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Women's Open Letter to Doctors – The Truth About Pelvic Mesh

Noni Wideman

Noni Wideman

The letter below is from Noni Wideman, researcher extraordinaire! and long time contributor to Mesh News Desk and her own Links on Mesh, a Facebook page. Here. This is a letter you may want to share with your medical practitioners or anyone who needs an update on the current crisis in women’s healthcare.

Thank you.  And thank you Noni!!

We thank you for this opportunity to share with your members some truths, concerns, challenges and constructive criticisms . Who are we, you ask, to offer criticisms, challenges and our perception of truths to skilled, highly educated specializing surgeons and doctors .

We are the thousands of women whose lives have been negatively impacted by your efforts to repair our prolapses and stress urinary incontinence problems with synthetic polypropylene constructed transvaginal mesh. We concede that we are in a minority at this time. But, and this is a huge but, when looking at the number of women who have been implanted with polymeric constructed medical materials we are looking at up to 300,000 women per year being implanted with products that have been proven to be anything but inert when exposed to the destructive capabilities of chronic foreign body reaction. Having said that however, our minority by our estimation, represents as many as 30% of the total number of women receiving these increasingly controversial implant devices. If we want to be conservative we can estimate a 25% failure rate of polymeric types of medical mesh. If you do the basic math 75,000 women each year with varying degrees of adverse reactions to medical mesh over a ten year period means this minor group of women may well be actually near a million women. When you think about this significant subset of mesh implanted patients and the medical costs associated with this you would think the penny pinchers would be sitting up and taking notice. Or is it that they know and help sweep the injuries under the carpet to save money?

To us, a failure is when, instead of improving our quality of life with these implants, you have decreased our quality of life . It appears when reviewing you definition of success in treating POP and SUI by reading your peer reviewed medical articles regarding the safety and efficacy of these implants your idea of success is not having a reoccurrence of the prolapse or simply passing the cough test. You definition of success is too narrow. We define success as being able to live with your fixes without pain, without using catheters to be able to urinate, without chronic inflammation , without chronic infections and without developing autoimmune and systemic diseases post mesh implantation. I repeat on behalf of thousands of women, your definition of success in using synthetic transvaginal mesh is too narrow.

Researching the history of medical mesh being considered for transvaginal placement we found out many warnings that using synthetic mesh to shore up sagging organs and assisting urethras to control urine flow was to be considered experimental in these applications . However the word experimental was dropped from warnings almost immediately as many health insurance plans would not pay for experimental procedures and implant materials. And rightly so, that they should not pay for implant materials placed in bodies when no long term studies were done to prove benefits outweighed risk.

We ask you , what were you thinking when placing materials into women when you had no definitive tests to see what women would have body types compatible with mesh implants designed to be permanent fixtures inside them? The problem is compounded, when nobody seems to have had a contingency plan on how to remove a transvaginal mesh when FBR does not abate in a normal healing time, when in fact the FBR grows stronger and causes degradation of the implant and when left too long initiates confusion in the immune system of the patient. We believe you embraced this new invention of using synthetic mesh in vaginal repairs , that was already causing pain in hernia patients, as a gold standard of care before it was proven to be safe and before proving who it was safe to be implanted into. We believe you initially fell for some slick marketing by mesh manufacturers taking short cuts at patient expense in their race to be first on the market. We also believe that conflict of interest plays a big part in promoting products for use. How many doctors promoting mesh at conferences are receiving gifts and perks from manufacturers?

It appears your profession has for the most part been content to focus on the 70% of the women you appear to have had success with when using synthetic mesh implant materials. Being specialists you most likely don’t see these women after their 6 week check up. You do not have your finger on their pulses so to speak. There is a disconnect between specialist and primary care givers . Who is responsible to watch for symptoms of the often silent chronic FBR progression as the woman with the hypersensitive immune system starts being chronically fatigued, curiously anemic, and prone to frequent bladder infections and irritable “this and that” diagnoses?

When no one is looking for the fire, they usually ignore the smoke. Too late do doctors recognize the chronic FBR until the extrusions become visible. Some doctors are content to trim extruding mesh and tuck it back up inside of a body that is trying to push it out. Shame on you, for mesh pain that does not show as an extrusion, from our painful experience means mesh intact, or shedding broken fragments, is usually eroding into urethras , bladders and colons. This is torture plain and simple. It is a never ending crippling pain barely controlled by Oxycodone or Morphine.

