Mesh & Hysterectomy Hell

For the past few weeks I have tried to be normal. Tried to forget the world of mesh hell and work on my own life. I do this from time to time, because I badly want to put hands over my ears and not hear the terrible things that are happening to women all around the world. All because of a product called MESH! But in the past couple of days I realized I couldn’t shut my eyes because it seems the world doesn’t want me to.

Then I read this comment left on my blog and realize just how many women do not understand what we are up against.

“I am scheduled to have SUI sling next week. A urologist is the surgeon. Was your surgery done by a urologist? My urologist said that untrained doctors were performing the surgery and that is why there are so many problems. None of the posts here say who performed their surgery, and was it due to untrained surgeon for the procedure. I know of several people who have had it done and they are very happy and have not had any problems. I am so sad for all the women who have had such horrible experiences, and surely don’t want to be one of them.”

I do not know where this woman lives or who her surgeon is but I just had a conversation again with Dr. Veronikis the other night and he said that if a urologist does not understand the complex body of a woman, then she is at risk. So first, make sure your urologist patient’s are women and he/she does surgery on WOMEN every day. But even then you should understand that putting in a mesh sling is a blind procedure and it is a kit. These kits are sold to any doctor who decides they will use them and they do not train in hospitals on a dummy. They train on live women and there is no school to learn how to put them in. She should also know that there are two procedures, TVT and TVT-O. Both have their draw backs and although some doctors such as the one I used, think TVT has no problems, then she should come and spend a day with me. Because I had a TVT and the ability to take a simple walk like most normal people has been lost from my life.

She could be lucky of course. She may not have immediate complications like I and many women have and they are screaming for help. I just read this comment this morning.

“I had a sling put in 5 months ago and seeing the doc who put this in tomorrow. I’m peeing without warning almost daily and feels like I have period cramping all the time but don’t have as uterus, tubes or cervix anymore. If my doc says everything’s fine tomorrow who else can I see to remove this thing? Oh and I have a foul smell that has been getting worse for 4 weeks now. I’m really scared.”

These are just a couple of the hundreds of comments left here on my blog by brave women who are speaking out hoping to find someone who will give them their life back.

But I know far more than you will ever read here. A daughter flew to be beside her mother this week, while they move her to a hospice. The woman had suffered for years in agonizing pain from mesh and two weeks before a planned trip for mesh removal she was taken ill and rushed to a local hospital where they performed a colostomy. I have seen photos of this woman lying in her hospital bed which I cannot share, nor want to. No one should end up like this. She is now wasting away and the chances of her survival are slim. She is not the first one that this has happened to. So if your doctor believes like many that “a little bit of mesh won’t hurt anyone” guess what? They are keeping their eyes closed for a reason.

This blog is about putting it out there to give women informed choices, not being told it is a simple surgery and then you can move on. Many don’t. The last time I checked there have been over 50.000 lawsuits filed so far and the count is rising. Are we all wrong?

Regardless of the manufacturer. Regardless of new names that are popping up to confuse you, such as bio mesh. Regardless of any TV advert you have seen, you as a woman need to know the truth. We are not all crazy. We are not a FEW women who have gone over the edge with a conspiracy to stop mesh from being manufactured. What we are, are women who live in hell because of these products. Normal women just like you. We had lives. We have families. All was running along as normal until the day mesh was placed into our bodies.

Today this blog is for the woman who knows she has a female issue and she either has been to her doctor, or is about to, to find out what it is and what to do to get rid of a problem that she feels interferes with her life. I am writing to you because I know what can happen to you and how your wonderful life can go downhill in an instant. If you do not believe me go to the following blog and spend an evening reading all the comments left by once healthy, happy women. I did not write them, they did.

Many women do not share with their family and friends about their ‘female issues’. They do not want anyone to know their personal business, nor anything they feels is much too personal. I know this because hundreds have told me so. They feel this information should only be shared between them and their doctor. I completely understand how they feel. We all felt that way too. Until we were stopped dead in our tracks and were living in absolute agony with nowhere to turn and our doctors made out our issues were all in our heads. My ignorance is how this blog came about. I do not want you to be ignorant like I was and find yourself in a mesh hell that you do not know how to get out of. So if you are thinking “I know someone who had this surgery and they look fine”, please go to them and talk to them. Ask direct questions. You see she may look fine, but she may be worried about issues she does not want to share, even with her best friend.

First let me tell you that I did not need a hysterectomy so it does not always happen because of this very female issue, I went to a doctor for symptoms that turned out to be a rectocele. I had no clue what it was and when I found it during a shower, I was afraid. I really didn’t know much about the female side of my body. I had never had abnormal periods. I went through menopause without awful side effects that I had read about for other women. I was active, building my house with my daughter every day, doing things I had always done. I like to work. I was happy with my new chosen life after my husband had died. I liked keeping busy so that I did not have to think I was a widow. But mesh changed everything in my life. Do not let that happen to you.

