Mesh & A River Of Tears

This past week has been exceptionally difficult.  As usual these days,  ten to twelve women a week make contact with me to try to find medical help to remove the mesh form their bodies.  The contacts that thrill me the most is the woman who finds me BEFORE she has this surgery.  This past week it happened again.  This is what keeping up this blog and learning as much as possible about medical mesh is worth all the time and effort that I put into it.  It is usually the woman who before she jumps into surgery as instructed by her doctor, wants to know more what can happen to her.  I was the same way two years ago for me, but other than warnings about the ‘old mesh that had been removed from the market’, and now all was supposedly well.  Sadly women who had this so called ‘old’ mesh, are still coming forward with terrible symptoms, five to seven years after the fact and they never had a clue any more than the women like me who have the so called ‘good’ mesh.  Sadly too late I have learned that none of it is good.

What made my week so bad was the realization that more and more young women are coming forward, their lives ruined, and their family life in jeopardy.  It is bad enough when women in their early thirties are struggling with constant pain, and cannot work or play with their children.  Often their marriages are on the down hill or already gone.  Their young husband’s have no patience with a wife who cannot live a normal life which includes normal wifely duties, such as sex.  Yes, with mesh in your body, there is no way you can have sex any more, unless you struggle through severe pain to try to keep your relationship.  That’s why I am here writing this all down, because the medical world ignores what is happening to women and still keep putting in the slings and hernia mesh with no thought to the catastrophe they are leaving families, both young and old to deal with.

This past week two women made me go into a dark helpless phase.  One was twenty-one when mesh was put in her body.  The other is only thirty-one now and has been suffering for some time, only to be told it was everything else, except the mesh in her body.  Women in terrible pain, both with two very young children.  They aren’t the first in this situation to make me feel helpless and they won’t be the last.  I get angry.  Angry that very young women who should be concentrating on raising their young families, live in pain like this.  Money is hard for normal young families.  Throw this devastating medical injury into the picture when it was never about life and death, then my blood boils.  How can these mesh manufacturers sleep at night.  How can doctors be such puppets and keep doing this to women even though they know this is happening.  The answer is of course is, it’s all about money.  They don’t care about people.

It isn’t just the painful medical catastrophe’s that are left for couples, their children and other family members to sink into despair over.  Insurance or not, medical bills pile up from multiple surgeries, both removal and reconstruction.  Often the roof over these families heads are in jeopardy or gone.  They are the new poor!  The devastated, saddened and totally disillusioned families around this country, let alone all the others around the rest of the world.  No, it isn’t just happening in America.

When I read their stories or listen to these women over the phone, who just want to talk to someone who knows their pain, my heart goes out.  I hurt inside like you would not believe.  I wish for a large lottery win to set up some kind of funding system to help them through.  That won’t happen of course because my own situation is always teetering on where the next much needed money comes from, so even throwing one dollar away on a lottery ticket is a giant waste for me.  I too have to prepare for mesh removal later this year.  Even though I will at last be on Medicare at long last, it will not cover travel expenses, hotels and more.  You can’t do this alone.  You have to have someone accompany you.  More money.  More breaks in the people’s lives who give their time to care for you.

So if you find this blog because you are thinking about having bladder sling or hernia surgery, look for alternatives.  Believe no one.  If you are seeking a doctor who is competent enough to remove your mesh, send me an email.  I’ll do what I can to help you.  Thank you for reading my blog.

10 Comments

  1. Kathleen

    Old mesh, New mesh, synthetic surgical (polypropelene) mesh is horrible. It feels like sandpaper in your body and begins a torment of problems. Nerve injury, muscle injury, migration, erosion, causing incontinence in some cases and just overall pain, worse than you can imagine as it never goes away no matter how much medication you take. I was in a constant state of pain and torture and I was losing the ability to walk. Things changed drastically upon removal. Removal is brutal. You do not want to try this and see if it works as it messes you up as they are not supposed to be removed. This is not a “one size fits all” and I know only 2 people so far that are not having problems compared to the thousands that are. And that is not to say that they will have problems later like most do. All I know is I was “normal” with the mesh out. Mesh takes away your normal and screws with your life in all the ways this blog describes! Many Doctors will tell you this is wonderful and no big deal. They are wrong. Not intentionally but due to lack of education. They are human afterall and this is a product that has way too many controversies. Most are not aware. Don’t be like us and learn the hard way. If you have not had it put in contact us and we can refer you to a Doctor who can fix you using your own tissues if wearing a pad does not suffice or you have prolapse/cystocele pain. He is wonderful and caring. If you have mesh and you need it out, he is excellent at that too.

