TVT-O & TVT Bladder Sling Complications

In two weeks time I will be on my way to UCLA and bladder sling removal by Dr Raz.  My days are constantly reading or listening to other women who have been listening to doctors tell them that their sling is not the problem for their declining health.  These women are kept isolated except for one thing.  The Internet.  Regardless of what we have been told, some of us refuse to believe it, when we know our own bodies.  We know how we were before our surgery.  We now say, enough is enough.  It is time to recognize we are suffering and if the mesh manufacturers and our doctors are refusing to believe us, we MUST take action ourselves.  We MUST say we know what is the truth.

Why are we never told about the amount of complications arising from bladder sling surgery?  I truly wish I could answer that question.  I do know any automobile product has to go through vigorous testing and yet these slings are put into us without any testing.  Why?  Only the authorities who oversee our products can answer.  BUT!  Even without knowing any of the answers, YOU can do something to change this.  It is this simple.  REPORT YOUR COMPLICATIONS TO THE FDA!  You may be one of the hundreds of women who have written or said to me “I can’t prove it is the mesh”.  “Doctors are telling me it isn’t the mesh”.  My answer is this.  You know your own body.  You know what it was like before the sling was implanted inside of it.  You know what has changed.  Stop trying to prove it and take action.

I knew my own body when this happened to me.  I spent the first six month trying to prove it to my doctor without any good result.  She did not believe this could happen to me because mine is a TVT sling and not a TVT-O sling.  I researched out of the country I live in by adding U.K on the end of my key research words.  Then I found it had happened to other women.  One such article was written by doctors in English, who were practicing in Berlin.  I copied the article and begged my doctor to believe me and help me.  It did not get me anywhere.  So I did two things.  I first reported it to the FDA after I got my hospital notes and I added it to this blog.  I wanted all women to understand that we have to stop being down beaten by any doctors authority.  We have to stand up for ourselves and say enough is enough.

You can remain anonymous.  You can remain quiet and still make your voice heard.  Please, please report your complications to the FDA It is your VOTE to stop this from happening to others.  Please, please take this seriously. I have written blogs on where to find the information you need to report your complications (like, Mesh & Our Fundamental Right, Report to the FDA and more).  You can’t do it unless you know the manufacturer’s name and implant number.  You can’t sit back and allow this to keep happening to so many, good women.  You know the truth.  Start helping by doing one thing.  Report your complications to the FDA either on line or by telephone.  That simple thing can save someone else from YOUR agony.

Although there seems to be hundreds of complications due to a synthetic product implanted in our bodies, this blog is about leg pain.  I can attest to how it can change your life in the worse way.  With mesh erosion women go through hell to get someone to recognize their complication before they go through hell.  In the end, no doctor with a brain can ignore it when it is protruding from your body and yet I know for a fact that they still do.  All I can say to any woman who has gone through this, is RUN as far away from such doctors as possible.  Keep working until you find one who will listen.

With leg pain from theses surgeries it is much harder to prove to any doctor.  For some women the agony is loud and clear, the second they wake up from surgery and yet they too are told “It is not the sling”.  For others the journey is long and difficult without any belief at all.  Mine was slow.  I was already suffering from so many other complications that although I knew about the pinging sensation in my groin, it was the least of my worries.  I thought it had to be due to the constant use of nine weeks of a catheter.  I was suffering from so many infections and I just wanted the sling OUT OF ME.  That did not happen of course, because once it is in your body, it is designed to attach itself to our tissues.  It is major surgery to remove it by one of a handful of doctors who can do it safely and remove it all.  My own doctor has no experience in mesh removal and yet she continues to put them in women, knowing about complications.  I finally took action myself when I had no more money.  No way to go from doctor to doctor.  I found marshmallow root and got rid of all infection.  The blog about this product is here.   That was my first step.  Then and only then did the groin pain became more noticeable and miserable.  I began limping.

At first like many I thought it was lack of exercise from months of complications.  So I was determined to get back into shape, only I knew I had to do it carefully.  I asked my daughter to order me a sitting exercise bike.  When it came in, she put it together.  Then I sat on it and did what most people would think was very normal and easy.  I made a slow round on the pedals.  What I was met with was excruciating pain down my right leg.  I had never felt it that extreme before so I stopped and waited a few days.  Then I tried again.  I knew then there was something more serious going on.  My daughter took the bike back and I tried to get my doctor to listen to me once again.  She would not.

Weeks went by.  My leg pain and my walking became very labored.  Sleeping was hard because I could not lay on my right side at all because the pain was worse.  I was up and down all night.  I knew something was going on but when you don’t have any money left, you keep researching and you suffer.

Six months after the sling was put into my body, something happened to make me take more notice than ever.  I got up from my chair and my leg gave out under me with a sharp pain.  I went down.  I did what was normal.  I reached out to catch myself and I landed on my left wrist hard.  I was in agony.  I wound up in the Emergency Room and was told I had  two cracked bones in my write.  More money for a cast.  Money I did not have.  Then came the walking stick and for bad days a walker to make sure I was steady.  All I could think of was what the hell was happening to me.  I was too young to become a cripple from a bladder sling.  My days and night were dark and lonely.  But I never once gave up.  I asked my daughter to do something simple.  I asked her to make a video of what this product had done to me.  She did.
This is the video:

I knew I could not be alone with these complications so I kept writing and saying what is wrong with me.  Then came the women to this blog.  They sent me private emails, too afraid to say what was happening in comments.  They had been told to stay quiet.  Many did, but many have not.  I’ve spoken to so many on the phone who told me, “Your hell is my hell”.