I just saw a photo of a group of women who got together to try to get worldwide attention to this issue. They are in the U.K. The group was not large because many mesh injured women cannot travel and stay home because of their injuries. The one thing that popped out of the photo was all the walking sticks and a wheelchair in the photo. I asked the woman who took it was this from mesh injuries and she said YES! A young, once vibrant young woman was sitting in the wheelchair and I am told she has 4 children. So if you want to go forward with a bladder sling, then do it with your mind open. IT COULD HAPPEN TO YOU!

Another thing that happened this week is that I heard from a young woman who has had mesh removal at UCLA and I met her while I was out there myself. Like many of us she had hoped her severe pain would go away once the mesh was gone. Sadly she has just been diagnosed with pudendal nerve damage. This woman is young with a young family. She told me she is not sure how on earth she can live with severe nerve pain the rest of her life. I had nothing to offer her to help because nerve pain can be forever. Mine is femoral nerve damage but pudendal nerve damage means you cannot just sit down because it is like having someone do an extreme electric shock to your system. There are few options to help with this and none are good. I felt very sad the rest of the day after she told me and that too is why I am writing this blog. I do not want another young woman to wind up like her. Please, please understand that when a sling is put into your body it is right where the most complex nerves and muscles are located. Even the most skilled surgeon can catch into one with the large needle used to hook the mesh into your body. Don’t believe me? Check this out.

http://www.tvt-messed-up-mesh.org.uk/tvt-tvto-tot-medical-devices.html

Don’t believe that these have been taken off the market because they have not.

So do your homework before you agree to this surgery. Needing a hysterectomy does not mean you are dying. You have time to devote to learning more. In a few days I hope to bring you a new blog with many questions answered about this by a really good surgeon, so stay tuned. I am not giving up until YOU know ALL the facts.

Update.  For new information click here.  http://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/

20 Comments

  1. Nancy Mikitka

    Once again, Linda, thank you, for your excellent post. It pains me beyond belief to hear women still walking blindly down the road toward mesh implantation. 10 years ago, when I had mesh implanted, there was virtually nothing I could find on mesh aside from the mesh ads when searching the internet. I tried to do my due diligence to check into mesh and potential complications…there simply wasn’t anything posted 10 years ago. Today, a woman has no excuse, nbecause there are posts like yours and FaceBook sites warning on the dangers of mesh. I can only pray women will not go blindly into having the mesh implantation without searching to read what they could potentially be facing for the rest of their lives…and then choosing a different approach.

    Reply
  2. lavalinda

    Yes Nancy. I am constantly astounded that women walk into this, but then again we are plagued with all the ads on TV and I think most women think it isn’t that serious or they just do not want to face it. It will be 4 years ago next March since it was put into me and I was never told what it was and even then no information was on the Internet. If only women could see BEFORE having it done and feel the devastation of these products. Not afterwards.

    Reply
  3. Barbara Vance

    Linda~Thank you again for bringing the truth to light.
    It hurts me as a mesh victim to see so many suffer. I
    have been so very blessed that my mesh removal with
    Dr. Raz was a success. I’m now trying to find the emotional
    strength to get ready for my next surgery. Your blog has helped
    me and so many others in ways I can’t explain. I only know
    without finding it, I would be lost. Blessings~

    Reply
  4. lavalinda

    I know how much emotional strength it takes Barb but it takes time. These surgeries take a great deal out of us and we all suffer from PTSD.

    Reply
  5. Lisa Pashenee

    Everything you said Linda is so true. 50,000 lawsuits are not rare occurances! Now there are fda warnings out there. In 2004, when my mesh was put in, there were no warnings. I had 13 bladder infections in 9 months and I almost died. My body was having a foreign body response to the mesh. In Aug. 2012, Larissa Rodriguez at ucla saved my life and removed my mesh. I am LUCKY to have no ill effects and to be completely healed, thanks to Dr. Rodriguez’ skill. Many women have gone forward with mesh, knowing there are issues, and are crying the day after surgery in pain, unable to pee, and other complications. If I had an inkling when it was put in me, that any of this was possible, I would have said NO! Mesh is meant to be permanent and not come out. That is what the doctors were told, and they don’t know how to take it out. Thank goodness for ucla, who has done hundreds of these surgeries, and has a very high success rate. That rate goes down though, when women have had multiple partial removals, where only a piece is clipped out. Then the mesh frays and migrates, and the removal process is further complicated. Also, some of the complications from previous removals might not be able to be reversed, i.e. Nerve damage

    Reply
    1. lavalinda

      Thank you Lisa for adding more truth to what has happened to so many women. We can’t change things for every woman but we are determined that if they go through with it, it will be an informed choice.

