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Campaign for Change, Implants - Regulation of Medical Devices, Medicines and Healthcare products Regulatory Agency (MHRA), National Institute of Clinical Excellence (NICE), News & Updates, Risks & Complications, The Problem with Mesh

The Problem with TVT Surgery

  • TVT – What is it?

TVT (or Tension-Free Vaginal Tape) is a woven polypropylene mesh designed to support the mid-urethra to prevent stress incontinence.  The mesh strip is a permanent implant which is inserted transvaginally under the urethra to provide extra support during times of increased abdominal pressure such as when coughing or sneezing.   Many UK NHS hospitals use the Gynecare TVT retropubic tape which is manufactured by Ethicon, a subsidiary of Johnson & Johnson.  Other variations on this tape are TVT-Secur, TVT-O, and TOT.  There are other brands of synthetic sling similar to TVT produced by other manufacturers.

Synthetic meshes made of the same material may also be implanted transvaginally during surgery to treat pelvic organ prolapse in order to support the pelvic organs (bladder, uterus and rectum) and help prevent them from slipping down into the vagina.  Mesh may also used to treat some cases of hernia. 

Synthetic meshes have been shown to be no more effective than other non-mesh surgery but doctors carry on implanting it because the training, operating, and recovery times are much quicker than traditional surgery.

  • What’s the Problem?

Women are often not told of the long term risks and lack of long term data on the safety of TVT.  The surgery is described in the manufacturer’s literature as “safe, effective and minimally invasive”.  However, these meshes are causing serious complications in many women.  In additional to the usual operative risks associated with gynaecological surgery, the mesh can cause all sorts of problems, such as: urinary retention and bladder emptying problems;  urine infections;  nerve and pubic pain;  painful intercourse; erosion of the material into the bladder, vagina and other organs; infection and abscess; urge incontinence; and foreign body reaction.

There are studies which show that mesh is not inert and can shrink, degrade and migrate inside the body. Some women have had multiple surgeries to remove portions of the tape which have eroded into the vagina, pelvic tissues or organs, causing pain and infection.

This device becomes firmly implanted in the body once the fibroblasts have infiltrated the mesh at around 6 weeks. Unlike hip or breast implants, it becomes very difficult and sometimes impossible to remove.  Removal can be risky too because it risks further damage to the delicate organs such as the bladder and urethra.  Many women have had trouble finding the right treatment to remedy their problems.  There are very few surgeons in the UK who are experienced in removing this mesh because it is a very specialised and highly skilled procedure to remove it, yet there are numerous gynaecologists, urogynaecologists and urologists implanting it in hundreds of women up and down the country.

  • What’s happening in the US?

In America, the US Food and Drug Administration (FDA) has issued warnings about the use of mesh in pelvic organ prolapse and stress urinary incontinence.  Since then, hundreds of lawsuits have been filed against the manufacturer.  The FDA is considering reclassifying the device.  They are ordering post-marketing surveillance studies be carried out by the manufacturers.

  • What’s happening in the UK?

In the UK, the Medicines and Healthcare products Regulatory Agency (MHRA) has issued a notice and convened a workshop and a paper commenting on this device.  It recognises the health issues surrounding this implant but its recommendations do not go anyway near enough to controlling the indiscriminate use of this device.  Women are not being told that there are alternatives to mesh, such as traditional surgery using stitches, or conservative treatment such as pelvic floor therapy. They are not being told of the full nature of the risks and the lack of long term data on its safety.

There is a lack of reliable data on the safety of these devices.  The real rate and full nature of complications are unknown. The MHRA has a voluntary reporting system for adverse events but this relies on patients and doctors reporting any complications and so is dependent on the honesty and compliance of doctors and the computer literacy and general savvy of patients.  Reporting is not made easy because the MHRA ask for the device serial number and model number and this involves the patient applying for their medical records, which is a further barrier and can take weeks/months plus the patient may incur costs.  There has been a call for a national registry to monitor the number and nature of complications but the MHRA seem a long way off implementing this.

  • Why are surgeons putting them in?

There are few surgeons who are willing to speak out against the tape because it was considered “revolutionary” when it first appeared over 10 years ago with limited data on its long term safety, and it has become so widely used now, being quick and relatively easy to perform compared to traditional surgery.  Surgeons might be seen as dinosaurs if they do not use this new technique.

Also, there are the National Institute of Clinical Excellence (NICE) guidelines (CG40 2006) which appear to promote this surgery as the recommended treatment option for stress incontinence : “Retropubic mid-urethral tape procedures…with macroporous (type 1) polypropylene meshes .. are recommended as treatment options for stress UI where conservative management has failed. Open colposuspension and autologous rectus fascial sling are the recommended alternatives when clinically appropriate”. However, the guidelines acknowledge that evidence is limited: “Many procedures have been described for the treatment of stress UI; although there is no strong evidence of superior effectiveness of any one, the best available data support the use of retropubic mid-urethral tape procedures, colposuspension and autologous rectus fascial sling.” Perhaps a key factor here is that “retropubic mid-urethral tape procedures consume fewer hospital resources and are associated with faster recovery than the other two procedures”. (NICE Guidance CG40 2006)

Another factor influencing the use of these devices is the aggressive marketing by the manufacturing companies (such as Gynecare Ethicon) who make vast profits from the sale of these devices.  They sponsor and exhibit at major professional conferences attended by respected gynaecologists, urogynaecologists and urologists.  They run symposia or satellite sessions at these conferences.  They fund studies and research into these implants.  They pay for surgeons to act as travelling professors.

Despite these pressures, there are still some doctors who are willing speak out against the widespread use of synthetic mesh, and some who are now recognising the unique and lifelong risks presented by synthetic mesh and are no longer implanting it.

  • Why haven’t I heard about this issue?

It is difficult for women to talk openly about their surgery because bladder problems are a taboo subject in our society, but stress incontinence is a very common problem in women of all ages, particularly in women who have had children.  Unlike hip or breast implants, the subject of implants for stress incontinence has not been widely discussed, perhaps because people are embarrassed to talk about their surgery and complications to their family, friends and colleagues.  However, more and more women are now using support sites and the internet to help each other and are voicing their concerns and canvassing the government and health officials to do something about the indiscriminate and uncontrolled use of these intrinsically unsafe devices.

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Discussion

362 thoughts on “The Problem with TVT Surgery

  1. This sums up the problems and is clearly marked by easy to read headings.

    I have been told by PALS, Icas and Seap that it is vital that patients come foreward and lodge their adverse reactions. I hope that more people report their experiences, not necessarily as a complaint – but as a concern. In my endeavour to highlight various taboo subjects incl incontinence I have found that generally people are afraid of raising concerns – let alone of complaining. Many people just think they have to put up with what they have got – we now know we do not have to put up with it. I have spoken to many people who have had or know of others who have had implants, not all successful and the receipients do not realise that they should have been given the serial numbers of their implant device!

    Posted by I H | March 30, 2012, 10:38 pm
  2. Thank you very much for your kind comments. I’m so glad you think this website will be of use.

    Posted by tvtinfo | March 31, 2012, 9:17 am
  3. Where do you get help if you have pain from mesh I had the op five years ago and am having lots of discomfort don’t know where to go as originally had done on private health care which is no longer available as it is a previous condition. Can you help please

    Posted by Joy | June 11, 2012, 10:55 pm
  4. Allow me to pass on the benefit of my experience re pain, so far. My pains started belaterally as soon as I woke from surgery. My pain issue has not resolved completly, even after removal surgery.Through the selfhelp groups I have met with other sufferers. One of them said that her GP has advised her to try Amititryline. My Pelvic Floor Physion recommended me to have them too, my GP then prescribed them. I have now been on them (10mg) for 11 days now and I do feel that my pain is easing. It is early days yet. These tablets make you more relaxed and I have slept better with them than I have for the last two years. We are all so affected by our trauma and the lack of help from the medics who put these tapes into us, as Guinea Pigs, and when things go wrong there is no help other than trips to painclinics- which is never a cure! I would go so far as to say that injections with Steroids are in the long term damaging for the body tissues. (told to me by the pain consultant I went to see and when I asked him about the long term effects of repeated treatments. Steriods damage tissue that you may find some tissues will collapse. Amititryline may be your only bet for now. There is also a new one on the market and I will try and find out from another fellow sufferer, what that product is called. I have always been wary of taking tablets -as the side effects are worth reading about! Amititryline has been on the market for a long time – so we can assume that we can trust that product. Your GP would certainly be able to advise you. Mine agreed with my PF Physio and he said it is worth a go.

    Good luck I. H.

    Posted by I H | June 12, 2012, 9:32 am
  5. I hope that you have written to the MHRA to have your concerns raised so it can be recorded as an adverse incident regarding these prolyene mesh tapes for stress incontinence. You are also entitled to make your Area Trust aware that you are in pain following the TVT procedure. I would also write to the clinical director of the private Hospital that you were in. He/she may not be aware that you are one of the statistics of adverse incident reactions. I would advice anyone with a problem to make use of the free Patient Help Organisations that are available. Your first port of call would be Pals in your Trust Hospital. Also look up ICAS or SEAP . You may have them in your area. They will give you an information pack, which you can use – even just to look through. they are also well trained in listening – you can have a chat with them first. they are highly trained professionals and very compassionate.

    Give them a try. IH.

    Posted by I H | June 12, 2012, 9:48 am
  6. ICAS/SEAP Tel: 0330 440 9000
    Fax 01424 204 687

    Give it some thought Joy, regards I.H.

    Posted by I H | June 12, 2012, 9:52 am
  7. Hi Joy,

    You really need to see an experienced urogynaecologist to get some diagnosis of your problems and hopefully help with your pain – youir GP needs to refer you. It doesn’t matter if your original surgery was private – you are still entitled to NHS care in the UK.
    Many people get problems years after the original TVT so it’s important that you find a doctors who can get to the bottom of your discomfort and if it is the TVT, then there are options such as partial or full removal which can alleviate symptoms in many women (but not all).
    If you are in the US try the Topix forum http://www.topix.com/forum/com/jnj/TTE0RAIRMP5EFC052/p159
    for details of recommended doctors and on there is also information on the Canadian Facebook page for Canadian sufferers.
    If you want more information please email me on: tvtinfo@yahoo.co.uk
    Hope that helps.

    Posted by tvtinfo | June 12, 2012, 1:37 pm
  8. i had a TVT put in about 5 years ago and it gave me such relief from leaking, but now I am constantly experiencing cystitis type pains and constantly needing to wee, I am seeing doc tomorrow with a view to has this TVT gone wrong then i found this tonight:
    What’s the Problem?
    Women are often not told of the long term risks and lack of long term data on the safety of TVT. The surgery is described in the manufacturer’s literature as “safe, effective and minimally invasive”. However, these meshes are causing serious complications in many women. In additional to the usual operative risks associated with gynaecological surgery, the mesh can cause all sorts of problems, such as: urinary retention and bladder emptying problems; urine infections; nerve and pubic pain; painful intercourse; erosion of the material into the bladder, vagina and other organs; infection and abscess; urge incontinence; and foreign body reaction.

    There are studies which show that mesh is not inert and can shrink, degrade and migrate inside the body. Some women have had multiple surgeries to remove portions of the tape which have eroded into the vagina, pelvic tissues or organs, causing pain and infection.

    This device becomes firmly implanted in the body once the fibroblasts have infiltrated the mesh at around 6 weeks. Unlike hip or breast implants, it becomes very difficult and sometimes impossible to remove. Removal can be risky too because it risks further damage to the delicate organs such as the bladder and urethra. Many women have had trouble finding the right treatment to remedy their problems. There are very few surgeons in the UK who are experienced in removing this mesh because it is a very specialised and highly skilled procedure to remove it, yet there are numerous gynaecologists, urogynaecologists and urologists implanting it in hundreds of women up and down the country.

    now i am concerned regards SusanB

    Posted by susan b | October 7, 2013, 7:02 pm
  9. Dear Susan,
    It’s good that you found this site before going to your GP with your problems. Few GPs, let alone consultants, understand the range of problems that mesh causes, or in some cases, they deny that the problems experienced have anything to do with the mesh.

    Keep reading this site – get informed. If you need further opinions, you will see two female specialists regularly mentioned for their expertise in removing mesh.

    best wishes,Liz

    Posted by Liz RH | October 10, 2013, 7:29 am
  10. Everything well summed up in the above comment. Well done and thank you.

    Posted by Ingrid | October 10, 2013, 8:35 am
  11. Thank you for the useful information on this website and the comments regarding peoples experiences post tvt operations; I am very worried at the moment, I had my tvt operation last June and it went very well until my incontinence returned, I was refered back to urodynamics on 23rd September for tests again and described the left sided groin pain which I was experiencing and that I felt I could feel something sharp when sitting down etc. The 2 nurses examined me and mentioned erosion and I was told that the consultant would be seeing me again and I am still waiting. I am in agony this evening, the pain is so intense I can hardly walk with it or sit down. My daughter wants me to go and see my GP tomorrow but I am worried that he will say just wait for the appointment to come through. I am taking Tramadol with no effect; I know my body and this isn`t normal, what would you advise me to do? I don`t want to be `fobbed` off.
    Karin

    Posted by Karin Bridges | October 16, 2013, 6:41 pm
  12. Hi,

    If you go to the home page on here and click on recent comments, just below your name if you click on my name it will bring a long list posts from lots of women who have had problems with tvt mesh which I think you will find invaluable.

    I think you should do as your daughter suggests, there are two surgeons who are mentioned repeatedly, I had my tvt mesh removed just over three weeks ago by natalia price. You are entitled to a second opinion and I urge you to do this, it is the best thing I could have done.

    I I hope this helps, liz on here is extremely helpful with her advice, she recommended I see natalia, I’m sure she could advise you should you have any questions or of course myself if I can help in any way. Maxine

    Posted by Maxine | October 16, 2013, 9:06 pm
  13. Dear Karin
    I am sorry to hear that you are experiencing the same problems as many of us have had following the TVT insertion. Pain is so debilitating! Maxine is correct in saying that you should seek a second opinion ( under the patient’s charter we are entitled to see as many second opinions that we feel we need – you need to make your GP aware of this important right as a patient!) If you are able to pay for a private consultation by the surgeon Maxine has mentioned ( I don’t know where you live). then you could be seen within a matter of days – and only see that female surgeon – no other! this will be preferable rather than several months of waiting for your original surgeon, who is likely to drag things out anyway- as they may not be able to remove the implant themselves. Centers are happy to put them in, but have not got the skill to take them out without causing damage ( not that they would admit to that). This and other important facts are stated in tvtinfo’s very good article :
    “10 good reasons to avoid mesh”. This is straightforward information on all pitfalls regarding tvt mesh surgery. Take that information to your GP and make sure they read it while you are with them. GP are not very well informed unless they come across patients who don’t go away and state, as you quite rightly have, “WE all know our bodies – and we know when something is wrong” Stick with it. Inform the MHRA of your adverse reaction – tvt info give that information. Make sure you detail everything to the MHRA. Another good hint is to keep good records!
    I am mesh free and I am glad that I have had it removed – I listened to my body – and I know that mesh in no good in a living body. Spread awareness to warn people what can happen, because we do not get told every risk, short or long term by the implanting center.

    Good luck.
    IH

    Posted by Ingrid Hardacre | October 16, 2013, 10:51 pm
  14. Hi Maxine.

    Please also use of going onto the petition site of tvt-mum/petition. It is good way of adding weight to the plight of mesh victims, male and female. Use your voice to make a difference.

    Stick with it.
    BW
    IH.

    Posted by Ingrid Hardacre | October 16, 2013, 10:58 pm
  15. Hi Ingrid

    Yes, I will do. I went through a dreadful time and it breaks my heart to hear of others suffering, we are all different but the mesh appears to affect most people adversely and there is very little support and understanding out there. Not everyone will push either for answers are takes the opinions of the surgeons as gospel. Unfortunately with the best will in the world, many surgeons appear to have little knowledge and our bodies are precious. Poor natalia will be worn out as I feel she will have many other mesh sufferers to see and help. I’m also very frustrated how this problem is being hushed up. I’m happy to say I’m on the mend but feel passionately for those who are suffering and don’t know where to turn.

    Posted by Maxine | October 16, 2013, 11:07 pm
  16. Hi Maxine
    I am very glad that you are on the mend. Yes we need to be more vigilant and make sure that we create as much awareness as possible. Natalia is a brilliant and gifted surgeon, who understands fully what patients go through. Let us hope we can make a difference. BW Ingrid.

    Posted by Ingrid Hardacre | October 17, 2013, 10:15 am
  17. Hi,
    It has been recommended that I have tvt. After reading these posts, I am extremely worried about the possible side effects. Does this work for anyone? I know the stats say it does but would like to hear from someone post op 5+ years as that seems to be when problems are arising – if not before.

    Posted by val evans | November 25, 2013, 9:46 am
  18. Hi Val.
    Well done, for informing your self before consenting to elective tvt mesh surgery! This tvtinfo site is a really good information site, as all the articles, which are covered, are supported by the original research or source. Allow me to add this podcast link, so you can listen to a support mentor, who has had problems with tvt mesh, like me, from the onset.
    She speaks about her experience and gives good support with the single aim to spread awareness on surgical mesh implants. The speaker gives support in statements on how to approach a decision. I have listed the most important guidelines here, in italics, starting on the pink timeline button at;
    http://www.bbc.co.uk/iplayer/console/b019gy9r
    10.43 – 11.21: “ Is it really something that ruins her life? And can she cope with that? Has she really tried everything? Has she talked about the different options with a Pelvic Physio Therapist? Because I do believe that they are often missed out in this process. I am now under one and it has made a huge difference, just doing these exercises. So I would say “check for alternatives, check on complications, there are sites on-line and support forums, for women with complications. Make sure you ask your consultant questions – ask every question you can think of.”
    http://www.bbc.co.uk/iplayer/console/b019gy9r
    Listen to this program on bbc Radio 4 Woman’s hour. 19 Jan 2012. The topic starts at about 2 minutes into the program, which covers various topics. The TVT topic is 11.30 minutes long. The sufferer speaks three times – 2.00- 4.29; 7.55 – 8.55 and 10.43 – 11.21
    The other speaker is a Consultant, who puts these tapes in. I would say that when you go to your / a consultant he will sound very like this consultant. You will not be told all the risks, either short or long term. You will also not get a guarantee that it will either work or that you don’t end up in pain. You might be given a leaflet which will explain in a very short form how the operation is done. TVT information vary greatly, so just one leaflet will not give you all the risk factors, depending how these leaflets are written usually by doctors in training as part of their training.
    I would say that this is an operation, like any other. It involves risks but operations means long recovery, despite what the leaflet says, and most of them advocate a recovery period of 1-2 weeks if no complications arise! This information is designed to make it palatable, by describing it as a “minimally invasive”, day care procedure! Every surgery done to the body required full healing of, at least, two years, allowing for the various stages of healing! There is nothing minimally invasive about a procedure that requires a full anesthetic and being cut through the most sensitive parts of your delicate female genitalia.This procedure is carried out, in this country, private or NHS, as a “blind procedure”, which means that the surgeon is operating and going into your body without really seeing where he/she is going with the “Trocar” needles, which are 5 inches long! These needles are bend and designed to “scrape” along the back of your pubic bone, and to be pushed through the skin just above the pubic bone, where this plastic tape is pulled through and then anchored within the layers of your tummy muscles! These muscles and fascia are used every time you use your legs – sitting, standing, walking, bending,lifting, exercising, dancing or cycling, or sitting up in bed, which, when these are impaired by pain, it is pretty miserable!
    This tvtinfo has one single document which I would advice you to read. 10 Good reasons to avoid Mesh -explains everything that you need to know about this risky procedure.
    Finally I copy in a comment from a website, where an astute surfer made this following and wise
    comment:
    “As I have an existing autoimmune illness it took a private doctor to warn me not to opt for a mesh operation as it would worsen my health.The NHS must wake up to the dangers.” Remember”First do no harm”.

    Check out this petition site. http://www.tvt-messed-up-mesh.org.uk/petitions.html

    Hope this helps you to be become fully informed on this subject. I was told recently by a Urologist nurse: ” Nobody dies of Incontinence” – this is true!

    Good luck. I.H.

    Posted by Ingrid Hardacre | November 25, 2013, 5:47 pm
  19. My opinion the surgeons who do not know what to do when a problem comes up with what they have created/inserted—that individual doctor should NOT BE PRACTICING and to lie and dismiss a patient after the fact is just morally reprehensible. A product FemSoft urethral insert is available in the US for stress incontinence and best of all it is easily inserted and removed by the wearer when need be. Costs around $10 but it is synthetic. Anyone with a destroyed immune system from the mesh should use it with extreme caution for your body now sees most things/everything as an attack causing severe systemic inflammation. FemSoft product may assist with kegel resistance exercises also. GAPS diet & an MD/ND has been a blessing in my road to recovery. Best wishes to all that survived and my sympathies to the families of the one that did not.

    Posted by rose | January 5, 2014, 9:21 pm
  20. I had a TVT operation 7 years ago all seemed ok till twelve months ago and recently I have abcess like eruptions on both side of my vagina they break disappear then a couple of weeks later appear again I feel unwell for a couple of days the doctor gave me antibotic cream but it hasn’t helped. What should I do next help!!

    Posted by judith | January 26, 2014, 3:59 pm
  21. Dear Judith
    Sorry to hear your problem. Yes, you are suffering the same problems as many mesh implant sufferers are affected with skin eruptions. We know from research that mesh releases certain toxins once implanted it creates all sorts of auto immune reactions. I was also subscribed a cream (fusidic acid/betamethasone) I hope you manage with that cream. Make sure you register your adverse reaction to the MHRA. Also leave a comment on the tvt-mum/petition website to help to keep up the awareness of mesh sufferers. MHRA Adverse incident center: aic@mhra.gsi.uk or 020 30 80 7080. My sure you keep your GP informed – e.g. tell them about the mesh implant. Be sure to let your consultant/implanting centre know that you are now struggling with adverse reactions to your mesh implant. If you are able please spread the awareness by informing anyone you meet with how mesh surgery is not the answer and should be carefully thought about before consenting to drastic surgery. Seven years is not a great long time to be free of problems, is it? BW Ingrid

    Posted by Ingrid Hardacre | January 26, 2014, 6:52 pm
  22. Hi Judith
    I would go back to your GP and tell them how distressed you are and that you feel the antibiotic cream is not helping and you are worried it is related to previous surgery.
    tvtinfo

    Posted by tvtinfo | January 26, 2014, 10:24 pm
  23. Has any one had the mesh growing through into the vagina it’s very sharp!

    Posted by Lynn littler | February 10, 2014, 1:28 pm
  24. Thank you
    for your comments on TVT info and the enormous work that has been done on this blog site. Everything is well researched and the source always added in links. Without this site and other notable websites most mesh sufferers would not have had help, hope or the knowledge that they are not alone in their suffering. Being stonewalled and pushed away by those who know and knew always perfectly well that there have always been problems with surgical mesh, since the introduction of these products, has not helped anyone. It discredits those who were most respected and trusted. Without trust nobody would have entered into such an operation. Trust is good – checking and researching is better. Honesty is the key in all things. As a patient – if you know all the facts you are able to make up your own mind. Despite what we are continually told ” the benefits out weigh the risks” is simply not true. Any benefit is only short lived,as research has shown and sufferers are willing to share that problems occur at any time. Since these products are only short lived – 7 years for example – and we are not told they are only short lived, there is very little point in undergoing such a procedure, when other procedures will have to follow. Who wants to be on the operating table every few years? In hindsight it is much better to learn do pelvic floor exercises properly, under long term instructions and monitoring with good pelvic floor physiotherapy support. Urinary incontinence does not kill. TVT and mesh operations can! (As can all operations – do I hear?) We are grateful if honesty prevails before targets and greed and manipulations from powerful mesh manufacturers.

    Posted by Ingrid Hardacre | March 25, 2014, 8:40 am
  25. Hi
    I have recently seen a specialist again about my ongoing back issues which i have had for a number of years due to a lot of sport when younger. About 6 weeks ago, i had terrible spasms and lower back pain, went for an MRI scan, and was told its just wear & tear and once settled down, i could return to normal activity.
    i no longer get the spasms, but still have lower back pain and it runs around to the front in my lower abdomen.
    In April 2013, i had surgery and a TVT sling fitted. I dont want to be paranoid about it being anything other than back pain, but was advised to look on this site as a friend was concerned given the recent problems being highlighted concerning these TVT procedures. Did/does anyone else have symptoms re lower back pain and lower abdomen pain that has been connected to a TVT procedure?
    Many thanks
    Suzanne

    Posted by Suzanne | June 16, 2014, 3:23 pm
  26. I had the op done at the end of May and everything was great hardly any pain or discomfort except for the first couple of days leaking stopped couldn’t feel better about it. I went for my 3 month post ol check and to be told during the examination that the tape is eroding into my vagina she could feel it. Now im petrified as if complications arent dealt with swiftly they can become very severe. I hadn’t realised myself but ca. “Sense” something inside me. Ive been given hormone cream in the hope that my insides will grow around it. I am interested to hear from others that have had to have further surgery as this is something to be considered at my next appointment. Thankyou ladies

    Posted by Kerry Ryan | August 31, 2014, 8:37 pm
  27. Hi Kerry, your story just goes to show how this ‘tape’ can appear to be working really well whilst there are other problems going on and you weren’t even aware of it. The surgeon will no doubt have you down as one of his/her “successes”! I hope the cream works for you- maybe others reading can offer some advice?

    Posted by tvtinfo | September 5, 2014, 3:58 pm
  28. Hi Kerry
    Sorry to hear of yet someone else with ongoing problems after having a tvt fitted.I had mine “cut”in 1996 and am now having problems with mesh threads eroding into my vagina and am going into John Radcliffe hospital in Oxford under Natalia Price on oct 7th.Dont know if the cream has worked for you in the way you hoped Ive been using it for 2 years but was given it for vaginal atrophy
    If you are still really worried I would advise you getting a second opinion with either Natalia —in Oxford –or Suzy Elneil—London–,depending on where you life
    I wish you lots of luck
    Hello again tvtinfo hope you are well?!!!
    Hugs Carole

    Posted by carole jarman | September 9, 2014, 4:48 pm
  29. Hi Carole, I am fine thank you. Good to see you have got a date to presumably have your eroding mesh removed. Hope all goes well, keep us all posted.

    Posted by tvtinfo | September 11, 2014, 10:58 pm
  30. I had my first operation in January.. Waited 6 weeks to heal, a further 6 months for my follow on appointment to be told there’s mesh erosion.. 6 weeks later I got my second operation date. This was the start of the new year for the kids first day back I had my operation to cover up the mesh using extra skin.. It’s been 1 week and 3 days and I have stitches showing from inside.. In can see and feel all my inner stitches.. I thought they were loose but they arent. I cant get them out as it sends stinging pains to the area of the tvt tape.. Ive read all this post but im lost I really dont know what I should do also doesnt help it’s a weekend this is happening.

    Posted by zara | September 13, 2014, 10:00 am
  31. Hello Zara

    Sorry to hear that you are in a pickle over your stitches coming out. It is normal that you can feel these stitches inside. Stitiches usually disolve So please don’t worry. Best let your body do its own healing. Remember that complete healing after any operation takes 18 months ( got that from a Women’s health Pelvic Floor Physio therapist) So give yourself plenty of time to come to terms that you are “grounded” a little longer. I would let your GP know that you are struggling and make sure he sends you back to the consultant – or give the consultant’s secretary a ring. You can also ring the Ward Secretary where you had your last procedure done.

    I presume that you have signed the petition of tvt-mum/petition, so that your voice can be counted as a mesh sufferer.

    Also make sure you contact the MHRA to say that you are a mesh sufferer with mesh erosion. You find details

    See my tips on my earlier post about 9 positions up

    All good wishes – Take it steady – be good to yourself.
    Ingrid H.

    Posted by Ingrid Hardacre | September 13, 2014, 11:52 am
  32. Hi Ingrid can you give me details of finding the petition site and also how to contact the MHRA as I haven’t done much in that respect!!
    Yes TVTINFO its my eroding mesh I am having sorted —I hope !!–going into JR on Oct 7tht cant say I am looking forward to it but ,hey ho !!!Thanks for your wishes

    Posted by carole jarman | September 13, 2014, 12:28 pm
  33. Hello Carole J. -good to hear you are going forward to JR. Best of luck and blessings. Ingrid H.

    Here are the details you requested.

    It is really, really, really IMPORTANT THAT WE FOLLOW through with all the processes of making the awareness program a success. Please encourage as many people to sign the tvt- mum petition. It is easy to follow through. Click on the link or copy and paste the link into your google or other internet search site.

    The large Green and White Icon is on the right hand site of the page – click on that and then scroll down to see all the comments.

    Please add yours with dates and a brief journey you can mention your NHS Trust ( Private input centre?) where you had your tape put in – but don’t mention any names of surgeon or consultants. You should mention that you had remedial help from the JR in Oxford ( you could mention that it was a female surgeon who helped you) this would give any sufferer HOPE to know that there is help in some parts of the UK.

    Check out this petition site.

    http://www.tvt-messed-up-mesh.org.uk/petitions.html

    MHRA Adverse incident center: aic@mhra.gsi.uk or 020 30 80 7080.

    There are also other petition sites you can enter your name one is here from the scottish ladies ” Hear our voice” campaign.

    http://www.scottish.parliament.uk/GettingInvolved/Petitions/scottishmeshsurvivors

    I will forward the link from the meshies-united website shortly . or you could google it and follow through to the petition from Teresa Hughes website.

    Please stay with us on this awareness program , even after you have had removal and good help. Share that good news with others and continue to support us beyond your own healing.

    You are aware that complete healing of any wound takes minimum of 18 months to 2 years!

    I would like to meet you- if you would like me to visit you at the JR = please let me know. I believe you have my email number.

    Absolute best of luck.

    Posted by Ingrid Hardacre | September 13, 2014, 6:20 pm
  34. Dear Zara

    Please see my comments and website links which I entered for Carole. Hope this helps. Thank you . xx

    WE really could do with extra help in bringing out plight out to the public more! Depending where you live we could do with some people who are committed to go to London to just stand outside the NHS Annual General Meeting , with a poster or a banner to create more awareness on mesh. This meeting takes place in London

    It’s on the 18th September at 17.30. RSVP here:
    http://www.events.england.nhs.uk/nhs-england/163

    This should be a peaceful protest to create awareness on mesh injuries, which are devastating and life long.

    Please help us , as you have been helped by all the support groups ,which ever they are. We are united in our suffering and we must be brave and confident to speak out – even if it is silent.

    Hoping you respond.

    Ingrid H. x

    Posted by Ingrid Hardacre | September 13, 2014, 6:30 pm
  35. Hi Ingrid

    Thanks for your comment – it was quarantined as the system thought it was spam. Anything with lots of links on gets spammed – and I get a fair few spam comments so it’s a useful filter to have. I’ve taken it out now. Are all these petitions still current?
    tvtinfo

    Posted by tvtinfo | September 23, 2014, 9:00 pm
  36. Hi Ingrid,I thought I had sent this message yesterday but as I don’t see it any where I have no idea what I did,but forgive me if you receive it twice!!!Have signed up and made a few comments ,lets hope we can get this mesh banned before too many others are in so much pain.I would love it if you came to see me in the JR,as I doubt I will get other visitors as we live a distance away.I go in on Oct 7th and have surgery that morning ,will be in 2 or 3 days ,depending on my bladder ,could well be there until Sat.Visiting is 2pm till 8 pm.I seem to have lost your email address so if you still have mine and want another chat please feel free,just hope you visit this site before my going in date !!
    Bless you Carole x

    Posted by carole jarman | September 28, 2014, 10:41 am
  37. Hello Carole.

    Good to hear from you. Glad you would be able to have some visitors after your op. Hopefully we can make contact with each other once you get my email from TVTinfo admin.If you are in touch with other tvt networkers, such as Ann, I am sure they would be able to forward my email to you also. I have an appointment on 10 Oct in the JR, so I could visit then, or before, because , depending what work you are having done – you may discharged by Thursday / Friday. Keep in touch. I will check again tvtinfo later. BW ingrid H. PS. How far have you come to have the surgery at the JR?

