There is Hope, The Vaginal Mesh Helpline shares stories from women on their vaginal mesh complications. We found this blog on line and are sharing it with our readers.
Somehow we ladies, victims of mesh products have become members of a club we never wished to join. Even though we don’t want to be part of it, we can turn the tables on the medical industry and help each other and those who cannot help themselves.
When I started this blog it was out of my own anger and frustration because I researched mesh before I had the surgery. What I found was only older cases, pre 2008, and when I questioned this surgery, I was told that was the ‘old’ mesh and it had been recalled and everything was fine. No more problems. My doctor never once told me about a warning that the FDA had put out after a lawsuit in 2008 had been filed and settled by the women who had been scarred by bladder sling mesh. She knows about my case because I have forced her to know and yet she continues to maim and injure new women with this product. I am not the only member of her injured club either. I know of at least one other woman who was maimed by her with this mesh and if women would speak up I am sure there are many more.
Yesterday I talked to a lady whom I have teamed up with to help all women who stumble in my blog and either leave a message on the blog or contact me directly. She had her mesh removed by a great doctor in California in June of this year. Like me she could not walk nor take on stairs. I was thrilled when she told me yesterday that she now walks one step with one foot and the next with the other. Sound odd? It is because when you are crippled by mesh, you cling onto a banister and pulled yourself up one step, at a time, stopping to rest after each step to allow the pain to subside. You avoid steps altogether whenever possible because you know with each step there will be a stab of pain in your thigh, leg and groin. When she told me she could walk up stairs again I felt like a huge weight had been lifted. I have been afraid I will be left damaged and in a wheelchair. Now I have hope. I do know this. Getting the right doctor to remove all the mesh safely is the key. Partial mesh removal will leave you as sick as you are now, or sicker. Some doctors attempt to remove mesh then inform the patient it is impossible to remove the rest. Not so! The right doctor can reconstruct whatever has been torn up from previous surgeries and without the use of mesh products. We have hope!
Another thing to know. The FDA will be having a meeting on September 8th and 9th, with a panel to discuss the use of mesh. In a moment I will give that information, in case you can attend. For most of us it is impossible to do so. However, we can stand up and be counted by the FDA. Report your case! I cannot say this enough because you may think the ads on TV means a recall. It does not. What it means is there has been enough cases reported to the FDA to prompt the July warning. IT WAS NOT A RECALL. That will only happen if everyone reports their cases and stands up and be counted.
To help you report your mesh complication I wrote a blog with all I learned when I reported mine. It is effort to get the information you need, but don’t back out. For every case reported, hundreds are not. For every case unreported, more women will suffer with future mesh implants. This is the information you need to report your case. When I first wrote this, it had taken weeks for me to get the information. Now I know better. Go to the hospital you had your surgery and give them the date. Ask to see the PERIOPERATIVE NURSING NOTES. Tell them all you need is the implant number and tell them where to find it. You should not have to pay for this information. Tell them you are having complications from the implant and the FDA wants the name and number. Now here is what I wrote before.
How to report to the FDA Where to find the manufacturer name and lot number.
When I received my hospital medical records I immediately looked in the physicians Post Operative Report to find the product name and number. I found the surgeon’s hand written note that it was Boston Scientific Advantage Fit Sling, so I went to the FDA site to report the product. The FDA site is confusing because if you are not a medical technician, some things don’t make sense. If you don’t give the right answer, the screen makes a noise and a box pops up. I persevered and almost finished but was stuck because scanning through all the pages, I couldn’t spot it. I fortunately had the email address of the woman who had her tape removed, who also happens to be an RN, so I sent Marianne an email last night asking for her help in this matter.
This morning she told me to look in the PERIOPERATIVE NURSING NOTES under implants. Thank God for Marianne! There it was, name, mfg and lot number. I made my report to the FDA.
Why report it yourself? My surgeon did not do it and if we, the victims don’t either, then more women will be injured.The moral of this story is GET THOSE NURSING NOTES WHEN YOU ORDER YOUR RECORDS. Fortunately I did thinking there may be something important in them. My lesson from all this is, order the hospital records first! Report the product yourself, that way you know the government knows what is happening. Doctors don’t care. Then get this information to a lawyer!
About the upcoming FDA meeting. I took this information from the FDA site.
Procedure: Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee. Written submissions may be made to the contact person on or before August 30, 2011. Oral presentations from the public will be scheduled between approximately 10 a.m. and 11 a.m. on September 8 and 9, 2011. Those individuals interested in making formal oral presentations should notify the contact person and submit a brief statement of the general nature of the evidence or arguments they wish to present, the names and addresses of proposed participants, and an indication of the approximate time requested to make their presentation on or before August 22, 2011. Time allotted for each presentation may be limited. If the number of registrants requesting to speak is greater than can be reasonably accommodated during the scheduled open public hearing session, FDA may conduct a lottery to determine the speakers for the scheduled open public hearing session. The contact person will notify interested persons regarding their request to speak by August 23, 2011.
Contact Person: Shanika Craig, Food and Drug Administration, 10903 New Hampshire Ave., Bldg. 66, rm. 1613, 301-796-6639, or FDA Advisory Committee Information Line, 1-800-741-8138 (301-443-0572 in the Washington, DC area), and follow the prompts to the desired center or product area. Please call the Information Line for up-to-date information on this meeting. A notice in the Federal Register about last minute modifications that impact a previously announced advisory committee meeting cannot always be published quickly enough to provide timely notice. Therefore, you should always check the Agency’s Web site and call the appropriate advisory committee hot line/phone line to learn about possible modifications before coming to the meeting.
still have that piece of mesh in my freezer… just in case I need evidence. But, seriously, the smell of that plastic was just terrible when I opened the pot after the mesh was removed. Jane's interview with me gives a good overview of what happened – and I only had to suffer for a short while and was lucky enough to have complete removal. The surgeon I had was excellent and I am now fully functional and pain free – and says that after a couple of months it makes little difference how long the tape has been in as it is embedded fully and takes as much cutting out as if in years.
It is helpful to understand about how mesh deteriorates inside the body – look this research up and you will see magnification of different mesh and how they deteriorate -'Polypropylene as a reinforcement in pelvic surgery is not inert: comparative analysis of 100 explants'. It's horrific. So is this one, using rats and mesh to illustrate the negative effects of mesh:'Early tissue reactions in the rat bladder wall after contact with three different synthetic mesh materials'. It's bad enough for those rats, let alone us human guinea pigs. Mesh Medical newsdesk has a really interesting medical article that explains how mesh is being inserted into 'clean contaminated' parts of our body i.e. the vagina, which should never happen.
Fed up – what your 'successful' friends and relations do not know is the long term outcome of their TVT. It can sometimes be years before ill-effects become apparent and then they are serious. Obviously I would not wish that upon them, but you are in a position to know the risks you could be taking. Many women on this forum and others did not have problems initially. The advice given about staging your surgery, and trying pelvic physio is good: I'm now doing pelvic exercises having been TAUGHT and it's working well. I doubt I'll be completely dry all the time – but who cares. It's irrelevant compared to that dark place with mesh. Liz