a tvt op 8 weeks ago and have still not recovered. I am constantly bloated, stomach is sore and have discomfort with sharp pain when I orgasm during intercourse. I have urgency going to toilet and a lot of soreness in my one side. Tiredness and generally feeling unwell. I am being sent for a scan and have an appointment soon with the doctor who performed the operation. After reading all these stories I am really concerned whether I should just wait to see if things get better or put my hands in the doctor who did the operation in first place, or just ask to have it removed before things get too bad like so many others on here. Can anyone give me some advice please? thanks.

    Posted by Sue | June 12, 2016, 5:07 pm
  130. Hello is s bit early too say I have my put in 3 months ago but I have pain on and off in my opinion I will wait around 4 months if the pain continues then I will definitely consider to get it removed that is what I am doing my has been in for 3 months. It is very important to select a doctor that has done a few removals so you have a better outcome also if problems get worse definitely get it removed as soon as possible all the best .

    Pat

    Posted by Pat | June 13, 2016, 11:43 am
  131. Please someone help me understand if what I’m experiencing is normal in the way will it get better. I had the mesh sling proccedure (mini arc) two weeks ago. I’m now leaking unknowingly brown urine constantly. This is more and much worse than the occasional sneeze. And cough n activity. Leaks before Surgary. I was not told this will happen. I’m desperate. Thanks

    Posted by Debby | June 28, 2016, 2:23 am
  132. Hi Debby,altho it is early days for you I don’t think what you describe is normal and I would get in touch with your consultant—probably thro his or her secretary —as soon as you can for advice.I had my tvt put in many years ago —-and have since had it removed–but I cant recall having incontinence problems afterwards,or at least not for quite a long time.I did infact think it was something great to start with.Oh how I wish now that I had never gone down that road!!
    Good luck love,message again if I can be of more help

    Posted by carole jarman | June 28, 2016, 3:36 pm
  133. Hi Debby, I would contact your doctor ASAP as brown urine doesn’t sound normal to me. Good luck and don’t delay !

    Posted by tvtinfo | June 28, 2016, 4:22 pm
  134. Hi ladies
    8 weeks ago i had my 3rd operation a sub urethral vaginal sling, to help stop the severe incontinence i was suffering since having a sling fitted 6 yrs ago, i had half the sling removed 2 yrs ago also, so 8 weeks in the incotenance is as bad as ever, i feel i went through 6 hrs of surgery, a 12 in cut on my stomach and inside as well, all gor nothing, has anyone else had this done, and is in the same boat, iam so upset by it all

    Posted by Janine Lowe | June 28, 2016, 4:40 pm
  135. Hi Janine, sorry to hear about the very disappointing outcome. I think you need to go back to your surgeon to see why it is not successful and what he or she can do for you.

    Posted by tvtinfo | June 28, 2016, 11:24 pm
  136. Hi Janine,you poor girl I really feel for you but that doesn’t help you at all.I go along with what TVTINFO said,you must go back and complain asap.Do be careful re the half of the sling you have left inside cos I to had part of mine remaining and it ended up around the neck of my bladder and was not easy to remove.You need to see a really good consultant,there will be 2 mentioned in earlier posts on this site,but just ask one of us for a name if you ever need one
    Good luck X

    Posted by carole jarman | June 30, 2016, 4:28 pm
  137. I had the one side removed by mr c main in Leicester, then we moved house and he transferred me to karen brown at the RVI in Newcastle, and she did the last op, just xalled today to see if i can get a appt, as obviously i am still suffering incontenance just as before, i am feeling very sorry for myself as yoi can imagine

    Posted by Janine Lowe | June 30, 2016, 5:08 pm
  138. Hi Janine, I wonder why they removed one side only in Leicester? Seems a bit odd. Did all go well with the other side? Has the full slung been removed now? Hope you get treatment you need to get back to full health.

    Posted by tvtinfo | June 30, 2016, 5:57 pm
  139. They only removed one side,as that was the side i had all the problems with, infections, abscesses etc, so the other side is still in, he said he fidnt want to risk csusing problems that side also

    Posted by Janine Lowe | June 30, 2016, 6:43 pm
  140. Well, after 14 months of wire like pain in my bottom and labia post a TOT insertion I have now see Ms Elneil at UC hospital in London and she is going to remove it next year. Roll on op day! She has really helps allay my fears about what has happened to me with this tape and validated my experiences. Why oh why do surgeons keep putting the TOT’s in?! Awful stuff. I am facing a hug chance of having to have a colposuspension procedure done post the removal of the mesh tape as a return of incontinence is highly likely but she would do this to do at a later date.