    Posted by Ingrid Hardacre | September 28, 2014, 1:29 pm
  38. Hello Carole

    I have just checked my files I do have your email addr. so I will test that email and hope to hear from you. I will then inform tvtinfo that we have been “connected”. I do applaud your thoughts and your commitment in raising awareness to save others going down the route of an operation with mesh; which now is proving to be not as good as advertised and “sold” by NHS Trusts, private centers and the inputting consultants and surgeons. We are all living proof ( and we could consider ourselves “experts” by the sheer fact of our individual experience of mesh implant complications) It is therefore vital that we raise awareness by speaking about it to all whom we meet with in our daily lives and others who happen to cross our path.
    Email now sent to you. Ingrid H.

    Posted by Ingrid Hardacre | September 28, 2014, 1:40 pm
  39. Thanks for contacting Carole, Ingrid. Hope you manage to meet up next week.

    Posted by tvtinfo | September 28, 2014, 2:29 pm
  40. I am 10 yrs out from TVT. My drs never told me anything about any risks. I only leaked a bit when sneezed etc but since they were doing the hysterectomy they figured they would put this in. I did have urodynamics done first. I have had urine retention for yrs and told several drs including the dr that put the sling in. He told me that is NOT related. I have a dr now says it is and I could end up not being able to go on my own one day!!! I also have the tip scratching. Here I read that is erosion but not being told that. I am worried. I have enough health issues to not be dealing with something drs created. About 3 yrs ago I even had to go back in and have stitches put in that were working their way out. Wish I had known then what I do now. I don’t even think drs around Chicago take these out. I am self cathing now 1x a day but still don’t empty well. I always feel like I have to go afterwards. Dr is talking about cutting this as says it is pulled too tight. I wonder if my problems are that it is in their wrong and hitting the uretha. Why does life have to be made to be so hard sometimes???? J

    Posted by Jeanne | September 29, 2014, 1:53 am
  41. So sorry to hear of all your problems,this tvt mesh really can be a nightmare—altho I am sure there must be some folk some where that have been happy with their results —If you are not emptying fully it sounds like the tape may be occluding your bladder,which is what happened to me .I had my tape cut in 2006,and sadly had my bladder perforated at the same time !!!That healed with time ,but as I didn’t research my urologist before surgery –and infact knew nothing about problems that could be caused by the mesh at the time so just went with what the proffesionals were telling me (despite being a nurse)—-For the last 3 years I have been having pain when sitting which,after lots of injections and examinations,I am told is caused by mesh threads .so if it is suggested that you go down that line,please make sure you pick a consultant who is experienced in tvt removal
    Good luck Carole

    Posted by carole jarman | October 1, 2014, 3:33 pm
  42. Hi Carole, How are you after your op? Hope all is going well – you need to rest a lot now! Liz

    Posted by lizreececareers | October 24, 2014, 8:04 am
  43. I had my TVT in 2010 with fourth valley hospital. Like so many other sufferers of the TVT operation I have also had post operative complications. 1st op was TVT in. 2nd op – tape loosened. 3rd op – TVT divided but during this op it was discovered that the mesh was in the wrong position and sitting just behind my pubic bone. The constant straining to empty my bladder caused my bowel prolapse – op 4 – colorectal procedure. Some of the symptoms I still have are severe incontinence issues, extreme fatigue, constant stomach pain, leg pain, back pain and discomfort in intimacy with my partner.
    My life has completely changed because of this operation, I feel as though I have been unwell for years and it is having a major impact on my family. I got in touch with Cameron Fyfe last year and they said they would pass my details to Lefevres in Edinburgh but I still haven’t been contacte!?? I am due to see my gynecologist in March and the thought of being told that I will require more surgery fills me with terror. Julie

    Posted by Julie | February 22, 2015, 10:04 pm
  44. Dear Julie.

    I am so sorry to hear about you own horrible TVT journey. You are one of the typical ladies, who will have been labelled as “unlucky, unique , unusual, rare” etc. – by most of the medics whom you have met and some that you are still yet to meet. All I can say you have been lucky to have found this tvt blog site and now you are “informed” you can meet any medics “head on” . Let them say their stuff and then draw your own conclusion!

    Please promise me that you report your failure / adverse incident to the MHRA! It is really important, because the MHRA are blatantly insisting that the failure reporting rates to them, on any mesh operation, are low and that is untrue and is politically motivated!! I paste the link in for you – hopefully tvt info will recognize that the link is bona -fide and will let it stand in this posting.

    https://yellowcard.mhra.gov.uk/ choose the blue button for reporting device failures (mesh is a device!)

    Please don’t delay. Important also is that you tell your GP that you have reported your adverse incident. Nobody told me 5 years ago that you can report failed operations. No GP, no consultant, no Pelvic floor specialist! We need to take things in our own hands.

    Stay brave and stay informed with all the other websites. If you want to get in touch with me – tvtinfo has my email address. Well done for coming forward – there is still too much taboo about Urinary Incontinence and yet is was “all the rage” to talk about PIP breast implants some years ago!!

    God bless

    Ingrid H.

    Also see petition site on http://www.tvt-mum/petition. Please get in touch with me (if you are able) before you sign the petition, but do look through it very thoroughly. You are not alone. xx

    Posted by Ingrid Hardacre | February 23, 2015, 7:09 pm
  45. So sorry to learn of your misery, Julie. We share your pain and worry.

    Ingrid has given you valid and helpful points in lots of ways. If it’s of any interest, there has been more in the Scottish parliament today, with a lead lawyer from the US comparing mesh to asbestos http://www.bbc.co.uk/news/uk-scotland-scotland-politics-31602817

    I hope that your gynae knows what to do… there are a couple of England based gynaes who are good at removal but the funding may be an issue, let alone the travel.

    Take care, Liz

    Posted by LizRH | February 24, 2015, 8:27 pm
  46. I had my TOT done as part of a pelvic floor repair in 2007. Had no problems until around 8 months ago and have since had frequent UTI’s and constant pelvic, groin and leg pain. The pain is made worse when I sit and is getting worse each day. I am now living in Australia and have been under the care of two uro gynaecologists who have just looked at me in disbelief when I describe my symptoms as CT scan, cystoscopy x2 and MRI scans have come back as normal. I have repeatedly asked and suggested that my syptoms are related to the tapes as I clearly remember where the incision marks were following the surgery and my pain runs from that point at the front of my pelvis through to deep into by buttock and radiates down my legs. Feels like a constant pulling and throbbing and more recently sharp pains. Finally this week my consultant has said that I am a “typical presentation” of someone who is having issues with these tapes. The Consultant I am seeing is meant to be the expert in TVT’ and TOT’s but he has never validated anything I have said to him and I felt that he didn’t believe me. I am relieved that he has finally acknowledged that I am not going mad and that there is something going on in my body but annoyed that I have been fobbed off for months and told that I have just got an ‘irritable bladder ” from the repeated infections I am getting. The consultant has offered to try and remove the portion of the tapes that he can get to via the vagina and thinks this may help the symptoms. I just do not know what to do or who to talk to about my options as I feel that there are no experienced physicians in this field that really know what to do . I am not sure who to inform in the UK that I am having these issues post TOT insertion. Now after reading and researching I understand many other women are also in the same if not worse position . I do worry about the longer term impact on my health in relation to auto immune disorders and feel very disappointed that I was never given more information at the time of my surgery.
    Andrea.

    Posted by Andrea Donaldson | February 25, 2015, 11:20 am
  47. Hello Andrea,
    Sadly, none of us who post on here with mesh problems were warned of the potentially life-changing complications that mesh can cause. You have had a terrible journey thus far and it is all too common to be fobbed off. You have been badly treated for sure – and unfortunately this is worldwide, not just in Australia.
    Do read carefully the posts from women on this forum – they may take some time but you will feel better informed. Partial mesh removal is not often the answer because it leaves the mesh free to ball up in the body without the tension that previously held it. You might even want to email Dr Raz in UCLA to ask if he knows of any good consultants nearer you then him or the two excellent mesh removal consultants in the UK.

    Wishing you the very best, Liz

    Posted by LizRH | February 27, 2015, 5:56 pm
  48. I find this horrific that a surgical product been marketed and done so much damage. I have a similar 7 year story all of which was not believed until 5 months ago the mesh eroded into my vagina. Now it’s infected after being cut back and repaired. I am positive I now have a urinary erosion we will see next week after another cystoscope. I already know the rest has to come out and I am privileged to have a surgeon that specialises in this. The whole situation is just appalling.

    Posted by Lisa mckay | April 24, 2015, 9:24 am
  49. Lisa, I am sorry to hear that you too have suffered as a result of this procedure. I am interested to know who your surgeon is that specialises in the removal of the tapes. I am in Australia but am prepared to return to the UK to have my tapes removed. I don’t think I can go on indefinitely the way I am now. Regards Andrea

    Posted by Andrea Donaldson | April 24, 2015, 11:12 am
  50. Hi Andrea
    Havent been on the site for a while but if you go back thro the blogs you will see that my gynae problems go back many years to.Have had what was left of my TVT mesh removed 6 months ago but sadly I still have pain when sitting despite taking strong pain relief regularly ,am told this is either caused by scar tissue or TVTO problems which were out of my gynaecologists expertise The lady I saw whom I found to be very good and also very nice and understanding was Natalia Price who has a private practise in Oxford and also works at the John Radcliffe hospital
    I wish you luck and hope you can get help some time soon
    Hugs Carole

    Posted by carole jarman | April 26, 2015, 4:47 pm
  51. Hello everyone my daughter had a tvt last feb 2014 and has had nothing but problems ever since just had some of the mesh removed but the pain is worse now she has been told she has vaginal adenosis has anyone else heard of this.

    Posted by Susan somerfield | May 17, 2015, 9:33 am
  52. Dear Susan
    I am sorry that your daughter has been diagnosed with a condition on top of her TVT problems. It would be interesting to know which part of the mesh implant was removed? I would add that we are not told, by surgeons or our GPs that complete tissue healing takes 18 months. That is why it is so misleading to offer a mesh tape implant -as a minimal invasive procedure!! Minimal Procedure suggests something harmless and quick! The insertion process is certainly quick ( 25 – 30 mins. –
    if no complications arise in the operating theater!) – that is why these incontinence interventions are offered – and still carried out – with the devastating effects that all mesh sufferers experience sooner or later! Any surgical intervention which involves an anesthetic – is a fully blown operation and it should be treated with caution. None of us did appreciate this important point.
    I have googled these conditions which seems to relate vaginal adenosis/ Diethylstilbestrol DES. It makes interesting reading and I thank you for sharing this important fact with us via tvtinfo.
    Kind regards
    Ingrid Hardacre

    Posted by Ingrid Hardacre | May 17, 2015, 11:03 am
  53. Thank you for your comment Ingrid the mesh had eroded twice into the vagina and had to have two repairs that’s really when the most debilitating pain came into her life she has been back and forward to hospital will no real answers she is seeing someone else now and this is when this new problem has come to light not sure yet how it will be treated.im sure the mesh may be fully removed at a later date as this new problem seams to be more important our lives have been turned upside down by this dam mesh no ever said it could turn out like this.

    Posted by Susan somerfield | May 17, 2015, 1:51 pm
  54. I am amazed i just thought it was just me had my tvt op eight years ago not really been happy with the results. Now have pain along the pubic bone and a little bit below pain in my legs lower back have been diagnosed with fibromilgia and me now beging to wonder if this is right very frustrated have bowel problems and another prolapse both bowel and bladder gp not really interested been waiting a year for a routine follow up with my urologist as they have been hit by retirement and moving to other hospitals so waiting now till october 2015……

    Posted by julie a raven | May 17, 2015, 4:41 pm
  55. Hello Julie

    I am so sorry to hear you have been suffering for such a long time. So glad you have found tvt info and you now know that you are not alone with your difficulties. Please make sure you pester your GP to get you referred to another hospital or another urologist in your area.I would arm myself with the document from tvtinfo “10 reasons to avoid mesh” and go and see you GP again, or better still another GP ( female perhaps?) in your surgery. It is a rather lame excuse to say urologist is just about to retire?? Every medical team has a consultant and they work with registrars and junior doctors also many hospitals have womans’ health physio therapist in their team. If you have access to get to see someone privately, ( you don’t say where you live) I would recommend that you see a specialist privately, first. that way you could be seen within days rather than months! If you can go to Oxford you could see Natalia Price, who is very good and very compassionate. If you want to get in touch with me I would be happy for tvtinfo to give you my email. If you have time please read my two comments above, which would apply to any sufferer. Remember – report your difficulties to the MHRA and sign all the petitions, as explained above. Whoever you are going to see in the specialists fields – make sure you take the document with you to show that you are now i n f o r m e d. !!
    Take care
    BW
    Ingrid Hardacre x

    Posted by Ingrid Hardacre | May 17, 2015, 9:41 pm
  56. Hi i live in somerset and attend southmead hospital with a
    Specialist that covers the whole of the south west have other
    health issues my surgery has held onto a dhss form for
    weeks as the gp i see is not one of the senior partners
    Have taken paperwork into see the gp and been dismissed
    as i have so much going on under 3 consultants and a spine
    specialist. Went to see the nurse last week as was suffering
    with the burning pain along my pubic bone and below took a
    urine sample as requested had no examination tested my urine
    then got sent out as all was normal told to drink cranberry
    juice not enough evidence that i needed to waste the doctors
    time very frustrated feel like a burning tearing pain now the reason
    i went to the surgery i was bleeding never happened before so
    far not happened again and was not bleeding when i went to
    the surgery no other hospital is available to me spoke to
    my consultants sec he is working over his limitations with up to
    41 patients in one session above the guidelines i had to cancel
    one appointment due to a procedure on my foot which means i would
    not be able to drive app was april next available oct or jan

    Posted by julie a raven | May 18, 2015, 7:01 am
  57. Julie – this sounds terrible. Like the nightmare that so many of us have suffered, including being fobbed off.

    I don’t have much time to write here but you might like to listen to what I said about it on Woman’s Hour – http://www.bbc.co.uk/programmes/b019gy9r – and I have been one of the lucky ones. Do follow up what Ingrid says – can you arrange a private appointment at Oxford with Natalia and then,. assuming she sees the problems are mesh related, you will be able to ask for removal on the NHS list. There are only two known surgeons who can safely remove this stuff – Natalia and Sohier el Neil in London. Others may well be inexperienced and leave you more damaged. If the consultant does not understand your issues then you need to go elsewhere and get yourself referred by the GP to see one of those two women. It happens a lot – they see mostly out of area women to assess and usually remove the mesh.

    DO report to the MHRA, and I see that you have signed http://www.thepetitionsite.com/1/an-urgent-review-is-required-on-the-medical-devices-tvt-tvto-tot-and-the-use-of-mesh-graft-for/ – hope others do too.

    There is a great deal of information in these threads – do read them so you are informed and aware and can move forward.
    Best wishes
    Liz ‘

    Posted by LizRH | May 18, 2015, 7:32 am
  58. Hello Julie
    thank you for signing the petition on tvt-mum/petition. If you have a partner or a good friend or your mum or sister who could all sign as well it would be good to mention that they mention that their mesh suffering partner, sibling, daughter etc. has reported her adverse incident to the MHRA! It is really important that this is said on the petition websites, so that other sufferers understand that they can do the same.
    I am glad that LizRH has given you some more links and the proper ones for the petition site. If you do decide to go to Natalia Price at the JR ( her private practice is at the Manor House Hospital, just round the corner from the JR, Oxford. If you need a bed for an overnight stay – you are welcome to stay with us. We live about 45 mins away from Oxford by car or by coach -feel free to ask me. Make sure you have somebody with you when you go to any more meetings or consultations. Two pairs of ears hear better than one pair! If you don’t get any joy/satisfaction from you surgery/ GP you can always ask for a meeting with the Practice Manager, who deals with concerns before they get taken further up the complaints procedure. Failing that you could always speak to PALS at your hospital or there is PALS which deals with GP surgeries and would listen to your concerns. The Care Quality Commission would be another contact you could try. If you have time do read all the entries above, as Liz has suggested.
    Hope you can sort it out with your surgery and get a referral to Oxford and /or private referral. I paid £200 in Sept 2011. Remember you have the right to be treated and you have the right to choose your treatment center – under the Patient Charter. If you have a mind or time – contact your MP and give a brief statement as to what happened to you! Enclose the document “10 reasons to avoid mesh” from tvtinfo site. MPs need to know how patients are treated when the outcome is not as promised and the hospitals are not willing to acknowledge a patient’s suffering. You can be sure that your suffering is the same as many other mesh victims. Stay strong and be assertive to your GP, Practice Manager and the consultants you may see. Natalia knows a mesh victim when she sees them! She is totally committed to helping mesh sufferers.

    Take care

    Ingrid Hardacre.

    Posted by Ingrid Hardacre | May 18, 2015, 9:46 pm
  59. Thank you so much for all the advice have a gp appointment on the
    1st of june with a lady gp not holding out much hope but will be
    persistant today in pain again its the burning lot going on with other
    conditions as well.
    will my surgery send me to oxford i have no means of paying for
    a consultation as on benefits spoke to my consultant secetary again
    she cant give me another earlier appointment than oct if i go to oxford
    will my consultant get nasty with me am worried he will cut me off his list
    leaving me high and dry
    Sorry one of lifes worry warts.

    Posted by julie a raven | May 21, 2015, 5:42 pm
  60. Hello Julie

    Your best bet is your GP for the moment – you need to get them on board – so you can go and see Natalia Price. If you go via NHS referral it may take just as long to see Natalia Price, BUT.. at least you would be at the right place. I get the feeling that your consultant is pushing you away, like all ours did ( a defense mechanism – because they know full-well they cannot remove all the mesh safely!!) The removal is a very intricate and complex operation and you really can only trust Natalia to do a full removal if your tape is a TVT retropubic tape.
    I would not worry about how your Consultant would react ,,, if he is already too busy to see you … and already thinking about retirement, then I would think you are not a priority – because he knows you are one of the adverse incidents he would not want to own up to and probably has not intention to report your incident to the MHRA ( which he should do – as recommended) , because it would affect his hospital track record!! Though if he is retiring I should think it matters very little. It might be a good thing to ring Natalia’s NHS Secretary and ask how long you would have to wait to see her? I bet you it would not be as late as October!!! would you like her Secretary’s telephone number? Hopefully Liz might see this entry and give her comments on Natalia’s waiting list.??

    It would be worth ( and you need to be resolute about it when you see the Lady GP) to point out to her that there are only two surgeons in England who can competently remove all the mesh! There is another in Scotland, but that is too far to travel. Make sure you take the “10 reasons to avoid mesh” document with you for the GP. Please take someone with you to see the GP – it is too important to be alone in this process getting this referral! Do have someone who can go with you?

    Remember you have the right to be treated at a place of your choice! Ring the Care Quality Commission to see if they can reassure you re a referral out of your area. David Cameron stated only a few days ago that he promises that every patient get the right treatment.

    Closing comment – don’t worry about your consultant – he is not worried about you. Look out for what is best for you!

    Best wishes
    Ingrid H.

    Posted by Ingrid Hardacre | May 21, 2015, 11:14 pm
  61. Julie, Ingrid’s words are clearer than mine might have been. But I totally agree. I know that Natalia’s waiting list for removal on the NHS is 3 months, so it might be that long before being seen for a first appointment – or it might be shorter. But that is still sooner than October. I also agree with Ingrid’s comments about consultants – don’t worry about yours. You have a right to a second opinion too – this is a horrid situation and you need skilled care from one of the two specialists in the country. That is a key point to get across to your GP. There is a great deal of information on this site, and swathes of research that we have on the dangers of mesh – you are one of many and need help similar to that which we received.

    Good luck
    Liz

    Posted by LizRH | May 22, 2015, 5:42 am
  62. Dear Ingrid re post the 17th of May my daughter is going to see Ms Price on Friday the 5th of June hopefully to get this mesh sorted out the adenosis is still a mystery having to see another consultant about it not sure if it has been caused by the mesh no one knows they want to take more biopsys no one seems interested about the pain although her own doctor at our surgery is very sympathetic will keep you updated.
    Susan.

    Posted by Susan somerfield | May 30, 2015, 4:37 pm
  63. Dear Susan,
    thank you for your entry above and I am pleased that your daughter will see Ms Natalia Price – she will be able to advise you. Make sure that your daughter can take you with her – this is concerning both of you. Go into this consultation together – two sets of ears hear better than one!! It is very emotional to sit in an consultation when such a lot is riding on it – a chance to move forward and the sure hope to feel a bit better in the future after complete removal! Do not settle for anything less than complete removal. Make sure you get a written undertaking that Natalia Price is doing the removal herself – no other medic !! This removal op is a very specialized
    operation and must only be done by the most experienced and the most caring surgeon/ consultant – Natalia is that person. xx Blessings xx

    Posted by Ingrid Hardacre | May 30, 2015, 11:03 pm
  64. I had the TV T mush put in back in 2012 and since then I have had horrific problems. I had painful painful sex and I have cramping so bad that I cry and I’m just curled up in a ball! now I have bladder infections so bad that I have to be on permanent antibiotics to keep them from coming back also the mesh cause me to have urge incontinence which is where you have to pee all the time and you have accidents if you can’t make it to the bathroom on time so they put this in ur stand inside me and it seems to be working but then it started shocking me and not working properly so I just had it removed and replaced! I had such horrible pain in my urethra that my doctor went ahead and removed the little piece of tape that goes around your urethra that didn’t help at all. and when I would have sex with my boyfriend he could feel like a poking on his penis so we stopped having sex and that just ruined our relationship. I’ve had so many procedures and surgery is due to this match and it was supposed to be a simple surgery and it was supposed to fix it and it didn’t the 69 cotton said I had. so now I have to go in and have it completely removed I’m going to Seattle July 22nd to have the surgery I’m seeing Dr kobayashi! I’m scared I’m worried I don’t know what to expect I don’t know how major the surgery is because these meshes are meant to come out! These meshes need to be recalled all of them. It’s really sad what these meshes are doing to woman. It’s ruining our lives! I wish I never had the mesh put in I should’ve researched it but I trusted my doctor, I don’t blame him because he didn’t know that this would happen. He was my OBGYN and he’s a great gynecologist… He always listened to what I had to say. He was always good to me. It’s rare to find a doctor lIke that. I just am sick of the pain and suffering caused by thus transvaginal mesh. I can’t wait to get it out. I don’t know how much it will help but if it stops my UTI’s and the painfull intercourse I’ll be happy. To all the woman out there suffering because of this mesh inside them I feel for you and we need to stand up and fight because this isn’t right! If anyone needs to vent or talk I’m here. You can contact me if you have any questions, I’ve learned a lot about these meshes since I had it put in. My email is alaskangirl1981@gmail.com

    Posted by Renee Cook | May 30, 2015, 11:16 pm
  65. Hi Susan, Ingrid is right – take your daughter if you can. Write your questions in advance. Natalia is without doubt one of the most caring and skilled surgeons who can help you – she removed my mesh 4 years ago. Good luck, Liz

    Posted by LizRH | May 31, 2015, 8:57 am
  66. Hi Renee, your story is tragic and all too familiar. The whole mesh mess is appalling – and I just don’t understand how it continues to be used… money underlying care, no doubt. I hope that your obgyn there can help you begin to return to the life you should have which has been removed from you. Liz

    Posted by LizRH | May 31, 2015, 8:59 am
  67. Hello Ingrid thank you for your comments they are most helpful will Ms Price given her the written conformation at the consultation or will it come in a letter my daughters consultant gave her the option to have it removed by himself bikini line or by Miss Price which she would rather have as he only wants take out the right side he would leave the rest as he said if it’s not broke don’t fix it but then what happens later on in a few moths time she wants it out all out.can you give me any tips for the questions please it would be most helpful .kind regards Susan.

    Posted by Susan somerfield | May 31, 2015, 9:43 am
  68. hi Susan, get it all out. You don’t want bits of mesh left in you for all sorts of reasons – it leaches poison into you, it can ‘ball’ up and cut into internal organs later. He’s wrong – it will cause problems later and what little research there is confirms this. A TVT contact sent me this which is useful to an extent: http://www.youtube.com/watch?v=ebUGWXyQ8Ds&sns=em

    Ignore all the rubbish about Botox and nerve blocks – first part of the video but then listen about full removal and the
    difficulty caused by part removals – just listen to how many hours it takes for the surgery especially a full removal and then how much longer due to having a partial. Liz

    Posted by LizRH | May 31, 2015, 10:31 am
  69. Thank will do we see on Friday so with so hope things will move forward for the better.xxxx

    Posted by Susan somerfield | May 31, 2015, 10:46 am
  70. Hello Susan
    thank you for your reply on this site.
    I presume the consultant you refer to is the same consultant who put the tape into you daughter’s body? If that is the case, this consultant will also have known that there are problems with all mesh products including TVT slings. all mesh is a foreign body, which causes harm to the body! I would consider the offer of “experimental” part removal, by this consultant as “self serving”!!!! I would hedge a bet that he would like to have “a go” at removal, so that he can “boast” that he has done some removals and can use this as a way of coming across that he was helping your daughter, by offering the part removal.
    I would correct this consultant’s statement – “if it ain’t broken don’t fix it” – as very misleading, because if he removes only the arm which causes the pain on one side ( am I correct?) then by removing that arm he will disturb that tape and we know that partial removals are not always successful, because a disturbed tape will then set off all sorts of further problems. I suspect this surgeon is a man, who has never experienced childbirth, never had a difficult period pain or any other abdominal pain due to a foreign body in his body ??.
    I know that I sound very short and sharp to the point,but I like to be honest and obly want to share my own painful journey, because I would not wish this mesh mess on my worst enemy!! Like your daughter, I had also had offers of removal from 4 second opinions ( 3 of them in Germany – which was logistically not possible – but at that time I was too afraid to do anything in a hurry – and also I felt that they just wanted to experiment on me) I found that I felt I could trust not any of them to do so- I cannot explain this any better than it was a woman’s intuition; a woman that had been hurt by a product which should never be implanted into a living body implanted in a blind procedure, which goes through the most sensitive part of a female’s body.
    My parting comment would be – trust only someone who can do a good job on complete removal and can proof it. In the case of a TVT tape it can only be Ms Natalia Price – who is one of the best surgeons in this field, has over 100 removals to her credit to date – and counting. She is an understanding female and in the case of mesh removal wants to do her absolute best for any mesh sufferer.
    You need to ask these questions when you see Natalia with your daughter ( Or make sure your daughter asks them- while you are with her- in that consultation room. Remind your daughter of these questions in Natalia’s presence. that way Natalia will see that you have thought about everything that is important to you both and your families and your daughter’s future well being.

    I wrote a formal letter to Natalia ( taking two copies – one for Natalia – one for my medical records!) I had my husband sign it as a witness to keep it formal and for my own piece of mind.
    I requested that only she would perform the total removal ( please don’t settle for anything – partial – I am sure that would form part of the discussion ( it did with me!)
    In that letter I requested that she would confirm this in her consultation follow up letter.
    I requested that Natalia copy me in any letters to my GP or any consultants I would have to see should that be necessary. I also asked Natalia formally to give me permission to give me all copies of my medical records from my case under her. ( i did not pay for those!) For me it was most important that she gave me the removed tape – which I received immediately I woke up in recovery. I regretted that I did not ask Natalia, at that time. to send away a very small fragment to be analysed for infection , inflammation etc. Your daughter may want to consider this point. Since my removal op we have learned, through the meshie network, that the removed tape can be stored and can be analysed , privately. Overriding all else it was very, very important to me to see that tape in a jar and have it in my hands. I cried with relief when the tape was handed to me. I made a point when I came round in recovery that I asked the name of the consultant , who cared for me in recovery. I also made a point of asking him the time and I asked to see my wounds to see if I was badly bruised as I was so horribly on insertion. I was relieved to see with my own eyes that I only had very little bruising in only two parts out of all my 5 incisions! Natalia and her team and especially her senior anesthetist, Hon.Dr. Dorrington were brilliant.!!

    Susan you and your daughter may have more questions to Natalia, put those in your formal letter, but I feel that my points above are the most important. do be aware that you only get 30 mins if you are private and half that if you are NHS. But don’t feel pressured regarding time – but Natalia is a very busy lady and it must be difficult for her to remember everything she is being told, so having it written will only help her.

    Sorry to be so lengthy, but I feel that you want to know more – and so you should!!

    Remember you do not need any “loyal thoughts to the original consultant. Remember as part of professional etiquette Natalia will be writing to your consultant after the removal operation as she will to your GP. You want copies of both those letters from Natalia. That way you don’t pay for those.

    Forgive me for this long comment, but it has been a “healing” and “cleansing”experience for me to be able to put this down to help others.

    Blessings to you and yours
    Ingrid H.

    Posted by Ingrid Hardacre | May 31, 2015, 11:25 am
  71. Just a quick answer Ingrind before I fully digest your reply no it is a different consultant as the person who put the mesh .xxxxx

    Posted by Susan somerfield | May 31, 2015, 11:31 am
  72. Thank you Ingrid I have now read your comments taken on board what you have said thank you for taking time to help us with our concerns I will keep you updated to our progress.xxxxxxxx.Susan.xxxxxxxxx

    Posted by Susan somerfield | May 31, 2015, 12:20 pm
  73. Hi. Its great to find this site. I had my TVT in November 2011 and have since suffered with recurring bladder infections.
    I have been scanned and had the urodynamic test but the doctor insists that it is just a coincidence that these infections started straight after my operation.
    I am now on a constant low dose antibiotic to try to settle the infections but once the bug resists the antibiotic they have to change to another. I am growing concerned that I will become resistant to all antibiotics soon and then what? Also my serum Creatinine levels are slowly creeping up which started from 2012!
    I believe the TVT op has caused this.
    Intercourse is painful and therefore stopped and I now suffer with permanent pain in my right side. The doctor is now sending me for another ultrasound as the last was in 2013 but I have had no referral as yet.
    Many thanks again for the info
    Jeanette L

    Posted by Jeanette Lloyd | May 31, 2015, 9:26 pm
  74. Hi Jeanette, It is indeed a great site! You have had a miserable time and I have no doubt that the mesh has caused your issues. Ultrasound and MRI scans do NOT show up mesh although there is a ‘translabial scan’ that has been used in the US that does help. You need to see one of the two women who can assess the situation with the mesh – they are both mentioned on these discussion boards: Natalia Price in Oxford or Sohier el Neil in London. If you can afford it, arrange a private consultation initially to have time to discuss the issues and go from there.

    Please read all you can from this site – we have all been through a great deal of research and know what you are dealing with – we are all sufferers from all walks of life. You will find more information here than anywhere else but there are two new sites to research: https://slingthemesh.wordpress.com/about/ and meshsurvivors.org

    Best wishes, Liz

    Posted by LizRH | June 1, 2015, 6:27 am
  75. Thanks for the link, Liz. This is a great site to launch the Sling the Mesh Campaign – take a look at the patient stories. Just what campaigners need to move this forward and get some positive action.

    Posted by tvtinfo | June 1, 2015, 6:46 am
  76. Thank you Liz. It is great to find like minded people that have suffered in the same way. I knew I couldn’t be the only one. This shouldn’t be happening as I’ve now learned this procedure has been around for 10 years and still be recommended!
    This will be my second ultrasound so I’m planning on going back to the doctor to seek a referral
    I think 4 years is more than enough time to wait.
    Before this op I never ever had a bladder infection and yet now I’m never without. I’m sure this is having an effect on my kidneys too

    Posted by Jeanette lloyd | June 1, 2015, 6:56 am
  77. Message to Jeanette. Hi –
    I had a translabial scan done at the JR in Oxford following my mesh removal. The translabial instrument is one that is used in ante natal care, so most hospital should have this equipment.
    I am sorry to say that all consultants appear to go down the same, delaying tactical, route of offering CT scans and MRI scans which are more time consuming and also more expensive, when a trans labial Ultrasound will show the tape clearly, provider the equipment is working o.k. It took me 9 months to find out this fact, when I had second opinions in Germany. Take this information to your GP or consultant and “demand” that scan. It is a very quick scan. Do make sure that you ask the radiologist that you would like to watch the screen during the procedure, ask them to take copies/screenprints of the various areas and ask for copies of those pictures to take with you, or that they send them to you. An orthopedic patient recently told me that she asked her radiologist if she could take a picture of the scan, with her mobile phone, as he discussed the scan with her. That would be an excellent way of keeping a record for yourself.
    Of course it could be the case that your consultant uses CT and /or MRI scan under the pretext of excluding other problems, as did mine. However most mesh patients did not have any pain in that region before the mesh insertion, so research has shown.
    In due course you will find my copies (anonymously)of such a scan on the new FB site which Liz has mentioned above.
    https://slingthemesh.wordpress.com/about/
    Hope all this helps and gives you hope x
    Best Wishes
    Ingrid H.