If you believe you have complications from mesh, do something.  Take action to help yourself.  Stop trying to prove to your doctor what you know is the truth.  You deserve better.  Make that appointment at UCLA.  You will be so happy to hear the words “It is the mesh”, when you go there.  Those doctors know the truth.  I wish you luck.

I constantly research to give you more to read that what I or any other woman will tell you.  When I put into Google seeking any information I am met with a wall of lawyers info and I keep digging past all that.  This article was written by Dr. Twiss and Dr. Raz.  I knew Dr. Twiss was trained by Dr. Raz, but no one I know has gone to him for mesh removal.  Now I know one woman who has had her first consult with him.  She was armed with all the questions to ask from this blog.  She will have mesh removal by Dr. Twiss in November and I hope to give you her story of hope.  I did not write the questions she asked.  They are here on this blog for you to take and ask any doctor who says they can remove the mesh.  The questions were written by a woman who had TVT-O mesh removal by Dr. Raz and she is doing well.  Not cured, but so much better.  No one can cure us.  We will always be damaged by the results of this surgery.  At least we can look forward to a better life by going to a doctor who understand how to remove the mesh completely. Arms/anchors and all.  Not snip off a bit of mesh and then tell us we are now okay.  While it remains we will NEVER be okay.

This is where you can read the article for yourself and the following I took about TVT-O and TVT complications.  http://www.laborie.com/articles/complications-of-synthetic-mid-urethral-slings  You can read about other complications here, but if you are one of the thousands of women who have not reported your case to the FDA, no one knows about you.  You should also know that this article was written in 2008.  Since then there has been an explosion of women who are suffering.  Hence the FDA warning last July 2011.  Not a recall as many women have believed before they contacted me.  A warning.  That is not enough.  Stand up and be counted.  I took this paragraph from the article to help you understand more about leg/thigh pain.

Groin and thigh complications

Groin and thigh complications are significantly more prevalent with transobturator slings than retropubic slings and can be lifethreatening in some cases. A meta-analysis 17 of randomized controlled trials comparing retropubic with transobturator slings found that the odds ratio of groin/thigh pain was 8.3 for transobturator as compared to retropubic slings, and the large French registry of TVT-O procedures 20 reported a 2.7% rate of residual pain lasting greater than 4 weeks duration. In our experience and in that recently published by others, 36 the groin and thigh pain encountered after transobturator sling placement can in some cases be unrelenting and require sling removal, a challenging task. Such pain can result from the passage of the sling through the adductor brevis, adductor magnus, and gracilis muscles (with subsequent myositis); infection and/or abscess; hematoma; or, rarely, obturator nerve entrapment. 12,37 More significant is that serious infectious complications resulting from transobturator slings have been reported,38 including groin and thigh abscesses, sepsis, and gangrene.

Managing groin and thigh complications raises the important issue of “invasiveness” with regard to transobturator slings. While transobturator sling procedures are often marketed as “less invasive” due to avoidance of the retropubic space, one must be cognizant that transobturator slings are placed into an anatomic region that is very difficult to access after the sling is placed. Removal of retropubic slings remains relatively straightforward, especially because urologists and gynecologists are familiar with the anatomy of the retropubic space and urethra. Conversely, removal of a transobturator sling remains challenging because it occupies a deeptissue space that is difficult to access, and the anatomy of this region is far less familiar to pelvic surgeons. Thus, both retropubic and transobturator sling procedures are “invasive,” and each sling carries its own set of problems associated with the anatomic region that it occupies.

You should also understand that those of us with these complications have more than leg/thigh pain.  It is in our hip, back and all down the leg.  We also have pelvic pain and vaginal burning.  There is so much more to mesh complications, but the world has to know.  That is why I write this blog.  I want to inform and allow women to make choices in their surgeries with INFORMED information and choices.  I cannot do this alone.  You can help.

Update.  For new information click here.  http://meshangelnetwork.com/2014/04/mesh-will-i-get-complications-in-the-future/

72 Comments

  1. Peggy McAllister

    Thanks for blogging this, I know now Im not crazy . I had a transvaginal transobterator sling done with my hysterectomy in 09 and have had problems ever since. I’ve been to 8 different drs. they all told me sling is fine and my groin and leg pain was due to the position I was in during surgery. PT helped and herbals. still have minimal pain sometimes flares up and I have to take diazepam suppository . MY main problem now is recurrent UTI’s I’ve had 12 in 15 months and now have bad Yeast infection the whole month of september. my dr says I have IC but he is only diagnosing me by my symptoms. I had blood in the urine as well this last time. I think it is all due to the sling, I have not been right since they put it in. I can’t do all the things I used to , I have to be careful not to flare up my pain. I am very anxious to hear how you make out and if you feel it was worth traveling to UCLA for the removal. I am considering making the trip myself. I live in NJ and researched miklos and moore as well. I just don’t understand why they feel it is not the mesh product itself that is the problem. Hang in there and god bless, good luck on your surgery

    Reply
    1. lavalinda (Post author)

      Please read the blog I wrote this morning September 27th 2012 titled A light in a night with mesh. It is about an amazing woman and her journey back from hell all because she chose to go to UCLA. She will be your inspiration as she has been mine. It is really hard to make that decision I know, but I am at peace because I know it is the right journey for me. You must choose for yourself.