      Reply
  6. Tammy

    Please, please do not get this Mesh done. I had a surgery this morning to see where the blood in my urine was coming from and not to my surprise, the mesh has cut through my bladder. This is not my only complication from mesh. It’s just another complication in this mesh hell I call life.

    Reply
    1. lavalinda

      Thank you Tammy for adding more insight to the dangers of mesh. It is not one sided.

      Reply
  7. Joleen Chambers

    This is why we must all demand independent patient outcome data on every implanted medical device from our government. Doctors are only legally mandated to report fatalities to the FDA. The FDA regulation of implanted medical devices is lax. If women knew that a failed device placed her at risk for her job, family and home because of gender discriminatory tort reform and entitlements to the medical device industry, she would refuse deceptive ‘informed consent’ documents. Prevention of harm is essential and “First, do no harm” is the standard for ethical doctors. Do not assume that your doctor is ethical. Trust, but verify!

    Reply
    1. lavalinda

      Yes Joleen. Everything in your life can disappear in a few hours. Women may think they can join a lawsuit for compensation but they do not know how hard it is, how long it takes and how little there will be at the end of it. We all fought with a lawsuit to say “No more” not because of gain. We do not want others living the way we do. It will take many years and everything can be gone way before they are settled. The risk is just not worth it.

      Reply
  8. nadine

    Hello Ladies. It has been a long time since I had internet and have been able to get on here. Life this year has been getting harder and harder for me with more and more complications. This blog entery scares me for that women to actually want to get mesh put inside her. I plead with you to PLEASE not do it to yourself. We are not making this stuff up. There are so many of us that suffer and all though each of us has unique side effects we all live in mesh hell and have simualar pain and complications. I can no longer pee at all because as soon as the mesh was placed it caused an obstruction in my urithra, which when I went home 2 days after the surgery without a cathitor and couldn’t pee, caused permanant damage to my bladder causing the nerves that send signals to my brain telling me when my bladder is full or empty to no longer work and making my bladder no longer able to squeeze out urine. That was only the first strike in many many more. The complications for me are endless from permanat nerve damages of both major nerves down there that has caused me to now have mixed neuropothy all throughout my body, to major kiddney, liver, and gastrointistinal issues. The fact is that my doctor was informed and preformes surgeries twice a week every week and is so called one of the best doctors in Richmond Virginia, and he still placed the mesh inside me caused the obstruction and damage toi my bladder and prudendal and obtuitory nerves. I ended up being ignorant because my mother had a simular problem and had a sling placed before I had mine done claiming not to have any complications by the same doctor and she praised him and how great a doctor he was. I went to him and he never informed me of any complications or warnings by the FDA. He endedx up trying to fix his mistakes but instead caused me further damage by going in a second time and cutting me open in the same place the same way and cutting the sling in half claiming this would loosin the pressure on my urithra and allow me to pee again. When that didn’t work, he dicided to do a 3rd surgery and try to remove the sling. I was still holding on to my ignorance even though by that point I knew of the warnings and had allready experienced a lot of infections and side effects including my body not wantting the mesh inside me but growing into it anyway. This doctor and because, by this point I was so afraid, cut me right above the urithra and utiras straight back to the pubic bone so he could look down in hopes of seeing the entire mesh and then goingback to where he had cut me down below the previous two times and opened me back up again in the same place and grabbed the tiny piece of mesh he found on the left side attached to my bone and yanked it out then did the same on the right side but left 4 to 6 cm of mesh inside me because he could not find it or see it. I still have the mesh floatting around inside my utterious and when I cathitorize I can feel a piece that has cut through the wall and is sticking in there. I still have infections in the scar that is ontop and I get tons of infections not only in my bladder and kiddneys but in my intestines and rectum including a struggle with CDiff for the last 6 months. I have been on so many antibiotics due to infections that I am imune to most of them now and due to all the diffrent infections all at the same time my liver and stomache no longer function corectly. I had all 3 surgeries in 5 weeks and now have herniatted disks in my back, permanant prudendal and obtuitory nerve damage, because of that nerve damage I also have just found out I have mixed neuropathy throughout my entire body which is nerve damage everywhere. I was 32 when I had the surgery and now I am 33. My life will never be the same and I say all this to inform whoever the women is or any women thinking a mesh sling is ok and that the doctor claims its the prolapse mesh that’s bad not the sling mesh, not to get either or any mesh put in you. Don’t give up your life so some doctor can play the game operation on you like the childrens game and do blind surgery with a one size fits all kit of mesh like a pair of gloves or a hat. Mesh is not safe it ruines lives and it kills. I will never be able to do simple things with ease as I once did that I use to take for grantted like bending over and tying my shoes or sitting for a long time or even sleeping the whole noght without tossing and turning in pain and waking in the morning rested. Instead I am restles at ni8ght and toss and turn all night in pain waking often and in the morning finding strange bruises and marks from where I violantly tossed and turned to hard causing my self injuries while I slept. Please don’t get any mesh its horrible and there are other better alternatives.