    Posted by Ingrid Hardacre | June 1, 2015, 8:15 am
  78. Thank you Ingrid this is really helpful. I shall be making a visit back to my GP

    Posted by Jeanette lloyd | June 1, 2015, 11:02 am
  79. Hi Jeanette. It is important to know that you are not alone and that support can be given if needed from this blog site. Good luck. Ingrid. x

    Posted by Ingrid Hardacre | June 1, 2015, 11:30 am
  80. I had a TVT 7 years ago. I was sold to me as a simple cure all procedure and in the short term it was. That’s until the recurrent uti started and a hip pain which over the years progressed to a limp and problems walking too fair and an inability to get up stairs I thought this was arthritis. For a few years the infections settled. Until 18 months ago they started frequently again with painfull sex. So I went to a urologist has cystoscope and although I told him there was a problem with the tape he ignored me and said there was nothing wrong. So off I went with the pain and another infection. This became so server I examined myself and found this thing has eroded into my vagina and there was a huge hole. A lovely gynocologists removed some off this and fixed the hole. I thought that’s the end of that but no. A few months later an even worse pelvic pain started with persistent uti and resistance to antibiotics and yes incontinent again. Then the run around trying to find someone a urogynocologist who can get this residue out. I have been in pain and ill for 6 months so next week I see this doctor I hope I am not fobbed off again it’s ridiculous. I neglected to say that after the erosion was fixed that hip pain disappeared over night after 7 years and it has not come back. Thank goodness. When I read all these stories I can’t believe what a horrific product this is all over the world I am in Australia. Lisa

    Posted by Lisa mckay | June 1, 2015, 12:16 pm
  81. Thanks Lisa. This sounds more common than I first thought and seems to have impacted in a lot of cases to many women’s lives including ours
    Why has nothing been done? And why are these ops still taking place?
    I think there is a lot of ignorance surrounding this procedure which needs to be addressed

    Posted by Jeanette lloydi | June 1, 2015, 1:24 pm
  82. You are right – the op is terrible and should be stopped. There are over 100,000 litigation cases in the US for mesh problems – yet the press don’t latch on. Those of us willing to fight have tried – I was on Woman’s Hour, some have been in the Daily Mail, many of us writing to MPs, to the MHRA, involved in working groups, delivering or setting up a petition, writing to professional bodies. The result is… nil. Why? We can only assume the money underlies all this. The Scottish Survivors have been brilliant and had a ban on mesh in Scotland till further notice and this is partially due to the public petitions system and an excellent journalist. We now have an excellent journalist working with us in England – see https://slingthemesh.wordpress.com/about/ and need to support her.

    Liz

    Posted by LizRH | June 1, 2015, 2:10 pm
  83. Morning had GP appointment was told there is lots
    of things on the internet you could drive yourself
    mad looking not going to refer me to anyone else
    as it muddys the waters instead i am
    to be refered to post menopasal bleeding clinic
    i did have a speculum inserted and she found
    some changes. Was diagnosed with spondulosis
    and carpel tunnel syndrome and had fibromilgia
    confirmed very tuff day

    Posted by julie a raven | June 2, 2015, 5:40 am
  84. hi Julie, It sounds really awful for you and you have a great deal of pain to deal with. Obviously there may be a range of causes to your pain and problems but – knowing what so many of us know through painful and life altering experience -mesh can cause a number of the issues you describe.
    I’ve looked through your posts and see that your GP seems to dismiss you. Is there another GP you could see in the practice? Can you take in someone with you who will have read some of the research or entries on this site? Is there one question that you need to put to the GP such as: I need to know whether or not the mesh is the root cause of my problems and there are only two specialists in the country who can assess this?
    It’s worrying that you have had so little support. I’d be tempted to research other local GP practices and move.
    You need to have a few key facts about the TVT procedure at your fingertips- and know that it’s been banned in Scotland and is the focus of over 100,000 legal cases in the US with payouts of $$$$$$s (see meshmedicalnewsdesk.com).
    I’m sure others will make more suggestions of support.
    Liz

    Posted by LizRH | June 2, 2015, 6:11 am
  85. Hello Julie. I am not able to post to you at the moment. It won’t let me. Ingrid

    Posted by Ingrid Hardacre | June 2, 2015, 10:26 am
  86. Hi Julie . I have tried several times. It might be because my response is too long?? If you would like. Liz can give you my email address and I will send my letter to you by email. Let me know. Ingrid x

    Posted by Ingrid Hardacre | June 2, 2015, 10:29 am
  87. Please could TVTinfo give Julie our email addresses if that’s OK. Liz

    Posted by LizRH | June 2, 2015, 10:33 am
  88. Thank you, Liz. Good idea. Ingrid H.

    Posted by Ingrid Hardacre | June 2, 2015, 10:41 am
  89. Yes please would be helpful just waiting for the post menopausal
    bleeding clinic where i am told they do a proper examination
    just what i need to fight with

    Posted by julie a raven | June 4, 2015, 3:12 pm
  90. Hi, I’m new to this site and I have been reading your feeds. I had a TVTO inserted in 2014 and it has been one hell of a journey since. I have used this site to help me find a surgeon to help me, I saw Suzie Elneil at ULCH and I am due to have the tape removed with reconstruction etc. I have had many problems from the moment it was inserted, my main problems are skin loss in the vagina, leg collapses, discomfort when I void urine and bowel problems. I have looked over my consent form and none of these complications were mentioned. I have returned to theater under the consultant who inserted the TVTO for erosion in 2014 but symptoms still remained hence contacting Suzie Elneil. If I was aware of these complications I would not have gone ahead also if I had known that the tape could not be removed I would not have gone ahead with the surgey. I truly feel for you all.

    Posted by Sonia | June 4, 2015, 6:43 pm
  91. 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. I had my procedure done initially in the UK but am now living Australia. Thanking you Andrea

    Posted by Andrea | June 4, 2015, 10:59 pm
  92. Hello Andrea

    I am in Brisbane your story is exactly mine. The tape eroded and yes I had it decided a portion removed and vagina repaired. I have gone through pillar to post with doctor had all the test you have had. Now I have seen a professor. Basically the tape according to her cant be removed. I have to see a pain specialist, she hopes to control the infections. I see a physio who specialises in this she is great and if need be she can surgically treat the incontinence. I feel now I have been told the truth and I can work with that. Do you know there is a class action in Australia can’t see how it can fail. If there is some compensation to have I want it.

    Regards. Lisa

    Posted by Lisa mckay | June 5, 2015, 12:26 am
  93. I’ve not heard of this procedure but it does interest me.
    Maybe some of the sufferers in the USA have more idea on it
    Plus I want to know what the long term damage of constant urine infections and antibiotic care is doing
    Jeanie

    Posted by Jeanette lloydi | June 5, 2015, 7:36 am
  94. HI Andrea. It sounds as though you have at least found a Urologist who is realistic and most of all emphatic to your situation. Let me make some quick inquiries with a trusted friend. Be in touch Ingrid.

    Posted by Ingrid Hardacre | June 5, 2015, 8:06 am
  95. Dear Andrea (?) and Lisa ( McKay)

    Girls, get a blog going in Australia, so you can feed into the Australian Public to create Mesh Awareness. Most medics find it easier to ignore ( denie) that TVT /mesh implant problems exist. Historically all mesh patients have been treated the same way- pushed away, successfully, for years and years !! Medics who implanted these meshes, for years, also knew that they would not be skilled enough ( they were never shown, nor did they ever expect to have to take mesh out!)m It would damage their street credibility – to own up they would never be able to remove mesh fully – it was easier to say – say they are not aware of any problems! This spin paraphrasing has been created by all Mesh Manufacturers and fed to their clients (Doctors, Hospital commissioning services and Health boards in all corners of the globe) as part of their aggressive marketing strategy, where only profit counts and patients safety and well being is ignored.
    If Liz, or any other Mesh network. researcher reads this – perhaps they can give you information on what is happening in Australia.
    Andrea please report your averse incident to the appropriate Health Regulatory Authority in Australia. Your Urologist, or her secretary, would be able to give you the contact details.
    If you have not done so, please sign the petition on tvt-mum/petition. Please give a brief outline of your distressing mesh journey, not mentioning any hospital or doctors etc. While you await more information from us your fellow sufferers – do take time and read all the posts above. There are lots of links and support information for all sufferers of mesh.
    w. BW
    Ingrid Hardacre

    Posted by Ingrid Hardacre | June 5, 2015, 8:48 am
  96. Great response Ingrid. Great to have your input from across the world but so sorry about your mesh problems – so many of us…

    Sorry – I don’t have anything on Australia ;-( but I know that there are women with problems. Have a look at http://www.meshmedicalnewsdesk.com for a good worldwide spread of information as well as following Ingrid’s suggestions.

    Liz

    Posted by LizRH | June 5, 2015, 9:53 am
  97. Hello Jeanie
    In answer to your questions – what
    If you want to know more about the procedure and the devastating effect mesh Incontinence Surgery can bring, read all of the posts on this section “The problems with tvt surgery and synthetic – sub urethral slings.” there are lots of links which leads you to more information. It does require time, but it is worth spending time doing this research on this well respected and well informed site. The creator of this tvtinfo site has worked hard, is always researching thoroughly before giving information to this blog site. All research is supported by the original source, so you can read all original papers, to know that this information is correct.

    In answer to your question:- “what the long term damage of constant urine infections and antibiotic care is doing” As a non medical lay person, I understand that – Essentially any incontinence surgery is retention surgery!

    This means that instead of all urine flowing out emptying well enough (as it needs to because Urine is an acid waste product!!) – some urine flows back into the bladder. Retention eventually will cause infection and inflammation and will affect the bladder, which is a muscle, not to work efficiently. The bladder wall will get harder (Calcification of the bladder wall) and cannot expand or shrink well enough. Urine is a waste product and if left it will create stones as the acid crystals form together. Stones can cause extreme pain in bladder and kidneys and some stones have to be removed in an operation, which would mean another hospital stay and all the recovery period that any operation can bring. If the surgery is not done well – not adjusted exactly to your anatomy – e.g. the urethra, bladder/ bladder neck, raised/ stitched up at too high then urine cannot leave the body as it is designed to and all the retention complications create problems in the body.
    In the case of mesh sling incontinence surgery – a vital extra complication arises. It is well knows that once a plastic mesh tape is implanted in a living body the tape shrinks (as much as 19% over 18 months approx) That means that any adjustment made during the initial mesh insertion operation, will be made worse because the tape being tighter after implantation will give you more retention. We know that mesh plastic products should not be implanted into a living body. We further know that all patients across the world report more or less the same problems, so it is not your body that is at fault, as some patients have been led to believe, by their implanting medics. Instead we need to be clear that it is the plastic product that creates the problem and they way it is implanted.

    Worst case scenario some people have to had their bladder removed because of severe problems after several years of pain and anquish following mesh incontinence surgery.

    I hope this help you to understand that it is really more safe to wear pads and look at incontinence products, but most of all it is better to retrain your bladder habits and re activate your pelvic floor muscles. Surgery is not always the answer – I have learned from bitter experience.

    Ingrid Hardacre

    Posted by Ingrid Hardacre | June 5, 2015, 10:51 am
  98. Thank you , Liz. Ingrid.

    Posted by Ingrid Hardacre | June 5, 2015, 10:54 am
  99. Thanks Ingrid for you support and understanding. I know there are many class action lawsuits happening in the USA against the manufacturers of these synthetic tapes and slings. Are you aware of any that are happening in the UK.
    I don’t know who I feel the most anger towards……. The manufacturers of the productsor the Surgeon who actually put this thing inside of me without informing me that years down the line I would be having to have corrective surgery to try and relieve some of the pain and associated infections due to the materials they put inside of me

    Posted by Andrea | June 5, 2015, 11:20 am
  100. Hi Andrea

    You are right to feel angry on both accounts. If you read more on this page you will see the general consensus, which is verified by research: – It is a case of a flawed product with a flawed procedure. They go hand in hand.

    There are many view points – one amongst many – suggested that Doctors , Surgeons and Hospital commissioners were mislead by the very convincing marketing strategies from mesh manufacturers into believing that this procedure is safe and that the product is safe. However we do know now, after many years patients living with the fall out of mesh operations, that this is not so. All medics knew this long before any suffering patients did – that these mesh products were not trialled, there were never any robust clinical trials conducted by any independent medical authority and that these products were allowed on the market via notified bodies who were not asking pertinent questions about patients safety or if the product is actually fit for purpose.

    None of us patients are experts in either medicine, law or product licensing. we just live with the consequences of mesh injuries.

    Read more on this page. If you can come to the UK you could see the two specialist her in England, who depending which mesh product you have and they may be able to advise you on removal.

    We just know that partial removal is not ideal, which is what you have told your new urologist. If you go on the Internet and search for tvt problems in Australia or seek out meshmedicalnewsdesk – you will find lot’s of information there.

    Good luck Hope this helps.

    Ingrid H.

    Posted by Ingrid Hardacre | June 5, 2015, 12:17 pm
  101. I think the responsibility lies with the government.
    They push the NHS to lower waiting times and push through operations quick to make their figures look good.
    The NHS has responded by giving us a quick fix with apparently quicker recovery and non invasive procedures without noticing the implications
    The only people to are is the patients.
    This needs to be addressed publicly
    Jeanie

    Posted by Jeanette lloydi | June 5, 2015, 1:33 pm
  102. That should read”to have suffered”

    Posted by Jeanette lloydi | June 5, 2015, 1:35 pm
  103. Hello Ingrid Yesterday went to see Natalia Price in Oxford to see if she could remove the mesh my daughter had inserted in February 2014 what a lovely woman so kind and compassionate time to listen and yes she will remove it all thank goodness so will keep you all updated and thank you all for all the help you have given with much love to you all.Susan.xxx

    Posted by Susan somerfield | June 5, 2015, 2:47 pm
  104. Good luck. Let us know how she gets on

    Posted by Jeanette lloydi | June 5, 2015, 3:53 pm
  105. Hello Susan and daughter. so good to hear that you had a successful appointment in Oxford with Natalia. Knowing that mesh will soon be out of the body, will help her to cope this last little waiting time. Good News, Keep us updated.

    Well done

    Ingrid h.

    Posted by Ingrid Hardacre | June 6, 2015, 9:57 pm
  106. Very good news Susan. Your daughter will be well looked after and I’m so pleased that things are going in the right direction. You must be incredibly relieved. My mum said that I looked different after having my mesh removed… out off the darkness. Liz

    Posted by LizRH | June 7, 2015, 6:56 am
  107. Thank you ladies for your positive comments we carnt wait for the day the mesh is out the pain is getting worse day by day the lovely Natalia loved me up and said to me she would look after my baby God bless her.xxx..lots of love to you all Susan.xxxx

    Posted by Susan somerfield | June 7, 2015, 7:55 pm
  108. Hi, I have been reading some of the comments above with concern. I stumbled on your page after typing a search for burning sensation in internal lower abdominal area after tvt surgery. I had tvt surgery 6 days ago and while still on sick leave from work due to recovering from the op, went to see my doctor today and informed him I have a continuous burning sensation in my lower abdominal area. He prescribed me antibiotics to treat what he thinks could be a urine infection which he said is very common after this type of surgery. After reading the above I want to cry since I am wondering what I have done to my body and what pain and infections etc are coming my way. Yesterday and today I have wet myself on a few occasions because I couldn’t get to the toilet quick enough after an instant urge to pee. Am I simply experiencing post op side affects or am I in serious trouble only after 6 days. Please give me some advice on symptoms after survey etc. Thanks.

    Posted by mi | June 16, 2015, 12:21 am
  109. Hi Mi
    My infections started straight after surgery and I have suffered ever since from them on a monthly basis
    I was not told this would happen and feel I should have been
    Yours may just be post operative as I have friends that have been happy with the procedure and no side effects
    You will need to monitor and if they reoccur then push and follow up
    I had my second scan last week and surprise surprise it showed up as normal
    When Mentioned to the doctor and radiographer Translabial scan, they both had never heard of it! So I asked them to look into it!
    The trouble is they don’t seem to know enough about the complications and if they do they don’t want to do anything about it
    I hope you recover soon
    Jeanie

    Posted by Jeanette lloydi | June 16, 2015, 10:10 am
  110. Hi Jeanie, thanks for providing me with some feedback so quickly. I was experiencing horrid burning pains last night and went to the toilet 4 times during the night which I have never done in my adult life. I do very much hope I fully recover from this operation now so I can get back to doing some regular exercise and lead a happier, normal life without fear of wetting myself. I am in my mid forties and have worn sanitary towels/pads all day and night for over 20 years so I had hoped this tvt operation meant I could be pad free. I really feel for all the lady’s above that regret their surgery and hope the medical professional will do more to highlight the known risks and develop better care and solutions for ladies that experience problems. My consultant told me last week before I was discharged, that I will receive an appointment to see him in about 3 months. I will take your advice and monitor my recovery closely, if things get worse I will be ringing the hospital ward number provided and ensure I receive a follow up appointment quickly. I will let you know if I develop any further problems.

    Posted by Michelle | June 16, 2015, 11:42 am
  111. Hi Michelle

    I am so sorry to hear that you are having such problems. Although Jeanie may be right that it is just post operative recovery. You may have a urinary infection following your TVT surgery. However it is an established fact ( research supports this); adverse incident cause, that having this tape ( irritant) inside you will cause a new type of incontinence – which you have = an irritable/ overactive bladder syndrome , which causes Urge Incontinence. The sad fact is that we are not told that this TVT tape procedure only cures Stress Incontinence, but they withhold the fact that other incontinence follows!! I feel for you as I was in exactly the same position as your self. Urge incontinence was such a strong adverse side effect for me, that I had episodes like the one you describe for months afterwards. After 9 months of the insertion I could not reach the loo in time on a frequent basis. After 16 months of upsetting side effects and the main component have constant pain, I was lucky to have the complete tape removed in Oxford.
    If you want to talk to me ring me. I have some talk time today. 01327 85 77 68. I will ring you back on a landline only. I would urge to ring the hospital ward and speak to Matron of that ward and explain that you are worried and can she get word to the consultant you saw. However the consultant you saw may not be the person who performed the operation? At only 6 days of having this tape put in, the tape has not settled into your body. There is always the option of having it taken out , if your surgeon can do that? Also speak to your GP and question him if he will report this adverse incident to the MHRA. You should also report this incident to the MHRA yourself. You may be prescribed some medication which is basically a drug to make your bladder more relaxed, but may make you drowsy. I hated feeling so drowsy!!
    If you have time read as much on this page as possible. Do mind however that you do not sit too long, after this operation. You should be resting laying down with legs elevated. Feel free to ring me. Athough Jeanie is correct that some people have fared well with this op. Some had no problems. Research however reports that problems can occur either straight away or even years later. I would be interested to know which hospital treated you and wondered how much information you received before the operation about this procedure. This blog site is one of the best regarding information and it is created to give support to those who struggled and are unhappy with the unexpected problems that have occurred, rather than hearing about people who think they are happy with the procedure they have received. the point I am trying to make is – If we had not had any problems with this procedure then there would be no need to have such a brilliant support site. We get told about success rates and the failure rates being low – however when it is you who are part of that failure rate – then it becomes really distressing and I feel for you, because, like many others I have been where you are.
    Kind regards
    Ingrid H.

    Posted by Ingrid Hardacre | June 16, 2015, 12:48 pm
  112. Thanks Ingrid
    I agree that you need to move quickly on this as I am still trying to get help 4 years on and believe that surgery may no longer be an option for me
    I am waiting for my doctor to now write to the consultant that I was under to express my concerns. This has been a very long drawn out process for me and I hope you get your situation resolved sooner rather than later like me

    Posted by Jeanette lloydi | June 16, 2015, 1:01 pm
  113. Hi Jeanette.
    Yes all these things take time. Time is wasted in particular that we are repectful to surgeons and consultants and deep down we have trusted them and have been deceived and put on a slow burner by them because some of them really are not able to help – to take this stuff out and they are not brave ( or honest?) enough to actually tell us that they are not skilled enough to take mesh out completely. But have any of us been quick enough on our feet to ask these very important questions in a, on off, clinic appointment which lasts max 20 mins under NHS guidlines. this is why it is so important that we raise the subject of incontinence surgery to the fullest effort. Otherwise the systems will continue to produce failures like poor Michelle , above.

    BW Ingrid H.

    Posted by Ingrid Hardacre | June 16, 2015, 1:59 pm
  114. Hi Mi and Jeanette.
    Yes trans labial Ultra sounds is the best way to see the tape position. And sadly, yes, the Radiographers know very little about all the conditions they are employed to check on. ( or they may not want to admit that there problems- i have always asked have you seen other patients with these mesh type problems?) It is useful though to quiz them while you are being treated – so they know that patients know their stuff, albeit late , through their unexpected and disappointing outcome.
    Ingrid

    Posted by Ingrid Hardacre | June 16, 2015, 2:13 pm
  115. I did this on Friday and unfortunately it annoyed her to the point that she said there’s nothing wrong and she hadn’t heard of such a thing. Then stopped speaking
    I felt very awkward

    Posted by Jeanette lloydi | June 16, 2015, 3:47 pm
  116. Oh, I am sorry you had this experience. It shows that these are medics who probably been told to keep quiet – I was this the Radiologist? We have long suspected that there are conspiracies going on with mesh – that is why it is important that we tell a lot of people what we have been through and that we don’t wish this upsetting, unhelpful treatment on any one else. You can ask for a copy of the scan pictures that she has taken. You apply through the Medical Records Department.
    . It is upsetting when you are looking for a way forward. Let us hope that people read this page in order to be informed better.
    Ingrid xx

    Posted by Ingrid Hardacre | June 16, 2015, 5:11 pm
  117. Hi I had this procedure in 2001. At the time my mum had just died and quite frankly my head was not in a good place. The procedure never really worked, but at the time I just didn’t need any more hassle, so I just got on with it, if anything my bladder issues appeared to be worse, I have now discovered my bladder problems were more physiological. I think I have been one of the lucky ones because I don’t seem to have had any major side effects, but having read some of the above I do now wonder if there was any nerve damage, I have had quite a lot of bladder infections, and actually have had bouts of exhaustion since having the procedure which I’ve always put down to stress or just getting older, I know this is nothing compared to others but it has left me wondering

    Posted by anne cox | June 16, 2015, 6:23 pm
  118. The scan was done at my doctors surgery on Friday. This is the second scan so I knew it was a waste of time
    The consultant that I was originally under has asked me to email him and the doctor has said she would although he didn’t perform the op himself

    Posted by Jeanette lloydi | June 16, 2015, 7:55 pm
  119. Hi my journey just goes on had an internal scan now all appears normal was told
    maybe i need some pessaries that contain estrogen as this will stop the burning inside
    as no signs of any infection in my urine and on the swabs taken so having a scan now its
    A belt and braces approach she could see i was in pain the tvt tape nothing to do withher
    so need to go back to the consultant and have a chat GP not helpful at all tried the consultants
    secetary again was told if i cancel my oct 2015 i will be offered one in feb 2016 fed up stressed
    i have several other conditions and struggle most days cant see an end to all this so now take
    One day at a time and put life on hold

    Posted by julie a raven | June 17, 2015, 8:58 am
  120. I would advise you not mention the hospital names or consultant names (where mesh implanted and who did it) pubicly. Thank you.

    Posted by tvtinfo | June 20, 2015, 12:19 pm
  121. HI Julia,
    So sorry that you are still not much further, although your scan appears normal, which should be reassuring! Have you made a plan with your GP what you consider the most pressing of your worries? If you had such a plan that you could discuss with your GP then that may help you to move forward. I would consider it worth while to have a meeting with your GP, the Senior Partner of the practice and the practice manager. Sometimes another GP, a senior may have more experience – could result in a better understanding. Although TVT info asks us not to mention hospitals and consultants, on the above entry, it is important that you are understood by your consultant and your GP practice! Perhaps you could re assure me that you have reported your adverse incidents, with all your symptoms to the MHRA! The MHRA continue to maintain that adverse incident figures are low, but that is only because up to now patients have not known where to report to. I suspect that your ( not helpful – your words – GP) has never mentioned to you that your should report your case to the MHRA? NHS England however claim that GPs are advising patients to report their adverse incident – which is definitely not the case, as far as I could make out from other mesh patients that I have been in touch with over the last 3 years, the time I have been active on various forums. What is more worrying, however, is that the medical professionals we deal with will not acknowledge that our problems is caused by the insertion of the plastic products used as slings, in our bodies. The only testimony we have to support this fact is, that women who had their tape removed have had improvements in their general conditions and they are all grateful to be mesh free! Unless patients manage to make some sort registry, collecting all important incidents data, which could be presented to Authorities such as the MHRA, Health watchdogs and Public Health Ministers, we , as patients will not be considered “reliable witnesses”! This statement was in fact made by the Head of the MHRA when he was invited to speak to the Scottish Parliament and answer questions on the safety on mesh devices in a Public Petitions Meeting , Tuesday 24 February 2015. this is the link. You can find this meeting by putting in the date on the Scottish Parliament Website as below. http://www.scottish.parliament.uk . I do hope, Julie that you are able to make a decision, that you feel is right for you. Have talked to organisations such as SEAP? They are Patient Advocate Services. They have helped me in my difficult journey. Check them out on the Internet to see if you have any in your area. They talk to you over the phone.
    BW
    Ingrid H.

    Posted by Ingrid Hardacre | June 21, 2015, 2:45 pm
  122. Hello everyone my daughter Michelle has now got her appointment for the removal of her tvt mesh it will be the 11th of July in Oxford so will keep you posted on the progress .love and hugs .xxxxxxx Susan.xxxxx

    Posted by Susan somerfield | June 23, 2015, 8:43 am
  123. Good luck.
    I have yet another UTI. Oh well one week free from infection isn’t bad!
    Four years later I hope they can sort me soon!
    BW
    Jeanie

    Posted by Jeanette lloydi | June 23, 2015, 10:55 am
  124. Hi Susan. that is great news and really quick. Well done for persevering. Positive steps forward. Well done. to you both Ingrid H.

    Posted by Ingrid Hardacre | June 23, 2015, 1:58 pm
  125. Hi Jeanette L. Let us hope you can get the help you need. UTI’s are no fun! BW Ingrid H.

    Posted by Ingrid Hardacre | June 23, 2015, 1:59 pm
  126. has any one got a vaginal pain that cannot be diagnosed as mine is driving me mad.I take 900mgs Gabapentin 3 times a day plus 2 tramadol when needed yet I still cant sit without pain.so my “pain killers” are not doing what it says on the box!!I had the remains of a TVT mesh removed in Oxford last Oct and had hoped that would end it,but things are worse than before.I need a friendly chat with some one

    Posted by carole jarman | June 23, 2015, 4:55 pm
  127. Hi Carole
    I get lower right sided pain constantly and intermittent stabbing pains that shoot right inside my vagina. Usually if I’ve walked quite a bit. It stops me in my tracks. Sometimes wake me at night too
    Sorry your removal wa not successful
    BW
    Jeanette

    Posted by Jeanette lloydi | June 23, 2015, 8:05 pm
  128. Hi Jeanette,
    I get exactly that pain for the same reason and at times its severe. But I have had
    A revision after a significant erosion and am told it is tight scar tissue and the ends of the tape that remain.

    Lisa

    Posted by Lisa mckay | June 23, 2015, 8:57 pm
  129. Thanks Lisa
    Did they say if there was anything they could do for this or do we now have to live with it?
    I notice that I also have slight lumps one swellings on both right and left sides. Probably not noticeable to anyone but I can see and feel them
    I think it must be where the tape is attached
    BW
    Jeanette

    Posted by Jeanette lloydi | June 23, 2015, 9:33 pm
  130. Hi Ladies,- Carole J. , Jeanette, Lisa McK.

    The pains you describe stabbing pains were the exact ones I had when my tape was in. Glad someone mentioned this fact, as I thought I was the only one getting these. Since my complete removal I did get them occasionally. And even now I get them very , very occasionally. As Jeanette says it is usually after activity, such as walking or leg lifts ( stairs – going up) Can I ask each of you;- Have you asked /requested the copies of your operation file on removal – this should include the consent form copy – if you have not been handed that on the day you signed. Request also your nursing records. Some hospitals charge – others don’t. Reading those notes can reveal information that ‘ would not have been explained. I did not give up and asked for referrals to a special women’s pain consultant in the JR, Oxford. it was a long set of appointments, but so well worth it. She recommended that my GP should prescribe a Pepper cream, called Axsain0.075% which I used on my groin pain areas. Since it is capsicum cream it contains chilli pepper, so it warms up the treated areas and lasts right into the next day. It continues to heat when you are in Water ( I work in water) It is a topical pain killer, but it is at least natural BUT you cannot use it inside you!!! Also avoid eyes, because if you touch other parts they too would get heated up. Similar products are called “Fiery Jack”. Since we all have scar tissue inside our vagina, as it was one operating field, we have scarring there. It was explained to me ( because I did not give up!!) , by a specialist Woman’s Pelvic Floor Physiotherapist, that working with a dilator would help to stretch the vagina. It takes some training and it takes time! Explained also was that if that intimate part of our womanhood is not used it will shrink ( cannot explain this better) !! It is a case of use it or lose it! However most mesh patients have/had issues with sexual intercourse since mesh insertion and it may be that this may always be a problem area. I know that after using the dilators ( they come from the GP on the NHS) I did get these stabbing pains back occasionally. Needless to say we have given up on intimacy. I can only say that we need to be aware that complete healing takes up to two years. Not knowing when your re ops took place – I would guess that none of you are yet on the two year post? I have relented and am now using twice weekly an estrogen cream with an applicator. I talk freely to some of my clients ( women) and they are open and honest about their bodies. One explained soberly that she had problems with SUI, went to her GP – they offered this estrogen cream – which she uses twice a week – she does her pelvic floor exercises regularly and says now that she has not had any problems anymore with SUI. It only we would have know all this before the mesh insertion – we would not be in the situation we are find ourselves in. Has anyone access to surgeries in Barnett or the UCH in London? There is a special Women’s Pelvic Floor clinic being pioneered. I am sure they would be interested to hear from “explanted”mesh victims.
    Carole you have been on my mind. Do ring me.
    I hope all this helps.

    Ingrid H.

    Posted by Ingrid Hardacre | June 23, 2015, 11:19 pm
  131. Hi Jeanette,

    Yes there is a few things and it took me many doctors till I was told. Oestrogen cream not only does it helps the pain
    It helps with uti. Like many of you I was plagued with them. Not really now not for a good while. A pelvic floor physio for all the reasons mentioned and I have been put on small does of amitryptoline ended. Must say I’m much happier.

    Lisa

    Posted by Lisa mckay | June 23, 2015, 11:41 pm
  132. H I Ingrid it is good to hear from you again ,am afraid I have lost your phone number so if you still have mine then give me a ring or send me a text as my grandchild deleted all my old messages!!As you will have read I am still struggling ,infact my pain seems to be worse than before I am thinking of asking my GP if I should find another gynaecologist to see privately to see if it is some thing not related to the mesh surgery.Any thoughts as I really don’t want to take this very high dose of pain killers for the rest of my life yet still not be painfree
    Hugs Carole

    Posted by carole jarman | June 25, 2015, 2:56 pm
  133. I am desperate to know if anyone else is suffering the same as myself. I had a tvt and prolapse surgery using mesh in 2007, Since then I have constant wariness infections, and constantly need to wee. In the last couple of years I have had lower back pain, pain that radiates across my buttock and horrific pain underneath my buttock where my pubic bone is. I have pain that radiates down my leg and in my hip. it’s so debilitating that I really struggle to sit down. I can’t travel in a car for more than half an hour without it being excruciating. Having an intimate relationship with my husband makes if much worsIt’s ruining my life and that of my family. I went to a gp and gynae and was told it wouldn’t be related. I’ve had an MRI and although swelling showed in my trochianteric bursar nothing else showed up in that area and they thought it may be piriformis sydrome. Is anyone else experiencing anything like this? Regards Kim

    Posted by Ki | June 25, 2015, 4:12 pm
  134. Hi Ki, So sorry to know that you have such pain and problems. It sounds similar to many situations faced by those of us on this site. Please read all you can from this site and also https://slingthemesh.wordpress.com/ – so many sufferers and many told that it is not the mesh causing their pain.

    MRIs do no show mesh problems – you need specialist help. I get mild piriformis syndrome since my TVT and its removal but ease it with exercises I watched on Youtube.