      Reply
  2. JULIE CORDEROY

    Hi,I am 3 1/2 months post vaginal hyst with TVT-O placed at time of operation have thigh pain and aching to sometimes painful pubis area,and what I call saddle soreness between my legs.sometime sore to walk.I was told it was roundligamentpain from surgery.I’m sick of drs as at same time was found I was type 2diabetic the last few days my temp has been reading low and between 33-25

    Reply
    1. lavalinda (Post author)

      You do not say where you are located, but you need a doctor who can find out what is wrong. You won’t be the first to be diagnosed as a diabetic after sling placement. Please read the post ‘Mesh & Internal Clodidium Infection’ dated July 23rd 2012. I wrote there what a medical friend told me about her friend. It is a must read for you. I suggest you make an appointment at UCLA. Before you get sicker. They can do a translabial ultrasound and tell you what is wrong. There are also two women who are excellent surgeons and you can get in faster than Dr. Raz. Read about them on So Much Hope for mesh Removal Surgery, August 28th 2012. Please find out what is wrong soon. Leaving it too long could be dangerous.

      Reply
      1. JULIE CORDEROY

        Hi,thanks for that..I’m in Australia and I have only found this American site..I’m pleased to know I’m not crazy and will be telling my Dr I want this checked.the last few nights have been hell,Im aching head to toe and have tingling sensations on my vagina

        Reply
  3. cheryl rios

    I am interested for my mom, she had the surgery in 2008,in late 2009 had lyphomia attached to stomach, and has had countless bladder infections and now they don’t stop at all.
    I am going to get her records with her today but don’t know what to do next, can you help?
    Email me cmrcars@mac.com

    Reply
    1. lavalinda (Post author)

      I am so sorry this has happened to your mom. If you read this blog it will tell you what to do next and there is a link for UTI’s and something you can get her to clear it until she has surgry. I know that to get the money to go out to UCLA is huge, so ask for help, do a fund raiser. Do whatever it takes to get her there. You are a lovely daughter. http://teapapers.com/bladdersling/2012/09/mesh-kidney-stones-serious-infections

      Reply
  4. amy

    I’ve been trying to research to see if a new problem I am having could possibly be caused by my urethral sling surgery. I had the surgery in 2011. Within the past month I have been having increasing pain in my right hip that shoots down my right leg. None of the doctors I’ve seen can seem to find a cause for the pain and it is starting to be such crippling pain that I can’t function normally. Does anyone have any suggestions?

    Reply
    1. lavalinda (Post author)

      It is the sling. This happened to me and hundreds of other women. No doctor will tell you it is the mesh EXCEPT the doctors at UCLA. Get your records and make an appointment to go out there, no matter what you have to do. Read this blog.
      http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery

      Reply
  5. JULIE CORDEROY

    Hi,Its now been 8 months since my vaginal hyst and tvt-o placement.After translabial ultra sound and pelvic bone scan..all came back normal,Dr has agreed my pain is from tvt-o ,now I’m waiting for a nerve block and if that doesn’t work I’m having tvt-o taken out…wish I was in USA for the drs that are mentioned here.since operation I’ve been so down,now I’m going to be treated for depression and anxiety.its been hell trying to work and keep my job..

    Reply
  6. lavalinda (Post author)

    Julie, they do nerve blocks all the time, which is temporary and does not help. The issue is the mesh is caught up in the nerve and nothing including partial removals help. I’ve been there. A nerve block only lasted two hours on me. You are like thousands of other women who are depressed because of these surgeries. That is why I fight to let women know what is happening.

    Reply
  7. lavalinda (Post author)

    Julie, this explains why this happens. I found it in a medical paper. It is the needle tool and the blind tecnique they use.
    “To explain the mechanism of nerve injury, we performed cadaveric dissections on a formalin-embalmed female body. We were able to demonstrate the contact of the needle with the pudendal nerve after aberrant passage of the inserter.”

    Reply
  8. lori

    I just came across this site. I had a sling in March of 12. Since the day I got out of the hospital I have had pain. Walking for long periods or doing what I always use to do like yard work I hurt. I was just thinking it was weak muscles from not being able to do much for the months after surgy. Now I am scare. I know my dr will say how can your legs hurt. I hear him saying it. Today I laid mulch and the pain in the upper inner thigh feels almost like a charle horse.

    Reply
    1. lavalinda (Post author)

      Lori both TVT and TVT-O can do this. In time it will worsen but don’t let it get that far. Your doctor will dismiss this, but you know there is a problem. Mine began slowly and then suddenly increased and became intense. No one believed me. The doctors of UCLA can remove it without damaging you further. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey/

      Reply
  9. susan

    Been reading this site…OMG I have had all these problems since I had TVT fitted 2 years ago pain in groin,leg ,foot and lower back…also burning.
    I am not going mad thank god…

    Reply
    1. lavalinda (Post author)

      Susan, no you are not crazy, you are mesh injured. You have all many of the signs and I hope you can get some help. I see you are in the UK. There are women in that country who will help you. I will try to connect you.

      Reply
  10. susan

    Thanks Lavalinda I will contact GP….I knew as a nurse myself and a pain managment nurse that this was nerve pain as my thigh tingles and has an itch…but my foot is the worst…I am finding it difficult to carry out my nursing duties.n

    Reply
    1. lavalinda (Post author)

      I kno2w MANY nurses that no longer practice. It is sad that this has happened to so many women who have good careers. I will now sent you the UK contact.

      Reply
  11. Donna

    I had the Gynecare Prolift in 2006 and than the TVT in 2007 to correct the failure of the Prolift. My doctor told me my pain was due to menopause. Both mesh products only caused me more problems. My doctor ignored my complaints and made me feel like I was crazy. I went for a second and third opinion. In 2010 I had surgery to remove the mesh. The mesh was embedded and the doctor said he could only remove a very small portion of the two meshes inside of me. I was very sick and hospitalized with sepsis after the removal procedure.

