Mesh & the Erosion of Women’s Lives

There are four mesh injured women who help me answer the cries of women around this country. There are a handful of women in many other countries who do the same for women in their world who need help and some kind of direction and comfort. We are all mesh injured and we do this because we care. We can’t give personal attention to every woman because we would never sleep. Never deal with our own pain and anguish. But we do what we can, when we can.

We know the real truth about what is happening to women and we do our best to help them. We also have to break the news to them that doctors around the world cannot remove all the mesh and the arms/anchors. We know that this news will often devastate a woman even more because she has to resolve in her mind that she can’t get help tomorrow. But we have to tell the truth because we know the truth. It hurts us when we do this and it hurts them even more.

Yesterday we were trying to help two young women, both in their thirties. We know that at such a young age, their lives could be ruined by the wrong doctor and what seems like mesh hell right now can turn into a worse hell. We hate being the bearers of bad news. We hate that women’s bodies continue to be desecrated.

One woman is thirty three and is living in her own mesh hell. Her symptoms are common but these common symptoms are extreme for MANY women around the world. I spoke to her over the phone and she sounded bright and articulate. She is afraid for her relationship and would like to have more than the one child she now has. We want her to have those children and go on to raise them and see future grandchildren.

This has happened to so many young women, still of child bearing age. One of the ladies who helps me has a medical background and she does all she can to assure and help these young women. But her shoulders are the shoulders of a severely injured mesh woman who suffers greatly herself.

The second woman was thirty-six years old when the sling was put into her. She is now only thirty nine and can barely take care of her children. I woke up early this morning with my own issues in my mind and knew I would not sleep any longer. So I opened my email and this poignant letter states how thousands of women live every day. Is it living? No! Mesh causes erosion in a woman’s body and the erosion of her life. You can now read what we read constantly.  These are real women and these are their own words.  I know many of you will recognize their pain.

“Hello my new found friends, I am thankful for the kind and quick responses from you. I am laying here in my bed feeling like, ” Ice Picks” going all down my legs and through my pelvis. My rear end kills and I feel like crying but am tired of it. I am worn out in every way possible. What makes me even more sick is to know that I may have to wait awhile to have it removed.

I am so tired of getting poked, prodded, checked and told that I am wrong and don’t know what I’m talking about. I am alarmed that so many doctors find that money is more important than a woman’s health. Why would they care? That would be biting the hand that feeds them. I am truly amazed that you care. My world is a complete change from where it was 3 1/2 years ago. I’m a completely different person who has lost every ounce of ambition and zest for life. Not only am I going through this but I am dealing with menopause from a complete hysterectomy. I seriously feel like a walking medical mishap!

It amazes me how many doctors actually do not really care about the bottom issue. It’s here’s a pill, now scoot along so I can cram another patient in. I am now on 10 different medications, most of which have horrid side effects. I’m so disappointed and saddened that my life has come to this. I sit here and literally watch my kids grow up and don’t have one ounce of ambition to get up and do anything with or for them. I hate to cook, clean or go anywhere. I think the only thing that saves me from having a hoarder home is that I am OCD about clutter. It literally is unreal how much I have lost my love for everything that means anything to me. I get irritated and moody a lot and then I feel extremely guilty for the way I treat my loved ones. It’s not right and I know that I am wrong in my actions. I can only say I am lost, not myself, and starting to become hopeless.

When I came across Linda’s blog I could not stop reading it, thus leaving me with little sleep. My question to you is this, what if Dr. Raz cannot help me, where do I go from there? Also, should I wait to hear if he emails me back before making an appointment, to see if I need to go with him or if one of his associates can perform the removal? Or just go ahead and schedule the soonest I can get in? Thanks so much for all your help.”

We don’t make choices for women. We give them the fact that we have learned by doing this every day and they must make their own choices. We don’t bully women into going out to UCLA. Not all women wait and they go to doctors near them. When they return to us, with such sadness when they realize they did not get any better and often far worse, we don’t turn them away. I answered this woman’s email first thing and this is what I wrote.

“…….., you have written what has been happening to thousands of women for years. You have also written every woman’s worse fear. What if Dr. Raz can’t help me? No he is not God. He is one man with a great deal of experience who does his best to help us when no one else can.

We all know your desperation. We read it every day and we too will try to help you through this, but we can only do so much. The rest is up to you. We know what happens with these so called revision surgeries. Not only have some of us experienced them and become worse, but we also read or hear what has happened to women around the world. Only you can make up your mind who you will go to. We know the hardships this causes women and the long wait for consult and then surgery. I waited over two years and it was hell. But all that time I read what had happened to other women when they went to different surgeons and realized my hell was far less than theirs.

