Mesh & Our Fundamental Right

To Choose!

Before you read this blog, it is not written to bash the FDA or other organization.  It is about our fundamental right to choose what is put in our body after we have been given all the facts and information.

It’s three in the morning.  Another night I cannot sleep, because of pain inflicted by an implant product known as mesh and I wonder how many women around the world are laying awake, wondering what to do about their pain.  How they are going to continue with their careers and feed themselves and their families.  How they are going to keep their partners when sex is no longer an option.  How they will raise and take care of their children.  I think about all the women who contact be begging for help because they have run out of options and no one is hearing their pleas.

What happened to our right to choose what is placed in our bodies?  To be given literature and a full explanation of what mesh is and the fact that is in an implant?

We have a government with many departments to protect us and keep us safe.  Why isn’t this one working for us?  Where is our protection from mesh manufacturers who view only the bottom line.  Money!

Yes we have an organization known as the FDA.  But who was the watchdog in this department who fell asleep and allowed products to pass through and destroy our lives.  Who now will stand up to the big guys and say that they cannot produce these products and put them in us with no accountability.  Things have to change and we women have to yell loud enough to make the changes happen.

Each of us may or may not live a full and productive life because of these products.  Why?  Because it is easy to put it in and almost impossible to remove it.  Only a hand full of surgeons in this country and the world are experienced and clever enough to do so without we die on the table.  Yes this is harsh words but it is the truth.  And yet, we are not told that this implant is permanent.

So what can you and I do to change things.  First report your mesh complications to the FDA (see info and links below).  Swamp them with our pain.  I know you are hurting so much all you want to do is make it stop.  I understand because I have had three bad days when getting off the couch has been difficult.  I know the very thought of doing anything more in any day is soul destroying for you, but you have to try.  If you don’t more women will suffer like you and me.  We have to stand up and be counted.  Not one of us can close our eyes to this vast problem.

Then what?  Tell your neighbors, your friends and strangers what has happened to your life because of a product called mesh.  A day ago I was in line waiting to pay for a few groceries, barely standing because of pain.  I didn’t drive to the store like I used to, I had to be driven there because the pain no longer allows me to drive.  I leaned on the shopping cart and wished the line would hurry up and clear.  I just wanted to get off of my feet because of pain that racked my body.  As I stood there I noticed a woman in front had a packet of Poise incontinence pads in her cart and I knew I should speak to her.  So I did!  I told her what had happened to me and that I wish all I had to worry about was buying a packet of Poise.  At first she looked surprised and then she thanked me for telling her and wished me well.  Why did I tell a stranger?  Because I NEVER want another women going through what I am going through.  I never want her to be up at night wondering why this has happened to her.  I never want her to wonder why her fundamental rights were taken away because no one explained they were putting an implant in her body.

What can you do?  You can help others by getting the word out.  First report your complications to the FDA.  If you don’t do it, no one else will.  Not your doctor.  Not lawyers.  No one but YOU. Here is a link you can go to.  If you can’t sit long enough to fill out the form, get on the phone and call them. http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm142636.htm, which includes the following information:

Reporting complications to the FDA

In order to help FDA learn more about possible problems with surgical mesh, it’s important that both physicians and patients report complications that may be associated with this product. You can report any problems to the FDA’s MedWatch Adverse Event Reporting program either online, by regular mail or by FAX.

Once you have filed a report, you will receive a letter of confirmation in the mail.  Keep it and file it just like any other medical document.

What changes do I want to see from the from the FDA?  Of course like other mesh sufferers I would love these products to be totally be removed from the market so that not one other person ever experiences what I am experiencing, but realistically it will never happen.  So I will settle for these changes.

If a woman goes to doctor for any medical problem and the surgeon decides to use mesh in her body, then a pamphlet of disclosure from the manufacturer should be produced, discussed and the woman should sign for receiving it.  The discussion should be a full disclosure of ALL side affects. That signature should be kept on record by the doctor as proof she was given the explanation.  If no signature is on record then the doctor should be reported and fined.

IF the woman still chooses to go through with an implant, then at the hospital as part of her prep, she should be questioned that she had been given it BEFORE surgery, to make sure no one slips through the cracks and the surgery done without she has a full twenty-four hours to read and mull the information over.  They call you at the house as part of a check in, the day before the surgery.  This should be asked at that time and the answer noted by the person calling.