    Chronic UTIs have been occurring since the mesh surgery. I have chronic pain , contractions, and spasms that feel like child birth. Most days I cannot bend or squat with out feeling pain in my pelvic area and back. Physical therapy and a pain block only gave me more pain. I lost a great job and my independence due to my pain. I was recently approved for Social Security Disability. My life plan of working until retirement is no longer a reality. I love to garden and that has also been taken away from me. Marital problems due to extreme pain during intercourse.
    Depression and anxiety is now a constant. I have little bladder control and a difficult time with bowel movements. I lost 12 inches of my colon in 2009. Now I wonder if the mesh was part of my colon problems? I am discourage and feel much older than 55.

    Reply
    1. lavalinda (Post author)

      Donna, the sadness I feel for you is overwhelming and the anger that this has happened to so many women, extreme. Yes, yes, yes, it is because of mesh. I am out at UCLA and I am sharing a room with a woman who will have surgery tomorrow by Dr. Raz. Before she found this blog, a doctor told her he would remove part of her colon. Dr. Raz told her it was unnecessary. They do it because they do not admit it is the mesh, and they don’t know how to remove it, so they make women worse. It is disgusting. I know that you life is a mess, but maybe there will be away for you to get out to UCLA some day. I wish I could hug you. XX

      Reply
  12. Sonia

    Wow, after reading these comments I feel vindicated!! I had a hysterectomy with gynecare tvt in Dec 2009 and I’ve had a variety of problems. I’m 49 and I’m walking hunched over from back and hip issues, I’ve had severe pain and burning in my right thigh, constantly stiff and often feel lethargic! I have no insurance and am out of work but trying to secure a job but knowing physically I can’t handle it. I’ve had bouts of depression because I wasn’t sure what all this was about? I just thought I was going crazy.. I’ve had so many issues with legs and my back I don’t where to turn! I live in California and had my surgery here as we’ll. any feedback would be appreciated.

    Reply
    1. lavalinda (Post author)

      Because you live in California you may be able to get the State to pay for removal. It is worth a try. These are the doctors. http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/

      Reply
  13. Melissa

    My surgeries were in 2002. My gynecare TVT sling has been recognized as a recalled product. I didn’t need to be told that however to know that it was not right from the beginning. I have been on preventative antibiotics for 11 years now because even two days without them & I get infection. The quantity of problems I have had are too many to mention. However my most recent issue is tendon rupture in both of my calves, two months apart. This is a complication I hadn’t attributed to the mesh until reading your blogs & all the related stories. Do you think this is a complication or do you know if it has been recognized as a complication of the product?

    Reply
    1. lavalinda (Post author)

      Infections are a well known complication and you need to work on getting it out at UCLA before the infection becomes so bad, it can kill you slowly. Dr. Raz has removed many after all those years and when he does, he finds so much puss and oozing. Please do something now.

      Reply
  14. Melissa

    I definitely have experienced the infection issue for many years & agree it needs to come out to resolve that. But do you think the mesh & sling could be causing my tendon ruptures in my legs? I know it has caused hip & groin pain but the actual tendon ruptures are new. Is there any research on this?

    Reply
    1. lavalinda (Post author)

      Melissa have you been taking Cipro, or other of this family of drugs? My guess is yes and this is why the ruptures have happened. These drugs do terrible damage and they are the number one drug prescribed for infections of this nature. Please read this. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921747/

      Reply
      1. Melissa

        The antibiotic I have been on for 11 years is Keflex/Cephalexin. Do you know about it?

        Reply
    2. lavalinda (Post author)

      Melissa whenever you take a drug, don’t just read the paper they give you. Go home and put the name in Google and read EVERY side affect including those so called rare ones. They are rare because most are under reported. I know, because I lived in hell because of some prescription drugs. You should also be aware that these drugs are not meant for long term use, but when given, they are given out repeatedly to mesh women when these infections occur. Also make sure your urine is sent off for culture at a lab to see what kind of infection you are dealing with and if this drug will even work on it. Take tons of probiotics when you take any drug for infection. If not there are serious consequences because you will upset the balance. I have learned everything from experience.
      This is your drug. http://www.drugs.com/sfx/keflex-side-effects.html You should also be aware that most infections from mesh are deep inside the mesh and in time cause abscesses. When they remove the mesh from many women at UCLA, these women report back to me that the doctor told them puss oozed out of their bodies. Some women have to have IV antibiotics after surgery because their condition was so serious. Get the help you need before it goes this far.

