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://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/

136 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

      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

      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

      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

      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

    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

    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
    1. Denise

      Hiya was with a TVT, A consultant I saw today,said my TVT ,cld not have affected my pudendal , Sciatic nerve and groin nerves(i have had nerve conduction tests) plus Full Body Mri/ The MRI showed No nerve compression, But the nerve Conduction tests showed Damaged Sciatic/groin nerves /also diagnose Meralga Paresthetica /i haven’t have the Pudendal nerve tests yet/ I am going by my bowel/rectal symptoms,

      Reply
      1. Linda (Post author)

        Denise any tests for nerve pain/damage is subjective. I hope you find out but I am certain it is from the mesh.

        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

      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

      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

      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

      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

      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

      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

      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

      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

      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

      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

        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

      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

      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

        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

      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

      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

      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

      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

      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. Belinda Sain

    I have always thought in the back of my mind that my problems are due to the Obtryx Halo sling placed in me in 2009… I was good, thought I was one of the lucky ones. Maybe not so much… I first developed a red rash around my neck…does not itch burn or bother me other than just being able to see it… looks as if I may have been in the sun… in 2010 I started having stomach and bowel problems…tests said I had H.Pylori…ulcers…treated for that but still have ongoing issues with both the stomach and bowels. I started having right side groin pain and my GP would tell me IBS… finally had tests done on my gall bladder and it was low functioning so it was taken out oct 2011… right side groin pain was still there…2012 the pain in groin was now also involving my right hip area…as well as the stomach and bowels…my monthly was horrible … I had stuff coming out of me that scared me… so back to GP who again wanted to say IBS… I then went to my GYN. and he felt the problem was the Uterus… so a partial Hyst. was done…felt good for a little while… oh I have adhesions that had my uterus bladder and bowels attached to the abdominal wall…the adhesions were from my breast bone all the way down… I felt good for a while with some hip issues here and there but nothing major so I kept on going.. 2013 while working I got a stabbing burning pain in the right groin area and left work to go to the ER…CT showed nothing…only some droplets of air in my bladder… AIR??? The Dr. asked me if I had been catheterized recently…well no it was almost a year to the date since my HYST. so back to my GP who tells me IBS again…He did some X-Rays of my pelvic region and I seen the anchors when the Woman put the film on the screen…I knew then that was the the reason for the pain. I was upset with that …that will not do… so made an appointment with a urogyn. I had been having return of some of my incontinence issues…like laying asleep in bed and being woke up by the urine running out of me… or as soon as my feet hit the floor it is coming ready or not… or just not being able to hold it to go to a bathroom…She did confirm that I did have urine loss… and wanted me to return for other bladder tests….well her receptionist would not fill out FMLA papers so I could return without effect on my job. I didn’t have any more time left to take off… and she was quite rude so I did not return at all… the groin pain continued so I went back to my GYN… he ordered an ultra sound and does laparoscopic exploratory surgery and may have to take the Right ovary… well I lost the right ovary… again to adhesions that had my ovary twisted …my bladder and bowels all were stuck to the abdominal wall.. NOW 2014…right side groin pain hip pain, backside pain, Buttocks pain, some twitching in both legs just below the butt checks. along with those pains my elbows and my knees…seen a Ortho. about the knees ( they only want to deal with one thing at a time) was sent for PT… PT puts me on a stationary bike for 6 min. first time within 3 min. I was in excruciating pain in my hip (inner hip area) groin. second time I did the whole 6 min with no issues… 3rd time I did not make it one min and had a very hard time getting off the bike to stand up… had to just stand their crunched over until the pain passed…I changed GP he did X-rays and ordered MRI of spine and NOTHING… now I have pain while sitting and while standing… sit a little then stand a little…lol… I had him check me for a Hernia…(I had a hernia when I was 10 and I have no idea if mesh was used to repair that) now I am going to a General Surgon to verify or NOT that I have a Hernia…I believe it is the anchor they are feeling and MY PAIN… also changed ORTHO dr. and have spent the past few days going around picking up x-rays from every place that ever did one…and will be asking him about Fibro. as I hurt all over…on top of that the meds I have been taking 1000mg naproxen a day. I refuse to take narcotics… or anything that is going to impair me at this point.well now I seem to have developed ulcers AGAIN… but No H.Pylori….so Off to a GI specialist… and …A trip to Atlanta to Dr Miklos to maybe do something about the sling… WHHHHEEEEWWWWWWW….so next week I have a drs. appointment almost everyday…I am making one last ditch effort to rule out everything else and prove that the sling is my problem… I am no longer in denial..my pain grows each year. If I lose my job in the process it is something I am willing to do… I mean it is to the point I cannot do my job anymore…I work in an Engine plant building engines and my work is very physical… Please advise me …sorry so long but it has been a long road… I am not sure what is Mesh related and what is not… but I am certain my groin and leg pains ARE from the anchors…I also have pains that run through the crotch area… weird…