    Reply
  9. lizzy

    Went had a revision done last february some bleeding took less than 2 inch because had mesh erosion. Called doctor told them was in pain but her assistant told me deal with it.i started having trouble walking the losin balance.now .more back pelvic bladder pain.doctor called told me shes not doing anymore surgery. So here I am.cant get help.cant afford to go too far out of state.plus noone wants to help.they have turned their back on the misery destroyed lives they have caused.words out there docs were pd $1200 to $1500 for each one they put in.if true blood money. OURS.

    Reply
  10. Toni

    Thought I had human sling. Turns out it was mesh 8 years ago. Constant back pain and pelvic pain have seen everyone. Only choose now is 20 shots Botox in bladder praying it works original dr nor his partner will even see me. It’s so frustrating. Going forward with Botox jan 15 don’t see any other options went through pain management shots all year and can only assume not better because bladder spasms all the time causing back pain and pelvic pain. God bless to all trying to figure out this mess

    Reply
    1. lavalinda

      Toni, the sad part is you had to find out the way most of us found out, instead of being told what was going to be put into you. I hope you will have it removed because Botox doesn’t last forever. So many suffer this way.

      Reply
  11. terry

    I am horrified by how common complications are and how serious they become. I am just starting to learn about my complications and I am scared.

    Reply
    1. lavalinda

      Terry I understand you are very scared but I write to try to reach women before years go by and there is more permanent damage. You don’t need to take it all in in one go. No one can do that. Give yourself a few days between researching and think about something else. It is the only way I get through all this.

      Reply
  12. Dorene

    I’m about five weeks out from having a fascial sling surgery using a tendon from my thigh and done by Dr.Raz at UCLA, who has been my doctor for over 20 years. The surgeries I’ve needed due to “inherently” week tissue,have been numerous. All have been successful for the expected length of time and done by him. I had a surgery two years ago to put my bladder back into place, and it was after that surgery I became very incontinent! His explanation as to why this happened wasn’t satisfactory to me and I really think he didn’t expect the resulting incontinence.After three bulking agent procedures failing, the pubovaginal lata sling was the next step. Well, I’m still leaking! I’m about 40% improved, but because I was so bad before, that’s not saying much as I’m still limited in my activities and have to be “prepared” with pads and watching my fluid intake. Research I’ve done has been extensive. From what I can find, there is the procedure of tightening the sling. I’ve read all the pros and cons of this. I have a post-op appointment with Dr. Raz on August 27th and I’ll discuss options with him. I cannot continue to live this way as I’m basically an active person and now I’m almost a “couch potato.” Dr. Raz is supposed to be the best and I have confidence in him. He is conservative and patient and kind. That’s not always easy to deal with as a patient, however, who wants to be cured in less than several years. I am very discouraged and depressed and gaining weight for lack of activity without changing my eating habits. I’ll keep you post as to what’s next for me.

    Reply
    1. lavalinda

      Dorene fascia surgeries are difficult to predict and when Dr. Kim did mine, she told me that it was a fine line between getting it a little too tight or too loose. She also said it was better a little loose as your own tissue shrinks as time goes on. Well after mine I could not pee and she made a small cut in the center. I then self cathed for 4 months keeping records of everything I did or my own or removed by self cath. I would say to you to give it much more time and see how it goes. We all want to go back to life as normal but these surgeries are not ‘one and done’. I hope you will have success as time goes on. I understand your concern.

      Reply
  13. Joy

    Ive had hysterectomy and bladder mesh also. Had mesh removed, horrible scar tissue removed. Still fight with pain everyday. Doctors say there is nothing else wrong. I feel like scar tissue is back. Also at times if I move the wrong way, I get a pain so bad on my right side it feels like someone os sqeezing something in there and I have to stop moving and wait for it to settle back down. You can practicly feel it if I put my hand over it. Bladder is another problem. Feels like I cannot empty my bladder completly. So uncomfortable. I guess I had mesh erosion. Just wish I knew what is really all going on in there. Also get urinary tract infections all the time. Just wonder if other women experience these symtoms?

    Reply
    1. lavalinda

      Joy surgeries can cause painful scar tissue but there is something to take to help. http://meshangelnetwork.com/2013/11/surgeries-scar-tissue/ I do not know where you had mesh removal but many women think it is all removed when it isn’t. You should have photos and lengths of mesh removed and read your operative report.

      Reply

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