      Reply
  15. Tiny York

    Please I need help. I have horrible left leg pain and swelling. Physical Therapy
    makes my leg hurt worse and swell. I had months of being crppled since surgery. Ofcoarse Doctors are blaming it on everything else. Old age,
    arthritis, ect. I have had knee and back problems but they never made me
    crippled. I know it started the day of surgery and is getting worse. I will freely
    admit to old age common problems (i’m 66. But nothing compares to the pain
    and problems I have experienced since the day of TVT bladder sling surgery.
    Hoqw do you get the doctors to admit, what you know. I know my body, I
    know when this all started. All my friends and family know when it started. I
    got no warning what so ever other than a common release stating that surgery
    could possibly lead to more surgery. Well, getting a hang nail trimmed could
    lead to more surgery. Hardly adequate warning…than girlfriend told me about
    adds she saw on TV. I’m sick, my whole life has changed, I’m in constant pain
    and the very Doctors I see for help are in the same orginazation of the one
    who operated on me. Like I will get an honest answer here. I pay highest
    insurance premimum they offer, I can’t afford my premimum and afford to go
    \to outside doctors. What can I do. TY

    Reply
    1. lavalinda (Post author)

      Tiny, it is not old age issues, I too am 66 and I was building my house until I had the sling in me and then all that stopped. Get a supplement policy through AARP and then go to UCLA. You will never get doctors to admit it is the problem. so stop working on it. Use you energy to get the help you need. Drop these doctors and start paying for a policy where you can choose where you go. Only you can make this decision and do what is best for you. While you fear what these doctors will think you will never get well. They do not control your life if you don’t allow it. You can afford to help yourself if you prioritize and decide you are worth it. We all had to do exactly that to get better.

      Reply
  16. Julie

    I had what I was told was a TVT fit, which caused all those horrible complications plus erosion. However, when I had the TVT removed the surgeon told me it was a TVT-O, but it was an I-Stop TVT on the box so the hospital who put it in tell me. I am so confused, what is the difference and how can I find out if the I-Stop Classic from CL Medical is a TVT or TVT-?

    Reply
  17. Betty

    oh my God I am so scared now….I am 46yrs old and due to have this operation tvt-o in three weeks. Now I am panicking.

    Reply
    1. lavalinda (Post author)

      Their are options without mesh but few doctors who can do it. TVT-O is notorious for crippling women. You can trust the doctors at UCLA.

      Reply
    2. Marissa

      I AM IN BUNBURY WEST AUSTRALIA. IT IS QUITE CLEAR TO ME THAT I AM NOT HAVING THIS PROCEDURE NOW.I was going to have this op in two days time: all booked,ready to go. Guess what? I am so glad I googled this, finally!..I can put up with what I have. My man doesn’t find it an issue. And lets face it…the surgery can only make life worse!!My surgeon assured me mine is a common problem…post babies SUI and he has performed this heaps of times over the past 9 years with no complications and something like 99% success rate. This is a prominent, successful, popular local surgeon. How many women does he regularly refer for this procedure? I didn’t even go in for the SUI particularly, but hey…he said he could help with that with this wonderful sling procedure. NO WAY AM I GOING AHEAD WITH THIS. Thankyou for this site. I only hope others find it prior to proceding. It wasn’t that easy to find. THANKYOU THANKYOU THANKYOU

      Reply
      1. lavalinda (Post author)

        Marissa all I can say is thank God you found this blog and made a decision to keep your life and your health. No one is counting and the lawyers are saying 30% serious complications, but I know from this blog that many women don’t know the mesh has caused their ill health because they keep being told it is something else. You made my day as every time a woman says she won’t do it, I feel it is one life saved.

        Reply
  18. laurie roe

    Hi I am a 52 year old healthy lady from ireland who had a mesh sling fitted september 2012. although it sorted my incontinence problem I have been left with lower back and right hip pain ever since. I have never suffered from back pain before except during labour on my first child which I had mainly in the back. Some days I cant even bend to put on my socks in the morning. I love gardening and have found this is a problem for me as I suffer the next day from the back pain. Also the pain gets worse ten days before my period and it feels like labour pains and I have to lie down with my electric blanket and take pain killers for the pain. I have spoken to my g.p. but she has just given me back exercises to do. Is this a common problem after this procedure? I would love to get some feed back as I feel my gp is not listening to me regards Laurie

    Reply
    1. lavalinda (Post author)

      Laurie it is very common to have this type of pain in leg, groin, back and hip. I do not know anyone in Great Britain who is good at removing the mesh, and I feel for you deeply. There are support groups via facebook and someone may help you on one of those.

      Reply
    2. Sandra

      Hi Laurie, just wondering do you do anything about removing your sling. I am in Ireland too and have had mine put in six weeks ago,and am in agony….

      Thanks, Sandra.

      Reply
  19. Julie

    Hi Laurie, I am from England and unfortunately very experienced in mesh complications. There are only two surgeons in England who are being highly recommended for mesh complications and removal, these are Sohier Elneil at UCLH in London and Natalia Price at John Ratcliffe Hospital in Oxford. Natalia removes TVT’s and Sohier, also known as Suzi, is very experienced in removing TVT’s and all other types of mesh plus much more. Suzi did my removal and she is the most wonderful surgeon and she went right back to the bone to remove all the mesh. Don’t be fobbed off by doctors who don’t have a clue, as most of them don’t. I don’t know of any surgeons in Ireland but visit TVT MUM and TVT INFO websites who will be able to advise you. Good luck.

    Reply
    1. lavalinda (Post author)

      Thank you Julie.

      Reply
    2. Adele

      Hi Julie,

      Thank you for your post which is a huge relief to me. Please could you tell me if you know whether Suzi Elneil is also experienced at removing TOTs, as I am looking for my GP to refer me to a consultant for a second opinion. I went into my operation in August 2013 believing I was having a TVT only to wake up having had a TOT and no counselling about side effects or to my knowledge having given consent to have the operation. I suffered excruciating leg and hip pain on both sides upon waking from the operation which lasted up to 6 weeks and every since I have experienced pain in my left hip and leg every time I move from sitting to standing and for weeks at a time as a constant background pain. I’ve been to a year of outpatient appointments post the op, and the consultant who undertook the op told me recently that the pain is likely to be due to the mesh having become too tight in the muscle which is causing it to bang against the obturator nerve causing it damage. He diagnosed me with long term chronic long term pain (his specialist interest), but I was advised not to have the tape removed as it was a difficult operation and may not be successful, advised I could have the tape cut but this was unlikely to reduce the tension of the tape and the pain would likely remain. I’d also surely become incontinent again. I left the consultation in shock with the only option of returning for a further appointment in 4 months time! Help!