    Reply
  27. 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

      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
  28. 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

      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
  29. 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

      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

            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.

          2. lavalinda

            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?

  30. 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

      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
    2. Jayne Hamilton

      Hi Caroline I have developed Lichen Sclerosis. I have had it for about 4 yrs,my tvt operation was approximately 5years ago.I only just realised through a support group for tvt sufferers that it can cause an autoimmune disease which lichen sclerosis is. I am horrified as it has had a big impact on my life. At first when I heard about all the suffering some women are having I thought i must be one of the lucky ones now i realise I’m not. I see that your post is 2014 and I’m wondering if you got the mesh out and if things have improved?

      Reply
      1. Lorie

        Jayne Hamilton,

        I am so sorry to hear that you developed lichens sclerosis. I have two dear friends of mine who have suffered with it as well and I heard their horror stories with it. I don’t have it but I do have Hashimoto’s and that’s bad enough. I feel for you. I wanted to reach out to offer you so guidance with LS. My one friend through her own journey decided to take matters into her own hands and was able to put all 4 of her auto immune diseases in remission. Here is her website for you to hear her own story and maybe get some more guidance. I have been encouraged by her with my own struggles and have switched to a paleo diet/lifestyle and it seems to be helping thus far. I just started it a week ago but I have noticed some changes. Kimberely is an amazing wonderful and supportive lady and her passion is to help educate people who are struggling with their own invisible pain and teach them how to manage their auto immune diseases with Whole Foods and the right nutrition that the body needs to fight the inflammation. If you’re interested in finding out more about it her name is Kimberely Andrews.
        http://www.integrativehealingtoday.com/. She also has a Facebook page called Kimberely Andrews- Auto Immune Specialist

        Blessings,
        Lorie Boysun

        Reply
  31. Christie Carr Freidin

    I read you information, I too have had all your symptoms. I got the T-Sling made by Herniamesh, it is called a T-Sling, I had the implant in 12/2007, revision surgery, 2/2008 because I could not urinate at all. I then had issues such as burning vagina, sexual discomfort, and severe pain in hips back and right leg. I have seen multiple dr.’s since, then in 2014 finally had a dr. admit that the sling needs to be removed after finding in a cystoscopy that it was partially inside my bladder, I had it removed 5/2014 then was readmitted for 9 days because it abcessed.
    I have leg swelling, I have burning urination, I wet the bed. I wet my pants constantly. I can’t walk a mile. I can’t stand up for long periods of time, I am 43 now and walk very carefully because the pain is ridiculous. I have not found an attorney who will help me because it was seemingly direct from the manufacturer. My entire body has been destroyed just because I squirted a little when I coughed. I have been wrecked. I need advice. I reported to the FDA as you have suggested.

    Reply
  32. 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

      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
  33. 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

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

      Reply
  34. 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

      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

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

      Reply
      1. Yvonne

        Dear Lavalinda, please can you email me. I live in South Africa and need more information please. Thank you

        Reply
    3. nelie

      Hi Kerry i am also from south africa , also had a tvt mesh sling, who helped you with this please

      Reply
      1. Linda (Post author)

        Anyone from South Africa, I have my old contact back and she will give you the name of a doctor there. Just leave a comment with correct email address and I will contact you.