    Reply
  2. lavalinda

    Thanks Kathleen for telling your story. The only thing I feel differently about is that uneducated doctors, is not the only problem. My doctor is educated and she is still doing this and so are many more. We HAVE to listen to the voices in our heads when we are rushed about surgeries. Don’t take an appointment because it is offered quickly. Say you want to wait and think about this. Research, research, research and then ask questions. None of this is life or death. Rectoceles, and all prolapses will not kill you. This surgery has killed women. Check out the FDA warning.

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  3. Kathleen

    YES!!!! Educate yourself so you can stand up to the Doctors! That is the key. If I would have not taken their “word for it” and got 2nd and 3rd opinions I would not have gotten into this mess. You truly have to be your own advocate!

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  4. Carol

    I had the mesh implanted 5 years ago and have had 2 more surgeries removing pieces of the mesh and sutures in my vagina. My last surgery was June 29th 2011 and after that the doctor informed me that the mesh is faulty. Prior to this I was told it was all in my head. Being my own advocate I kept after the doctors until I found one who would listen.
    Hope: In January I met Dr. Raz and he examined me and told me that I will continue to have infection in my body until this mesh is removed. I am going March 21st to have the cystoscopy done and an ultra-sound done on my bladder. I am very scared to have this done and Kathleen, when I read that the removal is brutal I was hoping you could share with me your experience. Please let me know how I can contact you. God Bless us All

    Reply
  5. Kathleen

    Carol, I emailed you and I hope we talk soon. Don’t lose hope!

    Reply
  6. Linda Romero

    ok SO i RECIEVED AN E MAIL FROM lINDA. tHANK YOU. i WAS GOING TO GO TO rOCHESTER BUT BY INSURANCE WILL COVER rAZ. i WOULD LIKE MORE INFO ON THE TESTS and removal recovery?? Does he do it robotically? I will call tommorrow to schedule. I am so ready to be done with this. I also am curious how the trip is going home ? I live in NM. How long is an average stay?

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  7. lavalinda

    Yes, the ladies who help me, try to email if they know how to help in any way. I will be going to Raz for consultation June 5th, and then after examination a date will be set for tests and surgery at the same time. I will fly from Texas and then will fly back. I know many women who have flown home after a few days. Most women stay one night in hospital if there is only one sling. Linda went home that day because she lives close enough. If you have various other mesh pieces or it is stuck to bone or spine, you will stay a few days. One of my other ladies stayed five because hers was stuck to her spine and was a more difficult removal. Raz is amazing, he removed it all. No robot, just him. He is that skilled.

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  8. Patricia Lucas

    I live in Aiken, SC. which is between Augusta, Ga and Columbia, SC. Do you know of any doctors in these two cities that can do the removal of the sling. and after they remove it, then what are my options?

    Reply
    1. lavalinda

      I truly wish I did but I don’t. I do know of women who are flying out to UCLA to have their mesh removed, because they did the research and could not find anyone who could remove it all. Others were dealing with partial removals and continuous pain. I wish I could give you the answer you would like but I have to tell you the truth so that you are aware and are not further injured.
      I am going to send you an email with links to tell you exactly what I did through my mesh removal journey. I am mesh free since Oct 2012.

      Reply
      1. Angels123

        Patricia…I agree with Linda. I had removal surgery in January at UCLA and it was worth every penny we had to spend to get there several times and stay after surgery. Do yourself a huge favor and quit going round and round with doctors who truly can’t help you completely. I had a partial removal surgery a couple of years ago and it was a horrible surgery because the could get very little out and it aggravated my pain tremendously. Just do something so great for yourself and find a way to UCLA. They are doing so many of these now that they really are the experts in these removals…and don’t you only want an expert doing this kind of surgery?? You are in this position because other doctors were ignorant to the damages and/or not the experts to fix your problem that you needed. Save yourself from more pain and heartache…once you get to UCLA you will understand why so many of us speak so highly of their team there.

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