    Please read all and consider the suggestions made to other women. You might want to get a second opinion from a specialist experienced in mesh issues as described above.

    Best wishes
    Liz

    Posted by LizRH | June 25, 2015, 5:17 pm
  135. Hi Ki

    I relate to all you say especially the hip. I had a tvt o in2007 and soon after my rt hip started to hurt. I thought it was arthritis it slowly worsened until I walked with a limp and could not get up stairs. Then last year I had a revision because of erosion. The very next day after all this time I realised that pain was gone and never returned I can run up stairs if I wanted. Sorry for you.

    Posted by Lisa mckay | June 25, 2015, 9:13 pm
  136. Hello Ki.
    Thank you for sharing your experience on your back and leg pains. I had never heard of piriformis sydrome and have just briefly searched it- as what is “piriformis sydrome”. Have a look on the first link which comes up it shows a very quick video which explains it beautifully as it has excellent graphics. If Liz confirms that she also has a mild form of this muscle pain; and she had no pains before TVT insertions – then you can bet your bottom dollar that it comes from your mesh insertion. I don’t know where you live, but I would say – request a CD copy of your MRI scan and then see if you can have an appointment with the clinical lead of the radiology department and see if he or she is willing to set with you and explain their findings to you ( take your husband or good friend with you, and if you can record that interview so you can better understand what is said.(ask permission to do so) .

    I insisted that I wanted to talk to the radiologist at the JR, Oxford. He kindly spent an hour with my husband and myself explaining everything carefully. I asked lots of questions, which he answered clearly and with grace. He is a Uni Lecturer and it did notice how well and patiently he explained. This MRI scan revealed and showed quite clearly that the Trocar needle had cut a much broader path through my left side behind the pubic bone. This damaged a larger area of tissues and muscle mass and fascia – which explained my left hand side of pain right from the day of insertion, as soon as I woke up from the operation. It never went away until the tape was removed, but it took nearly two years to have pain free days ( and discomfort on a bearable level , now, that I can live with)

    The MRI does not show the tape, as Liz says, but it shows scar tissue, inflamation and infection and any changes in tissues and muscles; Any damage through insertion will show up as a dark patch. Mine is a long oval shape on my left, whereas my right side shows a very, very small “slit type” dark patch.

    I am trying to explain this so that patients know what can be seen on an MRI scan.

    Now you are informed you can explain what you know can be seen on your scan ( providing it is a good scan and a good copy) Take this assertive information and make your wishes clear to your GP and the radiologist or your consultant (if you still wish to deal with that consultant), who probably will still want to tell you it is not from the TVT insertion.

    Can you confirm that you have reported your adverse incident to the MHRA? May I also ask you kindly that your sign the petition on the TVT-mum website?

    Please add a brief statement on your petition entry, so that it is clear why you are signing. Don’t hold back you only get one entry per person/ computer, so make it count. Say also that you have reported your incident to the MHRA, so people know they can report to them. Sadly most patients still do not know that they can report and indeed must report to the MHRA, because we do not want other people to suffer the same fate we all have, do we?

    Make sure that friends, husband and family sign this excellent petition. In order to get a Governmental, judicial review, in England, in the Houses of Parliament we need to raise 100.000 signatures. In stark contrast the Scottish mesh sufferers only had to get 1000 signatures in a very short timeline ( only a few weeks!!) they worked hard, but they managed and succeeded to be heard. We need to do the same.

    if I can echo what Liz has said. Do take time and read all entries on this particular , excellent forum page, as it will explain a lot of questions and lots of genuine accounts from patient’s experiences.

    Message to Carol J. My phone number is on this page quite a few entries up. But I will text you.

    To you all, good wishes

    Ingrid h.

    Posted by Ingrid Hardacre | June 25, 2015, 11:14 pm
  137. Feeling very despondent at the moment. I had surgery 10 days ago in Australia and my TOT ( inserted in the UK in 2007) was divided and trimmed. My surgeon was hoping that this will allow my bladder to empty correctly again and reduce the frequent UTI’s I have been having over the last 12 months. The surgeon was less committal about how the surgery would affect my pelvic, groin, buttock and leg pain. In my mind I was hopeful that the surgery would release some of the tension of the tapes and therefore give relief to my pain. It would appear not. Over the last few days as the pain from the trans vaginal surgical incision from the surgery has subsided I am becoming aware of the pain again in my pelvis, groins and buttocks again with some shooting pains that stop me dead in my tracks. It is certainly no better and at times feels worse with more perineal pain. Not too sure where from here. This thing is taking over my life.

    Posted by Andrea | June 26, 2015, 4:18 am
  138. Hi Andrea.

    Sorry y to hear that you’re in pain (different pain?) again. What I would say however, you have now had another surgical procedure, with cuts and stitches? Your body needs to recover from that new trauma. The healing time line applies 1st stage 1-5 days – tissue healing 2nd stage up to 6 weeks = stitches disolving/ inflammation settling down. 3rd stage complete internal healing = up to 18 months.
    May I ask – did your surgeon explain this to you? Did you ask your surgeon if he can take out more of the tape /complete removal? Or if he knows a surgeon who is skilled in removing them in Australia.
    I will make inquiries about a lady who had a TOT removed. It would be better if she could explain better.
    I give you the website link of the Scottish Mesh Survivors website. In Scottland they have had more problems with TOT’s , I believe. See if they have a page where it explains more.
    http://www.scottishmeshsurvivors.com/
    Are you walking with a stick or are you in a wheelchair, may I ask?

    Kind regards Ingrid H.

    Posted by Ingrid Hardacre | June 26, 2015, 7:33 am
  139. Ingrid, no I am blessed and certainly not in the same position as many unfortunate woman and I am still able to be fully mobile albeit in pain and discomfort. The pain I am experiencing now is the same as pre op but with what seems like more perineal pain. My surgeon did say it may be a few weeks until I would be fully aware of any improvelments but in my mind I guess I imagined as the tapes had been cut that there would be an immediate impact on the pain as the tapes would no longer be too tight. No the surgeon I had stated that the removal of them would not be in their scope of expertise and no other surgeon was suggested. I will ask this when I go for my follow up appointment in a couple of weeks. Thanks Ingrid
    Regards Andrea

    Posted by Andrea | June 26, 2015, 8:06 am
  140. Hello Ladies it seems there are an awful lot of us struggling with pain even tho removal or division of our mesh has been carried out.Isnt a sad state of affairs that we started out a few years ago to sort out some incontinence that we could possibly have lived with had we known the out come !!I certainly would have left well alone had had I been pleased with fore sight! what pain relief are you all taking may I ask/
    Ingrid don’t forget to text me it will save me scrawling back thro lots of posts! I expect you will tell me I need to have more patience and let my body heal which I can understand but I didn’t expect to have even more pain nearly 9 months post op !!
    Andrea I have a friend who is diagnosed with Piriformis syndrome and she is now waiting for her 2nd hospital stay ,this time for more advanced surgery,she had to go to a consultant in Queens hospital Nottingham as not many will deal with her problem Do hope you can get help from some where as continual pain is horrid isn’t it?I have got that I dread the thought of sitting down for long so am not looking forward to a pre birthday meal out with my son and family tomorrow then next Saturday I have been given tickets to a concert ,so more sitting !!!
    Hugs to you all Carole xxx

    Posted by carole jarman | June 26, 2015, 3:30 pm
  141. Hi Carole, I will be in touch. Glad you are using this forum site – it keeps us together! I am sorry that you have not found any improvement in your pain levels. Have you asked for a course of Pelvic Physio Therapy and Hydro Therapy – from your GP? Get him or her to refer you back to Natalia and see if you can get these courses – if not at Oxford then in your local hospital. There is another lady who is also still struggling. I will see how she is managing, but I think she is on pills also. Pain clinic injections have not worked. Like me she has to travel with cushions and Theater visits / Concerts are difficult. Is anyone swimming, gently, as a means to stretch the abdominal region? BW Ingrid H

    Posted by Ingrid Hardacre | June 26, 2015, 10:28 pm
  142. Hello Ingrid and everyone who follows the site an update on my daughter Michelle she has now had the dreaded mesh removed by Ms Price op went well hoping for a good recovery should be on our way home tomorrow.xxx susan

    Posted by Susan somerfield | July 13, 2015, 8:34 am
  143. Great news indeed! As another of Ms Price’s former patients I know how good she is. However, recovery will be long so please reassure Michelle that she needs lots of rest and it will hurt for a while – and don’t do too much too soon! Liz

    Posted by Liz RH | July 13, 2015, 8:37 am
  144. Thank you liz yes I will tell her to rest up as much as possible she has got the mesh in a tube and some pictures looks messy.take care lots of love Susan.xxxx

    Posted by Susan somerfield | July 13, 2015, 9:42 am
  145. Hello Susan and Michelle. Great news . So glad that Michelle has had Natalia’s expert help. I second everything Liz has mentioned above.

    i was sitting down at the computer too long and was walking far too early and too long. 15 mins was too long for me. Lying down with legs raised with plenty of cushions is the order of the day for some weeks. No lifting!! Not even a half filled kettle!! if the children need a cuddle the need to come to mummy , because mummy must not pick them up. One of the best hints from Liz was to drink plenty of prune juice and plenty of liquids. I hear beetroot juice is also good.

    Keep in touch with progress and please ask any questions that arise.

    BW
    Ingrid. xx

    Posted by Ingrid Hardacre | July 13, 2015, 2:34 pm
  146. Hello Susan

    Is your daughter going to have her tape analysed/ or has Natalia sent of a bit of it already?

    Ingrid

    Posted by Ingrid Hardacre | July 13, 2015, 2:37 pm
  147. Hello Ingrind yes it’s been sent off and got the rest in a pot.to look at.michelle has no children so that’s good for her and I will Olof after her thanks for your kind wishes.xxxxxxx Susan.xx

    Posted by Susan somerfield | July 13, 2015, 4:27 pm
  148. Hello Susan .
    Glad some of the tape was sent off. We are learning all the time. I did not have the wherewithall 3.5 years ago to have part of it sent off. I was just determined to see this tape in the pot and have it with me. I took some pictures at home, reconstructed it how it would have fitted to my body shape. Just as well I did take pictures, as my husband threw the well labelled package away during a freezer defrost!! I was not amused!! But pictures are good I also put a tape measure next to it to more or less reconstruct the length of it. A friend from church advised me to put a coin to the pictures so that you have a visual gauge in relation to size.
    Hope this helps. I was so very elated to be mesh free – i could have hugged the world! We need to remember that recovery from , yet, another op will take time. No medic mentions this – that full recovery of your body takes 18 months to two years!! We do know now. I always mention this when I speak to people who are perhaps a bit down over what they consider – slow recovery and then the penny drops. We need to be good to ourselves and allow ourselves that nurture of recovering well.
    Your daughter is lucky to have you close.
    Well done.
    Ingrid H. x

    Posted by Ingrid Hardacre | July 13, 2015, 9:05 pm
  149. Hi every one
    Ingrid you are always soooo supportive ,it helps a lot to read your posts.No one has been on this site for a while so I was feeling rather “alone”!!As you know I am still getting so much discomfort 9 months post op and it seems I am never to get out of this Gabapentin fog—infact my GP has prescribed Amitriptilyne to be taken at night as well,tried just once and found it hard to wake up all morning!!!Oh to go back to my mesh free days when it was just a bit of stress incontinence to put up with and I hadn’t had 3 operations all using mesh!!
    Keep on cheering us up
    Hugs from Carole xxx

    Posted by carole jarman | July 17, 2015, 3:18 pm
  150. Hi Carole.
    so sorry to hear that you are not much better on the pain stakes. I am reading the SCENHIR REPORT at the moment – the EU report on medical devices concentrating on mesh. In it they describe how many patients are being treated for various adverse reactions. It made me think how much I have fought for the aftercare I had received after my mesh removal. For me swimming has always been a key thing in activities levels, as I cannot do any other form of exercise! I received Hydrotherapy which gave me an understanding on how to stretch the abdomen to counteract any scar tissue. Scar tissue is a weighty factor on abdo pain after mesh surgery. since we were never told that that could happen it is natural that we feel deceived! When I now meet people who had other problems with post surgery – I always mention scar tissue and their eyes glaze over! Mesh removed patients should really ask for much more help and especially for Pelvic Floor Physio treatment.Tablets are the only thing that GPs seem to understand they can help with, when understanding the patient’s issues post mesh would be more appropriate. I think this is still a good site and I am glad that you share your story. It all helps others and I always hope that it would help someone who is thinking about mesh surgery, because it is not the answer. Repeated operations in the Pelvic regions is not what the pelvis has been designed for.
    Keep up your contribution. I do take Amitriptileyne ( light dose) , because it makes me feel sleepy, but waking up is a problem in the morning!
    I will email as soon as I have replied to the SCENHIR REPORT – deadline 19. July 2015
    BW Ingrid h. xx

    Posted by Ingrid Hardacre | July 17, 2015, 10:22 pm
  151. Hello Ingrid thank you for your comments Michelle is more awake now was really out off it for a few days after getting home.Ms Price gave Michelle a DVD of the op and a few photos fascinating stuff.Ms Price thinks she will make a good recovery the mesh was in the muscle and vagina had to have her vagina reconstructed they don’t tell you all this when you agree to have the mesh put in its a disgrace.xxxxxx love Susan.xx

    Posted by Susan somerfield | July 18, 2015, 4:20 pm
  152. Hi Susan
    thank you for your update. So glad that your daughter is making a good recovery. Kind of Natalia giving her a DVD of the removal op. Things have moved on in that line. When I asked for my op on a CD disk – Natalia told me someone had erased all op pictures! How vulnerable computer records are!! It is good that Natalia told exactly what she found eg. embedded in the muscle and of course harrowing to get told it had eroded into the vagina. Major surgery then with a vag. reconstruction. So extra care for the anticipated recovery!! yes? How long did the operation take? Was it done by Laparoscopy? Thank you for sharing these details. It serves all as a warning on this miss sold operation “minimally invasive surgery with maximum outfall if adverse re actions occur. We all know that they do occur sooner of later. We are all wiser after the event. Spread the word of caution on any “elective” surgery.

    BW
    Ingrid H.

    Posted by Ingrid Hardacre | July 18, 2015, 6:33 pm
  153. Hello yes it was done both laparoscopy and vagial she also is trying to deal with this adenosis .will know more next time we see her in about 8weeks.this was Michelle’s 5 operation.xx

    Posted by Susan somerfield | July 18, 2015, 6:47 pm
  154. I’m off to see a urologist today after 4 years of infections and pain.
    I’m a bit concerned as what to do next.
    I don’t really want another op but don’t want constant pain and infections every two weeks either 😟

    Posted by Jeanette lloydi | August 13, 2015, 6:24 am
  155. Wishing you good luck as you see the Urologist. Make sure you do not go alone make sure you have another pair of ears listening in. Without looking back on this page – I cannot remember where you would see your Urologist. It will be interesting to hear what she/he is suggesting. Having constant u infections take their toll! If you have access to a specialty trained Women Health Pelvic floor physio therapist – I would also talk to them – regarding bladder retraining. I have found my time with such a Physio Therapist at the JR in Oxford most helpful. there are lots of different ways to retrain your mind in coping with leaking, especially after complete mesh removal! I would share my experience, but only in direct email contact.
    Hope you have a successful experience, today. Report back as soon as you are able. Sharing your experience, today, will help others, who are also struggling.
    BW Ingrid h.

    Posted by Ingrid Hardacre | August 13, 2015, 9:41 am
  156. Thanks Ingrid
    I’m not sure what will come of this.
    I’m hoping that I’ll get some answers and solutions

    Posted by Jeanette lloydi | August 13, 2015, 9:44 am
  157. Hope it goes well Jeanette. Don’t forget all that you have learned through this site and others – you might need to give some statistics about how many are suffering. I have been getting contacts from sufferers worldwide…

    Liz

    Posted by Liz RH | August 13, 2015, 10:03 am
  158. I had tvt about 5 years ago which I had problems with straight away with lots of discomfort. The surgeon told me it would settle down after a while,but it never did. I have been back a couple of times since as I still have discomfort. I have now seen my doctor who wasn’t very happy with the outcome of my surgery so the doctor sent me to a top professor in this field. He cut away some of the right hand side of the tape as it was touching my nerves, he also injected me with steroids and local anaesthetic. I found that this worked for quiet some time but now it is now pushing against my pubic bone and I’m in pain again. So now I’ve been referred again to a specialist and they are saying That they might have to remove the tape altogether which could possibly lead me to have a bag strapped to me for toiletry needs. I just don’t know what to do does anyone have any advice. Please help!!!

    Posted by June keat | August 14, 2015, 5:36 pm
  159. Hello June, This sounds miserable for you – I wonder where you live and who you have been referred to. Who is the ‘specialist’? There are very few who can safely remove mesh. Removal of mesh does not usually mean that the bladder or bowel fail – although the incontinence can return (but we all realise that a pad would have been and is preferable to mesh issues).

    Have you read the threads in this forum before posting? You will find a lot of women sharing their issues, and the recurrence of two female specialists. These are known to remove mesh regularly – and now they have waiting lists but it might be worth following up – even if just for a second opinion on what needs to happen.

    Also, read slingthemesh.wordpress.com which has a similar focus.

    Hope that this helps a bit

    Liz

    Posted by Liz RH | August 14, 2015, 6:41 pm
  160. Hello June. I am so sorry that you have had such a prognosis from a specialist. I would follow Liz’s advice and have a good look at the postings on this page. You are entitled to more than one 2nd opinion! that is your right as a patient. Take your time and see the right people. If you need to talk to someone who is living life with a bladder bag, she would be happy to talk to you.

    Liz is right in saying that complete removal does not mean total failure. Consider getting to a specialist Pelvic Floor Physiotherapist, so you can have better instructions on your Pelvic Floor. It will be something we all need to re learn and proper bladder training, none of us really had. I have insistent in getting help after total mesh removal and bladder training afterwards was one of the best remedial advice I had.
    Keep in touch via this forum, Thank you for being brave enough to share your experience.

    Be sure to sign the petition on http://www.tvt-mum/petition and the one of meshies united, both are good anecdotal references to the mesh misery, caused by a bad product and administered through unsafe surgery. Take time to think about your petition entry – share more thoughts through these petitions. Just signing your name is a lost voice – a voice that can be used better to help others. Don’t feel frightened – there is help out there.
    Ingrid xx

    Posted by Ingrid Hardacre | August 14, 2015, 10:22 pm
  161. First let me say, my sincerest best wishes for all of you ladies suffering from this dreadful procedure. I have Uterine Fibroid tumors that began to enlarge rapidly as I was approaching Menopause. After seeing about 5 gynecologists and all insisting that I had to have a radical hysterectomy, I decided to wait. I did not want to have my ovaries removed at the time. Also, I found out that most of these doctors patients had complications from their surgery. I wanted to be sure I had the most experienced doctor, but all the doctors I had visited did not have years of experience. So I thought that as long as I wasn’t having any problems, I’d wait and see if I could find a doctor who had options other then a radical abdominal hysterectomy. The problem was that no one specialized in anything other then abdominal surgery. I later found a few in my locale who are also trained in vaginal hysterectomy and Laparoscopic surgery. The problem was that they had very little surgical experience and insisted that an abdominal would be the way to go. This last doctor I visited for a routine check-up is relatively new to her profession. I’ve been seeing her for the past 2 years. On the past check-up, this doctor asked me how my sex life is with my husband, and I said not very often because he has a back problem and it’s a bit painful for me anyway. Then she starts trailing off on another subject. Strange. Anyway, as I was about to leave, she suddenly blurts out, “If you decide to ever have a hysterectomy, you will need an abdominal reconstruction.” I didn’t bother to answer her because I thought it was rather abrupt the way she brought up surgery when it was never even discussed. When I got home, I did some research and learned that the typical procedure for abdominal reconstruction is the use of trans-vaginal mesh. I read all about the side effects and dangers of this procedure. Now I know why she asked me the question regarding sexual relations with my spouse. Why? Because, the trans-vaginal mesh procedure shrinks, tightens and makes the vagina so narrow that it would make sex, next to or even impossible. I don’t like sneaky dishonest doctors who think that because their patients are not medical professionals, that they can assume we’re ignorant or stupid. I wasted 2 years on this doctor it’s disappointing to learn that she is much like all the rest. I thought I had found a doctor, particularly a female doctor who I could trust, but she seems to be more interested in profit. I say this because she liked to talk and discuss everything from family, economy, politics and even religion. She is a Muslim who was born in Syria. I really liked her personality. She is very friendly and outgoing, but after she brought the surgery thing up when I was about to exit the room, was something I was not expecting, but more so because of the intimate questions she had asked me after just examining me. I do recall asking her some time ago as to how much surgical experience she had. It wasn’t much considering she has been practicing only 2 years, but she shrugged her shoulders and quipped that she had a few kinked ureters, a few infections and some other trauma I can’t remember. One thing I am certain of, I will never let any doctor convince me that the trans-vaginal mesh procedure is safe nor will I ever consent to it.

    Good luck to all the women who have had this procedure. I wish you well and a complete recovery with no more pain.

    Posted by Vicky | August 25, 2015, 5:42 pm
  162. Hello Vicky. I must congratulate you on your excellent and prudent observations and sharing your experience with us here on tvt info. You are absolutely spot on with everything you have said.Well done. You are very well informed. Basically none of us who had the horror of mesh surgery without all the risks fully explained – will ever be able to trust another doctor/surgeon, consultant!! This is echoed around all the forums around the world. You are correct and wise to take your time to decide in your own time what you want to happen to your body. We have to remember , unless we are run over by a bus or meet with an accident that needs urgent surgery – any other intervention is classed as “elective surgery” – which is not life threatening if you do not have it done.
    It is interesting that you observed the comments “sneaked in” about sexual activities between husband and wife – etc!! This doctor has done us all a favour by highlighting this fact, because it confirms that any pelvic /vaginal / rectal operation with mesh can stop intercourse activity, because of pain, due to shrinking/ shortening and scar tissue formation in the vagina. Hitherto all mesh proponent surgeons have skirted round this very important issue, Some openly denied that painful intercourse is not a major problem with mesh surgery! A solicitor told me that any operation in the lower abdomen has a very low level of satisfactory outcome.
    Your astute observations are correct – leave well alone – if it does not cause major discomfort leave your body intact. We all wished we had. A comment from one of our valued church members ( high flier in the advertising world – but very humble!) she observed if there was not not a market for the various shapes and weights of panty liners -the industry would not waste investments in producing them!
    Sadly Stress Urinary Incontinence has always been and still is a taboo subject and that plays directly into the surgeons/consultants’ courts and into their pockets. My inputting consultant drives a Porsche!!!
    A massive thank you and well done you – clever lady. I wish you well. x
    Ingrid h. xx

    Posted by Ingrid Hardacre | August 25, 2015, 10:37 pm
  163. Hello Vicky, I’m impressed to read all your posting and see how careful and considered you have been in your approach to the fibroids. Not many of us are as good or as thorough in checking out procedures that affect our body. It is clear that your approach has kept you safe, even if there is some discomfort from the fibroids. It is worrying to read that all 5 specialists were unclear in the implications of what they were suggesting for you. On the most important level, their procedures involving mesh are ruining lives; on an economic level, they are wasting NHS money – or perhaps I am wrong there, perhaps they are getting income from the mesh manufacturers.

    I agree with all that Ingrid has written very clearly and in more detail.

    Thanks so much for writing – your experiences are a message for all to heed. I hope that your body’s systems regulate and settle the fibroids naturally.
    Very best wishes, Liz

    Posted by Liz RH | August 26, 2015, 6:27 am
  164. Hi June,if you are still reading these posts I can tell you that in my experience you wont need to have a “bag” or any such like if you have your tvt removed.I have had gynea problems for many years with lots of surgery ,had the remains of my tape removed last Oct by Natalia Price in the JR in Oxford and whilst I still have problems with pain and some manageable —with Tenna —incontinence at least I don’t have the bladder sling in my body any more.I still have some other mesh but as my pain is not “deep” my GP does not think any one would want to try and remove it ,and I am not in a hurry for more surgery!!!I was advised against it by Natalia any way so will continue with the hefty dose of Gabapentin and try not to sit too often or for too long !!!
    Take care all of you
    Hugs Carole xxx

    Posted by carole jarman | August 29, 2015, 4:20 pm
  165. Hello June
    Carole’s words are very encouraging and very true( thanks Carole) . After mesh removal you would have to take it easy, as it is another and more intricate operation which also takes longer than implanting. Sitting a long time is not good for any of us, nor is standing or walking too much. It is very wise and honest of Carole to state that we may all have to manage with pads. Working on improving better pelvic floor muscles is an absolute “must” even if it is uncomfortable – (in my case) I am now trying to go to Pilates classes, which are similar to Pelvic Floor exercise classes which I was prescribed after my pains were still troubling me after complete mesh removal. I now have some pain free days ( after 3 years post removal) I have also been swimming as soon as it was safe to do so – re complete wound healing. Swimming stretches the torso and challenges the abdominal areas. Water aerobics is another good way of getting back to fitness. We can do more in water than with dry land exercises. Stay positive.You have signed the tvt-mum petition site and have you encouraged friends and relatives to support you by getting them to sign it aswell? Make sure you and your supporters give reasons why they are signing, so the world can see what mesh injured patients are suffering.
    BW and blessings. Ingrid H. x

    Posted by Ingrid Hardacre | August 29, 2015, 10:42 pm
  166. Hello Ingrid just a catch up with my daughters ongoing mesh she is now 7weeks post op went to see Ms Price last night for her check up after full removal and she is really pleased with how she has healed inside all looks good.she now has a skin condition called lichen sclerosus caused by auto immune issues mesh related.Ms Price is confident this will clear with treatment however she is still in pain.and if the pain is still present after a few weeks she will need to do a biopsy just something else the mesh has caused,it’s a long recovery and she knows this but hopefully better times to come. Love and best wishes from Susan and Michelle.xxx

    Posted by Susan somerfield | September 2, 2015, 4:44 pm
  167. That’s really great to know that your daughter is making a good recovery post op.

    Lichen sclerosis is horrid…and I too have auto immune issues relating to mesh that are unpleasant. One thing to keep in mind – avoid any pantliners/towels that have plastic in. That means most of the big brand names – and avoid anything scented. I now only use organic cotton liners and they keep some of the auto immune problems at bay.

    Liz

    Posted by Liz RH | September 2, 2015, 7:25 pm
  168. Thank you Liz unfortunately panty liners are a must so will look around to see what’s available it just seems one thing after another hopefully things are going to get better.xxxx

    Posted by Susan somerfield | September 2, 2015, 8:02 pm
  169. Hello Susan.

    So glad to hear on your update. Natalia is prompt with her follow ups and she is very caring. The pain issue does take time, depending how the op went, but if all is well according to Natalia, then it is just the time things are taking to heal. I overdid things- too long sitting at the computer – walking 15 mins was too long in the first 5/months post removal.

    I had exercises given to stretch the abdominal region, which at first really hurt, but because I like swimming – that was best for me! However I was very nervous about going into a busy pool with kids thrashing about , because I was afraid of being kicked. I still protect my tender left side when I meet people with boisterous dogs ( even on leads!)

    Be patient with yourselves. I was stupid and went in a Jacuzzi in a hotel when we went away just 6 weeks after removal. I ended up with a really nasty urinary infection!! Jacuzzi s are very bad carriers of germs, because they are so very hot – the germs are having a field day ( i know that now) ! That is why they are so heavily chlorinated!! So do stay away from those. I appear to catch everything that is going . I always wear pool scandals. I have the panty liners from Bodyform – extra long – curved fit. Wilkos have special offers on them. They stick well and if I am out for longer, I often stick two side by side, which works ell for me. Aldi’s pantie liners are not good they feel plasticy and have a plastic ( sort of ) coating. They also don’t stick well.

    One time I did not look properly and picked up a packet similar in look to Body form. When I got it home I read on the side the small print and was horrified that they were made by Johnson & Johnson!!! So I took them back. I am not buying anything made by Johnson& Johnson – as they are these greedy (one of them) manufacturers who harm women with their mesh products. Their products include Baby products and household cleaning products. We must boycott these companies. They do not deserve our trade. Don’t know where this rant came from.

    I am so glad that your daughter has had a good experience with Natalia’s expert attention to details. So glad all has healed well. Remember that full healing takes at least 18 months , so 6 weeks is only the very beginning!

    I will google Lichen sclerosis – sounds not nice. Get well soon to your daughter.

    BW
    Ingrid h.

    Posted by Ingrid Hardacre | September 2, 2015, 11:23 pm
  170. Thank you Ingrid you comments mean so much to us your so kind to think of us I think this lichen sclerosis is very nasty I don’t think she will be able to go to the swimming pool because of the chlorine and she will need organic pads more mesh problems will let you know on the progress as we go along until then take care love and best wishes Susan.xxx

    Posted by Susan somerfield | September 3, 2015, 8:04 am
  171. Hi Susan
    thank you for your reply. Yes do keep us informed – we need to learn about all possible side effects – so we can warn people and give the best reflection on all possible risks.
    When you find these pads do let us know how to obtain them.
    Very best of luck, blessings and love to you, your daughter and families. Take it one step at the time. 😉 x
    Ingrid .

    Posted by Ingrid Hardacre | September 3, 2015, 8:32 am
  172. Hi all
    Good to read some posts again,LIZHR.could you tell me the symtoms with Lichen Sclerosus as I am wondering if this could be my trouble.At my follow up with Natalia last Oct she said I had Lichen Planis and am sure she would have picked up on any thing else,so its just a thought.I can google the condition myself but its good to hear from the “horses mouth”so to speak!!
    Hugs to you all Carole

    Posted by carole jarman | September 3, 2015, 4:18 pm
  173. Try looking here http://www.nhs.uk/conditions/lichen-sclerosus/Pages/Introduction.aspx – I don’t have much knowledge of this condition except for what I research. However, I have had auto immune issues following my mesh, despite it being removed 4 years ago.

    It’s awful that there are so many things with mesh… yet still it’s used. Liz

    Posted by Liz RH | September 3, 2015, 4:51 pm
  174. Hi ,thanks LIZ RH,had a look and don’t think that is my problem as I “just” have pain when sitting,this is masked slightly by the maximum dose of Gabapentin but still causes me a lot of discomfort and one does have to sit eh?!!!Sue hope your daughter does well and doesn’t need further surgery .If only we had known of the worries this awful stuff was going to cause long term .!!I have had 3 operations 12 and 13 years ago ,all using mesh and then the TVT ,thankfully the later has finally been removed ,but I have to take my chances with the others !!
    Good to chat with fellow sufferers
    Hugs Carole xx

    Posted by carole jarman | September 5, 2015, 4:44 pm
  175. Hello Carole Jarman thank you for your kinds wishes to my daughter she has had problems sitting for almost 12 months since the second op to repair the first erosion and it just got worse then 3more ops the last one to remove all mesh but still in pain when sitting and her job is a sitting down job.Hoping in the near future this will be sorted out but who knows just hoping and praying things will get better in the future I know this will be a long process.her life like many mesh injured women will never be like it was before the mesh.love and best wishes to you.xxxx

    Posted by Susan somerfield | September 5, 2015, 5:30 pm
  176. Thank you Sue, is your daughter still quite young I wonder ,is she able to take any medication for some sort of pain relief ?Does she have a further follow up appointment with Natalia?Its a good job she has you to take such good care of her,tell her I will be thinking of her every time I sit down!!
    XXX Carole

    Posted by carole jarman | September 6, 2015, 2:21 pm
  177. Thank you Carole she is 40 this year never had any children and suffered Sui for about twenty years.its a bit complicated to discuss on an open site but I will tell her your thinking of her sitting problem it’s gone on for such a long time.keep you up to date with any progress until than take care.xxxxx. Susan.xxxxx

    Posted by Susan somerfield | September 6, 2015, 2:56 pm
  178. I have had this procedure and my body has been giving signs of rejection from day1. i have suffered lupus symptoms, had an R.E.M diagnosis and now have a list as long as your arm of problems.I’m under a neurologist because i cant walk properley now as well as other problems. Continual uti’s since operation and feel like i have been run over by a sherman tank every morning aching all over.