Do you have any idea of how many women in desperation go to emergency departments for pain relief and then get treated like drug seeking addicts? Do you know how many women have families doing suicide watch over them? Do you know how many women have been advised to have physical therapy, manipulation of their pelvic floors while mesh is literally sawing away at their insides? The answer is no because there is no mandatory reporting in place. Adverse events are under reported. Be honest . It is difficult for some doctors to report problems for fear of “doctor error” scrutiny.

It is a maze for patients to negotiate to make adverse event reports. We have been intimidated by yourselves and the medical system. We have been embarrassed by the nature of our injuries and complaints to your benefit, as many suffer in silence. As our numbers grow in our patient self support groups the silence is fading away and we advocate for each other to change our status from victim to survivor. We grieve with each other as we hold each other in our hearts while sisters with mesh die; Cause of death toxic shock, sepsis; source of toxic shock and sepsis…mesh , not reported.

Two years ago most of your patients with adverse reactions to synthetic mesh would have been willing to place all the blame on the mesh manufacturers for failing to disclose all they knew about what could go wrong with their products. That was then. But now with the advances in social media and the ability of women with basic computer skills to research what you knew when and how much you knew there is a growing anger.

We feel like you still indiscriminately place synthetic mesh into women. Your reluctance to protect us by having synthetic mesh reclassified as a level 3 implant is an insult added to injury. Your delays and dodges to avoid compulsory reporting of all adverse problems with all permanent implant devices is like trying to hide behind ignorance of the true rate and breadth of complications. We call ourselves victims of transvaginal mesh and we are uniting between national borders, ethnic diversity, social and economic class. You have messed with the mothers of the world.

You have been vindictive to the surgeons who are the sober second thoughts and voices of dissent regarding the safety of synthetic medical mesh.. You are turning those questioners and nay sayers of mesh into heroes in our eyes. Those surgeons will be offered our growing support.

The medical community has shown it does not manage the complications related to synthetic mesh in a timely manner to prevent the escalation of injury and systemic response, systemic response is that Pandora’s box you have not researched for obvious reasons , to protect your profession. Silence is no longer protecting the medical community. Failure to address the significant number of women harmed by medical mesh injury is fueling an outrage that is soon to be directed not only at mesh manufacturers but those who enable an intolerable apathy and denial of short comings that marginalize women’s health care in countries, countries like Canada and the USA that frown upon female circumcision being performed on young girls in less enlightened societies. Yet these doctors and surgeons in North America perform surgical interventions that when things go wrong with biocompatibility, cause equally mutilating medical injuries that basically have equally catastrophic results.

We ask you to mandate compulsory reporting of all mesh related complications.

We ask you to support reclassifying all permanent medical implant devices and materials to an FDA level 3 status.

We ask you to start initiatives to develop a definitive test to identify which patients will not benefit from mesh implants because of hypersensitivity.

We ask you to listen to us as equals because of our own knowledge of how our bodies feel, and because we have first hand experience by the thousands of what can go wrong with synthetic mesh implant materials. No more condescension. Let us work together . Study what happened to us so that it does not get repeated. Open not only your minds and eyes but your hearts. The injuries we have sustained strike at the core of our feminine identities.

Thank you for having the courage to read and listen to this letter. It is not easy to take criticism, but it is harder yet to live with the injuries that are life altering and life threatening caused by those in helping professions where the mandate should be firstly do no harm.

Yours sincerely, from transvaginal mesh victims and survivors world wide.

Nonie Wideman, Canada, TVT Secur removed 2011

15 Comments

  1. kristine says:

    Well said. Thank you.

  2. msm says:

    Your words of experience and wisdom demonstrate indisputable truth and determination. Thank you!

  3. Pat says:

    Thank you

  4. Kitty says:

    I thought my Dr that removed the SUI sling this past year understood what was going on with me–but I realized yesterday that she saw me as an old demented fool with Arthritic pain. Arthritic Pelvic Pain?. I feel very very hopeless about my situation., I still have the POP mesh in me. She said its good. She said she will check my voiding diary and perhaps give me shot of Botox. msm—–you suggested I get away from her–but I think I will go one more time and see what she has to say about the voiding diary. I am still retaining some urine.

  5. pam says:

    A doctor most recently, , I knew he was not going to help me, he did mesh, I LOOKED AT HIM , AFTER HE CAME IN THE ROOM, HIS NURSE HAD A MOST DEFINITE ATTITUDE WITH ME. i said ” I AM GOING TO BE TRUTHFUL WITH YOU. i WANT MESH BANNED IN THE UNITED STATES OF AMERICA. DO YOU DO MESH, HE SAID YES. NEED i SAY MORE?