        Reply
        1. jolly

          south africa tvt complications

          Reply
          1. Linda (Post author)

            I sent you an email Jolly.

    4. jolly

      I am also from south africa had a tvt 2015

      Reply
  35. Donna M

    I am in tears as I read all these post. To know I’m not crazy is a relief…I don’t know how I haven’t found this site sooner as it would of helped me with my self doubt doctors have given me the last two years. First, jam so sorry for everyone’s suffering and the rotating doors trying to find the answers we all deserve…I had my surgery almost three years ago and immediately had severe back pain but was told also after X-ray it was prob the position I was in for surgery n it would go away… Long story short I don’t sleep well, having awful hip n groin, thigh pain…n having trouble walking besides other bladder issues. Recently I was sent to rec center in nc to supposedly the best who knew about this n they just blew me off!!!! Just saw a uro spec n he looked inside bladder n no erosion.. So he blew me off w well I can send you to Duke.. Or you can go back to the dr who did your surgery..( he’s in another state I’ve moved since my surgery) I was like.. W HAT… How can they put these things in us but not be aware of the dangers?? I’m scared now as my hip has worsened since this dr did this test a few weeks ago n I don’t have the finances for doctor rotating doors..and besides who do you see when you supposedly seen the best.. I’m sorry if I’m rattling on here but I’m so frustrated n tired of living in pain… God bless you ladies n if someone has advice for me here in NC I would be so grateful,,,
    Donna M

    Reply
    1. lavalinda

      Sadly Donna so many women are like us and I know others who went to UCLA or Dr. Rodriguez in California. Please begin your New Year even though it means travelling far from home and look into one of the doctors on the link at the top of this blog in pelvic specialists.

      Reply
  36. Donna M

    Oops I forgot to ask ..has anyone gotten since their surgery red dots that look like tiny , wee blood blisters on their belly..I’ve noticed they get worse when my pain levels go through the roof!! Thanks…

    Reply
    1. lavalinda

      Donna you are having reactions to the mesh and it has to come out for you to feel any better.

      Reply
  37. Donna M

    Thank you so much for answering my post, especially during the holidays! I guess like all the other woman who post here with the multitude of problems we face, I also cant work and don’t have the finances to travel to Dr. Raz, or any other doctor out of state. It just sickens me what I read here about everyones problems and I just want to tell you thanks for being here for us and all the wonderful information you provide. I don’t feel alone or crazy any more. So many of the post I read I say “OMG did I write that, that’s what I am experiencing!” Can you answer me one question…if there are sooo many of us with debilitating results from this surgery, why is there so few doctors to take care of us? Well I wish you and all the ladies who suffer a very blessed New Year and again, thank you for being here for us..for me…

    Reply
  38. Suzie

    Hello Ladies
    I’m so glad I found this site. I’m in the UK and just getting some info/ ammunition together for when I go to see my consultant. I had a TVT inserted in 2010. I was given no other options, it seemed that this was the new wonder cure for incontinence problems . Being naive and going through a really bad marriage separation at that point I just went with what my doctor advised. I TRUSTED HER!
    All seemed ok for maybe 2 years and then I started to have the old problem again of incontinence. Finally last year I decided to do something about it and got referred to a consultant who was able to tell me that my tape was sagging, not supporting as it should. told I needed tests and they would get back to me with some options.
    After my consultation I started googling and I was horrified by all that I found on the issue of failed TVT.
    Reading other ladies stories I realised that the pains I had been experiencing for months could well be attributed to the tvt. Constant groin and leg pain, frequent UTI’s, a pulling sensation in my groin especially on one side, worse when I lay in bed, lots of pubic area pain and now bladder inflammation.
    I’m just appalled by what I read that other ladies are going through, many far, far worse than me.
    My concern is that when I spoke to the consultant about what could be done he was of the opinion that the tape was still the best thing and would possibly still reccommend it for me depending on what my test show.
    Have spoken to my family doctor and she says don’t hold out much hope of getting tape removed. Now I know of some of the few doctors in the UK that are specialist in removal and that is the route I want to go down but my problem is I don’t think my consultant will be too open to this idea.
    How do I get him to understand that I know my body, I’m not stupid and I’m certainly not as naive as I was when I had the TVT inserted. I don’t want to bombard him with printout of what I found on the Internet but I do need him to at least confirm that my problems do stem from the tape.
    I feel helpless as I just want my family doctor and my consultant to understand the distress and upset this tape is causing me not to mention the re occurrence of the incontinence which also has to be sorted too.
    My consultant is not yet aware of all the other issues as I hadnt done my research til after my initial consult so my next appointment is to address some of these issues and see what he recommends for the incontinence.
    When I researched this issue and saw what other women are living with it was like all the pieces of the puzzle fell into place.
    one thing I do know is I want it taken out!!!
    I’ve taken some comfort from this site knowing some women have had it successfully removed.
    Any advice on how I get my problems across to the doc and how I get him to believe would be so gratefully received.
    Good luck to all you ladies out there, maybe together we can stop them using these tapes until they know more about them.