    Posted by Emma Ashby | September 7, 2015, 4:28 am
  179. Dear Emma. Sorry feel so grotty. Your symptoms sounds so much like all of us have experienced throughout our mesh mesh journey( Iwas exactly the same day 1 – as you describe!) . We feel for you. When did you have your tape put in? What sort is it TVT or TOT, or TVTO? In which part of the UK do you live? Did you go back straight away to your consultant/ in putting team? Share with us more of your journey if you feel able to.
    Please make sure you sign the petition on http://www.tvt-mum/petition, Make sure you give more details on your problems on the petition site, this country’s goverment needs to know how women are damaged by this operation with a product that is not fit for purpose and by the method – a blind procedure, through the most delicate female parts of the body! R e a l l y i m p o r t a n t is that you contact the MHRA if you live in the UK. Search MHRA yellow card system.
    BW Ingrid H.

    Posted by Ingrid Hardacre | September 7, 2015, 7:01 am
  180. hi Emma,

    As Ingrid says – so sorry that you have had such an awful time. Do follow up Ingrid’s suggestions – and also read the posts on this site as you will learn a great deal about removal and mesh issues. You might also like to look at slingthemesh.wordpress.com

    Warmest wishes, Liz

    Posted by Liz RH | September 7, 2015, 7:40 am
  181. Hi. I had a TVT inserted for stress incontinence 2 years ago. Up until a couple of months ago, everything was fantastic with total relief of my stress incontinence. However over the last 2 months, I keep getting cystitis symptoms such as urethral and supra pubic pain, especially when my bladder is empty! The only thing that relieves it is drinking so much water I have to go to the toilet every few minutes. Then, as quick as it comes, it goes away. After 2 very bad bouts last Thursday, I did a urinalysis dipstick test to check that this was not an infection. I am a midwife so I know how to interpret the results- it was negative on both occasions. I am very worried that this is a mesh issue, as my consultant told me before leaving the operating theatre, that if he put any more tension on the tape, I would be in urinary retention! I don’t know what to do. It seemed such a fantastic treatment but now I am sick with worry. Have you got any advice please?

    Carol Hawes

    Posted by Carol Hawes | September 26, 2015, 9:46 pm
  182. Carol. This is exactly what happened to me. I’m a nurse would do what you did even send urine to pathology. Sometime infection some time not. In hind sight this is caused by inflammatory tissue from were the tap is moving. Mine was too tight it eventually broke and eroded. I suggest you get a urogynocologist check it. If it’s is tight I would get it cut back. Leaving it too long as I did caused far more trouble. Regards Lisa

    Posted by Lisa mckay | September 26, 2015, 11:07 pm
  183. Hello Carol and Lisa,
    So sorry that you are both experiencing problems with your TVTs. There are a number of us out there… who have found a variety of help, usually having to be our own advocates. You both know the NHS so have a greater insight than me, for sure, but you’ll know that there are consultants and consultants…

    It’s good that you’ve found these pages, and there is a new Facebook support site set up by a sufferer who is using her journalistic skills to promote the issues – link from https://slingthemesh.wordpress.com/

    There are few consultants who are able to remove mesh safely, and in my experience of talking to many women, cutting the mesh does not stop the problems – it can create more as the edges cut your insides, release more plastic toxins, and can ball up inside. Complete removal – or as near as possible – seems to be the best way forward but it is a significant operation.

    Obviously I am no medic so cannot do more than suggest how to find out more: read these posts, contact more than one specialist and then consider your options. Please report your issues to the MHRA to ensure more accurate recording of complications. it really helps if you add your name and a summary of your situation to http://www.thepetitionsite.com/en-gb/1/an-urgent-review-is-required-on-the-medical-devices-tvt-tvto-tot-and-the-use-of-mesh-graft-for/ – you are not alone.

    Best wishes, Liz

    Posted by Liz RH | September 27, 2015, 6:40 am
  184. Hello Carol.
    Sorry to hear that you are now experiencing problems after TVT insertion. Your problems are all too familiar to all of us. None of us are medically trained, but we are certainly experts in our field of TVT adverse reactions and our TVT journeys have changed our lives – not for the better! If we think about this realistically these tapes are put in to prevent leakage. any such surgery is in effect a “retention procedure”.
    When the bladder cannot empty fully and some urine stays behind – more that the acceptable amount (50 – 100 ml) they are trying to tell us, then the bladder is affected and as a result will “silt” up, so it cannot work properly. The bladder is a muscle and if muscles are not challenged then they waste away. Someone i know had the procedure done about 8 years ago and was experiencing problems and was recently diagnosed with “Hunners” disease.
    If you search this on the Internet it will show that it can be caused by urinary retention. This friend had then a procedure in her bladder, which she will have to have repeated regularly! As Lisa above says she and many other sufferers were nursing back ground and even these medical professionals have fallen prey, to sales tactics and believed what the consultants were telling them ( us).
    We can only stress to as many people who are honest about incontinence not to go on a route of incontinence surgery with mesh (foreign body) , because history and research over the past 20 odd years, has proved that it is not the best intervention, as most people will have to undergo further procedures over time ( researched) and many more that just one operation. We perhaps agree that surgery upon surgery does not make the body more complete or younger – all bodily interventions have side effects. TVT with foreign plastic mesh has in the main a pain aspect that no surgeon/ consultants ever felt was important enough to mention with some rigor of honesty at the time of consultation. the failure rate of plastic mesh surgeries on TVT or other organ prolapse is as high as 33% and that is on the conservative side. Unfortunately mesh proponents = surgeons will argue against that, but they cannot give any data or research to prove their theories.
    Liz gives excellent advice and please consider her last paragraph. Thoughts and blessings . Ingrid H. x

    Posted by Ingrid Hardacre | September 27, 2015, 1:28 pm
  185. Thanks everyone! It’s such a huge worry. I had been so pleased with the results as I have total stress incontinence relief. Instead I now have such bad urge incontinence, that as soon as I get near a toilet, it’s like someone compresses my bladder, and if I am not quick, I wet myself. I have not told my husband of these issues as yet, although he knew of my concerns after surgery after I read about these problems. I am seeing my Gp next week to get their take on this, but I am sadly expecting a battle. There is so little information and advice out there that groups like this are literally a life saver. I feel very sad that I found this wonderful solution that isn’t so wonderful after all.
    Carol.

    Posted by Carol Hawes | September 27, 2015, 6:12 pm
  186. Hello Carol.
    so glad that you found help in these pages. I was horrified days after TVT insertion and from thereonin, when I could not make the loo! That was another adverse side effect that was not mentioned to me.

    I found out the hard way – namely not being able to make the loo in time! Urge Incontinence is brought about because of the irritation of the tape in situation. There are strategies to help you cope with Urge Incontinence.

    Have a look at these pages and search for topic 10 good reasons not to have mesh surgery. It is an excellent resume on the subject of adverse reaction of mesh surgery.

    Take that well written paper to your GP and any expert that you need to deal with – because it says it all. Remember you can have as many second opinions as you feel you need.

    Be assertive about that “patient right” to your GP! Where do you live?
    Kind regards
    Ingrid.

    Posted by Ingrid Hardacre | September 27, 2015, 9:55 pm
  187. I had a cystoscopy last week and there was nothing there to see. The bladder looked healthy. The consultant wants to start me off again on low dose antibiotics.
    I’ve already had this treatment with two antibiotics that the bacteria has then grown resistant too
    I feel like I’ve taken a backward step!
    Not happy at all and to top it off I’ve woken today with another urine infection!
    And to add insult to injury, whilst performing the very uncomfortable cystoscopy, the consultant mentioned that you ALWAYS GET URINE INFECTIONS WITH THE TAPE and wasn’t advised that?
    Would anyone ever have it done if they were????

    Posted by Jeanette lloydi | September 28, 2015, 5:56 am
  188. Hello Jeanette Lloyd

    I am sorry that you have further problems again. I have just lost my reply to you which was quite comprehensive!

    Let’s make it shorter and I would just like to mention this link, which leads to you this blog site that we are on.

    10 Good Reasons to Avoid Mesh | tvtinfo *

    Copy and paste it into your browser and read the contents.

    It is so concise and it is an excellent article/ infomation to take to your GP, for starters! Because we need to start with our GPs because they are the first line of call when we experience leaking problems. They then send us off to see the “experts” !

    These experts know they can help – but that help is an operation, which we now know, does not work long term! It brings with it the possibility of pain and other nasty adverse reaction, that we are not being told, (Not consented fully and honestly).

    * We have copies of this article in the car, so if I talk to somebody about my car sticker/ poster – I hand one of these to them, so they can read it when they have time.

    If we all arm ourselves with this excellent information sheet then we can inform anybody , who wants to know, about the dangers of mesh in the body.

    I take it that you have not had your tape removed?

    You are quite right in your statement above. ” Would anyone ever have it done if they were????”

    The answer is “NO”. But we believed our experts! Didn’t we?

    Hope you are better soon. Needless to say – drink plenty of water and stay near the loo for comfort stops!

    Take care , Ingrid.

    Posted by Ingrid Hardacre | September 28, 2015, 7:52 am
  189. Hi girls
    So sorry to hear the tale of 2 more tvt sufferes ,Ingrid and Liz already know my story which has been ongoing for many years now.I am now a retired nurse so like you also know things to look out for .I had a colposuspension in 1998 a TAH in 2000 and then a sacrocolpopexy in 2002 followed by an Apogee in 2004,all done for bladder incontinence and a prolapse or two!! In 2004 I had a tvt as I still had some incontinence altho to me it seemed more urge than stress Like you I was jumping around with joy for a few months until more trouble hit and visual urodynamics showed that my bladder was being occluded.In 2006 Iwent in to have the tvt removed but —of course– hit problems as the consultant perforated my bladder and had only managed to “cut” the tape,I went home with a BIG catheter in situ to keep the bladder patent ,which was really joyful!!
    From then on I had constant problems Awful urge incontinence and pain when sitting .I finally found Natalia Price in Oxford ,Who ,last Oct removed the rest of the tvt which had wrapped around the neck of my bladder and was eroding the vaginal wall.Due ,we think ,to nerve damage I am still left with pain when sitting,despite taking the maximum dose of Gabapentin which makes me feel quite “drunk”
    So girls PLEASE research your consultant well and don’t have the tape cut or meshed about with just get it out before too much more damage is done .I still need to use pads and have urge incontinence —as well as the pain—but at least I am mesh free

    Posted by carole jarman | September 30, 2015, 3:43 pm
  190. Could I say if it possible try and find a physio who specialises in this and pelvic floor. I know the pain and incontinence you all speak off. My physio gave me a never stimulator and a dilator that if you can find the pain spots and push this thing in and stretch the muscle – it hurts no doubt about that. And I do those pelvic floor exercises religiously -should have done this to start with. I have found the pain is so minimal now and the incontinence not too bad.

    Posted by Lisa | September 30, 2015, 9:52 pm
  191. Well said Carole and Lisa. You both give excellent account and remedies on how to cope. Lisa I had more or less the same offers that you had with stimulator and dilator, which located muscles and pain spots. Being mesh free is my salvation. If we all had known how mesh can affect us badly, then we would well have gone without. So keep spreading the word of warning or at least give unbiased account as part of our awareness program. We definitely need more and better Pelvic Floor Physios in all England. I do believe that is being addressed, but it is not advertised, so we need to mention this as the first advice on incontinence issues x

    Posted by Ingrid Hardacre | September 30, 2015, 11:04 pm
  192. I just came across this site today. I’m from just outside Belfast ….Amazing to read so many stories like mine. I had tvt inserted in Jan 2013 through my thighs as it was supposedly less invasive. Straight away I had problems although I was still sent home from day procedure unit. I had to be taken back into hospital by ambulance 24hrs later as I was in severe pain and unable to walk. I had to have the left hand side of tape removed . 3 weeks later the same pain started on the right , I couldn’t even sit. Another op to remove the tape . I ended up with nerve damage and on Lyrica for 7 months . I foolishly agreed to have the op redone a few months later going in around the pubic bone. Everything was great and I recovered well. I was prescribed Mirabegron in May 2014 to help with urge. In May 2015 I was diagnosed with breast cancer tho I have been sucessfully treated and am on the mend. I stopped taking the mirabegron 3 weeks ago after reading a few studies where people had reported cancers. Yesterday I woke up with pain where my tape is on the left hand side.it just feels like how it all started 2&1/2 years ago….any advice welcome!

    Posted by Diane Sinclair | November 11, 2015, 8:04 pm
  193. So so sorry to read all these horror stories from an op that was supposed to change women’s lives for the better how wrong were we all …I to had my first tvt done in 2002 in Stornoway up in the Hebrides I had problems straight away I foolishly agreed to get the op undone and then redone a short time later nobody once said to me that this mesh was to be in for keeps. I had UTI,s for years off and on and then In 2008 the tvt came back with avengance I have now had numarace ops because of having tape erosion. I am left now with severe never damage lower back pain and real difficultly sitting down or standing for an length of time. I am glad that l have found this page just to be able to talk to somebody because it is not something that you can just talk about to anybody I find that it is just way to private but a the same time sorry to hear so many like me ….

    Posted by cathleen | December 16, 2015, 11:53 am
  194. Hello Cathleen,
    It sounds as though you have had a really awful time with mesh tapes and erosion – nasty and long term pain for you. Sadly we are finding that there are more and more women like us… but at least we do understand the sort of pains and treatment. You might also like to look at a newly formed Facebook group set up by a mesh sufferer who is a journalist: https://www.facebook.com/groups/784263765025642/?fref=ts

    Look after yourself,
    Best wishes Liz

    Posted by Liz RH | December 16, 2015, 1:10 pm
  195. Dear ladies, Diane Sinclair and Cathleen. Apologies to Diane for not replying to your post from 11 November 2015.
    I had an email reminder in my inbox today from tvtinfo , so I am now checking this site. Unless there is a reminder I forget to check this site. I am sorry, Diane Sinclair, if you have felt abandoned by not getting a reply.
    I do so feel for you both, you poor ladies! You both have been misled by having yet another mesh operation on top of another! I am so glad that you have shared your thoughts here – Especially with the drug Mirabegron, we need to know all this information, so thank you. It is really, really ,REALLY important that you both report your mesh adverse incident to the MHRA ( Medicine Healthcare Regulatory Authority) here is the link: https://yellowcard.mhra.gov.uk/ it is an easy access website you click the blue button which says Devices. Please also write to your MP – some MPs have been really compassionate to mesh sufferers and about 20 MPs are actively pledging support to their constituents who are mesh victims ; Link
    http://www.ukpolitical.info/Finder.htm. If I can also urge you to sign the petition on tvt-mum – link here ; tvt-mum/petition and read take time to read some of the entries. You will know that you are not alone in your suffering. Make use of the space on the petition site and give some information of your horrible mesh journey, as you only get one chance to make an entry. I signed 4 years ago with my full name, but I regret not having put more information on the site. You can also sign without giving your name, but it is a waste of a “vote” – so to speak. Awareness is slowly spreading in the British Isles and many self help websites are now available. It is also very important that you keep your GP informed so they can be of support to you and they also need to know that mesh is not very suitable to inside a body, they may get other ladies who have leaking problems?. If you get time check out this blog site it has really good information. One of the best articles on here is called- 10 good reasons not to have mesh: – tvtinfo.wordpress.com/2012/10/14/10-good-reasons. I took this to my GP as soon as it was available on this brilliant blog site. Mesh can now be removed in the UK by only a few specialists. If you are in Scotland Check out the website : Scottish Mesh Survivors – they have a help line . I am not aware of any removal specialists in Ireland. If you are able to travel to England then there are two removal specialists – one in Oxford removing TVT Retropubic mesh tape( If you come to Oxford you are welcome to stay overnight with my husband and I we live 40 minutes away. The specialist in London removes TOT /TVTO ( they are more problematic to take out, as a full removal! Depending which device you have implanted either doctor may see you – they do private consultations ( if you want to be seen quickly, and then you get taken on to their NHS list. Your medical records will say on your operation report which device you have. The devices have a serial number and a batch number – this is helpful to the MHRA, but not important. Ask your implanting specialist which device and batch and serial number your device has. Hope this helps you both. Happy Christmas. Ingrid H.

    Posted by Ingrid Hardacre | December 16, 2015, 1:32 pm
  196. Hi Diane,this is quite a late reply to you but I haven’t been on the site for awhile—hello Ingrid!!—.If you scrawl back far enough you will probably read old posts from me, as like the rest on this site I have been suffering since 2004 and have a fair few operations to try and give me some pain relief ,but ,sadly it seems I have nerve damage and am in a lot of discomfort when sitting that even high doses of Gabapentin are not helping.If you are at all able to get to Oxford,as Ingrid suggested you will get all the advice you need from Natalia Price who is a lovely understanding lady.It sounds as tho you really need to get rid of your mesh before it does too much more damage
    Good luck and hugs from me
    Love Carole

    Posted by carole jarman | January 21, 2016, 6:25 pm
  197. Hello Diane . Carole is right see if you can get advice before you decide ( in a hurry) on your removal. Carole Jarman lovely to hear from you on this site. I am sorry that you are still in pain. Am i right that it is one year this past October – since your removal at Oxford? If so you still have a few more months to wait out to see if things improve re pain and sitting discomfort. I still travel with a cushion where ever I go – in case I get a hard chair or an old “sat through one” which is as diffictult. We need to plough on with our awareness program. I went to a local Farmers Market today with my bag which has my sign on it “stop meshing around” and I was asked by two people what it was all about. I explained and gave my little websites card – and asked them to go online – to beinformed. Both had not heard about the mesh operations. Take care all. xx

    Posted by Ingrid Hardacre | January 21, 2016, 11:31 pm
  198. Hi Ingrid ,lovely to hear from you again,I have a new mobile number and did not transfer you number on to it!!!I think you have my land line and if so do give me a ring and I will give you the new number.If not I will have to put it on this site for you.You are right it is about 15 months since I had my tvt removed and whilst I am still on 900mgs Gabapentin 3 times a day and still not able to sit for long I do hang on to your words that given time things will get better.I do hope so as I really don’t want to think about being like this for the rest of my life
    I chatted with an ex neighbour in the week who was just starting with investigations for incontinence so I told her straight my thoughts on the mesh!!!
    Take care xx

    Posted by carole jarman | February 5, 2016, 6:23 pm
  199. Hi Carole J. good to hear from you. So sorry to hear about you still being in pain. Just quickly the JR in Oxford are looking for patients who are still in pain after surgery. I have put it on Sling the mesh Facebook site, but I will look it out and send it to you. It might be worth an inquiry at the JR? I think I still have you phone number, but I had problems with my phone and lost some numbers. We have our email addresses though. Must get to bed! I start work at 8.00 a.m. Well done to keep your neighbour appraised on the reality of mesh complications. We know that they will come sooner or later! Keep talking to her. Be in touch soon… This is the Hyperlink http://www.bbc.co.uk/programmes/b06yclg4 Notice from another meshie friend “Did you hear the interesting article on Woman’s Hour on Tuesday about a study they are doing at JR Hospital into chronic pain, they are trying to recruit volunteers – only needs 1 visit to Oxford”. Wondered if it might be of interest to you? It’s about
    25 min 20 sec into the program. Have a listen to Woman’s hour on i player through BBC Radio 4. Ingrid. xx

    Posted by Ingrid Hardacre | February 6, 2016, 12:16 am
  200. Hi, I had TVT inserted in June 2015 after suffering from stress incontinance since the birth of my 6 year old in 2010. As a 32 year old, wetting myself regularly wasn’t just an embarrassment but also a hindrance to my lifestyle and my quality of life. Everything was fine until just before Xmas when I had my first uti, I’ve had 4 more since. I stumbled across this site whilst in the bath trying to relieve my symptoms and immediately started crying…I too was never aware of all the horrid complications and symptoms associated with this ‘miracle tape’! I am due to see my surgeon/consultant next month and am waiting for an appointment to see a consultant for a kidney scan. I have been on antibiotics for 2 months, even if I stop taking them for a day or so because I’m feeling better straight away it returns. I have constant burning and pain on passing urine, I can’t sleep, it effects my home life coz I’m so grumpy and my work life coz I’m so tired. I can’t sleep with my partner when my symptoms are bad as I can’t bear to be near him…I just want to be in pain on my own. I used to suffer in my early teens with cystitis and reacurring uti’s but have never suffered as an adult. I know for a fact my problems are due to the tape…thanks to this site I am going to contact Natalie price and have it fully removed! I can’t cope with this for much longer, it is so depressing. Thank you soooo much for all the helpful info xx

    Posted by Victoria Anderson-Forbes | February 11, 2016, 9:44 pm
  201. hi Victoria,

    SO sorry to read of your pain and infections. Too many of us have suffered – no-one ever tells you the risks. You will be with someone who really understands if you are seeing Natalia – that’s a relief for sure. She removed my TVT nearly 5 years ago and I will always thank her. I lead a totally normal life in every sphere now – but was crippled by the mesh.
    Do read as much as you can – and hopefully you will be reassured that you are not alone. There is also a FaceBook site from https://slingthemesh.wordpress.com/ which many women use.

    I really hope it all goes well and that you get the help you need. Do register your problems with the MHRA _ details above.
    Very best wishes, Liz

    Posted by Liz RH | February 11, 2016, 9:57 pm
  202. Hi Liz, thanks for your reply. So do you not have any problems at all now you’ve had the tape removed? The mesh needs removed and it is the path I know I need to go down. My problem is I’m petrified, I had a 3rd degree tear with my first of which I suffered a condition that makes it impossible to have sexual intercourse and had to have therapy and a 2nd with my 2nd, then I had to have surgery to have the coil removed as it had gone to the top section of my uterus and now this. It took me to be admitted twice before I was brave enough to be sterilised! I’m such a wimp when it comes to my lady garden…id rather have a limb amputated and that’s no joke! I’m scared that it’ll make things worse having it removed or something bad will happen in surgery and I’ll lose the use of my bladder or something. It’s such a delicate area of the body and such an intricate operation, would you definetly only ever go to natalia…I just don’t know to say to my consultant when I see him next month, he’s such a lovely man! I suppose I just want to know that you are ok and nothing negative has happened as a result of removal!?

    Posted by Victoria Anderson-Forbes | February 13, 2016, 2:16 pm
  203. Hi Victoria, I’m not surprised that you’re scared – what a lot of physical and emotional trauma. Miserable.
    Yes – I’m very well and lead a very normal life, cycling and walking – and re-married after my TVT removal with no problems in my personal life. It took a while to recover as it’s a lot of tissue removal – you are welcome to my ‘diary’ of recovery – email lizrharris5@gmail.com. Occasional nerve pain but not enough to stop me doing anything – I use over the counter pain relief.
    Natalia is very experienced at removal, and your tape has not been in long so should be easy to find. Get all your questions ready for her 😉

    Liz

    Posted by Liz RH | February 13, 2016, 2:28 pm
  204. Hi Victoria,do please go and see Natalia—-altho you may very well have to go to her private clinic as you will have quite a wait on the nhs–.I know how you feel about the “will I make things worse”,but leaving the tvt mesh in situ will not be helping with all your uti problems.It may well be that the tape is too tight and occluding your bladder which is what happened to me and I wasn’t able to empty completely ,this is something you can ask of your consultant,you can also ask if he has removed tvt mesh before,as not a lot of gynaecologists have
    If you trawled back thro some of the posts you will no doubt find some of mine which will tell of all my “tales of woe”,but if you want to know more ,just ask
    Good luck Carole

    Posted by carole jarman | February 19, 2016, 6:03 pm
  205. Hi carol, thanks for your message. I’m seeing my own consultant on 8th March and that will be my first question. I’ve seen the doctor again today who was very lovely and concerned about me given I’ve had 6 UTI now since Xmas, well at least I think I have…she dip tested my urine but it’s the first sample I’ve given as my first 3 prescriptions were given over the phone so my dip test showed no ideation just blood. She said that given the amount of antibiotics I’ve had my bladder should be sterile but was concerned about the blood so sent the sample off to measure the amount of blood. She thinks the symptoms I’m having, although the same as cystitis, could well be irritation which would fit as my symptoms come on after being intimate with my husband or using tampax. I don’t know, very worrying…I absolutely refuse to live the rest of my life like this. She was also shocked that my consultant didn’t try other avenues like referring me to a urologist given my history, historically I suffered from cystitis as a teenager but never as an adult, wet the bed till I was 11 which was down to a sensitive bladder, I’ve had a lot of gyne problems when I was younger. All these things went out of my head and I didn’t think of a connection but the doctor I saw today seemed to nail the coffin in what she was saying and it’s got me thinking ‘ how naive am I to just go with the first thing recommended’! Feels like karma, and karmas a b**ch!! All if this could have been avoided, surgery should actually have been a total last resort. My quality of life is much less than before, I would rather leak wee and wear a panty liner than go through this!! I will certainly ask him if he’s ever removed TVT but I am also on a call back from natalia so we’ll see x

    Posted by Victoria Anderson- Forbes | February 19, 2016, 10:23 pm
  206. Hello Victoria. What is happening to you happened to me before the tape eroded and partially removed. Over seven years I had what I thought where uti and some many where others not just the pain you speak off. It’s all inflammation and nerve irritation. After I had the tape removed over 8 months now not one uti but recently unfortunately that pain has come back I can’t sit for long now as I have scar tissue that irritates the nerves. But I still recommend getting that tape out. Regards Lisa

    Posted by Lisa mckay | February 19, 2016, 10:35 pm
  207. The infections and pain are miserable and just a couple of the side effects that we know result from TVTs. Great that others are supporting – sharing really helps. One important point, Victoria: do NOT be a guinea pig if your consultant has not safely removed lots of meshes. Choose someone such as Natalia who has taken many out – even if it means travelling. She is extremely experienced now. As Carole said, you might need to pay for your initial consultation privately which will speed things up and then if removal is the next step, get you on the NHS list.
    Hope that these points all help. Best wishes, Liz

    Posted by Liz RH | February 20, 2016, 7:03 am
  208. Hi Liz, thanks for posting. Can I ask, what kind of pain do you have when sitting down for too long? Is it like an ache or is it the cystitis feeling? I can’t bare the cystitis type pain so I’m trying to figure what I can deal with. I’m starting to think I’m screwed and I’ll never go back to normal!! It’s so depressing 😥

    Posted by Victoria Anderson-Forbes | February 20, 2016, 8:17 pm
  209. Hi Victoria, I had my TVT removed nearly 5 years ago. The only pain I still have is occasional nerve irritation – but I don’t get infections or a problem with sitting. It took a while to recover from the removal – it’s a big op – but as I said above, you’re welcome to email me for my recovery diary. You are in a different situation from mine but you do have the opportunity to understand your options if you consult with Natalia. She cannot promise that you will be back to where you were pre-mesh, but removing the mesh by someone with experience will certainly improve you a great deal.

    Do read the posts above – there is a great deal of information on this site.

    Liz

    Posted by Liz RH | February 20, 2016, 8:21 pm
  210. Sorry Liz I was getting you and Lisa muddled up, Lisa…also thanks to you for posting! What kind of pain do you experience now after removal? And if it starts irritating on sitting does the pain go when you get up and walk around? As you’ll have probably seen on my previous posts it’s the cystitis type pain I can’t deal with, period pain does not bother me one bit but that stinging/burning sensation is just unbearable for me.
    Thanks

    Posted by Victoria Anderson-Forbes | February 20, 2016, 9:27 pm
  211. Hi. Yes that’s the pain. I had nothing for 3 months great but then again. Yes it starts when I sit down too long and too often. I’m actually going back to physio to see if she can locate it but like last time I’m thinking it will be muscular in nature but like you said it’s so in your face.

    Posted by Lisa mckay | February 21, 2016, 4:46 am
  212. Hi Lisa
    Sounds like you are suffering like I do, I had the remains of my tvt mesh —-which was wrapped around my bladder neck—-removed by Natalia in March 2014.Sadly I am still getting pain when I sit ,which my GP assumes is nerve pain ,this despite being on the max dose of Gabapentin.My pain feels like the sort you get when wearing too tight a pair of trousers which cut into you !!!—–NOT NICE !!!—-Do let me know if you find any thing to help with the pain as I really don’t relish living the rest of my life like this and being”pie eyed “on pain killers!!I am going for a chat tomorrow with a lady who does accupunture,am willing to give any thing a try
    Hugs to all you sufferers
    Carole xxx

    Posted by carole jarman | February 22, 2016, 3:49 pm
  213. Latest update on me is that I have just had a 3rd session of acupuncture ,cant say I can feel much change as yet but will continue with the 5 that are recommended.Has any one else tried this?Have also had my Gabapentin increased to the max dose of 1200mgs 3 times a day and my GP is doing a referral to the pain clinic for me .am happy to give any thing a try cos life is pretty grey at the moment
    Hope you are all ok and getting the help you need
    Luv Carole

    Posted by carole jarman | March 11, 2016, 5:34 pm
  214. I had a TVTimplanted 10 years ago and have been complaining to my doctor for years about the discomfort it has caused. Iv had cystoscope which in itself was so painful only to be told that they could not find anything, I have now gone through having a hysterectomy 8/10 weeks ago where my surgeon informed me that once they removed the womb ect they were able to see that the TVT has caused lacerations to my urethra and will need further surgery. I am scared,nervous and anxious about the outcome. I can barely walk by midday most days and have to plan days out where it may involve walking any distances and I have to be dropped off and picked up or taxi home from work everyday. I cannot excercise any more therefore have gained weight and intimacy is out of the question. I had no idea about the controversy surrounding this mesh until I mentioned to a friend of mine and she informed me of the campaign.

    Posted by Christina | May 17, 2016, 12:45 am
  215. Hello Christina, what a nightmare situation for you. You are not alone – which might be reassuring but is no help when you are in such pain and have surgery ahead. Your daily planning of trips to ‘cope’ are so familiar – it’s a tragedy that this practice continues despite so many of us. If only the medical profession stopped being so blind to the devastation the mesh causes – cars would be recalled if they had the failure rate that we know of with TVTs and mesh but oh no, not mesh – despite it ruining lives. One has to wonder why.
    It is very hard for you and also your partner and family – the legacy of this is very sad. I’m glad that you have been able to read of others so you can share your situation – there is also a campaign called Sling the Mesh which has an active FaceBook group if you’re interested.
    If you like in the UK, do please inform the MHRA of your issues – there are details which Ingrid is very good about posting.
    Take care, Liz

    Posted by Liz RH | May 17, 2016, 6:07 am
  216. Dear Christina. As Liz mentioned I will reply to you in greater detail later. Above all else, dear Christina it is really important that you report to the MHRA, as Liz pointed out, if you live in the UK.
    https://yellowcard.mhra.gov.uk/
    This is the link above. It is really easy to report – choose the yellow button
    Take care and well done for finding this site. If you have time – have look on this site and print off the excellent article: 10 reasons to avoid mesh . Take this paper to your GP, so he can quickly grasp the idea. Statements from patients have shown that GPs know very , very little about complications after device implants.
    Blessings for a better day, today.
    Ingrid H. x

    Posted by Ingrid Hardacre | May 17, 2016, 7:35 am
  217. Thanks Liz and Ingrid I will definitely do all of the above.

    Posted by Christina | May 17, 2016, 8:54 am
  218. Hi Christina. Thank you for your reply. I take you live in the UK? More soon. I have just spent one hour hunting for my car keys. Now exhausted and off the bed. 😀
    I shall be in touch soon. Take heart and forge forward.
    Ingrid H. x

    Posted by Ingrid Hardacre | May 17, 2016, 10:26 pm
  219. Thanks Ingrid. I’m in Edinburgh,

    Good night

    Posted by Christina | May 17, 2016, 10:33 pm
  220. I devastated; I’m a nurse that works on a ward dealing with gynae patients. I feel like I’ve lied to them on how easy and successful this procedure is!
    I’ve since had a tvt and prolspse repair I’m two weeks post op; still pee’ing myself and in agony. I now walk with s limp.

    Posted by Gillisn | May 18, 2016, 12:15 am
  221. Dear Christina. Make contact with the self help group in Scottland. Scottish Mesh Survivors. They are a very supportive self help group and they have achieved a lot. Their website is very insightful. this is the link. But I will still write to you at more length,shortly. http://www.scottishmeshsurvivors.com/
    BW
    Ingrid H. x

    Posted by Ingrid Hardacre | May 18, 2016, 7:28 am
  222. Dear GILLISN . Thank you so very much for your post and your total honesty. It takes someone like you to come forward in this brave way. Your brief statement will vindicate all mesh sufferers in the UK and indeed the world over. Very,very,very brave Lady, you! See above please also make contact with SCottish Mesh Survivors. Please also sign the petition on tvt-mum website. Hope this link works if not just put into your browser tvt-mum/petition.
    1000 thanks. Ingrid H. x
    http://l.facebook.com/l/4AQFGmbgxAQGjfrnixsLZtJ34HT1uk9a_zZrgdyf-iOXdYA/www.thepetitionsite.com/1/an-urgent-review-is-required-on-the-medical-devices-tvt-tvto-tot-and-the-use-of-mesh-graft-for/

    Posted by Ingrid Hardacre | May 18, 2016, 7:34 am
  223. Gillisn. I do so feel for you you are going through mesh hell like many of us. So very sorry for you. Please know that you can have the tvt removed while it is still not fully embedded. Make contact with Scottish Mesh Survivors URGENTLY and REPORT your adverse reaction to the MHRA PRONTO.
    https://yellowcard.mhra.gov.uk/
    All love
    Ingrid h.