      Reply
      1. lavalinda (Post author)

        Adele advising you not to have it removed is a lifetime of agony. Please do something to help yourself, go out to UCLA to Dr. Raz. Removing the anchors is very difficult and can be disastrous with the wrong doctor. The whole thing must be removed and then IF you need reconstruction surgery UCLA can do it without mesh. I understand how you feel, and I know travelling is hard, but you don’t have a choice.

        Reply
  20. donna harris

    Hello everyone ,
    I had my bladder mesh sling removed in 2011 , by Doctor Lorie Fleck Mobile Alabama she was a great, but lack of money Im not able to return to her .She was the only doctor who truly listened . But Im still having horrible leg and groin pains to the point sometimes my leg gives out on me . I too have run out of money and can’t get any doctor to believe me when I know Im not the same person I once was . What I’m trying to find out is will pain go away now that mesh has been removed and what can I do beside strong drugs to control it . I am single and I have to work .Is there any testing that can give some answers to all of this . I sleep on average 3 hours a night cant get comfortable enough to sleep .And of course all that’s offered is more drugs which I cant afford . Depression has taken over and of course they have a pill for that too! Every doctor I’ve encountered either thinks I’m there for drugs or prove my case for money . WHEN ALL I WANT IS MY LIFE BACK FREE FROM PAIN .Any info would be very much appreciated . FYI ….after removal Bladder infection improved ,gastric bloating maybe once a week compared to daily ., ringing in ear remains , leg pain are chronic , groin pain severe with curtain movements , sex doesn’t hurt but gastric bloat, lower back pain, bladder spasm comes on the next day and continues for at least 2 ~4 days. Depression and exhaustion is killing me ! I believe I’ve had/have an Auto immune response to the mesh material but of course proving this is impossible !!!!! I don’t understand why doctors refuse to help and believe. God bless everyone

    Reply
    1. lavalinda (Post author)

      Donna while the anchors are in you, you will never get better. Try this doctor. http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

      Reply
  21. Julie

    Hi Donna,

    It is very scary when your legs go from under you, I know as this is also happening to me. I’ve had a mesh removal and my surgeon has referred me to a neurologist as she is concerned about this and she wants me to also have an MRI of the spine. She doesn’t know yet what is causing this but is determined to help me and make me as whole again as she can. She also said there may be a part of the mesh which she didn’t get as it could have gone off somewhere that they could not detect it.

    Good luck and don’t give up.

    Reply
  22. Shelley

    I had the TVT sling for SUI back in 2007. For the last 2 years I have lived with pain. It took me 2 months to get into see the female Urologist who was finally able to tell me that the mesh from the sling was inside of my bladder. I had revision surgery 2 and 1/2 months ago to remove the entire sling. My doctor wanted to do a partial removal but I wanted the entire thing out. I had all of the symptoms, constant urinary tract infections (I was living on AZO), could not have sex because of the pain and on the few occasions we tried I had bleeding after, abdominal pain, hip pain, etc…I even went to my GP and said you have to test me for cancer my bones hurt and I am sure I have cancer. She said “let’s don’t use the C word. I drove myself to the emergency room one day only to get pumped up full of morphine, invoiced for an expensive CT scan and told they couldn’t find anything wrong with me. I had NO idea that all of these symptoms were related to that stupid sling!

    I had pain for a long time after the surgery when walking or standing for long periods of time. Abdominal pain and lower back pain. That seems to be healing and getting somewhat better. Here is my problem…I had intercourse with my husband for the first time the other night and it really hurt. I thought all of that was going to be over after the sling was removed. I had spotty bleeding after. I scheduled an appointment to see an OB (have not been there in years) and will have her look at my Vagina to tell me if it’s normal. I don’t think any of this is normal. Does anyone have any insight as to what could be wrong with me? I’m afraid that I’m broken forever and this is what it is.

    Reply
    1. lavalinda (Post author)

      Shelley, do you have proof 100% of the mesh was removed, including the anchors. The only test that can determine that is the translabial ultrasound and it is done by the urologists at UCLA. You could call their office to ask if anyone does it in your area. Look to the right and you will see info on these surgeons. The test will show up white wherever it is. No other ultrasound will show it.

      Reply
  23. hi

    oh my god. i just had tvt o done in australia. but no pain or complication so far. but im scared of reading all this. should i remove it before taking long? or should i wait for any sign that make my body bad?

    Reply
    1. lavalinda (Post author)

      Hi, the hard part is you may not have any issues for a few years, but the easy part is you can learn about what they are and take action sooner. There is a Down Under site and I will come back and add it here. Read about a woman in New Zealand and the link to her site is there. I am sure she can pass you forward to an Australian group where you can ask questions and keep an eye on things. In the meantime live your life as before. http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10851360

      Reply
  24. Jaime

    Hi I’m 34 and live in the UK I had tvt surgery 4 weeks ago and they pierced my bladder during surgery I had to have a catheter for a week but 3 days after surgery I started to get pain like a heavy ache in my right leg and swelling in my calf I was sent for a ultra sound to check for a dvt but that came back negative it’s now getting worse my right leg is aching constantly my lower back hurts occasionally and my left leg and groin hurts occasionally it mainly effects my right leg doctors won’t listen and now I think it’s all in my head it doesn’t matter how I sit or lie I’m constantly in pain I wished I did my research before the surgery but I took my consultants word I’ve had enough please help

    Reply
    1. lavalinda (Post author)

      Jaime I am going to give this information to someone in the UK who can help you.