    Ms Elneil is very kind and compassionate, experienced in mesh removals and I don’t think I could be in safer hands. What a stress this has been. I will have to travel to London from the south west peninsular and while this is a hassle it is doable – I can have my Pre-op down here and they are very thoughtful about surgery times so I can travel up
    By train in the morning and have afternoon surgery. 6 weeks recovery time but I think I can put that to good use with books and gentle exercise.

    Posted by Michele | December 7, 2016, 8:30 am
  141. Hi I too had to have my sling removed 2 yrs ago. I had a sub urethral facial sling done in April. to be in no better situation, I am actually on my way back to hospital today to have more surgery on Friday Wish I Had never had anything done. but I am in so much pain something has to be done

    Janine

    Sent from my Samsung Galaxy smartphone.

    Posted by Janine Lowe | December 7, 2016, 1:49 pm
  142. Hi Janine – may I ask whether a sub urethral facial sling is the same as a colposuspension? And which surgeon and hospital did your surgery? Your experience sounds worrying and frustrating for you. Did you have a TOT in the first place or a sling.

    Posted by Michele | December 7, 2016, 2:06 pm
  143. Hi I had my tvt removed in Leicester through my groin and vaginally , then saw karen brown in Newcastle who did the sub urethral sling , colpulsuspension is different I think, she wouldn’t do that on me, I am having investigation surgery Friday as I am in so much pain, I had bladder tests 2 weeks ago and this is the outcome, so not sure what’s next ,it’s been a long recovery and still not right since end of April

    Janine

    Sent from my Samsung Galaxy smartphone.

    Posted by Janine Lowe | December 7, 2016, 2:15 pm
  144. Good luck Janine with your next lot of surgery,it really is never ending isn’t it?I had a tvt put in in 2000 and have had op after op ever since>I am now rid of the mesh at last but have suffered vaginal nerve damage so am in pain when sitting and there seems to be no answer to that ,sadly
    Hine sight is wonderful isn’t it?!!
    Hugs to you
    Carole xxx

    Posted by carole jarman | December 7, 2016, 5:28 pm
  145. Thanks for sharing that with me. Sounds really tough – I hope you recover soon and surgery has gone ok. It’s just exhausting I think and get in the way of other things in life.

    Posted by Michele | December 9, 2016, 2:40 pm
  146. My bladder will never be this same! Should I have it taken out?

    Posted by Rebecca Waldeier | January 10, 2017, 3:47 pm
  147. Well Rebecca , that depends on so much but the best thing you can do is get a reputable surgeon to assess you. Suzi Elneil in London is very good.

    A colleague of mine is having a TOT put in soon. I have advised strongly against it and shared my experience but she’s going ahead. Sigh.

    Janine, any news? Any improvements after your exploratory surgery? I am waiting on a date for my removal but am keen to get going. Fed up with sharp pains when I walk. So hope it sorts that out.

    Posted by Michele | January 10, 2017, 6:29 pm
  148. Well where can i start, during the op, my heart stopped and i had to be given lots of drugs etc to get me back, i ended up in coronary care and now under a cardiologist, all they said they found was inflammation in the bladder, but i have made a decision not to go on with any more treatment, i am going to have to live with it, i cant have any more operations and i cant put my family through anymore, i have informed my lawyer too of this, so thats my situation xxxxxx

    Posted by Janine lowe | January 10, 2017, 7:26 pm
  149. Oh Janine. What a awful time you have had. I hope that while it feels difficult that perhaps making the decision to stop further treatment brings about a peaceful time for your body to heal. Good wishes for a strong recovery.

    Posted by Michele | January 10, 2017, 8:41 pm
  150. any ladies here from south africa?who had tvt bladder sling

    Posted by nelie | July 6, 2017, 9:58 am
  151. Well 1 week post op mesh removal and urethroplasty. Understandably feeling yuck and uncomfortable but am on the right side of this now. Ms Elneil is brilliant – showed me pictures taken of the removal. Almost all mesh out. It had been placed wrongly and was a difficult dissection. My bladder and urethra not happy yet but hopefully will heal. Such an emotional trauma mesh has been and is – and painful and life changing. Care at University College Hospital in London was wonderful. Great nurses. I have had some post op complications but trying to sort those now.

    Posted by Michele | August 24, 2017, 9:12 am

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