    Posted by Ingrid Hardacre | May 18, 2016, 7:41 am
  224. Ingrid is right – it’s really honest of you to post your situation and revised understanding. I wish there were others who had the knowledge you now have and would stop using these life changing meshes – change for the worse. Even with removal, life is not the same and pain remains in some way. I get so angry that the TVTs are still talked of as ‘low risk’. There is lots of information on this site that will help you make a way forward if you need to.
    Best wishes
    Liz

    Posted by Liz RH | May 18, 2016, 7:41 pm
  225. I had a tvt fitted 3 years ago, within 3 weeks it had eroded into my vagina. I had the ends removed, but still suffered server tightenings in my groin where it was fitted. It had burst through the vagina wall again. Last week I found a wonderful consultant who has removed it. She has has to repair the damage to the wall of my vagina and I am now pain free(apart from the surgery discomfort)
    Anyone considering having one fitted, don’t touch it with a barge pole.

    Posted by Belinda | May 23, 2016, 7:59 pm
  226. Hi Belinda, Good to know your story and that you have come out of a horrendous three years feeling much better. It is indeed a nightmare and we just cannot understand the repeated use of TVTs.
    Would you be willing to share the name of the consultant who removed your mesh? It might be one of the familiar names but if it’s a new surgeon that would be fantastic as there are too few who can remove mesh safely.

    Take it easy – don’t overdo it (I did too much after a few months – it took a lot of time to fully recover). Best wishes, Liz

    Posted by Liz RH | May 23, 2016, 8:07 pm
  227. Hi Belinda
    I’m delighted for you. Where did you have your surgery to remove TVT? And could you forward your surgeons name please? Wishing you a speedy recovery. ☺️

    Regards christina

    Posted by Chris | May 23, 2016, 8:45 pm
  228. Hi every one,I have been posting on this wonderful site for about 2 years now and feel so sad to see that ladies are still having the dreaded tvt mesh fitted.I had mine done following years of various major gynae operations ,it was fitted in 2004 and “cut”2 years later,however the remaining bits eroded the vaginal wall and wrapped around the bladder neck!I had these bits removed 18months ago in Kohn Radcliffe,Oxford by Natalia Price ,a lovely clever lady but sadly I have nerve damage and am still in pain when sitting despite taking the highest dose of the drug Gabapentin.I am waiting to go to the pain clinic next month but being a retired nurse I am realistic about what else they can do.So please all of you who are hesitating over seeking help for removal of the mesh,go ahead before its too late
    Hugs to you all
    Luv Carole
    PS Hi Ingrid !!

    Posted by carole jarman | May 25, 2016, 5:01 pm
  229. Hi Belinda, can you tell me who removed your tvt? I’m due to have mine cut next week as its too tight so I can’t empty my bladder fully and I live in Cumbria so going to see Natalie price in Oxford isn’t exactly round the corner!! Was it her or someone else?

    Posted by Vicky Anderson-Forbes | May 25, 2016, 5:13 pm
  230. Hi all.
    I echo what Carole Jarman says. It is a tragedy that patients are still coming forward to report that they have not been told all the risks of mesh implant surgery. Mesh is no good in the body. This site reports in detail all that could happen and still is happening. When you go to your consultant he/ she will not tell all the risks, as consent forms vary from Hospital to Hospital in the UK and in England in particular.Although there has been an Engslish Working Group Party set up by HS England – Chair Prof. Keith Willett, nothing much has been done after all these meetings, in which i was involved as a patient representative on the consent working group. Although a frame work for a national patient information leaflet for SUI and POP surgery – nothing has been implemented. An Interim was issued by Prof Willett last year in which he set out he would recommend that these patient leaflets should be adopted by all medical professionals dealing with prolapse conditions, it was left that it is up to the individual Hospital Trusts and hospital consultants to “adopt” these leaflets for use. Which means that if a mesh proponent wants to keep using mesh implants they can still do so without giving any more information to their patients then they have done hitherto. this explains why patients continue to be harmed by mesh, because there is no regulation on giving open and transparent and informed consent BEFORE the patient go for this type of surgery. Not only women are affected by this loophole in the law about consent, but also men who have mesh implanted for hernia conditions. Men also find they have adverse reactions to mesh. Many mesh victims do not know that they can ( and they should, REPORT their adverse reactions to the MHRA under the YELLOW CARD SCHEME. Details here:
    https://yellowcard.mhra.gov.uk/
    Ingrid Hardacre

    Posted by Ingrid Hardacre | May 26, 2016, 7:22 am
  231. It is also really important that you report to your Member of Parliament, so he/ she can report their findings to the house. Link here to find your member of Parliament:
    http://www.parliament.uk/mps-lords-and-offices/mps/find-your-mp-help/

    At present there are about 20 MPs who have been contacted by their mesh suffering constituents about their mesh horror stories. Considering that there are about 620 MPs in the House of Commons – it is not a great number of MPs that are aware of what is going on. This site and others such as Sling the mesh campaign and tvt-mum/petition and meshies united have campaigned on mesh issues for a great number of years. Sling the mesh is a FB site which has managed to reach out to more people in a short space of a year. to have a Government Enquiry at the House, mesh sufferers need to collect 100 000 signatures ( via tvt-mum website) this seems to be a mission impossible!
    Ingrid Hardacre

    Posted by Ingrid Hardacre | May 26, 2016, 7:23 am
  232. In stark contrast in Scotland mesh sufferers only needed a petition of 1000 signatures, which they achieved in a matter of weeks in 2013/14 and the Scottish Parliament listened and a moratorium was put in place to hold mesh operations in Scotland. Anyone wishing to find out more about what the Scottish mesh survivors have achieved through being united in their cause – can see it on their website. http://www.scottish mesh survivors. Recently one tireless campaigner has found out through astute and tenacious research on reported mesh complications on the BAUS website, that more patients in England reported their problems due to mesh devices such as TOT or TVTo, which are really much more dangerous by the nature of how they are being implanted via the obturator space, which when injured, by the insertion method,
    Hope the above three posts help to gain information how to make your voice heard and to help to fight your own corner of each individual mesh mess.
    Ingrid h

    Posted by Ingrid Hardacre | May 26, 2016, 7:25 am
  233. does any one from south africa has a bladder sling inserted?

    Posted by barbra | May 30, 2016, 12:55 pm
  234. looking for a good urologist in south africa who can remove a bladder supris sling

    Posted by martha | May 30, 2016, 12:58 pm
  235. Hi Barbara and Martha. have you searched on the Internet in SA regarding Mesh complications. Or Bladder sling complications/ Prolapse/hernia complications – self – help groups on mesh problems? You can see if you can make contact with http://www.tvt-mum/petition and join there. the author of that site has campaigned for over 10 years on mesh awareness and complications with surgical mesh implants. You can ask if they have any sufferers from SA. Let us know how you get on. How long have each of you suffered with mesh complications and where did you have your operations? Thank you for using this excellent and informative site, how did you find this self help website?. You can also try Mesh Medical News Desk and ask there. Jane Akre is an excellent campaigner in the US. Take care, you both. Ingrid H.

    Posted by Ingrid Hardacre | May 30, 2016, 7:29 pm
  236. Hello Barbra and Martha. Here is a link to a mesh injury world mapping. Hope this works for you: Fill it in and see if you can see your area listed, when you next go to that site. If it does not work – let me have your email addresses and I will email it to you.

    http://l.facebook.com/l.php?u=http%3A%2F%2Ftransvaginalmeshlawsuitlawyer.com%2Fmap%2F&h=HAQHfKUQE&s=1

    Remember to sign the petition on tvt-mum/petition , so that your names can be counted on that excellent site. Discribe briefly what happened to you – sign with a name and use the window of opportunity wisely, as you only get one chance to give your voice on that petition. Good luck. Ingrid H.

    Posted by Ingrid Hardacre | May 30, 2016, 9:15 pm
  237. Hi there, I just wanted to update you. I first contacted the group in 2014 after having had a TOT implanted in 2007 in the UK and then having moved to Australia. After being sent from pillar to post over the last two years I have finally had my TOT mesh removed. This has involved my travelling from Australia to the USA Missouri to see Dr Veronikis. He has 90 % removed the mesh other than a small piece on the right side that was just too deep in the obturator muscle. He explored the muscle for over an hour and decided enough was enough as the risks of complications increases with the length of time the surgery goes on. I do believe that if Dr Veronikis couldn’t get the last piece then there is no other surgeon that would be able to either. I am 8 days post op so very early days. I did contact Natalia Price in Oxford as it would have been easier for me to travel back to the UK and then to convalesce with family, however she was unable to remove the TOT. I have had to self fund the trip to the USA and will be out of pocket over $40,000AU. I hope to now be able to at least get back on the road to some sort of recovery and to get my health back and to live my life again. If anyone is in a position to get to see Dr Veronikis, he is an amazing man and an incredibly talented surgeon. I am happy to provide you with his contact details of anyone wishes to make contact with him. The whole process was very easy to organise from Australia. Sending love and hugs to you all Andrea

    Posted by Andrea | May 31, 2016, 3:54 pm
  238. Andrea. How wonderful to hear from you and your update that your TOT has been removed, albeit a little bit left in the Obturator muscle . 8 Days post op – very early days. But great to hear you managed to get help. WE thank Dr Veronikis for your chance of a better life without that dreadful mesh inside you. Continue to heal well and recover. Remember it takes 2 years to completely heal from an operation. do take care of your self. Blessings Ingrid H.

    Posted by Ingrid Hardacre | May 31, 2016, 4:29 pm
  239. Hi Andrea, can I ask… Why wouldn’t Natalie price remove your tot? I had mine inserted last July and have just today had it divided. If my problems don’t subside, which I’ve been assured they should, then the next thing is to have it removed. I’m just curious why she wouldn’t remove it for you as she would be my only hope. Hugs for a speedy recovery xx

    Posted by Vicky | May 31, 2016, 5:59 pm
  240. Hi Andrea – many many thanks for your update – expensive but hopefully gives you your life back when you have recovered. Ingrid is so wise – allow lots of time to recover and don’t expect too much too soon.

    Hi Vicky – unfortunately Natalia Price (who removed my TVT) cannot get TOTs out because their point of entry is through the groin, not the pelvic space. She uses keyhole surgery and it is not possible to access TOTs that way. Sohier el Neil used to remove TOTs but I haven’t heard of her availability recently. I’m so sorry to bring that news.

    Liz

    Posted by Liz RH | May 31, 2016, 6:06 pm
  241. Vicky , I contacted Natalia Price and she informed me that she removes TVT’s and not TOT’s. No one in Australia can successfully remove TOT’s hence my trip to the States. I had my TOT divided in Aus and as I had been warned thinks got 100% worse. Partial revisions do make it harder for complete removals to be successful. I wished I had of listened to others before I had the partial removal. I wish you all the best and hope that yours give you some relief . Andrea X

    Posted by Andrea | May 31, 2016, 6:08 pm
  242. Thanks Liz, yes I can now hopefully start to get my life back on track. The difficult part is now going to be resting . I am not one for sitting around doing nothing but I am determined not to jeopardise my recovery . Andrea xx

    Posted by Andrea | May 31, 2016, 6:11 pm
  243. Hi Andrea and Liz, thanks for your replies. I got confused…mine is a TVT not a tot. I had it divided due to not being able to empty my bladder fully which will affect my kidneys in the long run. I’m not narrow minded enough to believe that every single person who has had this procedure done will suffer problems, I was happy to go with my consultants advice to have the tape divided to allow me to wee but if God forbid I do have problems in the future I know I can contact natalia and use this site for advice and support. We’re all different, what effects one will not effect the other and subsequently there are thousands of women who have had this without any issues what so ever, my gran being one of them who had hers inserted when she wasn’t much older than me…she’s now 73! Good luck and well wishes to all xx

    Posted by Vicky | May 31, 2016, 6:51 pm
  244. Vicky, you are right everyone is different and I hope that you are one of the lucky ones. My bladder was also obstructed and that was the reason for the revision last year. In hindsight I do wish that I had waited and had it all removed in one go though. . My TOT was implanted in 2007 and I had no issues until 2014. I wish you well in your mesh journey Vicky. X

    Posted by Andrea | May 31, 2016, 7:28 pm
  245. Hi everyone, I had a TVT fitted in 2010 for slight stress incontinence. I have three children but none unfortunately we’re born naturally, I had to have them all by Caesarian section, so why the stress incontinence I’m not sure as I have been told my pelvic floor muscles were good. The problems started virtually straight after the op as my bladder wasn’t emptying fully so I was kept in for two nights. Everything seemed ok for the next two years apart from the odd urine infection but obviously trouble was brewing! I started having urine infections almost every month. This has been ongoing for nearly four years now, I have had urodynamics done, bladder scans, camera in the bladder, multiple other tests done privately of which the consultant was of no help. I have now been on antibiotics every day for eight months ongoing for at least for another five and having to self catheterise which also irritates my bladder. I constantly feel like I have cystitis coming on even after I have just emptied. My consultant has told me I don’t have irritable bladder or interstitial cystitis but do have slight inflammation just inside the neck of my bladder. When I can I have to sit on the toilet for about five minutes each time I need to go so I feel I have emptied but I can’t pass urine all in one go, it stops and starts and stops and starts until I end up with a trickle at the end. I now have another issue that has worsened over the last couple of years of a lot of back pain and discomfort with really achy legs. I have just had an MRI scan on my back but it shows nothing of any significance that they can say is causing the pain which I am waiting for spinal injections. I am now wondering if this could be connected to the tape as I have read a few comments about other ladies suffering with back and leg pain seemingly after having the TVT inserted. My consultant as nice as she is is very reluctant for me to have anything done to the tape (as she says I new the risk before the op) and it may make things worse. I have to say I do not remember anyone telling me how bad it may get afterwards, if so I don’t think I would have gone ahead with it!!! I can’t face this indefinitely but as yet have been offered no other solutions to the problems I’m facing! Sorry for the lengthy story! Some feedback would be appreciated. Thanks.
    Ann

    Posted by Ann Chadney | May 31, 2016, 11:11 pm
  246. Wishing you a speedy recovery Andrea.

    Best wishes christina

    Posted by Chrustina | May 31, 2016, 11:57 pm
  247. Hi Anne I’m suffering all of the above also each symptom caused by the tape. I attended hospital today and my surgeon had nothing to say to me today, he almost had his tail between his legs although very apologetic he hasn’t given me hope of any resolve or quality of life for the future. I’m sorry that all sounds so negative. He has however said that they are bringing a surgeon over from Greece who has experience in TVT and maybe she could help but he was not promising me.

    Posted by Christina | June 1, 2016, 12:18 am
  248. hi Christina, I’ve replied to your email. Hope it helps! Liz

    Posted by Liz RH | June 1, 2016, 8:07 am
  249. Hi Ann,
    Your situation is sadly all too common, with a long decline in pelvic health that medics don’t understand yet it relates to issues with the mesh plastic or placement. You are obviously in a painful and scary position. I do hope that you have read through these posts as you will learn a great deal about others’ suffering and some suggestions to move forward – obviously we are not able to advise other than to make suggestions but you have to research a great deal and then decide. Ingrid and I are the main respondents on this site and you will see what we have said to others about specialists and reporting your complications to the MHRA.
    Do not get a partial cut or division to the tape as we know from other women that this has worsened things, even if they go on to get a full removal. The only surgeon that we know of who can safely remove TVTs (not TOTs) is Natalia Price at the John Radcliffe, Oxford. Many women pay for a private consultation at The Manor and this gives professional and expert options to consider. If removal is the next step then NHS lists are slow but cost effective.

    There are support groups e.g. Sling the Mesh and Scottish Mesh Survivors.

    I do hope that this helps, and that you have time to read former posts on this excellent and informative site.
    Best wishes
    Liz

    Posted by Liz RH | June 1, 2016, 8:13 am
  250. Thanks Liz

    Posted by Chrustina | June 1, 2016, 3:17 pm
  251. I fully endorse what Liz has written and do wish you lots of luck.I had a TVT inserted around 2002 and foolishly had it “cut” due to urine retention 4 years later after which I had no end of problems. I eventually went to see Natalia Price –privately at first–and she removed the remaining bits of mesh but as I had left it so long it had eroded parts and has left me with nerve damage which,despite heavy pain meds,gives me a lot of pain when seated,so please don’t you leave things too long
    This was meant for Ann by the way as I forgot to state!!
    Hugs to you all
    Carole

    Posted by carole jarman | June 1, 2016, 5:32 pm
  252. Hello To All above. It is not clear where any of you live- you don’t say where you live or where you have had your TVt surgery or what device you have had. You obvioulsy came across this excellent site by putting into your Internet Browser ” The problem with TVt surgery”. I put in some links here for anyone who lives in New Zealand or Australia. they have some self help groups in those countries.

    This came through a mesh support group network Mesh in New Zealand 2016.6.3
    NEW ZEALAND
    http://i.stuff.co.nz/national/politics/80680631/MPs-call-on-Government-to-monitor-the-use-of-surgical-mesh-in-operations
    Calls to monitor surgical meshi.stuff.co.nz
    Advocacy groups have welcomed recommendations for a national register for the use of surgical mesh.

    AUSTRALIA
    Australian woman speaks out abiut how mesh has ruined her health. She re mortgaged her home to travel to America for mesh removal

    http://www.macleayargus.com.au/story/3937829/tonis-story-a-tragedy/?

    I hope this helps those that are not based in the UK. I would also like to recommend that you browse through this site ( Use the curser and scroll upwards)

    Liz and I have posted on this site for over 4 years and all our journeys and experiences have been shared right at the top of this much viewed topic page. Reading through various posts it will highlight that we are all mesh injured by a product that is “not fit for purpose” and performed in a dangerous way of inputting, by surgeons who have injured us through the method of input.

    Yesterday I learned of a word ( I had never heard it before) IATROGENIC I write large here, because I had a job spelling it into the Wikipedia web browser.

    Can you all have a look at this word on Wikipedia. I learned this yesterday – interesting – because we all believed we have been “harmed” by these slings, not only by a product that is not fit for purpose but also by the method of insertion and therefor by the surgeon who has inserted these tapes. Read on and check it out perhaps you can share this post.
    Excerpt from Wikipedia .. Please search out this description on harm done by others to others…
    Iatrogenesis (from the Greek for “brought forth by the healer”) refers to any effect on a person, resulting from any activity of one or more persons acting as healthcare professionals or promoting products or services as beneficial to health, that does not support a goal of the person affected.[1][2][3][4][5][6]
    Some iatrogenic effects are clearly defined and easily recognized,…

    There is little wondering why your surgeons and consultants look “crestfallen” when you , as a “now informed patient” can now tell them that you know – you are not the only one who has been injured by this operation! Sadly these medical professionals have known all this for absolute years and have been able to send most “dummies” away, by saying ” I have never had any problems”, “you are the only one”, “It is your body” ! Most of us have swallowed this comment and have gone away in fear, anger, disgust and disbelieve and dissolved in tears! ; that we could have been so stupid to undergo this ” minimally invasive” procedure that has changed our lives beyond recognition. I have written this statement several times over on this topic line – have a close look.

    As a parting note I am allowed to post this comment from a long standing meshie friend in the regio of Southern
    England.. we keep in touch and recently replied to me with this following statement. this should give hope to anyone who is struggling – especially with pain.;=

    “I shall be forever grateful that Natalia Price was involved in my mesh removal. I think I can honestly say that I have no pain now from the removal surgery. The pain I have now is from both the pudendal nerve block injection that hit the sciatic nerve and the osteopath I went to. But, I can honestly say, that apart from sitting on hard chairs, still a huge problem, that I can live my life normally and I am getting more and more active all the time, but still do have to take pain meds occasionally. But I feel so lucky that I have survived this mesh nightmare so much better than many and I put that down to finding you and L. on the internet (tvt-mum/petition), so I am eternally grateful to you both. I still do have ‘whoops’ moments, but good old Tena lady deals with that.”

    Please read further up – go right to the top of the beginning of the page.
    Greetings , blessings and good healing to you all.
    Ingrid Hardacre x

    Posted by Ingrid Hardacre | June 3, 2016, 4:53 pm
  253. Hi Ingrid ,just an update on my “woes”,I am off to the pain clinic on Friday to see if they have any thing different for me to try for my sitting pain!!Am on 1200mgs of Gabapentin 3 times a day with not much relief,oh how I wish I had put up with the stress incontinence that I sought help for way back in 1998 ,I still have said incontinence now and soooo many more problems despite having had 5 gynae operations all meant to help!!!Take heed any of you reading this that are still contemplating have a tvt fitted or wondering whether or not to find help getting one removed
    Hugs to you all
    carole x

    Posted by carole jarman | June 21, 2016, 3:19 pm
  254. I have tape removed 22 nd may 2016 and the very next day my problems started, I had burning in the bottom of my stomach and down both legs to my knees , I was fine in morning but as day went on it was unbearable , I was told in hospital it was nerve damage Witch my consultant denies I had it removed because of erosion I just feel no one believes me and it it reall stressing me out all I do is cry and pray I can get some pain relief xxxx

    Posted by Rose | August 3, 2016, 12:20 pm
  255. Oh dear, poor Rose I to have nerve damage so can well appreciate what you are going thro,do go to your GP and ask for some decent pain relief which may ,or may not help.I do hope it does as I have been suffering for over 4 years now,it drives you mad doesn’t it?
    Do get in touch again if you feel it will help
    Hugs Carole xx

    Posted by carole jarman | August 3, 2016, 3:45 pm
  256. Hi to you all. Rose – I just thought I would drop you a line re your pains. Your removal is very recent and so pain is expected after such a complicated operation. Removal is much more complex and a lot more tissues involved in the removal. I would like to give you hope in as far as you need to give yourself and your body time to heal. complete healing is estimated to take about 18 months to two years – that is inside your body. You really need to take care and not overdo things! Where did you have it removed? Do you live in the UK?
    I f you can bear it (hopefully you have a laptop – so you can use it without sitting too long) and go through all these posts on this page. there is lots of information for you to digest. Take your time and read a little at the time. I am sure your pains will settle. As we are all different nobody can really say how you will be after removal. Yes intcontinence may come back, but there are coping strategies. I just wear pads. I stick two , side by side, they are only the light panty liners. Pads are better than further operations. Every operation involves all of our bodies. I regret every having opted for the wretched TVt tape. Read plenty on here. Hope you will accept that healing takes time. Listen to your body and be kind to your self. Hi Carole, thanks for participating on this site. Take care you all.

    Posted by Ingrid Hardacre | August 3, 2016, 10:56 pm
  257. Hi all, I haven’t been on here for a while but thank you to the ladies that replied to my post then!
    An update now is that my consultant after more urodynamics has now agreed that I do have a flow problem. I had to self catheterise for some months and have now been on various antibiotics for nearly a year. When I go back to see her in September I have to make the decision whether to have the tape cut slightly or a small piece removed, she is not happy about removing it totally. After seeing some comments from ladies having things done I am in turmoil as to what to do for the best now! I don’t know how many alterations or reversals she may have done but can’t bear the thought of possible worse problems afterwards if I have something done. I find it very uncomfortable wearing pads even panty liners and always have done, if the incontinence should return which wasn’t massively bad in the first place. Knowing my luck whatever I choose to do will cause me problems!!! ☹️

    Posted by Ann Chadney | August 4, 2016, 1:54 pm
  258. Hi Ann,I shouldn’t really say “its nice to see you again”as its not when its on this site!!Oh dear ,what to do?well as you probably know I had my tape cut in 2006 and have problems to this day some of the pieces of the remaining tape fragmented and when I had surgery to investigate—carried out by Natalia Price in Oxford 2 years ago —a part had wrapped around the neck of my bladder.I now have nerve damage due to all the surgery,but I still feel I am better off having the mesh out of my body.Yes I have a lttle urge incontinence but nothing too awful and like Ingrid I manage with pads.What a shame you find pads difficult, is it just a sensitivity?
    The choice of course is yours but on reading posts on this site can you find a lady that is happy having it in situ?
    Good luck with which ever route you take
    Hi Ingrid hope you are well,give me a ring some time
    Hugs Carole xxx

    Posted by carole jarman | August 4, 2016, 5:40 pm
  259. Hello Ann. so sorry that you had such a difficult time with your tape. Yours is just one more adverse incident to testify that these tape operations are not good in the long term. I have not read much on this page for a while , so I don’t know where you live or who your Dr is? I would advice you to think carefully about having the tape cut, as this creates two raw edges under your Urethra ( Water pipe) It is well known that once the tape is cut it can curl up and cause more pain because of the raw edges and because toxins start leaching into the body even more. I can understand that your Dr may not want to remove it fully – ( she/ he may not have much experience in removal – and they would never own up to that inexperience- it is not good for their “street cred”. If you live in the Uk and you have access to Oxford I would recommend you see Natalia Price in Oxford. she has now done over 150 removals of TVT ( Retropubic tapes) and is really skilled in their removal. As Carole says we are all different and depending on how much surgery you had done before TVT insertion a removal will obviously be another op in your body. There is every likelihood that Stress Incontinence will come back after full removal. Like Carole I opted for complete removal because I did not want to risk the tape division – I wanted the tape out and live with the consequences of removal. In my case I am pain free, most of the time, I can empty my bladder well and I have the occasional urge incontinence when I leak before I can make the loo. I have coping strategies for that which work quite well. With me it depends how much I drink ( and we should all drink plenty – to avoid urinary infections. ) I sue two small (long) light pads next to each other and that is o.k. for me. I agree with you wearing pad is a pest – and it was one of the reasons why I opted for the surgery, but after the TvT insertion I have had severe urge incontinence which was very distressing for me as I had accidents beyond my control! I now know my bladder better and I can control myself reasonably. Don’t opt for removal by someone who has not done at least 20 or more removals. Stick with someone you have been recommended. Let me know where you live. Don’t rush into things. Look out for the article on this site called “10 good reasons to avoid mesh”. It explains everything very clearly. Good luck . IH. Carole I will ring you soon. I am working extra because of holiday locum work. So v. busy. xx

    Posted by Ingrid Hardacre | August 4, 2016, 10:34 pm
  260. Ann see if you can open this reading. If not copy the discription in the search box at the top of this page and then read it.
    You searched for “10 Good Reasons to avoid Mesh “.
    10 Good Reasons to Avoid Mesh
    POSTED BY TVTINFO ⋅ OCTOBER 14, 2012 ⋅ 17 COMMENTS
    If you are wondering whether to have synthetic mesh inserted for stress urinary incontinence or pelvic organ prolapse, then you may wish to consider these ten good reasons for avoiding mesh. Here are ten very good reasons below to avoid mesh: It’s a flawed product. Basically, vaginal mesh is a cheap woven plastic material which … Continue reading →

    Posted by Ingrid Hardacre | August 4, 2016, 10:39 pm
  261. Hi Ingrid and Carol, thanks for your responses. I have no idea what type of tape that I had inserted. My urogynea consultant is Miss Alex Blackwell and I had the procedure done at the Worcestershire Royal. (I live in the Worcestershire area in the UK by the way). That evening I was already showing signs of my bladder not emptying fully as I wasn’t allowed home and had to keep having bladder scans through the night etc each time I’d passed water! I have been having back problems which have got steadily worse over the last couple of years but I’m not sure if it’s related to the tape problem or not. My next appointment with Miss Blackwell will be 29th September ’16 by which time she will have spoken to colleagues to see if they have had patients with the same issue as me and the best way forward and will presumably want my decision on what I want done! I don’t know if she would do the procedure!, I cannot find any info on how many reversal procedures Miss Blackwell has or may have performed. I am just concerned time scale wise whether I would be able to get an appointment with Miss Price before my September appointment. As I feel at a loss as to what to do for the best I feel that her opinion on the matter to help my decision is the best way forward so do I get in touch with her secretary and take it from there?
    Thanks for your help.

    Posted by Ann Chadney | August 8, 2016, 8:16 pm
  262. hi Ann,
    I haven’t heard of Miss Blackwell.
    I would think that a call to your GP would ascertain what sort of tape you had inserted so you must find that out before going further. It’s likely that if you had insertion points on your pubic area then it was a TVT but insertion points in the legs are more likely to be a TOT.
    If yours is a TVT I would suggest that you arrange a private consultation with Natalia Price at The Manor and ask her opinion on the mesh. She has – as Ingrid said – removed many TVTs (but cannot remove TOTs) and is very sympathetic. It’s likely that you will get to see Natalia before your other appointment. If removal is recommended then you can transfer to the NHS list. Do please read the posts above these as we have put in a lot of detail on this subject over the years and you will learn from it.
    Hope that this helps
    Liz

    Posted by Liz RH | August 8, 2016, 8:37 pm
  263. By he way I responded before but the site rejected my input!

    Posted by Liz RH | August 8, 2016, 8:37 pm
  264. Hi Liz, thanks for your prompt reply. My op was in 2010 and I’m pretty sure that the insertion points were in my pubic area. I have tried to read many of the other comments to try and give me some insight as to what may happen after removal surgery which I find a little scarey, as I seem to be one of these people that whatever I have to have done never seems to be straight forward (meaning there always seems to be some slight problems afterwards!) hence the uncertainty about the way forward. I will email Natalia’s secretary to make an appointment, if when I go do I need to take any medical/consultants details about my problems with me or can she access them if needed or will she just discuss the issue and come to her own conclusion and decision about the best way forward for me?
    Sorry for all the questions but I’m not very good/confident dealing with such important issues.
    Once again many thanks for your advice.

    Posted by Ann Chadney | August 8, 2016, 10:11 pm
  265. Hello Ann.
    As Liz advises, go and see Natalia Price. Even if you don’t know which device you had – I am sure that Natalia would examine you and would be able to find out which device you had, because you would have some sort of scars , albeit now quite faded. Natalia will be able to see those. Bring as a much information with you as you can. Ask you GP what they have on your operation – they should have a copy of a consultant’s letter following your device insertion. Keep your GP informed and keep them on your side. They need to know that removal can only be done by few experts that is why Oxford is one of the leading removal centres – headed by Natalia Price. If you are unsure or nervous about going to see Natalia, i would be happy to accompany you for moral support, which is sometimes a good thing. I live about 1 hour away from Oxford, so I could join you there, if you feel you need support. Removal is a big decision. What ever you do – please don’t rush into any decision. Only have removal work done by experts , like Natalia. Any other doctor will probably just be using you as an experiment! It is your body and you are entitled to make your own decision , even if you are told ( emotional pressure!) otherwise from other doctors. Don’t be rushed. Meet Natalia – she will give good and compassionate advice. I had an appointment with her yesterday and she assured me that she is happy to help any ladies who are having difficulties and she is happy to remove any troublesome tapes if they are TVT ( retropubic) Removal is a complex and specialized operation and only skilled and experienced medics, like Natalia can remove them successfully. It is now widely recognized that not all surgeons who were putting these tapes in, were in fact skilled and competent enough to perform such an op in a delicate female area, with a product that is not fit for purpose. Stay in touch on this site – it has good advice,without being over emotional. WE all feel for you and we are glad you found this site. Very kind regards. Ingrid. xx

    Posted by Ingrid Hardacre | August 8, 2016, 10:49 pm
  266. Great to go into such detail, Ingrid – as always, you write in a way that gives information in an easily understood way.
    All good wishes, Liz

    Posted by Liz RH | August 9, 2016, 6:36 am
  267. I agree with every thing said by Ingrid and Liz I went to see Natalia privately and then transferred to her NHS list for my removal of the remains of my tape.I was able to see Natalia the week after ringing her sec but of course you may have hit the holiday period.I asked my GP for a letter to take with me which she was quite happy to do —seeing a consultant in their private clinic means the Gp practice don’t have to pay a referral cost—Natalia is a lovely caring lady and I am sure she will put you at ease.-Like you it seems that I to make more problems for myself no matter what I have done—just ask my poor hubby!!—I am a retired nurse so youd think I would know better,but for some reason every operation I have had,and there have been very many over the last 30 year,I have ended up with another problem.However the surgery Natalia carried out was fine ,it got rid of the tape and my incontinence is very mild now.Yes I have this pain when sitting but that is caused by nerve damage which ,I am told could have occurred during any of the previous gynae operations I have had
    Good luck with what ever you do and remember whilst we cant take your pain away we do know what you are going thro
    Love Carole

    Posted by carole jarman | August 9, 2016, 4:33 pm
  268. Hi Carol & Ingrid, many thanks for your comments. I am trying to read as many posts as possible, but I’m still finding it a little scarey how many of all you ladies out there are still having some problems after TVT removal! I did actually email Miss Price’s secretary yesterday and she has offered me an appointment one evening next week which is good. I’m not sure if I will be able to get a letter from my GP as she only does two days surgery a week being Wednesdays & Thursdays, my appointment with Miss Price is Thursday 18th! I should be able to acces my medical records online now through my GP’s surgery, if so and I can find some relevant info would that suffice to take with me instead, or would it make much difference if I had nothing to take with me? Also does anyone know how much a private consultation with Miss Price is?
    Many thanks for all your help, and love and hugs to all you suffering ladies out there.

