The Devastation of Mesh

As you all know I have been taking a break from mesh and all the devastation that surrounds it. This morning I went to answer comments which is something I now only do every few days, and I was struck by one woman’s long comment and I had to tell he and you all something. We have to stop blaming ourselves for the mess we are in!

We have all done it at some time. “I should have asked more questions”. “I should have done more research”. Well I can assure you I did and yet I am in the same mess you all are. IT IS NOT OUR FAULT that this happened to us. Mesh was never tested in humans. There are many papers written about what was discovered when it was used in rats and dogs and many warnings by worried researchers and physicians. But the mesh manufacturers did not care. They decided to push it through under an umbrella loop. Sadly, this is done all the time and our government allows it. They need to stop this NOW before the tolls reach gigantic proportions. Is it not enough that already thousands of women are affected by this? What will it take before this is not just a warning but it becomes a halt until further investigation happens by people who are not PRO mesh.

The women of the world obviously do not matter enough for this to change. That is why we have to tell women face to face one woman at a time.

When I read what this woman wrote I felt terribly sad for her. She is blaming herself for something she felt she should have known about. How could she? It is the duty of the mesh manufacturers to first of all not down play the serious consequences of mesh, and not convince doctors we are all a bunch of nuts that are blowing this out of proportion. WE ARE NOT! We are injured women, wives, mothers and grandmothers of the world. We have lost so much while condoning these products keep going on.

Please be aware that all mesh slings and products are doing serious damage to women and their families. Before you even think of doing this, read this woman’s story.

What I would tell her is this. YOU are not to blame. You were doing your job the best you knew how and this is not your fault.

I don’t know which State she lives in and I have asked her. I have reread this from her and there is nothing to give away who she is and therefore I want her story to be a warning to guide women away from mesh. It takes hard work and money to go elsewhere to get surgery done that you may need, and a lot of homework. But this is your life and your future. Please do not be persuaded that a doctor I quote “Does not use that mesh that is being blamed for all the injuries”. They all do this regardless that they be called ‘mini’ or whatever their name is. I hear from women with all types of mesh and they all regret that it was put into them. Please, please do your research and only go where they understand how to fix your medical issues MESH FREE!

Now read one woman’s story.