      Reply
  25. Kimberly

    I had TVT placement surgery 4 1/2 years ago. A few months ago I started experiencing pelvic/groin pain that radiates down my inner thighs and is so severe I can’t stand up straight. It only happens occasionally, but have had a sensation of pulling type pain in my groin after I first stand up for quite sometime, also hip pain. I saw my gyne yesterday who is trying to tell me it’s my endometriosis, even though I have not had any problems with that sice having my ovaries removed at the same time as the TVT procedure. Is it common to start experiencing problems from the TVT years after and not right away?

    Reply
    1. lavalinda (Post author)

      Kimberly you are on the right track. It IS the mesh. It shrinks in your body over time and causes complications. I and many other women started out this way and it worsened and caused nerve damage over time. So make an appointment at UCLA and begin now. There are two women surgeons there you can see. Look at the right for those doctors. Some women it took 5 to 7 years for complications to begin showing up. That is why we all yell “No more mesh!”

      Reply
  26. Carina

    Hi, I am 46yrs-old and from Australia. I went from being a fit and active woman to sudden onset of fatigue and hardly being able to walk after doing a workout involving squats. I say many doctors and specialists who could not determine the cause of my fatigue and extreme leg weakness. I went from doctor to doctor and was eventually diagnosed with chronic fatigue syndrome. Finally I asked my GP to send me to a gynaecologist to check whether the sub urethral sling (TVT mesh) could be causing my health problems. It was confirmed that indeed I was suffering from mesh related problems. So now I’ve had a partial removal of the mesh but my symptoms still linger. I am basically housebound, can’t sit, can’t bend, am in constant pain and most days am barely able to walk. It is really hard emotionally being so exhausted, ill and immobile. Some days I think death would be kinder than living with the low quality of life cause by the mesh. Fortunately I have found a specialist who is willing to try to remove the remaining mesh. My prayers are that once the remaining mesh is removed my life can have some semblance of normality.

    Reply
    1. lavalinda (Post author)

      Carina I feel deeply for you. Please keep me informed how you do after your next surgery. I care very much and would like to know.

      Reply
  27. Ann

    I had TVT surgery done April 10th along with A&P repair. The type of sling used on me was American Medical Systems retroarch. This is relatively new to the market but from what I’ve read, no testing was done before it was used. After surgery, I had more pain on the right side than I did on the left. It hurt to walk but I figured it was just because the surgery just took place. When my doctor removed the catheter I was unable to go, wound up having terrible bladder spasms and wound up having the catheter in for a week before I was able to go on my own. My doctor told me by 2 weeks I’d be fine. Needless to say, I wasn’t. I still had the stabbing pain, not all the time, just when I moved a certain way or stood for too long. At 4 weeks I went back to work and just sitting all day made the pain excruciating. I needed quite a bit of pain meds at the end of my day to take the edge off. I called my doctor and he was less than sympathetic. Told me he had never had anyone ever have this much pain at the 4 week mark. He had no explanation for it other than, he told me my body was just taking longer to heal. He put me out of work for an additional 2 weeks. It was better when I went back but the fatigue sidelined me, all I could do was work and sleep, occasionally I would get that sharp pain that would shoot down my inner thigh. It doesn’t last long but enough to make me aware. I cannot touch the spot where the incision was, it’s too painful. Sometimes, sitting and having my clothes brush up against it makes it ache, kinda like a deep bruise. When I went back for my 8 week check up again, doctor was less than sympathetic. He told me there was nothing but time that would help me. He told me there was no way the fatigue was from the surgery, that I should just take vitamins and go for more walks. He also told me the pain was probably from scar tissue and he could inject it and that would immediately take the pain away. I opted not to have the shot, just seemed barbaric to me. I was already having enough pain, I didn’t need to add to it. So that leaves me wondering, is this a mesh complication or just recovery that’s taking a little longer than usual?

    Reply
    1. lavalinda (Post author)

      Ann when I read your story I knew I had to give you all the facts so I spent my time researching your sling. You need to be informed so that you can do something soon. Please get an appointment with Dr. Raz at UCLA. He can remove those anchors. Read this blog. http://meshangelnetwork.com/2014/07/the-mess-of-ams-mesh/

      Reply
  28. Ann

    Thank you for all the information here. I do appreciate it. Needless to say I was on the fence about the surgery to begin with and came close several times to cancelling it all together. I trusted my doctor but now I know I should have trusted my gut over that. I am left wondering what my first step will be. Unfortunately I live on the east coast so a trip to UCLA is not in the cards for me. I live near Yale and I understand there’s a doctor there who can help. I will contact him and go from there. Thank you for all of your research, I’ll print everything out with me and use that to make my case.

    Reply
    1. lavalinda (Post author)

      Ann you must ask this doctor if he can remove the anchors. I know many many women who travel from the East coast and I travelled from Texas because of all the horror stories I’ve heard. I wanted you to know the truth so you can do the best for your future. Let me know how you do and if you need anyone to talk to.