    Posted by Ann Chadney | August 10, 2016, 10:04 pm
  269. Hi Ann.
    The consultation fee I paid last time (June) was £200, but it is worth it. 18th August is really quick , so well done. If you don’t have any records then just make some notes on your important points. Like date and day of implant surgery, Hosp. consultant at the time. Any problems you had pain, not being able to empty and your extended stay, any bruising, or bleeding and other changes in your body, like swollen legs or feeling dizzy or sick after coming round from the operation.You may already have made some notes etc. bring those with you. Your GP can always send a letter of referral after your visit, as long as Miss Price gets it for your med. recs. for your file. My GP sent it off afterwards to her. A hint: I now always ask to see and have a copy of any letters that my GP writes, any referrals etc. That way you know what he has said and whether your GP has understood your problems. If he has not understood then get them to change it and approve it, if you are happy with it. make sure you take someone with you when you go to see Miss Price, so you and your chaperone can remember more of what was said. I know I was very nervous and very , very tearful , because of my horrible TVT journey and the way it had affected me and also how my poor husband was (and still is) affected.Hope this helps. Good luck.Where are you coming from in the UK, Ann?

    Posted by Ingrid Hardacre | August 10, 2016, 10:57 pm
  270. Hi Ingrid, thanks for the info. I will do as you suggest as I now don’t think I can access my full medical records as I thought, only medication ones at this point in time! I will start making notes in readiness tomorrow. My GP i think after this week is on holiday till 30/8/16 but can’t get into see her till 8/9/16 which I have booked, so I’ll speak to her then. I live in Malvern, Worcestershire (West Midlands) and my husband will be coming with me, I presume he will be allowed in with me as, as you say, a second pair of ears is good as I tend to forget things as soon I walk through the door!! I just hope he can cope with all the info! As like me he is worried that having tape removed may make more problems! I’m trying not to think about the appointment too much as I do get very nervous, so fingers crossed all goes well and I come out feeling somewhat enlightened.
    Thanks once again Ingrid.

    Posted by Ann Chadney | August 10, 2016, 11:28 pm
  271. Hi Ann, I live on the Welland Road outside Upton upon Severn (moved here in June). Would you like me to come and meet you and your husband to talk it all through? That was how Ingrid and I met 5 years ago. I’m self employed so can be quite flexible over timing in the day and can also come in the evening. Or you would be welcome here. I have a lot of information I can discuss and provide if needed, Liz x

    Posted by Liz RH | August 11, 2016, 6:47 am
  272. Hello Ann.
    If you can manage to go and see LIz you both would benefit from her guidance. She has an extensive, easy to understand, portfolio regarding all things mesh, especially leading up to removal and most importantly after removal, with lots of hints on how to take care of yourself after complete mesh removal. ( make sure that all the mesh should be taken out – it includes the small piece, under your urethra, which some surgeons – erroneously, recommend to be left in) As the years have gone by we all now know how mesh behaves and how dangerous it is when it is cut. ( Liz would may have time to explain that) There is an article on this site called something like : “How mesh behaves”.
    I had some thoughts after I had finished my post last night, on making further notes. Consider making notes on why you had this operation ( TVT mesh insertion) done in the first place. What advice/ options were given to you from GPs, consultants, or Women Pelvic Floor Physio therapist, before you agreed to the op. How long did you persevere with your PFE ( Pelvic Floor Instructions)?
    List your concerns and problems that you have now. For instance can you empty your bladder well? If you have frequent urinary infections it is likely that you are not able to empty fully. To empty – how do you have to go about it? Do you have to stand up to empty, do have to bend forward, for example? Have you had pains in your abdomen after insertion and have you lived with that pain, which was never explained? Many patients have encountered problems with intercourse and were not believed.
    I hope I don’t offend by being open and honest with my questions that I would suggest you answer for yourselves.
    If I had known more about this op ( I did not do any Internet browsing in 2010) I would not have gone ahead with it, especially as having pain below was one of my main concerns, apart from all other adverse side effects, and in particular the absence of intimacy.
    With regards to taking your husband in with you – it is absolutely necessary that he does, or a friend can come in with you. There can never be any question as it not to be allowed! It is our health and our bodies and our decision how we decide over our well being. Most doctors are now ok with having a chaperone. I always now take my husband with me to any GP appointment ( even if there is an examination – he sits the other side of the curtain) and I go with him. for example I spoke to a client of mine some months back explaining I now take my husband to any appointments, after my horrendous TVT mesh journey. The lady replied ” We have done that for years, we need to hear what it said and four ears listen better than two”
    If you consider that other religious persuasions have only women doctors or have translators to go to appointments. English is not my native tongue and I now insist that I see somebody whose “English” I can understand. apart from all the above reasons listed – we have patient’s rights and having somebody in with you in an appointment – is very much part of that. I now find, as I get older, I need to ask several questions more than once, so I can understand better.
    I went to see my GP in Germany recently and explained that I was so very fatigued and had concentration problems. A thorough blood test ( I paid for that) revealed that I was Vitamin B12 deficient among other deficiencies. I had to have two injections per week over three weeks and now have a monthly dose ( which I have paid privately) I now feel so much better. Interestingly the Daily Mail ran an article this Tuesday 9.8.2016 (full page spread) which reported the lack of Vitamin B12 in many of our population ( it affects mainly women) If you can access the article on line from the Daily Mail it is really worth reading. It may be something that your GP may want to do for you.
    We all need a good and compassionate GP by our side, and it sounds as though you are happy with yours.
    Natalia Price is kind, compassionate and takes time with you and she does not mind repeating herself if you don’t understand everything. After all you are contemplating another intervention, which is new in your lives.
    Take heart that you are being looked after well, and going private is a different experience and you get a little more time in your appointment.
    Hope all this helps and that you can manage to see Liz before you see Natalia. Very best of luck and blessings. Sorry this is such a long post. I believe in covering all events, because we are all in this mess because we did not have decent, honest and open and thorough explanation about mesh insertions at the time we saw our inputting consultants.
    Hope this all helps and that you find time to draw up some good notes to take with you. IH. x

    Posted by Ingrid Hardacre | August 11, 2016, 9:20 am
  273. As ever, Ingrid, your posts are fantastic, detailed and highly valuable. I’m so pleased that you are feeling better with the B12. I take this and have done since my removal….
    Ann – if you’d like to get in touch I’ll post my email as I can’t think of another way to provide contact details!
    Liz x

    Posted by Liz RH | August 11, 2016, 9:56 am
  274. Hi Liz, thanks for your comments, sorry for the delay in replying. I definitely have my appointment with Natalia on Thursday 18th, and yes think it may be a good idea to see you before I go if you can manage it. The only evening my husband would be free this week is Tuesday I’m afraid and I’ll only be available in the day tomorrow (Monday) sorry busy looking after grandchildren! Sorry that time is so short now.

    Posted by Ann Chadney | August 14, 2016, 9:51 pm
  275. Hi Ingrid, apologies too for not replying sooner. Thank you too for your information, I am trying to take in as much info as I can and will hopefully manage to see Liz before my appointment with Natalia on Thursday (can’t say I won’t be slightly nervous that day about the outcome). Thank you for your kind words and thoughts. I will keep you informed.

    Posted by Ann Chadney | August 14, 2016, 10:01 pm
  276. Hello Ann. Wish you best of luck for your meetings with Liz (if poss) and then Natalia. It is natural that you will be nervous, but Natalia is going to re assure you. She has put in so many of these tapes and she now knows how these products devastate lives. She is also expert now at removing these, because she is the specialist in removing TVT tapes Laparoscopically . You will feel better after seeing Natalia. Make sure you take notes or your husband takes notes. Ask Natalia to send you a copy of her findings to your GP, so you have a copy for you to keep and read over several times. I know she does that automatically – but if you ask – then she knows you need to be able to read what is after all, your well being. Good luck. hope you can meet with Liz. Nice of you to pledge to keep us informed. Enjoy your time with your grandchildren and enjoy this summer weather. Liz – thank you for your encouragement above. It is good to know we can help others.

    Posted by Ingrid Hardacre | August 14, 2016, 10:46 pm
  277. Hi Ann,

    Tuesday evening would be fine, after 7.00? I hope that you mean that you will both be free – not just your husband so I can talk to you both as it’s really helpful.

    Shall we talk on the phone – I’ll be in a lot of Monday but unavailable 12 – 2. In an attempt to avoid putting in too much detail, the number is same exchange as you 591444. Speak soon.

    Warmly, Liz

    Posted by Liz Reece Harris | August 15, 2016, 5:49 am
  278. Hi Ann,Do hope all went well at your meeting and that Natalia was able to offer you some help?Both Ingrid and LIz have given you some really good advice and I hope you will soon be mesh free if that has been your decision
    Hugs Carole x

    Posted by carole jarman | August 19, 2016, 3:48 pm
  279. just thought I would update you on my ongoing problems!!!Had a Ganglion Impar block carried out in tneatre yesterday,for this pain on sitting but ,as yet I cant feel any difference,so I guess it is the highest dose of Gabapentin for me for the rest of my days and even that doesn’t really even take the edge off it!!How I wish I had left well alone all those years ago when I strove to end my stress incontinence
    Regards and good luck to you all
    Love Carole xx

    Posted by carole jarman | September 14, 2016, 4:23 pm
  280. Dear Carole J. Thank you for your brave update. so sorry to hear that you had another op. Where do they inject the pain block for this sitting pain that is still with you? Remember that there is another meshie who had pain for years after removal… she is now managing with significantly less pain. Keep “ploughing” on. If you want to get in touch with this other meshie sometime – do let me know. It is good to stay in touch, albeit through adversity, nevertheless it is a bond amongst meshies.xx Take careXX Ingrid h. xx

    Posted by Ingrid Hardacre | September 14, 2016, 10:03 pm
  281. hi Carole, that sounds a really unpleasant procedure – do give it time to settle in. it’s so miserable having the mesh related pain and there are many of us who agree entirely with your heartfelt comment that we wish we’d left our leaks alone! The mesh legacy is one that few other than meshies understand. Take care, Liz x

    Posted by Liz RH | September 15, 2016, 6:51 am
  282. Hi Ingrid and Liz,thank you for your kind words and yes, please Ingrid I would like to be in touch with the person you mentioned if that’s ok?I am typing this sitting on my right leg only which is most uncomfortable ,so you can tell I have still no relief,my main concern is what happens when my body gets use to this dose of Gabapentin and there is no where else to go as altho it doesn’t help much I guess it must be better than nothing! My GP has explored most other drugs that I can tolerate and I have given acupuncture a go
    By the way the injections are given into the spine,just above the coccyx
    Love Carole
    Ps any one know how Ann got on?xx

    Posted by carole jarman | September 17, 2016, 3:47 pm
  283. Hi, I had my TVT done just over 10 years ago whilst living in Guernsey. I had Urodynamics carried out and was diagnosed with stress and urge incontinence. I was offered Physio which did not help much, the stress incontinence was really severe, my age at the time was 46. My Gynecologist suggested the tvt, he did say there was no long term evidence of success as it was a relatively new procedure. He also explained how important it is to completely empty the bladder to prevent uti’s, he said in some cases a second op might be necessary if the tape needed tightening (mine never did). I was also told that the op would not help with the urge incontinence, which I accepted).

    I have always been prone to uti’s, however since having the tvt and becoming post menopausal, they have increased. It’s becoming the norm that directly after sex, I end up with cystitis, this is really affecting my relationship as sex is now becoming an aversive! I’m worried about erosion and the possibility of auto immune problems, what would the symptoms be? What tests could I have done to determine the condition of the tape?

    I’m now wondering if I should have the tape removed?

    Posted by Jenny Fox | September 29, 2016, 9:25 pm
  284. hi Jenny,
    So sorry that you are in the unpleasant position of needing to find help for postTVT issues. There are a lot of us around. It must be miserable having so many UTIs and having to deal with the effects on your relationship. You have evidently done some research as you know about the possibility of erosion and auto immune problems – you would be able to feel the tape if it had eroded through your vagina or be in terrible pain if it was internal. Auto immune issues vary a lot. I don’t know of any tests that determine the condition of the tape because it becomes hidden by tissue that grows through it. However, as you will see if you read up this page, there are women who have had help with the tape issues through discussion with one of the two UK specialists that we are aware of (if there are others that would be good to know…). Natalia Price is in Oxford, and Sohier el Neil in London. You can usually pay for an initial consultation privately to find out the situation, possibly having related tests. However, TVT removal does not mean instant relief: it’s a big operation with risks. On the positive side, I don’t think I would be here if I had not had mine removed as I was crippled by the TVT. I still have some nerve pain issues but they are manageable on the whole with topical pain relief.
    If you feel it would be helpful to discuss with an expert and can afford it, I would suggest you book an appointment at The Manor with Natalia Price so you can find out more about the issues you are dealing with and consider your options.
    Best wishes, Liz

    Posted by Liz RH | October 1, 2016, 10:46 am
  285. Hi Liz, many thanks for taking the time to reply!
    It’s good to know who the experts are in this field, finding the right person with expertise is half the battle. I feel shell -shocked to say the least and never even thought there could be such dire consequences in the long term to having had TVT. I do feel in a better position now though, having found this information and support group.
    Regards
    Jenny Fox

    Posted by Jenny Fox | October 1, 2016, 11:57 am
  286. Hi all.
    Awesome site. So glad I stumbled across it.
    I am in Australia. Here’s my story….
    I had tvt surgery and posterior repair done 3 weeks ago today for bladder incontinence/slight prolapse and thinning vaginal wall. Had all the usual pre tests eurodynamics etc.
    In January I also had anal sphincter repair which I have had no issues with.
    All problems associated with hysterectomy at 26 (I’m now 47) and weakened muscles I was told.
    I was never given info on this procedure other than being told a sling is used to hold the bladder up and mesh to “thicken” the vaginal wall. I was just given the mandatory “how to look after yourself following prolapse surgery”
    Now 3 weeks later I find myself searching for anything on tvt slings and posterior repair.
    I have 2 stab sites either side of upper groin. Left side healed hardly any pain on movement but right side feels tight and although stitches have gone I am left with a large hard pea sized lump and its painful to touch.
    Initially I couldn’t really feel anything inside me but now I can feel what I think are the stitches just inside the vagina. I managed to have a look about 10 days after surgery and jeez its not pretty in there!! But today I can feel the stitches more and when I looked it almost seems like the whole surgery area has “dropped” a little bit as it all appears closer to the vaginal entrance than before. Is this normal or something not right?
    As for sex I cant even contemplate that. My fiance asked last night if the 6 weeks were up yet!! I have a feeling things are going to be a bit difficult in that department and I’m dreading going for my 6 week check up down there!
    I also have a constant pain on right side of pelvic area which goes from mild to severe depending on what I do.
    I dont think there has been any real improvement with needing to go for a wee all the time but I drink an awful lot (mainly coffee by the bucket load) so I guess its early days. I havent had any other bladder problems post op like some.
    I’m not the worlds best patient and have probably done more than I should’ve so far. I havent lift anything heavy though.
    I did have a feeling early on especially with sitting, something I can only describe as a tampon inserted incorrectly that would bend when you sat. Now it just feels like there is just something wanting to push out.
    Now after reading all these horror stories and watching the surgery on youtube I wish I had never had it done!
    Already thinking about trying to get it removed before its too late.
    I’m not sure if there are any success stories. I havent found any!
    Are my symptoms above what others experienced just after surgery?
    I have another 3 weeks before my check up but I was planning to try and go back to work on light duties next week for a couple of weeks. But not sure now.
    Cant believe how many women have life changing issues for the worse after this surgery.
    To anyone who finds this site pre surgery – Dont do it!!
    Best wishes to all x

    Posted by Kaz | October 5, 2016, 11:15 pm
  287. Hi Kaz, I am too in Melbourne Australia. I had my TOT implanted in 2007 in the UK. I had it removed in May this year in St Louis Missouri USA. There are no surgeons in Australia with the expertise to remove TOT’s. Sorry to hear your story. It is so typical of many women. There is an amazing Australian support group that you might be interested in having a look at. There are an amazing group of wonderfully supportive women in it that have kept me going at my darkest times over the last two years. Take a look at it and I hope you find the answers you are looking for. Andrea
    https://www.facebook.com/groups/AustralianPelvicSupportGroup/?ref=ts&fref=ts

    Posted by Andrea Donaldson | October 6, 2016, 9:07 am
  288. Hi Kaz, really sad that you had to find us, if you know what I mean. Your TVT surgery is indeed recent and the recovery takes a long time – probably longer than you were told. However it does all sound rather odd. Unfortunately I – nor anyone here – can really say whether or not things are as they should be at this stage.
    It’s great that Andrea has been in touch as she knows your system better than those of us in the UK!

    I had my TVT removed and am 95% restored and lead a very active life, combined with an intimate life with my wonderful new husband (the pain levels are low enough not to get in the way unlike when I had the TVT in – I was crippled). I still have a sore place on the external soft tissue, and some nerve pain but I manage them with topical pain relief. Natalia Price did a wonderful removal – but that is a big operation once the mesh is embedded in tissue as all the tissue has to be cut away.

    Not in a position to ‘advise’ as you have to make your own decisions, but this is indeed a great site and you can learn a lot from it and there are other good sites. I honestly don’t know what your medical options are in Australia so hope that Andrea’s link can help you.

    With best wishes, Liz

    Posted by Liz RH | October 6, 2016, 9:19 am
  289. Hi Kaz, Andrea and Liz.

    Thank you Kaz for finding this site. What sort of device have you been implanted? May I ask what did you put into your search button to come up with this site?
    I am so really pleased that you have a dedicated mesh problem site in Australia. I will make not of that one in my own records. Kaz your case sounds just like many – please have a scroll up on this page and you will see very many hints and entries and heartache of all mesh patients on this site. As for 3 weeks post op it is quite early in your healing stages. You will probably have some of the stitches dissolving, which feels a bit strange and you may find some on your sanitary pad. Make sure you go and see your GP, so he can monitor your progress and look at your lump. Did you have the same surgeon for all your 3 procedures? I am sad that you have not been told much about a Stress Urinary TVT sling, by your consultant. He should have also told you that healing takes a lot longer than the 6 weeks you read in the fancy brochures or patient leaflets (if any are given, at all!) Andrea or your Oz website will probably direct you to your appropriate Authority, where you can register your adverse incident re action. In England it is our yellow card system from the MHRA – which are linked to the NHS/ Government.
    Make sure your GP is on your side. With hope for a good recovery. Ingrid H.

    Posted by Ingrid Hardacre | October 6, 2016, 4:06 pm
  290. Oh dear,yet more poor ladies on the site—I wouldn’t dream of saying “welcome”!!Like Liz and Ingrid I agree that you,Kaz,are very early in your post op recovery,you may well find that given the right amount of time things will calm down.Going by my own experiences I have found that having more and more surgery only makes matters worse;I started off with a hysterectomy in 2000 done for a prolapse that was still there after the op as it had been my bladder prolapsing and not my womb!!!Afer that I had 3 more repairs plus the tvt ,which was eventually “cut”–perforating my bladder at the same time!!–,years more of pain ,then I met the lovely Natalia Price who removed the left overs of the mesh that had wrapped itself around my bladder.Sadly I now seem to have vaginal nerve damage ,so have pain when sitting that no amount of drugs seem to help—-How I wish I had put up with a bit of incontinence all those years ago.My poor hubby must feel the same as there has been no bedroom action for about 8 years now
    Liz you mentioned nerve pain ,can I ask what you use for it please Hi Ingrid,hope you are well?
    Hugs to you all
    Carole

    Posted by carole jarman | October 6, 2016, 5:30 pm
  291. Hi Carole, it’s really tough for you and your husband – so painful, never forgetting the surgery for which you wish you’d been told about the risks.
    I have been taking methylcobalin B12 supplements 5mg a day for several years and think it helps. Some research indicates that it can help nerve damage. However I find that Freeze Gel or any ‘cryothermic’ gel really helps. I do also have capsaicin (hot pepper) cream and that sometimes helps but it also leaves my skin sore if I use it too many days in a row! I find that I need to apply the freeze gel 1-4 times a day but I never really work out why the pain is worse some days than others. It’s easy to buy at supermarkets and pharmacies and on line. Hope that helps. Liz

    Posted by Liz RH | October 6, 2016, 5:47 pm
  292. Thankyou to everyone for the feedback. Andrea I have requested to join the facebook group now. Thankyou for the link. Today seems a better day. Maybe I am just pushing myself to hard! Not liking the weight gain over last 3 weeks though. Tried to put my uniform pants on yesterday. Mmm might have to go on a crash diet!! Anyone else put on weight? Its like rubbing salt in an already bad enough wound! X

    Posted by kaz | October 7, 2016, 1:17 am
  293. Hello Kaz. I am glad that you have joined the Oz group. I just had a look and I am in touch with Jacqui Scott, who is a mesh warrior in NZ. I have also requested to join. What device have you implanted, Kaz. Is your GP understanding and supportive of your problems? Hope things will settle. BW Ingrid h.

    Posted by Ingrid Hardacre | October 7, 2016, 8:31 am
  294. Hi Ingrid. I had this surgery done as a public patient (I didnt have the funds this time for the gap with private, unlike when I had my sphincter repair done privately) so all I know is the private consultant was in the theatre but one of her underlings performed the surgery. When I first saw her as a private patient for eurodynamics she told me then it was called a tvt-o sling and that was it. I ended up going to see a normal dr tonight (not her) as one of my stab sites in the groin had swollen and then burst this afternoon. My normal family dr has since retired and this “dr” had to google in front of me what tvt was and the procedure. I had to plead with her to check “down there” too in case any other infection. Eventually she did, well just looked but didnt feel and said it looks ok. IT LOOKS OK!!! My god she didnt know what the procedure was and yet can tell me it looks ok. Now I am on antibiotics, funny but never had any when I left hospital which I thought was strange, my groin and lower belly really aches, feels like something wedged in there and I just generally feel crap at the moment x

    Posted by kaz | October 7, 2016, 1:42 pm
  295. Hi Kaz thanks for your reply. TVT -o are more problematic. Your situation highlights exactly where we are at. General Practitioners (GP) don’t really know anything about these operations. In your case, however, it is essential that you have a “gentle” internal examination, especially as this new doctor has not heard about the op. Is there a senior GP in your practice? There has also been a theory, that private patients had now problem? this turned out not to be true, because it is the product/plastic mesh that is the problem (not fit for purpose) and also the method of insertion which is the problem. When you get time – have a look at this website: http://www.scottishmeshsurvivors.com Scotland had a very high rate of serious adverse incidents with the devices they were implanting in that Country. TOT and TVT- o . The website is very clear and give lots of information which I know is open and honest. I believe it is not an interactive website, but there is much hope and determination among the Scottish mesh fighting girls. When you have had a look, let me know how it helped you. When you have a moment do scroll up to the top of this page – it has lots of thoughts and patient’s thoughts on it. Take care. Ingrid .

    Posted by Ingrid Hardacre | October 7, 2016, 2:42 pm
  296. Hi Liz,have found Freeze gel on line ok but is it ok to use internally,am sure you must be using it there!!
    Luv Carole

    Posted by carole jarman | October 7, 2016, 4:04 pm
  297. Ah… had not appreciated you were thinking internal rather than sore skin. Probably a bit stingy for internal use. That’s not very helpful to you then! It won’t damage you though so you could try a small amount. I have mistakenly got it on very tender skin and although it stings, it is also helpful.

    x

    Posted by Liz RH | October 7, 2016, 4:13 pm
  298. Hi. I had my surgery done in 2009 for what was then both prolapse and slight incontinence issues. I have been left with constant severe pain. The repair work to the back wall has damaged nerves leaving me now with bowel issues and no gut motility. I now can no longer evacuate my bowels as I was able to prior to the surgery so must now use a prescribed irrigation kit daily. My prolapses – womb and bladder are much worse. I have gone from a pad to at times needing protection on a diaper scale size. I often do not make it to the toilet in time now. The pain is beyond description – it varies in intensity but on the worst days which tend to now be frequent, I am unable to find any comfortable way to sit, stand and function fully. The quality of my life has been severed dramatically by this surgery. I have had and continue to have an uphill battle to find help and acknowledgement of the damage this surgery has left me with. It is a huge comfort to find this site. Thank you.

    Posted by J.M. | October 9, 2016, 9:49 am
  299. Hello, it sounds an absolute nightmare for you. I have no doubt that the pain is miserable to cope with and it is just awful that you are in this situation with so little acknowledgement of the issues. That is almost the worst aspect: you should have the utmost support to improve the situation, not denial. I’m glad that you find some comfort here: there are many sites now dedicated to supporting women with mesh issues and you can learn a lot from them.
    Wishing you all the best, Liz

    Posted by Liz RH | October 11, 2016, 9:18 am
  300. I now have these bowel issues as well after two tvt removals . There is certainly something very similar going on.

    Posted by Lisa | October 11, 2016, 10:48 am
  301. It is funny how these bowel problems are now being mentioned as I to have a slight problem which is not daily and I P
    had put it down to an “age” thing but am mentioning it to my GP on my visit next week.
    Liz ,thanks for that,think I may be too nervy to try Freeze inside !!!I have now got a tens machine which I do find helps a bit if I use it in the evening when I am going to sit around more
    Poor poor you JM I do wish you could find some help as your life must be unbearable .Do you have a family?

    Posted by carole jarman | October 11, 2016, 3:55 pm
  302. Hello, Thank you tenfold for taking time to message me. I’ve been living with this and managing alone for the last seven years so to find this site and feel connected with others who really know what i’m going through and how it feels is like pure gold to me. I have tried so many times, through so many channels to beg for help in all the places you’d expect to find it, at this time, i’m attempting once again to ask for help but whichever way I turn, i’m facing these professionals closing rank. I’m discovering just how deep the layers of silence go and it horrifies me. I am beyond lonely now. I have seen the worst in those we are told to trust and have come away feeling as though i’m from another planet. The lack of compassion and thoughtfulness over this colossal issue is staggering. When you are encouraged to explain how your most intimate places of your body feel after this surgery, and how lost you now feel, almost as though you’re grieving for who you were before the surgery, and then to watch them switch off from you, shut down, refuse any acknowledgement whatsoever, carefully choosing their words with you, the silent threat of a possible lawsuit tapping them on the shoulder. The sense of utter helplessness for me, is huge. The anger that rises when the pain is at its worst, is terrible. I have days when the pain is so intense I have to crawl. Yet, these professionals refuse to acknowledge that the mesh inside me for both procedures are to blame. I use pain medications, oral and topical, which all have side effects so I use them with great caution. I live on liquidised food, and I use the blender and the juicer to keep me going and also top up with supplements. Prior to the surgery, I was a great walker, into my yoga since a young girl and worked a very physical job over years. I was preparing for a new start after the surgery and was planning on a completely new line of work but i’m just sad I was convinced so well by this surgeon. Such a mistake. I thought I knew about pain before but I was so wrong. Childbirth for me was nothing in comparison to this pain. I’ve been in accidents, i’ve been hurt very badly, but this is beyond anything I can describe. Thank you so much for this site. It symbolises a ray of light and hope for me.

    Posted by JM | October 11, 2016, 5:31 pm
  303. Dear Carole, Thank you so much. My children left the nest many years back and I live alone. I literally spend my days now just trying to look after myself and keep going. I used to blend the babies food years ago but to be doing this now at my age is a real challenge, and I think true to say also, that i’m mourning the loss of cooking, enjoying my food and sharing food with others too. I loved to cook at one time. Now i’m down to my beloved blender and juicer, but nothing will ever be the same again re. having a ‘meal’.
    I use a tens machine too but on the high pain days/nights when the scar tissue is agony and the whole area is as though i’ve been severely attacked, that’s when it’s a tough call to know what to do. It takes all my energy and focus to function when it’s on that scale. I am determined somehow, somewhere to find a consultant who will have a shred of compassion and be able to help me. Maybe reaching for the moon, i’m not sure, but I have to keep hoping. Where I live, makes it that much harder, but this is worth fighting for, even if only to somehow prevent another generation of people suffering this agony and to shine the brightest spotlight on these procedures/devices.
    Thank you once again for your message – its comforting and amazing to feel connected to people who speak the same language. With the whole TVT issue, so many people unaware of the high cost to your life and health. When you research how much the consultants are paid to do these procedures, your job drops and you can be forgiven for feeling so much anger.

    Posted by JM | October 11, 2016, 5:54 pm
  304. You write so eloquently, JM. Your pain is so clear and the mourning for what was is so understandable. Yet it’s tragic that you have so much to cope with and have lost trust in those who were meant to ‘do no harm’. You certainly are not alone: many of us are professionals who now doubt the medical profession – and you have more reason to feel let down than me. I agree that childbirth is nothing compared to the pain of mesh – yet we are not listened to. If cars had anything like the failure rate of mesh, the affected model or part would have been removed from use immediately. Yet doctors go on trotting out that the benefits outweigh the risks. When did they last have the feeling of a cheesewire cutting through their intimate parts. Yes – I empathise totally.

    Posted by Liz RH | October 11, 2016, 8:06 pm
  305. Hi JM,I do so hope you can get someone to listen to you,are you in an area within reach of Oxford?—-you may well live abroad I guess—as I am sure she could help you.
    What pain medication do you take,I guess you have to blend food due to your bowel problem,oh dear what a mess someone has made of you
    If ever you want to just “moan” then LizRH will give you my email address
    Hugs to you xxCarole

    Posted by carole jarman | October 13, 2016, 4:18 pm
  306. Hi Carole, Thank you so much for your message, for your lovely offer and for understanding how this all goes. I’m very overtired again, very little sleep from deep left side pain and from the scar tissue. It’s hard to focus and function when it’s like this. Not one of my best days. Unfortunately, i’m not close to the hospitals where I might find help but I am in the process (a long process) of attempting to ask yet again for the necessary help to organise an appointment.
    I have been prescribed a whole host of pain killer medication but i’m very cautious when/how I use these as I know full well the side effects especially with long term use.
    Sending a very grateful hug in return xx

    Posted by J.M. | October 14, 2016, 9:15 am
  307. It a total nightmare to in flick on anyone. It ruin my life. Pain 24/7 sitting down offal. U cant walk any distance. Infection after infection. Shrinkage No sex no excise weight gain u feel as if u been kick in the crochet, left disabled a life of a dog. Not good enough after care women suffering and no willing to remove it. Shane

    Posted by fiona-darragh@live.com | November 6, 2016, 4:16 pm
  308. Hi Fiona. i have posted on here some information for you. I hope it is going to be posted for you to see. If not I will post again, or reply vial your email. Kind regards. Ingrid H.

    Posted by Ingrid Hardacre | November 6, 2016, 6:54 pm
  309. Hi Fiona. My first post did not get through. I will post again, later on or tomorrow. Take heart and be brave. xx Ingrid H. x

    Posted by Ingrid Hardacre | November 6, 2016, 6:55 pm
  310. So sorry that you are going through a nightmare, Fiona. We understand and have posted on this site many times so I hope you can read up and learn and feel supported. Warmest wishes, Liz

    Posted by Liz RH | November 6, 2016, 7:21 pm
  311. This proceedure totally distroyed my life and I was made out to be making a fuss over nothing. I have suffered from constant neuropathic pain constantly over the ladt 13 yeats. My life the way it was has totally changed and I am registered diabled because of it. No women should have to go through what I have. For the majority of sufferers their adverse reactions haven’t been reported by their consultant.