When a woman signs the release to leave the hospital, she should be handed the make and number of the implant and told to keep it in a safe place and report any incidents of complications to the FDA.

Every mesh implant surgery should be kept on record for seven years minimum so that continuing complications can be recorded.  NOT three years as is being discussed at present.  This is because so many woman are coming forward to me with up to seven years since surgery with mesh erosion.  I would prefer a twenty year study, but of course that would be shot down by all concerned.

So what are your thoughts on this as a mesh implant sufferer?  Leave your thoughts here and remember, no one but me will see who you are.

If you need a mesh removal surgeon, please contact me.  I am here to help.

14 Comments

  1. Diane Fichter

    You know I am with you 150% on this one my friend!!! Stand together strong, tall and loud! Do not let them quiet us, we are much bigger than they when we roar! I will never give up fighting the powers that be…what has happened to us is without question the worst of human injustices’ ever for one reason, we were never given ALL THE FACTS…

    Who in their right mind would go into this surgery KNOWING what lays ahead of them…NO ONE! Full disclosure is they key..let us decide what we will allow to be put into our bodies, PRIOR to it happening, not after becasue no one wants to be accountable after…

    I am mad beyond words and I will not rest until the policies and procedures are changed.

    “Often daunted, NEVER defeated”

    Reply
    1. lavalinda

      One of the things I didn’t say was for everyone to click onto the FDA link. They have written a nice set of questions to ask a doctor, but what they do not get is that when you go to see a doctor, you put your whole trust in them. Many women who have contacted me have been seeing the same doctor for twenty or thirty years and they completely trust that their doctor is doing the best for them. They would NEVER think of going to the FDA site before surgery. After all, the person before them must know everything there is to know about a product and would tell there long time patient if there was anything to worry about. It you doubt this, then why would you go to see them in the first place? That is why doctors and mesh manufactuers cannot be allowed to police themselves. They will act in their own interest to pay the bills each month and we are the casualties of their behavior. Nothing will change unless there are rules and consequences, the same as everything else in life. People do not police themselves when it comes to crimes if there is temptation. That is what we are up against.

      Reply
  2. BETTY

    I did this- 4 times. Everytime there was a slightchange- a haircut of the mesh- a change in medication to help pain etc. They responded each time. But that darn mesh is still out there. I am grateful it is out ofme but I still have pain. Maybeitis time for #5

    Reply
  3. Kellylynn Robitaille

    I couldn’t have said it better myself.

    I remember before I had my hernia mesh put in I was thinking how is it that my body won’t reject this material. I have an understanding of some of the basics of human physiology and anatomy gained from my time in college. And a basic understanding of the inflammatory response. I thought about asking the surgeon that very question. However I didn’t,… I thought to myself the doctor knows what he is doing and this product has surely undergone FDA testing and clinical trials. I assured myself that it was just presurgery jitters and that my questions didn’t need to be asked. After all with other “female problems” I had had I had been told by doctors for 20 years there was nothing wrong with me. (we found out there was something wrong when I had a hysterectomy a few years later) Also I thought “how dare I question a doctor” who certianly has more education then I do.

    I also feel there needs to be FULL DISCLOSURE multiple times before anyone has anytype of mesh put in thier bodies. After all it is an implant just like other medical devices. As a licensed real estate agent I have disclosures of all kinds that I have to tell my clients about in relation to the purchase of a home! Why isn’t there something similar with this product?

    I had my hernia surgery in 2005 in Febuary when I had my hysterectomy in 2009 I was already having pain from mesh. I felt that there was/is scar tissue that has built up because of the mesh. I asked my OB since he was going in laproscopically to do the hysterectomy to go over to my left side and take a look at what the mesh was doing because I wanted to know. He had a very panicked look on his face, kind of like a deer caught in the headlights kind of look. I remember being puzzeled by his reaction at the time before I knew other people were having issues with thier mesh. He regained his composure and said that would just not be possible but didn’t say why it wouldn’t be possible he also quickly changed the subject. I didn’t push the subject, hindsight is always 20-20. I should have insisted he take a look and take pictures of it as well.

    Just like the selling and purchasing of a home there needs to be FULL Disclosure. I know at some point I will have to have the mesh removed its no fun feeling like there is a cheese grater in your abdomen when you go for a walk with the dog. I now need to find a doctor qualified to do it.