    Reply
    1. lavalinda

      Suzie I suggest you get to know a lot of other ladies in the UK and ask questions. I do not know any doctor over there who had it all removed and your problem is that the anchors are in your obturator nerve and it is dangerous to remove them. That is why you are having the pain. A few women have travelled out to UCLA and Dr. Raz to get them out. I just posted a photo of a group of ladies in Scotland who are fighting against this procedure. Look at my Mesh Angel Network Facebook page and you will see. If you leave me a message there I will introduce you to some who you can talk to.

      Reply
  39. Tammy Brown

    Hi, I have been ready this posts and I am writing this for my sister. We both had a hysterectomy and a tvt bladder lift and I have had no complications but my sister was not so lucky. The surgery was 4 weeks ago and she has not been able to urinate more than 10 ml each time. She just had a CT scan and they discovered her bladder was so full that it was going over her hips. She had a catheder put in and over 1000mls came out. So for 4 weeks she hasn’t been able to void her bladder. The dr is claiming that this will all go away and that she just has to wait. She has had infections, low grade fever, vomiting and diahhrea. This morning she had a purple string hanging out of her vagina, she pulled on it and heard a pop and ended up having to cut it off, she now is bleeding and in a lot of pain. She is currently waiting in emergency to see if they can do anything. just don’t know what to do. We live in Alberta, Canada. Does anyone know of a Dr that can fully remove the mesh that is in Canada?????? Feeling hopeless and frustrated.

    Reply
    1. lavalinda

      Tammy it will never go away and if you read my blog completely you will know I had to fly out to UCLA to have it all removed because all they did was cut it in the center during a second surgery and that caused more problems over time. All I can do is put you in touch with a good woman in Canada for support. I will send you both an email.

      Reply
  40. Angela Greer

    I was diagnosed with Lichens 5 months after a hysterectomy (in 2008). I am just connecting this. I have been living in hell all these years, and I’m hoping I may be onto something. My Lichens symptoms have worsened in the past 3 to 4 months. Good luck to you.

    Reply
    1. lavalinda

      Angela I have heard other women say this too and I am sure it is because mesh has affected your immune system and while it is in you, you will continue to have many illnesses. If anyone is reading this and do not know what it is, read this. http://www.niams.nih.gov/health_info/Lichen_Sclerosus/default.asp

      Reply
  41. Lisa mckay

    I had a TVT tape 6 years ago and have been chronically ill since. Recurrent bladder infections and sever right hip pain I thought was arthritis. It wasn’t. This tape finally eroded through my vagina finally found a doctor who believed me and she removed what she could. The pain in my hip went, the incontinence came back and 3 months later I’m sick again infections resistant to antibiotics. One last attempt to clear it up then she will have to reopen this wound and try and find the rest of the tape. A doctor offered me a quick fix 6 years ago I should not have taken it.

    Reply
    1. lavalinda

      Thank you Lisa but while all or any of it is in your body, you will continue to have infections once they begin. Please make sure this doctor has removed mesh completely and find out what it was that was put into you. Most removals at UCLA are done vaginally not by opening up a woman’s stomach. You need to learn a lot more before you go through a surgery that could make you worse.