    IT WOULD , take someone so evil, knowing that people during hitler’s time, that was lying to people saying they were being sent to work farms and sending them to death camps. to not speak out and warn people.How can anyone stay silent????? KNOWING WHAT i have suffered and other women, for years now, I CANNOT STAY SILENT, and anyone that asks , why the frown on my face or asks what is wrong I TELL THEM MESH, AND i TELL THEM TO NEVER HAVE THE IMPLANT OF MESH, INFECTIONS, PAIN, NEVER ENDING, AND IT DOES NOT WORK AT ALL FOR BLADDER LEAKAGE. WOMEN HAVE DIED FROM MESH. i also tell them their are safer ways, using their own body parts i have heard about to tack the bladder up, IT SEEMS MY BODY FIGHTS AGAINST WHAT THE MESH IS MADE OF UNNATURAL.

    i COULD NOT LIVE WITH MY CONSCIOUS KNOWING i DID NOT SPEAK OUT AGAINST IT, AND WARN PEOPLE, i am not like those that lied to me, . Your body gets weaker and deterioates . Mine is going on 6 years now, I WISH WE COULD HEAR FROM WOMEN TO KNOW DOES ANYTHING CHANGE? OR DO YOU JUST GET WORSE? WHAT’S NEXT? I don’t know because doctors have not talked and been truthful, except to say, mine cannot be removed. nothing about where it has moved , except it is still protruding out, after trim surgery. WHY? won’t they give more details, ?

    • Kitty says:

      Pam you are so right–but we need to do this as a large group to be effective. I havent been able to see how many people signed regulation.gov==but I am so afraid this could end our fight if wer dont get this passed.

    • Kitty says:

      Also Pam—-I just read on another post here that removal in some instances could lead to death from bleed out.

      There are quite a few RNs that have had the “Gold Standard” surgery. WHY or WHY in hell diud we go like lambs to the slaughter. We should have known better. We treated our patients with such kindness and love and worked with wonderful Doctors and the Ba—-ds from AUGS turned on us. ROT in Hell

    • Carly says:

      Pam- your can be removed you just need to find the right DR. And as warning people that doesn’t matter because my Dr put the Mesh in me and did not even tell me….I found out 10 months later from a different gyn…some of these DR are getting kick backs from the manufacturer so they just put it in without you knowing. I did not even go in for surgery for gyn and he still put the Mesh in me with out me knowing. THIS IS SO SAD!!!

  6. Liz says:

    could someone please tell me what year the mesh was first used .

    • Jane Akre says:

      Used how… for hernias in the 70s…. for pelvic region in the late 90s – same polypropylene mesh BTW-

  7. Leslie Bendt says:

    My best suggestion is to find a board-certified urogynecologist who will conduct a urodynamic study to identify with certainty and data, the causes of incontinence. There are many causes for this condition.

    I had my first sling placed without any studies, and it was a miserable failure. Years later, I opted for mesh, and had a very positive outcome, with only one minor issue. The arm of the mesh was tugging at a ligament. So, we fixed that and for now, years later, I have been very happy with the results.

    As difficult as mesh complications can be, I think it is important to keep in mind the women who have had successful outcomes.

    • Jane Akre says:

      You know what’s interesting Leslie… we never hear from the women with successful outcomes… they are welcome to comment. I do worry abut the ongoing foreign body response, even if microscopic, not to make them worry unnecessarily. That is the bottom line- we just don’t know enough to be experimenting with this material permanently implanted in the body in my opinion.

  8. DEBORAH says:

    I want to know,.How many “Bellwether’s does it take?????? This has been going on for friggin years!!!!!!!

    What are , or, who, are they waiting on,

    I now have three long, and as sharp as needles, of the tvt sticking outside of my vaginal wall, and now outside the front of my vagina as well.

    Doc wants to cover it up with premarin cream for the rest of my life,”,”

    What more does tje Judge need? A few deaths? Already have been hasn’t there?

  9. Dottie says:

    Dr raz recommends the sonogram to detect mesh. My question is if you have had both hips replaced,do artifacts from the prothesis kept from getting a good picture of the mesh?

  10. Sue m says:

    Well said! I didn’t know about the regulation.gov, and I couldn’t find it. I will suggest that everyone go on to the FDA website and file a complaint about the mesh product they had inserted. It is an easy thing to do, and I know the doctors don’t report it unless there is a death related to the product; even then that is doubtful. Maybe if more file complaints then the FDA will see how dangerous the polypropylene mesh is.

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