Dr. Raz has stated that cutting a piece out of a sling is like letting shrapnel loose. We all know that this is the truest statement ever spoken. We know because we have lived it. Once it is loose, you can’t stop the rebounding results.

Many women get desperate and one hell leads to another and often worse hell.

We tell women to hang in every day. They often feel they will never make it through. Somehow they do and they find that strength. Your strength is your children. Somehow you have to get through this by the hour, if not by the day.

We truly care.
Love Linda”

No sooner than I finished another email came in from yet another desperate woman. This is that email.
“I am looking for a doctor to finish removing mesh that was put in me. this was not the surgery I was supposed to have. I didn’t find out till I woke up. I finally had a partial vagina mesh removal. but now I am worse. my strength in my legs are so bad I can hardly walk. my lower back abdomen groin hurt .my bladder has pressure and a fullness all more Than before. she refuses to remove the rest of the mesh. she doesn’t want to cut me open. that it would cause worse problems. my life is ruined now. I thought she was taking it all out .she did just the vagina because the mesh was eroding out. she said you should be able to have relations with your husband in 6 wks. that wasn’t the reason I wanted it out. and as for sex the pain is terrible. so that surgery is for nothing. I am trying to find a doctor who actually cares. I have to get a referral and why I need this done. I was told there was a doctor at mayo. but I don’t know. I just want my life back to be a wife be able to do things with my kids and grandkids .right now I am at the point I am going to have to use a wheelchair. isn’t there any doctor that cares anymore? They put this in you and refuse to undo their damage. Lord help us all”

This was my answer to her.
I am so sorry this has happened to you, but now it is up to me to break more bad news.  Please go to this link and you will find the only doctors who can remove it all.  http://meshangels.com/2013/02/mesh-is-a-journey I am including three of the ladies who help me and I know at least one of them will respond to you.  It will still be a wait to get the appointments but I can assure these doctors do care.  Love.  Linda

You do not know who these women are but I am using their exact words because these women speak the truth of what is happening to women all around the world. Their mesh journeys will take them down a long road of pain, anxiety and despair. It is the journey of thousands of once healthy and productive women. It is very sad……………….

You should also know that this does take a toll on us emotionally. It is hard to do this every day, when you are still dealing with your own mesh injury issues, but we do it because neither doctors, nor mesh manufacturers will and they ignore these women’s pleas.

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

24 Comments

  1. Cindy walraven

    Linda, I so relate with what these ladys are saying. In my case I still wonder why my neuropathy gets worse all the time, I believe it is my mesh slowly destroying my nerves, why I have no proof of this, It seems odd to me that when I had erosion for the first time back in may or june of 2011 that is when my neuropathy choose to raise its ugly head and became so extremely painful within just a few short months. I am one of the strange causes my erosion took two years to show up. I wish I would of know about you ladies and how you are fighting to get the word out when I first discovered my mesh problem. So my mesh was revised in 2011. So some of my pain was relieved. However my neuropathy still continued to worsen. So what seemed like a short year had gone by and yet again I had erosion. This time worse then the last. So in february of 2012 I had to have another revision. My Surgeon did inform it that she would fix what she could with my first surgery and at that time she felt that part of my pain could be a reoccurrence of my endometriosis along with the mesh. They did find endo with my first revision but she also found mesh eroding into my vaginal wall and bladder which had to be removed. So she felt with my second erosion that it could be my endo not my mesh causing problems. But once she did the second erosion surgery my was in my vaginal wall and into my bladder, She realized that the endo was not there anymore just the erosion. But during my second surgery when trying to remove the mesh she ripped a hole in my bladder and had to repair it. So now I am only 3 months out since my revision (2-3-2013) and I have erosion again into my vaginal wall again. I also believe that there is a good change it has attacked my bladder again and possibly my bowels. My surgeon is 3 hours away, so I went to a local obgyn who confirmed that I have erosion once again. So I called my surgeon and she called me back at 9:30 at night which surprised me. She listened to what I had to say and even though I was mad as hell when I was talking to her she kept her composer and listened to everything I had to say. She agreed with me that the next step is to do full removal. She was completely apologetic that I was facing surgery once again. So I now have my removal set for July 1, 2013. So while I am having all the problems for the last several years with the mesh my neuropathy has gotten to the point where it has moved and gotten even more painful. It started in my feet and has gradually moved up my legs into my arms and now my hands so now I am at a point where it effects my whole body, I have been to mayo even and they don’t even know why I have developed neuropathy . I have been poked and prodded more times then I would like, and so just like many others of us out there every time I am examined I feel as if I have just been raped because the pain is so intense when being examined some of the doctors don’t care what they are doing to you are how much they are hurting you, I grab ahold tight to the sides of the examine table and hold on like it will never end with the tears streaming down my face I ask god please when will this ever end. So many of us feel completely violated and wonder if it will ever end. I have been in pain from the mesh, neuropathy, a continuous UTI, and have not been able to have sex with my husband for 3 years. So why I am now scheduled for full removal I pray that she will be able to get it all even the anchors. My doctor feels she can remove the entire mesh and the anchors. She really is a very caring doctor and has a wonderful bedside manor and cares about her patients. I went to 5 different uro/gyn within a 200 mile radius and she is the only one that told me my mesh was eroding all the other docs told me there was either nothing wrong or that i should use estrogen creme to fix the problem. Well I guess I have rambled on enough here. Thanks Linda for that you have done. I would also Like to thank so many of you other women out there that are fighting to get the word out. I have written a small prayer I would like to pass on.