      Reply
  42. Angie

    I had a TVT procedure 8 weeks ago. During the procedure they perforated my bladder and I was sent home with a catheter in for 9 days and I ended up with a UTI, which cleared after 2 lots of antibiotics. To be honest I haven’t been too bad until yesterday. I started with groin pain on one side and today it is so bad its making me feel sick. Painkillers are not doing anything for the pain. I was hoping it was just because I have been coughing a lot as I have a bad cold, but now I have read this I am starting to panic!

    Reply
    1. lavalinda

      Angie often it does not happen immediately because much of the time when surgery is performed it takes time for the pain killers and anesthesia to leave our bodies. You said TVT procedure and now you need to learn was it TVT or TOT.

      Reply
    2. lavalinda

      Angie your email tells me you are in the UK and you need the support of women in that country to make an informed decision. I will give you a link to a woman there. Read this blog and you should be able to find this woman by Google. http://meshangelnetwork.com/2014/07/one-womans-war-on-mesh/

      Reply
  43. Laura

    Hi – I have only just come across this site – I wonder if I may have changed my mind if I had found it a few weeks ago! I’m in The UK and have had TVT surgery a few weeks ago. My reason for posting is to ask why do my legs feel so tired? They feel as though I have walked a marathon by the end of each day, with my thighs and buttocks aching and sore. I’m also noticeably very tired. Is this all normal in post op recovery?

    Reply
    1. lavalinda

      Laura there are many, many women screwed up in the UK. This may help you find someone who will offer you support. http://meshangelnetwork.com/2014/07/one-womans-war-on-mesh/

      Reply
  44. Jude

    To cut a very long story short. Almost 11 years ago I suffered stress incontinence after the birth of my son. I have had 2 TOTs which did not work and the n a TVT approx 7 years ago. I have suffered constantly with UTIs and blood in my urine. After many trips to the doctor and a CT scan I have discovered I have a large done in my Bladdet. This is probably caused by the tape which has gone into my bladder. I have surgery in 6 weeks time to try and blast the stone away, however if the tape has gone into my Uretha this will be more surgery. Ihopefully there is a light at the end of a very long tunnel.
    I can sympathise with all of you out there.

    Reply
    1. lavalinda

      Jude kidney stones are a lot more common than you would think and that is because these slings keep the bladder too tight and it cannot work the way it should and you can’t empty. I have heard many women who deal with this. This is the blog. You may want to start taking marshmallow root capsules or drink the tea made from it. I take it every day. http://meshangelnetwork.com/2012/09/mesh-kidney-stones-serious-infections/

      Reply
  45. Margie

    I had a TOT procedure done in July 2009 along with a total hysterectomy and have been in constant pain ever since. My lower back hurts constantly and I have been told by a urogynocologist that my I have nerve damage because of the TOT and have what I call butt spasms and also have pudendal nerve damage. I was told that I have pelvic floor dysfunction. Not only am I in constant pain but not sure if any one else has experienced this side effect but when I have a bowel movement my pelvic floor and butt muscles spasm causing severe and intense pain. Has anyone else complained of similar pain due to a TOT procedure? I have had surgery to loosen the sling but am still in constant pain and need answers.

    Reply
    1. lavalinda

      Margie it definitely sounds like pudendal nerve damage to me and yes, thousands of women do experience it. Mine is femoral nerve damage which is groin, leg and hip pain. Back pain is usually pudendal nerve damage. Yes bowel issues as well and you may have more than one type of mesh, so get those hospital records and find out what type of procedure you had done. This is highly important when you need removal done. Bowel problems go out to Dr. Raz at UCLA.

      Reply
      1. Lene Denmark

        Dear Lavalinda
        I Am suffering with pain from my tvt-o….I have had a partial remowing…but not the ends….Do you know a doctor who are doing this.
        Best regards
        Lene from Denmark<3

        Reply
        1. Linda (Post author)

          I sent you a private email asking for more details.

          Reply
        2. Donna Steele

          I am in Rochester, NY. I also have unrelenting thigh and groin pain. I have had my sling removed from vagina to top. She did not remove anchors. I need to find help here in US. My pain is becoming constant. It has changed the way I live.