    Reply
    1. lavalinda

      I do know that hernia mesh is causing devastation in people as well as sling mesh. Your comment was well written and makes a lot of sense. Thank you.

      Reply
  4. Kathleen

    I could write a long story about my pain suffering and devastation of the being injured by the TVT-O polypropelene surgical mesh. It would sound like so many others even though each us have our own story. One thing I would like to have changed is that there is full disclosure. So many of us if we would have known about the earlier FDA warnings would have elected to wait and not have these “permanent” devices installed. Even when I called my particular company who made my sling they would not give me a brochure so I could truly understand what was in my body. My Doctor prior did not have one either as I requested. We should have a law that we are made aware of ALL information concerning these devices and they should not be up to the Doctor to tell us it all. Some of them just rely on the information given by the manufacturer and that is not enough. If I ever would have known about all the complications of all of the people I would have been able to prevent this from happening to me. Thank you FDA for the July 2011 warning that complications are NOT rare. But there needs to be more education and help for women and men regarding surgical mesh in so many ways. Especially a victims fund for people who cannot afford the insurance and surgery of removal and care. I really hope this suffering will end soon.

    Reply
    1. lavalinda

      Kathleen. I too asked for a brochure from my doctor time and again AFTER the surgery when I knew something was wrong. Even then I never did receive one and I searched on the Internet for many hours trying to understand what was in my body. I found it was a problem because I did not know the search words such as mesh and implant. This was because those words were never used in my presence. How can we find out what is in our body when we have never been told. Unless doctors HAVE to tell us, they never will. they believe the mesh manufacturers who say this is so rare! We are all finding each other anyway and now know it is NOT rare.

      Reply
  5. Nora

    Would you please post a list of surgeon who are experts at mesh removal. The HERS Foundation receives frequent requests from women who are suffering the devastating effects of a mesh sling.

    Thank you for what you are doing, HERS will help you get the word out.

    Please let me know if you would like to write a blog post for HERS blog about this important issue. HERS blog is very active, it would reach a lot of women.

    Nora Coffey
    President, HERS Foundation
    hersfoundation.org

    Reply
    1. lavalinda

      I cannot post a list of surgeons because there is more to it than that. Women must be aware how to go about hiring a doctor and what they need to ask. I will send you my list privately and explain my reasoning.

      Reply
  6. Eleanor

    Linda, your tireless work is helping so many women, I had my mesh implant surgery, weeks after a hysterectomy. My gyne did a full hysto without my knowing and subsequently I needed a sling procedure to fix his mistakes. And of course in the five last years since my implant I have lost my job, my health, my self respect because of the bs the Doctors continually tell you its in your head. In 2010 a uro/gyne in Halifax ns saved my life and since that time I have had 3 major surgeries to remove mesh, repair the damage the mesh left, and I now have another in 2-4 weeks to remove the remaining mesh. I have a wonderful husband who supports and advocates for me when I can’t, I am truly blessed to have such a wonderful man. Alot of ladies are not as fortunate because the dyspernia we experience because of mesh related problems. We need to get the mesh products recalled and taken of the market. We need to get the word out to other women and men to NOT implant these devices inside them. The FDA needs to do something asap, to many are suffering. Thanks LInda for your great blog and your tireless work. Eleanor

    Reply
    1. lavalinda

      Thank you Eleanor. My work came about because I couldn’t stand what is happening to all of us. I am fueled by the terrifying stories I read and hear. I turn my anger into doing something about it. Knowledge is power. Women need their power back and start asking the right questions.

      Reply
      1. Eleanor

        You know some of our stories are extremely bad, others not so bad, but in the whole scheme of things, they are our stories and each one is important to the person telling them. I truly believe if others could tell their whole stories without worrying what others think we could do some serious helping.

        Reply
  7. Mary Scott

    Can you please tell me if there is a doctor who removes bladder mesh slings in
    the state of Maryland, who knows how to remove the mesh correctly
    ? I have been having many problems with the bladder sling since 2006.

    Thank you

    Reply
    1. lavalinda

      Mary, There are few doctors in the world who can remove it all safely. This link will take you to many links so that you understand the journey it takes to remove mesh and how important it is to go to the right doctor. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply

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