    Dear Lord,

    I am speaking with you today from the bottom of my heart. There are so many of us out there men and women that have suffered in pain from the mesh monster they have implanted in us. Please lord have mercy on all of us, to help stop the pain and suffering we are all going through. Help us to see where the light is to relieve our pain. Guide those that are suffering to the right doctor the right person that will help with there pain and will offer the compassion and understanding that we all need so desperately to help us heal. So many are suffering from the side effects this mesh has caused pain, agony, struggling relationships with our spouses, intimacy with our partners, divorce, finical hardships, loss of youth, parenthood, our children, relationships with our families. This list could go on and on but Lord I think you are getting the point here. Many of us are just trying to make it day to day. We all so need your compassion and understanding to help improve our daily lives and get back what this mesh has taken from us.

    Thank You Lord for hearing our prayers
    In his most precious name
    AMEN

    Reply
    1. lavalinda

      Cindy you too speak volumes for what many women are going through and have to endure. The reason for this blog is for women to understand that they are not alone and their feelings of violation are that of many others. Thank you for your prayer and I am sure many women will find comfort in your words. Without women leaving comments here, this blog would not seem real. Every story is the same and yet very different. Our pain, anxiety and our humiliation are all the same. When will doctors and mesh manufacturers recognize this product destroys women’s lives? I wonder this every day. Thank you Cindy for telling your story.

      Reply
    2. Angels1234

      Cindy,
      I too have had that kind of neuropathy…if you haven’t already you should seek out help from a knowledgable and caring pain doctor. They can really help with that kind of pain, but the reality is you absolutely must have the mesh removed anchors and all…make sure your surgeon will take it all this time or don’t bother having the surgery. Save your money and go to California if she isn’t going to do the job right this time. Good luck to you!

      Reply
  2. melissa byrd

    Hi. I was on your web site and it was so good to see I am not alone. I have been informed by my doctor that I have one side of my mash sling has erosion on it. I have been in terrible pain for over a month now. My doctor also thinks I have ic disease. We (my doctor) and I are going to talk Tuesday on what we need to do next. I would love to here from someone on this matter. I already have ibs and fibromyalgia. Dealing with slot of issues right now. Thanks fir your help.

    Melissa

    Reply
    1. lavalinda

      Melissa a diagnosis of IC is very common but it is the mesh that is causing it. Try taking marshmallow root to calm your bladder until you have surgery to remove it. It has worked for hundreds of us. If you know what type of mesh you have it will help you. Did you have IBS before the sling? If not it could be eroding into your colon. It has happened to many women.

      Reply
      1. Angels1234

        Melissa,

        Linda is right on both issues. If you didn’t have IBS before the mesh it is most likely the mesh causing the symptoms. The docs love the “catch all” diagnoses that are so non-specific that lots of things can fall into them. Once you have mesh you have to assume it is a problem with the mesh until proven otherwise. You must be prepared to do what it takes to get the mesh out…anchors and all. As Linda has written, the ones that really do it right are in California and those of us who have gone will attest that it is the Cadillac of doctors there compared to the hack shops around the country who call themselves doctors. Just decide whether you want the best or not. It’s really that simple. Good luck to you!

        Reply
  3. Barbara Vance

    Linda~I can so relate to everything that everyone is saying. Lets continue to raise our voices until changes are made so this doesn’t happen to our daughters or granddaughters! Linda, I know you and your help get extremely tired in body and spirit but please don’t stop doing what you’re doing. I would have never found the help I so desperately needed if it wasn’t for your blog. Blessings~

    Reply
    1. lavalinda

      I so agree Barbara.