      Reply
      1. Ann

        Thank you! I will definitely keep you posted, I’m going to make the call tomorrow and find out what needs to be done. I’m so frustrated by this. I knew the odds but was told it was like lightening striking. I guess if you are the person who gets hit, it doesn’t matter what the odds are. Thankfully, right now I don’t have pain all the time. It’s only when I move or sit certain ways, it tends to be worse at the end of the week after sitting at my desk all week. I keep hoping that I’ll wake up and all will be fine but I know that’s just wishful thinking.

        Reply
        1. Ann

          Can you explain the anchors a little more? I was under the impression that this particular TVT does not have bone anchors? I was told the sling was held in place by the scar tissue not anchors.

          Reply
          1. lavalinda (Post author)

            Ann I searched high and low for the patent sketches to show how they attached it to your body but couldn’t find anything. Then it dawned on me this has a European patent (made in Germany) and it cleared in this country because of the existing 510 k process. It’s an old law and they don’t need to test it except on the women themselves. I know their others have some kind of anchors and they are difficult to remove. Tomorrow I will ask someone I know well but she went to Dr. Raz to get it out. Mine anchored in my pelvic bone but I believe yours is anchored in the groin area.

            Reply
          2. lavalinda (Post author)

            Ann I asked the lady last night about her Monarc removal, made by AMS because I have noticed that the patents I found by AMS have very similar characteristics and they attach at the obturators which is why they are notorious for leg pain and permanent injuries. This is what she said. “I never had any partial removals (thank goodness) Dr. Raz removed my Monarc 2 years ago this month. It was done vaginally. I know that I needed 2 transfusions during surgery because of the bleeding where he removed the anchors from my obturators. Other than that I didn’t experience a lot of problems with it.” Ann, please be careful who you choose because most only remove the mesh and leave the anchors, which is the attachments. Those attachments will continue to cause you the pain until it becomes unbearable. I wanted to go back and forth with you here rather than direct email because you may not realize it, but you will help thousands of women understand what these products can do to their bodies. It is very difficult and dangerous to remove those attachments, which is why they say they cannot be removed. My question is always then why do they keep putting these products in women?

            Reply
  29. Carolyn

    Has anyone developed Lichen Sclerosus after having their tvt mesh implanted? I had my tvt sling tape operation in January this year (8 months ago), inserted under my urethra and attached to my pelvic bone. 3 months later, I began to itch like crazy in the vulva area (top section of the vagina) and I have just been diagnosed with lichen sclerosus! It is thought that lichen sclerosus is caused by an autoimmune disease however, all my blood tests have come back as normal. Now I am worried that this mesh is beginning its destruction on my body! I am in Perth Western Australia and I am seriously considering having it removed. Does anyone know of a surgeon in Perth who performs the removal of mesh?

    Reply
    1. lavalinda (Post author)

      Carolyn I do not know about surgeons in Australia although some have spoken out against mesh at urology meetings. This is a site in New Zealand and they would know more about your area. I will look up what you have spoken about and if I find anything I will add it here. http://meshdownunder.co.nz/ I looked it up this morning and it is an immune disorder. I have no doubt the mesh in your body is creating this problem as many, many women have immune disorders. Hair falling out, teeth rotting and falling out are two very common ones. Most of them go away once ALL the mesh and anchors have been removed. You are allergic to the mesh for sure. http://www.niams.nih.gov/health_info/Lichen_Sclerosus/default.asp#1

      Reply
  30. kelly

    hey there i had tvt surgery done in london it eroded three times . i am 32 now and this has been going on 4 years . i havent had a relationship since and the one i was in ended due to the stress of all of this :-( i have had part of the tape removed and am still sore . they want to now remove the rest but am so scared something else will go wrong . plz help me

    Reply
    1. lavalinda (Post author)

      Kelly there is a woman in England who helps women over there and this is her story. http://meshangelnetwork.com/2014/07/one-womans-war-on-mesh/ She has an organization over there and this is it. http://www.meshiesunitedgroup.co.uk/

      Reply
  31. Pjtucket

    Does anyone know of a good doctor in Tampa, Florida that can remove the tape? I’ve had it in four years and it’s not helping. Bunched by the vaginal opening. I’m going back to the doctor that put it in but I’m worried….

    Reply
    1. lavalinda (Post author)

      There are doctors everywhere but most cannot remove it all. Check out ‘questions to ask before removal’ in the search engine above.

      Reply
  32. Kerry Harrison

    I live in South Africa. In 2010 I had a urethral sling fitted due to stress incontinence.. couldn’t run, jump, sneeze and sex was out of the question! I had no complications and the surgery went well. However about two years later I had the most crippling back pain, with shooting pains down my right leg and my hips… I ended up in hospital = xrays were clear, and the physician mentioned Sciatica but needed to confirm with an MRI. I couldn’t afford the MRI and discharged myself. I have been experiencing the same symptons, sometimes very severe hip pain particularly on the right hand side… I have had bouts of cystitis which I have mixed with herbal medication; all this time I have thought I have had back problems relating to my spine but upon reading the blogs, it seems it may very well be caused by the mesh. Sometimes the pain is so severe I am unable to stand up.. my hips really hurt and I battle to walk. I am 54 years old. I will print out this blog and take it to the urologist who inserted the sling and see what he has to say about it. Does anybody know anyone in South Africa that I could consult with? If I am lucky enough to have the mesh removed will the incontinence return?

    Reply
    1. lavalinda (Post author)

      Kerry please read this blog. I am going to put you in contact with another woman in your country. http://meshangelnetwork.com/2014/05/hysterectomy-mesh-in-south-africa/

      Reply
    2. lavalinda (Post author)

      Kerry I sent you an email along with another woman living in your country. I think you need to talk.

      Reply

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