Why I am Disgusted with Everything Mesh!

Mar 9th, 2012 | By | Category: Op-Ed

*Editors Note: “Betty” wrote this opinion piece. She is a woman who is represented by a lawyer who does not want her speaking up but she still wants to express herself so is doing so anonymously. Many women and men feel the same way. They want to share their experience so others don’t have to repeat it.

Here are her words:

It has been several years that I have been dealing with “complications” caused by medical mesh for SUI (stress urinary incontinence). I had the TVT-O (Tension Free Vaginal Tape- Obturator). You can read about it, but basically our government, the FDA who regulates such things as medical mesh for SUI, has indicated that this mesh is “safe” or is a standard of care, at least that’s the implication because it has not been taken off the market yet.

“There are various reports that indicate anywhere from a 1% to 15.9% rate of complications for synthetic mesh treatment for SUI. The FDA has recognized the issues with mesh for POP (pelvic organ prolapse) and has issued a warning regarding this. I would love to give you my name and the details, however I can’t.

“I can tell you that it has been several years that I have suffered, spent over $40,000 out of pocket with insurance, and lived without sex. My problem with this product is, even if the 1% report was correct (which I believe otherwise) that would mean 1/100 women would be affected. This means, most likely severe complications or death.

“The problem is once mesh is implanted into a person, it cannot be removed without great difficulty. It is not designed to come out. It is a permanent installation. I saw many physicians who denied I even had an issue. I’m screaming in pain and was being told “there is nothing wrong with you.” In fact these same physicians sent me to specialists who (as I learned later) were “pro-mesh” and also said they had no idea of what was wrong with me and that “mesh doesn’t cause pain.”

TVT-O Mesh from TVT MUMS website

“To this I answer “liar.” Anyone who believes that “erosion” is temporary or that it doesn’t cause a lot of pain hasn’t experienced it, or is in deep denial (as in a physician).

“I was told by my Dr. that she had a few patients who experienced erosion and it was no big deal, she fixed it and they went on with their lives. Either she didn’t know (because they went elsewhere for help) or she was in denial. No other explanation.

“I know many women who have experienced this and it is anything but temporary. I don’t know one woman who claims this to be temporary. I know many women who have these issues who have been accused of being “drug seekers.” To this I say shame on you!

“I know firsthand the pain, the multiple surgeries, and several plane flights with catheters. These are very painful.  I wasn’t going to write anything, but I read several reports in a urology magazine that were linked from this site. This was the last straw. I am angry, my life has been taken away from me – I have not been able to do the simplest of chores, vacuuming, grocery shopping, or cooking dinner. I have not been able to work.

“My hobbies that I once loved are past history. And I’m reading the report that say’s women with dysparenia, from Urology Today (and what is that anyway?) are more likely to have issues than those without it and I’m thinking are you crazy? We are being divided into fractions, counted in numbers as if we were a stock market commodity.

“Anywhere else, this would be a crime. I am talking about women losing their lives; severe complications (like mine). Where is manslaughter or attempted manslaughter allowed in our society? In the medical field, that’s where.

“I am sick of all the “reports. I am sick of being told my value is in being a guinea pig (ok, I wasn’t told that, but that is how I feel) so some scientist can do their studies to justify the maiming of women. One of my friends told me that Dr. Raz (of UCLA in CA) sees anywhere from 40 to 50 women a month. Multiply that by even five (assuming there are five physicians removing mesh in our country) and you have anywhere from 2,400 to 3,000 women flocking to qualified physicians per year. I think this is a very conservative estimate and it does include POP.

“Please, will someone give us a break? We are not numbers – we’re living breathing women with families. We’re workers and American citizens. The FDA is world-renowned for their conservative protection. I believe they will soon lose this title if they keep this up – so many products are getting through that are not safe and it isn’t only the mesh that is hurting people – think DePuy.

“Hopefully one day I will be able to tell the “whole story” (and there are many, many stories) but don’t bet on it, I’m sure there will be non-disclosure statements somewhere in the future. When money is the bottom line we all lose, eventually. #

 

Learn More

Ethicon TVT-O Product Brochure
http://www.tvt-messed-up-mesh.org.uk/pdfs/products-brochure.pdf

TVT Messed Up Mesh Website
http://www.tvt-messed-up-mesh.org.uk/tvt-tvto-tot-medical-devices.html

 

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2 Comments to “Why I am Disgusted with Everything Mesh!”

  1. Amy G says:

    Thanks for writing this Betty!

  2. Dee says:

    Thank you for writing this. My doctor is urging me to have a tvt-o put in when he does my hysterectomy next week. He says that the tvt-o is excluded from the recall and lawsuits… I’m now thinking that in time it will be included. I am sorry for what you are going through and I greatly appreciate you writing so I can make a more informed decision. Now, I just don’t think the possible consequences are worth the benefit of the surgery. Thank you!

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We hope you find this a helpful resource. National News Editor, Jane Akre, began MDND with the hope of providing the latest news, information and perspective from the regulatory, industry and patient point of view, something that goes under-reported in much of the coverage of medical devices. The public is just now becoming aware that many devices do not undergo the same scrutiny as prescription drugs and are instead grandfathered in under an FDA loophole that has gone largely unchanged since the 1970s. As a result, patients become the post-market clinical trial subjects, and many suffer devastating and permanent injuries.