    Posted by Julie | November 20, 2016, 1:25 am
  312. Hello. I had mesh fitted about eight years ago. Over the past couple of years I have had one infection after another. Then about eight month ago I got horrendous pain in my right side made worse when moving, my bladder was so painful, with sudden need to go to the loo. I have had the camera in my bowl and bladder but they couldn’t find anything and an ultrasound which came up with nothing. I even had to give up work. Recently sitting has become uncomfortable as well, I seem to have a small bulge, something just dos’nt fell right. I came across the site when I started looking to see if anyone else has the same problrms, it is only now I am beginning to think it could be the mesh sling.

    Posted by eileen | December 12, 2016, 8:26 am
  313. Hello Eileen, It is certainly possible that the mesh is the cause – we know of women who have had trouble many years after sling insertion. It sounds very unpleasant for you – but ultrasound does not detect mesh unless it is a translabial scan. Do read this site – there are others as well. I hope you get some useful information about the range of issues caused, and some consultants who can help. Maybe consider following up with one of the two specialists. Warm regards Liz

    Posted by Liz RH | December 12, 2016, 9:55 pm
  314. Hello, I had TVT surgery 5 years ago. I know straight away that there was something wrong. I had pain from the external stiches site, slow urine flow and retention issues – I was not emptying my bladder completely and frequent UTI’s. The original surgeon carried out urodymanics and 3 stretches of the tape combined with cystoscopies. I was told that the tape was too tape which was causing the slow flow and emptying issues and the tape was lying on a nerve and I was prescribed Amitriptyline for the nerve pain, which I am still taking now. I was given a course of prophylaxis antibiotics to clear the infections. When I moved to another town I was referred for a second opinion. Over the course of months I was having UTI’s every month so to try to stop these happening it was suggested I self catheterise as the pooling of urine was causing the infections, but using the catheters was making the UTI’s worse. I have been having Cystistat treatment now for 7 months now and the treatment seems to be keeping the UTI’s at bay. I still have flow issues and retention problems which I have been told if these are not sorted will lead to further major bladder issues in future. I am now considering having the tape cut to resolve the issues but there are complications from this such as the incontinence may come back. The doctors all tell you about the benefits but do not tell you what may happen. I do not regret having the initial surgery as I no longer have stress incontinence but I wish I was warned about complications before the surgery.

    Posted by Joanne F | January 5, 2017, 9:50 pm
  315. Hello Joanne, Thanks for posting your story. You’ve had quite a lot of trouble from your TVT over the years – it’s miserable to have the frequent UTIs and to have to self catheterise. Glad that there is some relief from UTIs at the moment but not ideal to have the possibility of the tape being cut. You need to find out what that really means and ask as much as you can about possible side effects: if the ends are loose, where to they go in your body? Do they migrate and cause more trouble in your pelvic region? What does the plastic do when the ends have been cut?

    I totally agree that doctors never tell you about the possible complications. Too many of us have been caught out – so it’s important that you check this out in case you have any further and more damaging effects if you have the tape cut. It would be good to know more about tape cutting from any women who have had this procedure – my tape was fully removed.

    Very best wishes, Liz

    Posted by LizRH | January 7, 2017, 6:43 pm
  316. I am trying to find out the serial number off a gynecort Tvt bladder sling….any thoughts?

    Posted by Rebecca Waldeier | January 10, 2017, 12:26 pm
  317. Gynecare,,,Ethicon Tvt sling..

    Posted by Rebecca Waldeier | January 10, 2017, 12:36 pm
  318. I need need to find this out!! My bladder will never be the same!

    Posted by Rebecca Waldeier | January 10, 2017, 12:38 pm
  319. Hi Rebecca, Not absolutely sure on this one but I have a feeling that you will need to access your hospital records to get the serial number. That may cost but it’s worth asking your GP surgery first – the details might be there. Good luck – and please post here when you know the procedure. Liz

    Posted by LizRH | January 10, 2017, 12:39 pm
  320. Hi ladies, I’m an member of Sling the mesh FB group. Am on Twitter as Mesh girl N Ireland (@jackiedee68). Have had my TVT in for 12 years. Usual story of it’s the gold standard and never told of any risks. In fact was told it was a gauze I was getting so didn’t realise it was a plastic sling at all until 2015. My symptoms are chronic stiffness and limited movement in my legs. Can’t stand for Long due to pulling pain at my groin/thigh area. Can’t jog or run or do any form of impact exercise. Walking isn’t much fun either. A lot of weight gain for no reason which I can’t control despite rigid calorie control and suffer from fatty liver, stressed kidneys. High blood pressure and cholesterol and am on permanent supplements for folic acid deficiency even though I am a very health conscious person. I was diagnosed with fibromyalgia last year. I live in Northern Ireland and am aware there are lots of ladies like me over beee who have mesh complications and are totally unaware of the connection. I have been to every specialist under the sun over the years to try and find out what was going on but knew nothing about the possible after effects of mesh until i saw a news paper article in 2015. I went to a gynaecologist in September 2015 to see about the TVT and was met with lies and denial from the outset. I have had lots of tests but nothing done in N Ireland has shown a reason for my pain. I eventually took myself off to see Sohier Elneil in London last year and had a translabial scan in Croydon. My tape is sitting almost 2 inches higher up than it should be but fortunately there doesn’t appear to be any erosion. I have tried to get referred to England for removal but I need a consultant in NI to do this and as they are all pro mesh over here this has not been successful as they won’t accept that the mesh causes these problems and I honestly think they are so desperate to keep the lid on it all over here they would rather you died. I am not the only Woman here fighting this but we have all been treated the same. I have started a local Facebook support group called Northern Irish TVT, TVT, hernia and prolapse mesh victims in case anyone here wishes to join. I was talking to a lady in America who has had removal surgery from the great Dr Raz. She was suffering similar issues to me re liver and kidneys and even the weight thing and he has told her That when the mesh starts to degrade the body cannot cope with trying to filter all toxins that are being released. That just scares the life out of me. I’m only 48 so I am now considering getting a loan and getting this crap out of my body before it kills me. There is no one in N Ireland who can FULLY remove this crap but they are never going to agree to send us ladies over the water due to the cost

    Posted by Jackie dee | January 18, 2017, 10:23 am
  321. hi Jackie,
    Thanks for sharing your story. It’s a grim one and all too common. I have known UK based women pay to see Dr Raz… You are in a really tricky position with the lack of funds to pay for your mesh to be removed, and yet you obviously have had a scan result that shows it needs to come out. Just awful for you. Well done you for setting up the support group – sometimes it feels so helpless not being able to bring answers to people’s mesh problems – and it shouldn’t be like this, should it?!

    As someone who had my TVT removed 6 years ago all I can say is that I have my life back… if you can get a loan and manage the payment, it is worth considering.

    Warmly, Liz

    Posted by LizRH | January 19, 2017, 3:13 pm
  322. Was so upset reading your post it sounds like me
    i have fibro no thyroid and ME my consultant did say
    its possible to remove my flippin mesh but he wont
    as its a very long operation and no guarentee i wont
    end up worse off very upset i to have the groin pain
    will mention it to my consultant gp put it down to my bladder
    problems thanks for the information one depressed lady
    in somerset

    Posted by julie raven | January 20, 2017, 7:18 pm
  323. Hi Liz. The chronic groin and hip pain is one of the possible risks of the TVT op. It’s mentioned on the J&J Ethicon TVT brochure and in many other sites so your doctor doesn’t know their stuff. If you can get a referral to one go the 3 main mesh removal doctors they might be able to help you. Not sure how far you would need to travel but apart from the 2 surgeons already mentioned here there is Mr James Moore in Eastbourne. He’s supposed to be very good and has a pleasant mannerism. If you are on Facebook I would really encourage you to join Sling the Mesh group. It is full of ladies going through the same thing. Also if you can get to a radio this monday 23 January at 1pm Kath Sansom from Sling The Mesh will be on the Jeremy Vine show on BBC RADIO 2 talking about this whole mess. Please read as much as you can and go back to your doctor and demand to be referred. It’s a different matter for me as I’m in N Ireland (although we still have the NHS – go figure) but you should be able to get referred to one of the mesh specialists via the NHS. Good luck and chin up xxx

    Posted by Jackie dee | January 20, 2017, 8:45 pm
  324. Sorry Julie that last post was for you!! That’s fibro brain for you

    Hello Liz too by the way…..xxx

    Posted by Jackie dee | January 20, 2017, 8:48 pm
  325. Thanks Jackie. I think your message is for Julie – who is suffering such a lot too. I’ve had removal that is overall very successful. I agree with what you say Jackie. There is lots of information posted on this site – do please see if it helps.
    Liz

    Posted by LizRH | January 20, 2017, 8:49 pm
  326. I have had this implant in Apr. 2015 for POP. Since then Ive experienced continued constant pelvic pain, erosions, repairs, then removal of mesh, subsequent fistula formation/reformation and repairs. A total of 8 surgeries to date, last being a 3rd fistula repair in 12/16. The pain is constant, can not walk/ sit nor sleep for long, voiding causes pressure pain and spasms can lead to bladder/bowel leakage. The UUI which was not the original problem I had surgery for, is now a full blowned dysfunctional problem.
    Any advice?
    Im told there is little else that can be done medically . I sought legal help but that hasnt been successful and Im almost out of time.

    K.S.

    Posted by Kim S. | February 8, 2017, 10:03 pm
  327. Please note any comments containing 3 or more links are automatically spammed. Please limit links in your comments. Thank you.

    Posted by tvtinfo | February 8, 2017, 11:31 pm
  328. Oh dear Kim ,I am so very sorry to hear of your plight,and whilst I cant really offer any advice I do want you to know that us fellow suffers are here for you.I to have had many operations and am still in so much pain when sitting,am on the maximum dose of Gabapentin which does nothing really and have also bought myself a Tens machine which I use in the evenings so I can lie and watch TV in not too much discomfort
    If you ever want to just have a rant I am happy to listen!!
    Hugs to you
    Carole

    Posted by carole jarman | February 9, 2017, 5:38 pm
  329. Hi! I had the TVT tape fitted in 2007, because of stress incontinence. Since then I have had numerous cystoscopies, including Cystistat for a number of months and drugs which didn’t agree with me. My surgeon recommended an anterior repair last year and since then the symptoms have become far worse, constant cutting pain, discomfort when sitting, difficulty emptying bladder, and squatting to do gardening is out of the question. I have had enough ! I have decided to consult the doctor again tomorrow with the idea that I try another gynaecologist out of the area. I live in the South West of England.

    Posted by Susan | February 28, 2017, 9:41 pm
  330. Hello Susan, I’m so sorry that you are having such awful times with the mesh. I wonder whether your interior repair included more mesh and has added to the problem, or whether the repair was with stitches that have interfered with the TVT. It is miserable – the cutting pain is agony.
    I realise that you might not get this before your appointment but you may well want to follow this thread and read what others have done before you decide. In the end, only you can decide as there are risks to all further treatment. Many women with TVT issues decide to pay for a private initial consultation with one of the experts on mesh and go from there. Mine was Natalia Price in Oxford – she is incredible. You could pay to see her without much delay at the Manor and then discuss options with her. Hope that this helps. Liz

    Posted by LizRH | March 1, 2017, 9:57 am
  331. Hello, I am suffering with stress incontinence and minor prolapse. I had an initial meeting with my consultant – I have been seeing a physiotherapist for some time. The consultant talked abut 2 options, the injections and TOT. I do feel that she gave me the full picture. I left feeling that TOT couldn’t be the answer, which has been supported by this site, which has been a great help. The problems that people have suffered sound appalling. I anyone on this site able to suggest what my other options might be? I have two children, aged 4 and 18 months. I just want to be able to run and jump with them without emptying my bladder. Thanks, Emily

    Posted by Emily | March 3, 2017, 7:42 pm
  332. Hi Emily, Really really pleased that you have decided not to have mesh. If you read further into other sites as well as up these pages you will see the risks that it poses – whatever the medics say. I totally understand that you don’t want to leak and although I am definitely not an expert, I think all of us who have been through mesh hell would prefer the leaks to what we have had through mesh. Pads are better than ever. However, it seems that there are non surgical options worth considering and I would definitely recommend pelvic physio – no-one suggested that to me but I had it later with some benefit. Have a look at this http://www.nhs.uk/Conditions/Incontinence-urinary/Pages/Treatment.aspx

    Sorry not to be more help – people that write on this site are just sufferers, not experts. Do carry on researching and you might want to look at Sling the Mesh.

    All good wishes in your search. Always look up ‘risks of…’ if you are trying something with permanent results. Liz

    Posted by LizRH | March 3, 2017, 7:53 pm
  333. Many thanks. Physio through a women’s unit has certainly helped. I couldn’t really believe what my consultant was telling me with regard to TOT and my options – and am very glad she was honest. I’m just shocked that there isn’t a better answer for such a widespread problem, and that this is even considered an answer! I’m very sorry that many have been less informed, and are suffering. Thanks

    Posted by Emily | March 3, 2017, 7:59 pm
  334. Hi Liz, thanks for your post, and info re Natalia Price. I went to my GP, she was fabulous, spent at least 20 minutes with me, and she has taken details of Natalia Price for a referral. We’ll see how long it takes. Anyway in the meantime she has recommended some medication for deadening the nerve pain called Gabapentin, so far it seems to be successful in that the nerve pain is definitely less. Only time will tell.
    Thank you again
    Susan

    Posted by Susan | March 5, 2017, 5:17 pm
  335. It makes such a difference when your GP supports and helps through this. There is a great deal of valuable information on this site – even though it is not fully updated, the details remain the same so you can always refer GPs who want to know more. Very best of luck with this. Hope that you get on well with the Gabapentin. all good wishes,Liz

    Posted by LizRH | March 5, 2017, 6:04 pm
  336. Hi Susan,are you going to see Natalia as a private patient—-£200 wel spent you will find—I did and only had to wait a few days,not sure how long a wait you will have on the NH as she is much in demand.I have been onGabapentin for 3 years now and am taking the maximum dose —-1200mgs 3 tmes a day—-for pain when sitting which is classed as vaginal nerve pain.I no longer get any side effects but nor do I find them a great help .Its ,sadly.Hope Natalia can advise you soon Its not a lot of fun,is it ?
    Hugs to you Carole

    Posted by carole jarman | March 6, 2017, 5:53 pm
  337. Hi,I had the T.V.T fitted around 14 years ago,it has been brilliant up till about a year ago when i noticed i get up through the night and not able to hold in,the past month or so it is happening through the day now,i have been doing my pelvic floor exercises for months now… i’am a busy nurse in a hospital and can’t afford this to be happening…i also get cramps very low down?? any body with the same problem? any help?
    Elaine

    Posted by Elaine Sutton | March 11, 2017, 10:48 am
  338. Oh my gosh! I’m experiencing exactly the same thing!!!!

    Posted by Rebecca Waldeier | March 11, 2017, 1:59 pm
  339. Elaine, I’m having exactly the same problem as you!! It’s been getting worse day by day! I didn’t know it takes a special doctor to remove it because it may be eroded! I’ve had mine in since 2004. So it might be. Rebecca Waldeier. If any words of wisdom; let me know!!

    Posted by Rebecca Waldeier | March 11, 2017, 3:31 pm
  340. Hi Elaine and Rebecca,I to had a lot of incontinence problems prior t o having my tvt tape sorted,but my problem was theother way and I couldn’t p u properly,the tape had occluded my bladder!!I had the tape “cut”by a urologist—a-t that time I hadn’t done any research on the mesh_and had a load more worries after that-so please do find a qualified surgeon to do your op if you venture down that line.So many girls on the site have had great success ,sadly I left it all too late and now have vagial nerve damage which causes me a lot of pain when sitting despite being on the maxmum dose of Gabapentin.I to was a nurse Elaine .My incontinence now is more urge than any thing and is manageable —ish—using Tena lady.
    Hope you both manage to find a way forward and If I can help in any way please ask
    Carole x

    Posted by carole jarman | March 11, 2017, 6:25 pm
  341. Elaine and Rebecca. You have good support with Carole’s comments. Good to see your support, Carole. Hope you are faring well. Do read a little higher up if you have time.

    This might be of interest to all recent readers
    I have been told by PALS, Icas and Seap that it is vital that patients come forward and lodge their adverse reactions. I hope that more people report their experiences, not necessarily as a complaint – but as a concern. In my endeavour to highlight various taboo subjects incl incontinence I have found that generally people are afraid of raising concerns – let alone of complaining. Many people just think they have to put up with what they have got – we now know we do not have to put up with it. I have spoken to many people who have had or know of others who have had implants, not all successful and the receipients do not realise that they should have been given the serial numbers of their implant device!

    Posted by Ingrid Hardacre | March 12, 2017, 12:40 pm
  342. I had a tvt about 2 or 3 years ago now i have a prolapsed bladder. I dont no if this has anything to do with the tvt but many of the symptoms started soon after i had it.

    Posted by Mrs Kerr | March 29, 2017, 7:50 pm
  343. Prolapsed bladder sounds miserable. Lots of women have unexplained issues following TVt, sometimes years later. There are specialists mentioned on these pages if you want to get an accurate diagnosis – do read up the page! Best wishes Liz

    Posted by LizRH | March 31, 2017, 7:09 am
  344. i am very worried i had the mesh put in 1 year ago and found out that one portion of it didnt heal. i have been told i need it removed. i went to my pre op appointment today and was told by the doctor that she didnt even need the vaginal tool to see the mesh just opened me with her fingers and seen it. im sorry im saying things the way i am but i dont know how else to explain. well i was told today that they need to check my bladder first to make sure there is no damaged and that i might have to have a cathiture for 2 weeks after surgery. i am so scared about this whole thing!!!! i also spoke with a lawyer and they said i dont have a claim. im so confused with all this. im only 42 yrs old and my life is a mess from all this!!

    Posted by aimee | April 12, 2017, 2:45 am
  345. Hello Aimee, This doesn’t sound good and sadly you are not the only one. You must now make sure that whoever removes the mesh can do so safely and has experience in doing so. Please be sure to read up this page and learn from different experiences… you are entitled to ask for another opinion and do not have to have the original surgeon removing the mesh. Find out how many he or she has already removed … I can understand you’re scared and it’s terrible for you to be dealing with this. You might also want to read up on sling the mesh campaign. Take care, Liz

    Posted by LizRH | April 12, 2017, 7:21 am
  346. Hi I believe this is the procedure I am having on the next week.My understanding is that my uterus has slipped and the sling will be inserted to aleviate the pressure on my Urethra.Is this correct . Should I panic?Thanks

    Posted by LInda | April 27, 2017, 12:03 am
  347. hi Linda, It’s great that you are doing your research before having a mesh procedure. Have you read up the page? have you read other pages on this site? Have you seen the news last week, the Sling the Mesh site, and the Victoria Derbyshire show on 18th April (still on iPlayer)? Whilst you will of course find women who are delighted with their mesh procedure, you will find many who have been crippled and lost so much of their previous normal life through the pain and disability. Mesh can stay quietly in the body for years and then reveal itself by eroding through organs that cannot be fully repaired. It’s a Russian roulette. I am not a ‘cranky’ person with a distorted view of mesh (which is how some consultants like to portray any of us using the internet to share our stories). No – I am a professional, masters educated self employed woman in education. I research as part of my work and wish that I had researched this mesh before having it inserted. All my research has been since I had a TVT in, and then removed. You have done better than me – and many other women – by researching before it’s too late. Please use your foresight with wisdom and insist on non mesh surgery. If your consultant cannot do it, or insists that mesh is safe, ask for another consultant. If you need to, go back to your GP and explain the situation and ask for a suitable referral..

    Posted by LizRH | April 27, 2017, 6:40 am
  348. Here here Liz,I to wish I had done my research before starting out on the trail of the many gynea operations I have had in the last 20 or so years ,hind sight is certainly a wonderful thing !!! I have gone through years of pain and incapacity after what started as a means of “curing”some stress incontinence,which remains to this day!!!I do hope LInda that you make lots of enquiries before you go for your surgeryand if its too late for that then I wish you lots of luck
    Best wishes all
    Love CaroleXX

    Posted by carole jarman | May 4, 2017, 3:08 pm
  349. I am so grateful for finding your site. I got off my horse Friday and about 2 hours later started to feel groin pain. Thought I had pulled a muscle but having spent all yesterday in bed and with awful pain standing up straight am today realising the pain is located on the left where I remember seeing that little stitch stubble some 10yrs ago having had VTT. The procedure has been wonderful apart from orgasms are as dull as switching a light switch which was immediately evident following the procedure. However I think I know where this is heading. It’s basically a time bomb. Thank you for your advise. It’s a shame people aren’t finding this site pre op. If you are thinking of having the procedure think twice.

    Posted by Karen Edwards | May 7, 2017, 8:23 am
  350. hi Karen, I’m so glad that you have found information that you need from here. I agree entirely – TVTs are a time bomb and what’s worse is that few consultants admit that the issues we are dealing with are caused by the mesh. Hopefully you have been able to read from previous posts and can make a judgement as to what to do next. There are certainly some expert removal consultants but stick to them if that is what you want to do – don’t try an ‘unknown’ name. The main consultants are mentioned again and again on this thread.

    I feel for you regarding your horse. I have recently been fortunate enough to have two Donkey Sanctuary donkeys and I’m now training them to be ridden (I used to ride ponies a lot – I’m smal!). I am really happy I can do this – was worried that I might have some pain but so far, so good. My TVT was removed in 2011 but I did have – and occasionally still have – some nerve pains due to the damage done by incorrect and blind insertion.

    Good luck as you work out your next steps, if any. At least it sounds as though you have worked out the locus and reason for your pains yesterday.

    Liz

    Posted by LizRH | May 7, 2017, 9:43 am
  351. I have just stumbled across this site after reading about the problems of women in the US who had this procedure and that Johnson and Johnson the manufacturers are being sued. I had a TVT procedure done in Oxford just over ten years ago at the age of 53 to’ cure’ stress incontinence. I do not remember being told that there might be any problems with the tape itself (only the general warnings that you get about having an operation and the fact that it might not work). Within three months of having the tape inserted I began to experience excruciating pain with intercourse. This has been so bad that I even stopped having cervical smears as the pain of the examination was too much and often resulted in bleeding. After suffering for many months I went back to the hospital where I was seen by a (male) gynaecologist who suggested that since everything looked normal my symptoms where psychological and that i should have psycho-sexual counselling! I knew he was wrong and did not take up this offer! I eventually was referred to Jane Moore a colleague of Natalia Price who specialised in treating this sort of pain. She was the first person to believe me – and recommended that I try physio and local pain relief. Now sex is only possible with the use of instillagel which numbs everything…Three years ago despite never having suffered with cystitis before (I know I was lucky!) I started to get regular attacks and last October for about three months I experienced severe pain all the time. I have had another urodynamics test and a camera in the bladder but nothing has been found. I now think that the tape is the cause but I am scared to have it removed as I know my incontinence symptoms are likely to return and I don’t fancy another general anaesthetic. I know that compared to many of the people posting here I am one of the lucky ones and if I had been told about these risks before the op I might still have gone ahead,but I still feel let down and scared now.

    Posted by RM | May 8, 2017, 3:08 pm
  352. Hi
    I had the tape in 2011
    I suffer with a small lower abdomen pain that’s constant but bearable. My reoccurring uti’s have stopped after the last surgeon I saw prescribed a vaginal oestrogen
    However, sex is definitely out. It is so painful and I no longer can experience orgasm. It destroyed my last relationship as my partner didn’t understand.
    That finished two years ago but we hadn’t had a sexual relationship after the first year of having the tape inserted.
    I don’t want to have another relationship for fear of the sexual side now as it’s painful and hard to explain

    Posted by jeanette lloyd | May 9, 2017, 9:33 am
  353. Hello RM, I wonder who your male gynae was in Oxford. I’m shocked and saddened at your treatment but not surprised. I’m just glad you found Jane Moore – I have seen her too and both she and Natalia are wonderful, the real medics who try and assist women in whatever way possible. It’s understandable that you are scared to have the tape removed and the decision can only be yours. Some find that the incontinence is improved after removal due to changes in body tissues through aging or even through the scar tissue formed.

    It’s absolutely tragic to read of the devastating effect on sex life for you and Jeanette – why or why do these tapes continue to be used when there is so much awful evidence out there of ruined lives and relationships. Yet they are still being inserted and the risks are not being explained. I just don’t understand the motivation to do this – and doctors take an oath to do no harm.

    Posted by LizRH | May 9, 2017, 9:39 am
  354. Hi all (Liz RH, Ingrid & Carole, So sorry I’ve not been on here for a while, an I can see there’s a lot to catch up on! So I will try an give you some sort of update! Well I have been signed off by my previous consultant after trying numerous ways to try to help my urine flow, intermittent flow and bladder emptying, and after another bout of urodynamics, bladder scans ultrasounds and camera tests and 9 months of constant antibiotics she did agree I had a slight flow problem! I was informed that she was happy to take a piece of tape out to try to help flow but couldn’t say what outcome I would be left with. She hasn’t performed many of these so it would be done with the assistance of another consultant. This was after she told me I had or there were two choices……either do nothing or go for the removal of a wedge of tape! At this point I then asked if I could go on the NHS list to see Natalia because if I chose this route I wanted the best person to do it as I seem to be someone where things never go smoothly whatever I have done! And she was happy to go along with that.
    After seeing Natalia privately last August she was happy with the insertion of tape and said there were no signs of any erosion or anything else and that my consultant had done a good job, but also agreed the tape seemed a little tight so removing a piece may help and she’d be happy to do it if necessary, I have recently been to Oxford to see her on the NHS, She re examined me and says everything is good but the walls of my vagina are thin and now wants me to use the eostrogen cream everyday and take another low dose of antibiotics everyday for another six months. She also feels if I chose the operation an the stress incontinance was worse (it wasn’t that bad to start with) that having to wear pads may cause more UTI’s. (I can’t wear them comfortably anyway) I feel that I’m just not going to get anywhere with this and was very politely told that I can’t put the blame for the problems I’m getting on the TVT! She will phone me in six months to see how things are instead of travelling to Oxford (to be honest I’d rather make the journey as I’m not good discussing things over the phone!) she asked what I would expect and I said I would love to be able to pee all in one go without stopping and starting which takes over five minutes and difficult to do if I’m in out anywhere or in a public loo! to make sure I’ve emptied fully and also to stop the constant irritated feeling and awareness of my bladder which always feels like I have a UTI coming, Natalias answere to that was to try and find some sort “coping strategy” after nearly five years I think I’ve run out of ideas!
    It has not been a good year this year from Christmas and what with a few other issues I can’t seem to get resolved at the moment my spirits are low and I don’t know where to go from here, I’m sorry for the negativity but I’m feeling so disheartened but know I’m luckier than a lot of other ladies on here who are suffering so much more!
    Natalia is a lovely lady, I am just disappointed with this latest outcome after I’ve spent months debating on what I should do!
    Sorry for the long “essay”. Hope you can understand it all!
    Regards to everyone.

    Posted by Ann Chadney | May 10, 2017, 6:02 pm
  355. Hi Ann, Thanks so much for updating us so bravely. What a sad and frustrating situation for you, particularly since you have not been sure what to do. I’m wondering whether your discussion with Natalia included the option of tape removal but the suggestion that wearing pads might cause more UTIs made it seem less suitable? Frankly, I don’t see why wearing pads would cause UTIs – urine itself does not infect the body.
    I totally understand why you feel down and am wondering also whether the pressure on removal specialists like Natalia means that they are only removing those tapes causing damage. Did you get that impression? What terrible times – these TVTs are a time bomb of disasters and I know that many women are rightly coming forward for help but the support services are not available.

    I hope that some of the other girls reading this are able to add their ideas and perhaps support.

    Warmly, Liz x

    Posted by LizRH | May 11, 2017, 2:31 pm
  356. Hello again Anne you have had a bad time of it recentlyLike Liz I cant see why w earing pads would cause a uti,I have been using them for about 6 years with no problem—why do you find them uncomfortable to wear I wonder?—I used to suffer the same symptoms as you ,with not emptying my bladder fully,having to “push” and always feeling full.Not nice at all ,it takes over your life doesn’t it?I had my tvt cut about 10 years ago which did relieve those symtoms but,sadly over the years more problems have reared their head,I now have vaginal nerve damage which makes it painful to sit for long despite taking a high dose of Gabapentin.I also use a tens machine in the evenings and as Jeannette mentioned earlier a sex life has been none existant for many years now ,sadly.I hope you can find another consultant to help you but do be careful who you choose
    Keep us updated please
    Love Carole

    Posted by carole jarman | May 17, 2017, 4:19 pm
  357. Had tvt and cystocele and rectocele surgery in Nov last year. Had problems day one after surgery. Now eight months on erosion of tvt tape was found and further investigation under anesthetic they could on cut a tiny bit of the tape that was protruding. I can still feel a sharp piece and been on Vagfem to see if it will encourage tissue growth. I’m really upset by all this as the surgeon who did the procedure was a temp. I’m really down as after reading some of the comments I’m wondering if I’m ever going to be sorted. Also what sort of effect its going to have on the rest of my life. Don’t know where to turn , was told by sister at hospital this morning to keep going with Vagfem but it hasn’t helped so far. UK hospital

    Posted by hayzel | July 5, 2017, 2:32 pm
  358. hello Hayzel, This sounds as though you have had a lot done – it must have been a slow recovery from all that surgery. With erosion of the tape it’s important to get further investigation, not just have it snipped where it protrudes. I don’t believe that Vagifem is the answer – like putting a sticking plaster on a thorn that is deep below the skin’s surface, so there is a reason to explore the cause of the erosion. Please read up this page to find out about the UK specialists that we know of, one in Oxford (Natalia Price) and one in London (Sohier Elneil). There are apparently others who can diagnose and assist with mesh problems but we don’t believe there are any with the same experience.

    I hope you can move forward with this,

    Hugs, Liz

    Posted by LizRH | July 6, 2017, 9:01 pm
  359. Hi Hayzel.Am so sorry to hear of yet another mesh sufferer,will it never end?I have posted lots of messages if you look further back and will see I have been suffering for 16 years now!!Do be very careful who you contact next for help I saw Natalia Price In Oxford who is a lovely lady ,she removed a part of my tvt mesh that had wrapped around the bladder.Sadly I now have vaginal nerve damage so suffer pain when I sit —-very joyful!!–for which I take a high dose of Gabapentin ,this hardly takes the edge off and I also use Estriol vaginal cream as prescribed by Natalia.You could ask your GP about this as it is meant to strengthen the vaginal wall
    Good luck and please feel free to ask girls on this site any more questions you have,it is really helpful to know there are others out there
    Hugs —-Carole
    Heool Liz and you to Ingrid if you are reading this !!

    Posted by carole jarman | July 7, 2017, 2:25 pm
  360. Hello Hayzel. I join the others to say I am sorry to hear that you are also suffering from mesh insertion problems. Take plenty of time and go over this page on this site. It is full of really good information. I rate this site very highly, as it is a “static site” not too much flickering and other distractions on it. Liz and Carole good to read that you are still caring and sharing on this site. I am struggling at the moment hopefully not mesh related. Hayzel take heart, inform yourself. My thoughts are with you. Stay brave. xxx

    Posted by Ingrid Hardacre | July 7, 2017, 2:42 pm
  361. Hi everyone – since my last post in May I have had a follow up appointment at which we discussed tape removal. However, removing it is not guaranteed to solve the pain issues and since my incontinence is almost certainly likely to return my husband and I have decided to carry on as we are for the moment managing the pain with Instillagel and a sense of humour! Luckily, I am not affected as some of you are day to day and since the three month period at the end of last year when I had constant pain when passing water I have not had any more infections. We decided that we would leave things be for the moment. I have asked for details of the type of tape and the exact dates of my op (tens years ago so I can’t remember) from the hospital so I can file a report to the MHRA. I am awaiting an email from Miss Price’s secretary. My heart goes out to those of you more severely affected than me.

    Posted by RM | July 9, 2017, 7:00 pm
  362. Thanks so much for following up on here. It’s a difficult decision to know what to do with mesh because of the risks of either removal or ‘remain’. I really hope that you continue to avoid infections and can report to the MHRA – good to know you’re doing that.
    Take care, Liz

    Posted by LizRH | July 11, 2017, 7:43 am

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