          Reply
          1. Linda (Post author)

            Donna I am so sorry and I hope your surgeon did not do more harm than help during your removal. The only thing I can suggest to you is that you get an appointment with Dr. Kim at UCLA as fast as possible. It will be much sooner than with Dr. Raz and she could evaluate your situation. This is her information.
            Dr. Ja-Hong Kim
            Assistant professor of Urology
            310-794-0755
            200 Medical Plaza Suite 140
            You can also read this blog to learn more. http://www.meshangels.com/the-ucla-journey/

  46. Julie

    I’m from Australia had tvto in February 2014 I now get groin pain like saddle soreness sometimes burning pain after urinating though don’t have a uti. It is painful to have sex and I have constant nerve pain down both legs. Please help as I don’t know who to contact
    Cheers

    Reply
    1. Linda (Post author)

      Julie give me time to contact someone from down under. I will send her your email address.

      Reply
  47. Cynthia

    Could ischiofemoral impingement syndrome be caused from the gynecare tvt sling ? had the sling implanted 2010 and now 2015 problems started. Feels like I am sitting on a prickly irritating something but 2 drs. all say no erosion and everything is fine. Everything ISN’T fine. I have IC on top of everything else.

    Reply
    1. Linda (Post author)

      Cynthia I have no clue what that is and don’t know anything about it. I suggest you go to a doctor and ask for an explanation.

      Reply
  48. Ericka

    I had my monarc transobturator sling put in after my hysterectomy Feb 2014 I just had it partially removed April 5 2016 Dr left anchors in I was in severe pain in my lower back and both hips and groin area have sciatica down both legs. I was told the mesh had contracted had to go home with catheter for 4 days couldn’t urinate on my own but now my legs are twitching every so often as if a Dr is checking my reflexes.

    Reply
    1. Linda (Post author)

      I am so sorry you are left like this. Most doctors will constantly put these slings in and then leave women to deal with the painful results.

      Reply
  49. Dianne

    You guys are telling my story. I had surgery in October of 2013. I hurt all the time. Vaginal burning, severe itching vagina and left side in groin area, and thighs, back, up towards buttocks, can’t sit, it hurts, can’t walk far or stand and squatting is out. Put on about 30 pounds and now saying vulvodinia. I told him I didn’t want he urethal sling in the operating room before surgery, and he talked me out of it and it’s been a living hell since. I don’t know what to do. Haven’t had sex in a year until the other night, and now I feel like something is stabbing me from the inside. I am tired of being sick, the weight gain, all of it. I am in VA. Any recommendations for a doctor to see if this is the mesh. It sure sounds like it. Help and prayers to all of you and hope some are finding answers.

    Reply
    1. Linda (Post author)

      Dianne, go to UCLA and get a true diagnosis. Yes I have no doubt it is the mesh. You can get in to see Dr. Kim, very quickly and she is doing a great job of removals.

      Reply
  50. Teresa Wood

    Teresa Wood. Milliken, Co
    I had the sling put in 2007
    Have been miserable.
    Nov 2015 had partial removal of sling, there is a portion on each side they left . I have had extreme pain in right leg and and lower back and buttocks. I have had two injections in back and one in hip. Extreme pain afterwards.since I can’t work for years now, I have Medicaid and let’s say that complicates things more! All the doctors keep telling me it’s not the sling. My back doctor wants to send me to hip specialist ( which I can’t get in for 7month) Just keep getting the run around. Any doctors in Colorado that you know who believes it is the sling.

    Reply
    1. Linda (Post author)

      Teresa without insurance I do not know anyone who can help you.