      Reply
  4. Angela Wainot

    Help! My mesh sling is coming into my vagina, I can feel the sharp points. I have an appointment today with the doctor who put it in 4 years ago, but during my previous appointment with her she said she couldn’t remove it. It has to come out, it is making me sick. Does anyone know a doctor in Massachusetts who can remove it completely?

    Reply
    1. lavalinda

      Unless someone knows of one I don’t know of, you are in the same boat as the rest of us. We all had to fly thousands of miles to get the help we need. At least your doctor was honest and did not attempt it. You could have been damaged further is she does not have experience.

      Reply
      1. Angela Wainot

        Thank you for your quick reply. I am very scared and very upset right now. I am not very optimistic, reading other stories, and I’m trying to gather the strength to deal with this as I am by myself.

        Reply
        1. lavalinda

          There are support groups out there Angela and you don’t have to be isolated. This is the one I am on where I try to help women. https://www.facebook.com/groups/142368339207055

          Reply
  5. Terri Studevent

    To the lady that is wondering if Dr, Raz can help.

    Dear Distressed,

    I went to Dr. Raz after complaining and crying in the doctors office that put the sling in. I didn’t even need the sling, I was not having any leakage or incontinence. He convinced me that if he repaired my Rectocycle that I would then be back because it somehow supported my kinked urethra. I argued with him but he was so convincing. He used me as a guina pig, I was young and very healthy. After I had so much pain with sex I wanted to die. My husband and I always enjoyed our GREAT SEX life. He ruined that but for awhile.

    After he did one excision(the original doctor) it was somewhat better but still had the feeling of card board lining my vagina. It hurt like hell. However here is the good news. Dr. Raz is your best bet, he removed all my mesh and said thus far it still was the hardest he ever removed. I am now awaiting another surgery July 8th for him to fix my urethra, you see the mesh has entwined itself in my urethra and I had a major infection, he said for three years. He could not fix it at the time because of the infection though he tried it failed. I am incontinent now, but he said after the next surgery I will be completely fixed. I put Estrace cream in every other evening with my finger. At first I was terrified of feeling inside there, but it feels ok. My stitches are dissolved and I am healing nice. There is always a chance it won’t go well but I am staying positive that’s the best way to heal.

    So there is hope, don’t give up. Stay positive. You can get your life somewhat normal again especially if you try.

    Love your Mesh Sister

    Terri

    Reply
    1. lavalinda

      Terri we all know it is the hardest choice we make to go out there and we do it because we have no other options. I am hoping you will have great luck and all will go well for your next surgery.

      Reply
  6. Chelsea

    Hello, I am the 39 year old woman Linda is talking about. Before I had my mesh sling out in I was an active, vibrant mom. I have literally been through hell since then. I have had 6 surgeries. I now have a eroding mesh sling and an interstim bladder pacemaker. The pacemaker is a box that was surgically put in above my buttocks, it has a “remote control” that I use to adjust. After I had my sling put in I begin to experience extreme urgency/frequency, sometimes up to 20 times a day. I could not go anywhere. I was up all night using the bathroom and little came out. That is when I had the interstim put in. It has two lead wires that attach to my sacral nerve which in turn basically tells my brain to urinate. I have to have it taken out every 5 years to replace the battery. I have had E. coli, leading to 2 drains put in my body, staph infection twice, numerous tests, doctors visits, basically knocking on heavens door. I have spent thousands of dollars, had a hysterectomy and lived a living nightmare. I was scheduled for surgery on May 24 to have a partial removal I have done extensive research and know my body. This arrogant doctor had the gall to tell me that, ” you obviously havn’t done enough research” when he claimed I had a blockage in my urethra! I said, ” no I don’t, if you will check me you will see my mesh is eroding and needs to be taken out”. Sure enough he did and said, ” yep, it’s eroding and needs to come out”, DUH! At that point I chose to do some research where I came across this blog. I will tell you this, that was an answer to my prayers. I believe in God and I know that these women are angels doing his work. I now have an appointment to see Dr. Raz and get this piece of shrapnel out of me. I feel like a kid on Christmas Eve. I will never be able to repay these women for spreading the word. What are the odds of me coming across this blog after years of extensive research? My only way to repay them is to pay it forward, spread the word and help who I can. These companies that continuously sell their defective product sit back and deny the damage that this has done. I consider them no better than Hitler or Saddam, they have zero regard for life. Do not get a partial removal, don’t let your doctors talk you into it. Beg or borrow but get to UCLA, it’s time to stand up and fight. Everyone one of us who have been so battered remember you are worth fighting for.

