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.