      Reply
  51. Laurie Haase. Kingwood, TX

    My TOT sling completely crippled my left leg. I had the mesh tape implanted almost 2 years ago (2015). Almost immediately after that I could barely walk. To make a long story short, my left leg contracted so much that, 3 months after the implant I could only stand at a 90 degree angle. I had emergency mesh removal at that time. But when I woke up from surgery, I had horrific leg pain. It became discovered that the mesh had clamped on to the adductor tendon in my leg. And when the mesh was removed, my adductor muscles completely SEPARATED. I have had several surgeries and flights out to a Philadelphia specialist to try to help me. He reattached the muscles but I still can’t walk. I have been on crutches for 2 years but my leg keeps getting worse still. I am afraid I am just about to end up living in a wheelchair. I have already been doing some of that. I am afraid that the mesh just completely hosed my muscles. It has destroyed my life. I am pretty much housebound because it is just so hard and painful to go anywhere. And I feel so alone because I seem to be the only person on the planet who has had her thigh muscles severed from mesh. I was such a healthy and active person. And now I feel like I have lost my life. I’m very sad

    Reply
    1. Linda (Post author)

      Laurie the FDA warns about these procedures, but they never stop them. What happened to you is horrendous and I know why you are so sad. Thank you for writing and shedding light on the dangers of the procedure itself.

      Reply
  52. parry

    Hi, I had my surgery in Ontario, Canada in February 2012. During my consult with the specialist I was never informed about this sling. Between the time of my initial consult and my surgery I noticed lots of commercials on the US channels about mesh lawsuits and didn’t pay much attention as I was never informed what was going to happen and I was so excited to just finally get the surgery. On the way in to the OR I told the doctor don’t use any of that mesh cause I’m hearing lots of problems about it. The doctor assured me that this was just in the US and it was not the product but the surgeons not knowing how to use it. I trusted and respected his opinion and never questioned further. Last week, I researched my mesh tvt-o and found it was recalled in September 2012, 7 months after my surgery. Last week, I talked to my family doctor, she has been amazing, and she said I should get the mesh removed. I literally had a break down and an anxiety attack because since the February 2012 surgery my quality of life has gone so far down that I don’t think I could go any lower. The more I read the more I know I need to get this sling out of me but especially the anchors, that I just found out about. Are you aware of any doctors in Canada that can effectively perform this surgery? I am lucky that we have universal health care and can get referred to the right doctor. Thank you for listening and thank you for sharing your stories…

    Reply
    1. Linda (Post author)

      Parry I wish I could give you a name of a doctor, who will remove it all and no do further damage, but unfortunately I can’t. There are many Canadian women I know, who traveled to UCLA to get it remove. I have been told that some Provinces are paying for it, but you should check to find out. Other women took savings, because their lives were not worth living without removal. Money means nothing if you know you will die prematurely.
      You are right about the anchors, but many doctors can’t remove them because it can be dangerous in the wrong hands. You could bleed to death if the do the wrong thing. Many doctors will say they removed it all and either it is a lie, or once you are messed up, they refuse you any help. So be careful and learn all you can if you choose to go elsewhere.

      Reply
  53. nelie

    TvT mesh sling compications , anybody here from south africa

    Reply
    1. Linda (Post author)

      Nellie I just sent you an email with someone you can contact to get help.

      Reply
      1. nelie

        thanks did send her an e mail waiting on her reply

        Reply
  54. Dawn M.

    I had a TVT-O put in 1/2016. My life is a living hell, my Urologist said he only puts them in , he doesn’t take them out..Of course..

    I found a patient advocate who recommended Dr. Twiss in Arizona. I was able to get a consultation and have my surgery scheduled for a FULL MESH REMOVAL in 3 months.. I am so excited..Everyone talks about UCLA…I can’t say enough about Dr. Twiss..He is known for being compassionate, understanding, and meticulous..I have known several “meshies” that have gone to have him after so many others have failed and he was able to perform a miracle! He did train with Dr. Raz and is at the top of the expertise list. He listens and answers all of your questions no matter how many you may have.

    With my TVT-O removal surgery is expected 2 1/2 – 3 hrs with a 48 hr hospital stay. The 2nd surgery will be 3 months after that using Fascia for the sling to fix my SUI. His surgery scheduler stated that women travel from around the world to see him and his surgeries go from 3hrs to 8 hrs on some women that have been messed up by other Dr’s. His nurses and office staff are the utmost knowledgeable about Mesh complications and it’s like a “Disneyland for Mesh complications and relief”..While 3 months feels so far off, I am in constant pain and have Pudendal Nerve Damage as well as other things, I have to see a Pain Specialist to get through the day..I have hope for the first time in a long time, I have something to look forward to ..That right there is something exciting. I am determined to not be a prisoner of this awful thing that happened to me, my family doesn’t deserve it and I will not just mope around and give up on life , there are days that are crippling but I keep smiling and tell myself I am grateful for my family and thankful for Dr. Twiss.