    Reply
    1. Angels1234

      Chelsea,

      I feel the same way about Linda…she literally saved my life of that I have no doubt. I am not that much older than you and have children still home and a disabled adult daughter that I care for full time. I was so sick for the past three years that I wish I could have died at times. The docs I saw closer to home said I had no hope. That the mesh couldn’t come out and that bc the surgeon who put it in was incompetent it was in places it shouldn’t be and was too dangerous to get out…ever. This was what I lived with for almost two years before God worked a miracle for me. I found out about Dr. Raz third hand through a pelvic PT who was working on a patient who did her due diligence. I then found Lindas blog and got the confidence to make an apt. I was very skeptical that Dr Raz could help me after the verdict of the previous docs. I had removal surgery in January and I’m hear to tell you that he is your best option and is the best doctor I have ever been to. I have never had to convince him I had a problem, was treated with such kindness and compassion, and have been so impressed with the care I have received there overall. I remember the day he told me he could help me…I broke down crying and then I had that optimism come back to my life that had been snuffed out several years before. You will be in the best of hands..I promise! I hope all goes well for you. If you would ever like to talk, i am happy to share my experience with you as it seems we have a similar story. Linda can get you my contact information if you like. Good Luck!

      Reply
      1. lavalinda

        I let the other ladies know how you feel. They have been steadfast in helping me even though they still suffer with long term complications.

        Reply
    2. lavalinda

      Chelsea, we were so excited when you got the appointment with Dr. Raz yesterday. We don’t know how much he can help you after what you have been through, but removing the mesh is a huge plus factor to try. You have been through so much and your doctor should be ashamed. I doubt however he is. We are all here for you and we will follow your progress. We want you to raise your children and live a better life.

      Reply
  7. Chelsea

    I am going in with a positive attitude, knowing that at this point I will never be 100% better. Mostly due to all the incompetent doctors that have botched several surgeries. I realize that he is not God, but he may be one of the closest things to him when taking out these mesh devices. Kudos to you ladies who have helped me and kudos to him. What comes around goes around and I believe that with all my heart. He emailed me back and it was so kind and caring. I’m thrilled to have finally found someone, a doctor, who actually cares. I have about 2 1/2 months left. My muscles are starting to ache which leads me to believe it is getting worse. There is no comfortable position to lie down anymore. The nausea and everything else is unbearable, but I will keep plugging away to get to UCLA!

    Reply
    1. lavalinda

      It is often a huge fight to get insurance companies to allow women to go out to UCLA but those who battle will win. We should not have to go through all this to get help but it seems no one is taken mesh complications seriously. Your resolve to begin this fight is remarkable considering all you have gone through, but you still have some fight left in you and that is what will allow you to live once again. We hear you and so do all the women who follow this blog. Chelsea you will be an inspiration for others who need to keep fighting.

      Reply
    2. Angels1234

      Chelsea,
      You will find it in you to make it. You’ve got a date to look forward to now. I remember all the feelings you are going through. I had similar pain and was on a lot of narcotic meds just to take the edge off but nothing ever took it away. I realized especially while I was waiting to see Dr. Raz and then waiting for surgery that I needed to use my pain dr to the fullest extent and use the medications I needed so I could make it to my surgery date. It is ok to do whatever it takes to make it so you can get there. I know my pain doc and my counselor were who helped me with my waiting process the most. Find someone you can talk to to help you sort out your feelings as this is a very emotional situation. I found it was impossible to work through those emotions and stay as rational as possible by myself. Just be kind to yourself right now and know there will come a day where you may have some residual problems but you will hopefully be past all the debilitating pain that you are experiencing now. Hang in there!

      Reply
  8. Kathy

    Each day is difficult and Yet I will never stop trying to fight for my life. I have been told I can’t go to UCLA as no doctor in my area will ever see me again if I do. I also have been told that during a “partial removal” – ” We will just start digging it out”. I am already paying too many co-pays and am starting to get that not a one of my doctors know what to do for me. It is clear to me now… and that is so difficult to bare.
    I have started telling people why walking is so difficult for me… I am tired of hiding this mess. We all need a miracle.

    Reply
  9. Cheryl

    I had the mesh TVT sling Feb.2010. I’ve just recently started having pain in my lower back down my leg. I’m so glad this blog is here Linda, its giving me some hope,because I have no insurance or money. I’m praying Obama’sCare will help women like me! I agree we all need a miracle!!!!!!

    Reply
    1. lavalinda

      Cheryl I do hope Obamacare will give more women a chance at a better life. So many are waiting for it to get the help they need.

      Reply

Leave a Reply to lavalinda Cancel reply

Your email address will not be published. Required fields are marked *