    Reply
    1. Linda (Post author)

      Dawn, thank you for your comment about Dr. Twiss. You may not be aware of this but I wrote a blog about him in February 2013 and I have shared it since then on my Mesh Angels Facebook page. He was wonderful when he shared his thoughts with me about the use of mesh and I understand he was trained by Dr. Raz and feel he is well equipped to do these surgeries. I wish more women promoted him on support groups and leave comments on the blog I wrote about him, so that other women will see them and feel more confident to go to him.
      I don’t know why women have not spoken of him, but I am not on any support groups any more, preferring to try to get on with my own life and find a way to be more content and at peace with my own permanent injuries. Life must go on.
      Unfortunately, not every doctor has been as kind as Dr. Twiss and after this blog I shared another about a doctor that other women promoted on support groups. In fact, I wrote three blogs about him, which after he (I am not using his name) caused me stress, I removed all three and vowed never to write about any doctor that I did not personally go to. Since then I never have. The doctor I am speaking of, did call a year later and apologize to me, but I no longer cared and left things alone.
      I do hope that three months after your upcoming surgery, you will leave a comment about your surgery to share with other women. This is the blog I wrote about Dr. Twiss. http://www.meshangels.com/conversation-with-dr-twiss/

      Reply
    2. Lorie Boysun

      Hi Dawn!

      I am scheduled with Dr Twiss on the 25th of this month. I am encouraged by consultation with him and he seems like an amazing man and medical doctor. He is very comforting and compassionate and I really feel like I’m in good hands. I am nervous and have anxiety over leaving my kids and family behind in Utah but my hubby will be with me. He’s my ROCK next to God. But it’s hard to know what to expect being from a different state and visiting the place one time for my consultation. We don’t have any family so we will be renting a VRBO very close to the hospital. But I am so ready to get this over with I will deal with the unknown and anxiety. It’s been a long hard and painful journey of 10 years and now I’m literally counting down the hours and days. I will keep you posted! ?

      Reply
      1. Linda (Post author)

        Lorie please leave your comments about where you stayed and if it was a good place. I am sure many will want to know.

        Reply
  55. Ruth

    Omg I’m so scared. I’ve recently learnt about the mesh issues. I’m 39. From Perth Western Australia. I had a hysterectomy, plus bladder sling and rectocele repair nearly 3yrs ago. 2yrs ago I developed what I now know to be lichen sclerosis and I’m horrified to read above that I’m not the only woman with LS who’s had mesh. LS can also be triggered by major injury and the first time I noticed it was a couple of weeks after a particularly horrific horse riding accident. I’ve had horrible accidents before though and it didn’t trigger an AI response. I’m not quite sure what to do.

    Reply
    1. Linda (Post author)

      Ruth, you need to read this blog. Your LS may be the result of the implant causing an attack on your immune system. http://www.meshangels.com/the-silent-killers-of-mesh/

      Reply
  56. Monica Jones

    Hi I am from Australia and only today found out exactly what sling I had fitted. Gynecare TVT Tension free support. For years I have been going to the Dr for heaviness just above my pelvis, it seems as if I have a bag or something there. Had ultra sounds, xrays, Cat scans – nothing comes up. It drags on my lower back and at my groin aches. A few times I have gone to stand up and my right leg has not worked and I have fallen over. No one seems to know what is wrong. Oh there is nothing wrong with you, your leg must have gone to sleep. I don’t know what the heaviness low down is as nothing shows up. I do know now that I have a rectal prolapse.

    Reply
    1. Linda (Post author)

      Monica your symptoms are just like mine were before I had it removed. There are support groups through Facebook, but if you can’t find one, I can put you in contact with someone.

      Reply
  57. nelie

    Tvt slings south africa, we need all ladies who experience problems to contact nelie

    Reply

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