“I was such an outgoing loving life person. I married my high school sweetheart and had 2 beautiful girls and loved my life. I worked days and my husband nights. I thought I had everything! I never let anyone see me hurting, upset, blue. I was too busy being a mother and wife. I always believed that loving someone meant putting their feelings above your own. I once read a paper my oldest daughter wrote about how I was her hero and how much she looked up to me. I went to nursing school with 2 young children and a husband that worked nights. My youngest daughter told all her teachers in school that she was going to be just like her mother and go to school to learn to help others. She is now a senior in high school and plans to be a doctor. I had a horrible car accident that I shouldn’t have walked away from while I was in my last year of nursing school. I had a headache every day for 2 years before I ever went to a doctor to find out why. I used to enjoy riding horses in barrel racing and pole bending parades and trail rides. When I was on a horse I could relax like nowhere else. I felt closer to nature and closer to God on the back of a horse. I still managed while I was in nursing school to go to every basketball game and every band concert. I went to work as a nurse working post-op GYN surgery. I cared for women who had hysterectomies and bladder surgery. I believed the doctors that informed us what we needed to educate our patients with before we sent them home. I thought I was helping all those women to a better way of life. I had no idea that I was helping them to hell. I had SUI while carrying 50# bags of feed and moving 65# bales of hay. I had SUI playing with my girls and nieces on the trampoline. I had SUI while riding barrels and poles on horseback. I finally after 6 years of putting it off because there was something else more important to do. Something else that needed my time more than I needed surgery. When I finally decided to have the surgery I told my family it was this wonderful new procedure that was outpatient and I knew everything I needed to know about the procedure and the recovery. Immediately after the surgery I developed these horrible painful bladder spasms. I was told by my doctors that it might be a bit tight but it would loosen up some and they would subside. I dealt with this in silence believing what I was told by the doctor I trusted to deliver my 2 girls, tie my tubes, perform my hysterectomy and now my TVT sling operation. I have a really hard time speaking about all my health problems and don’t want to be a burden to anyone. I have never really sat down and talked to anyone except my spouse. He understands but doesn’t want to sit and dwell on the bad so talking to him is hard. I have tried many times to talk to him and though he is one of the most amazing men on earth it seems to leave me frustrated. He tries to be understanding yet when he says things like, “you just need to get out more.” or “just get up swallow a handful of pills if that’s what it takes and get on with your day.” I have spent the last 7 years in a slow decline in my health. I thought that I didn’t bounce back from the surgery because it was the 4th abdominal surgery I had had and this after 2 babies. I was older to, 32 at the time. I have had 2 anaphylactic reactions of unknown origin and broken out in all body hives 4 times in this time. Numerous allergy tests have revealed no known allergies and no explanation for these reactions. I have developed a constant red tint to my face like those known to have lupus. I have asked doctors about this and have been told everything from it’s an allergic reaction to something to it’s just your blood pressure. I have had a headache every day since my auto accident and this has been the blame for some of my ailments. I have tried to get numerous doctors and my own family to believe me that there was something IS something just not right. I have been told I have 3 herniated disc and spinal stenosis but it’s not bad enough according to the MRI for surgery. I have had 2 different neurosurgeons tell me that it’s not bad enough to explain the pain I have. I have seen 2 different neurologists for my migraines and headaches. I have seen 4 different pain doctors in an attempt to control my pain. I can’t pee without spasms and pain. I have popped blood vessels in my eyes trying start a stream of urine or keep it going. I have had so many urinary tract infections that I lost count. I get pimple or boil like cysts and when my wonderful spouse helps me to doctor them he removes plastic like bits that were thought to be stitches that never resolved. I have excruciating pain in my lower back that radiates down my legs. I have had multiple CT scans to rule out appendicitis. I have had colonoscopies to rule out Cohn’s disease. I have had doctor after doctor tell me they can find no reason for my pain. Because I am a nurse they all assume that I am drug seeking. I dealt with the pain scared to take pain meds for over 3 years because I was afraid of everyone thinking I just wanted drugs. I have a non-existent sex life due to pain, numbness, return of SUI, and non- functioning sex drive. I mean how can you even think about sex when you are worried you will piss on your partner. How can you think about sex when everything is numb and you feel worthless and cheap. How do you tell your spouse that you can’t feel anything? How do you tell your spouse that you hurt too bad to even be touched? There are days when it hurts for my clothes to even touch me. How do you tell your children that it hurts to hug them? how do you tell your 10 month old grandson that it hurts to hold him, to hug him, to rock him to sleep like you have every night since he came home from the hospital? How do you explain to your family that you are too tired to go to the lake? How do you tell your daughter that you are too sore to stay the entire game and will miss her halftime band performance? How do you tell your daughter that you can’t play your flute beside her during the homecoming game because you hurt too bad? How do you tell your daughter that you hurt too bad to go to her band concert? How do you tell your daughter that you hurt so bad you can’t get out of bed because you sat in the basketball stands for 2 hours the day before? How do you tell your children that you hurt so bad you can’t take another step? How do you tell your husband that you hurt so bad you can’t even stand his touch? I take 17 different medications a day and still hurt so bad that I can’t enjoy life. I have been diagnosed with fibromyalgia. When doctors hear that word they immediately start to treat you like a drug seeker. They won’t listen to anything you say after that and no matter what is wrong with you they write it off as fibromyalgia. All the doctor’s want to do is shove another pill at you. I don’t know how many times I have asked doctors to please help me and have said that I don’t want another pill it’s just like putting a band aid on a hemorrhage! I had a doctor Friday tell me that fibromyalgia was what doctors diagnose you with when you say you are in pain and there is no clinical reason you should be hurting. I have spent the last 7 years in hell with no way out. I lost my job and subsequently my health insurance. I have been forced to file for disability at 39 years old. There are some days I can’t even get out of bed. I have mesh protruding through my vaginal wall. I pull bits of it out through sores from time to time. I am taking care of my ill spouse who passes out without warning, my 2 daughters one 21 in an ugly divorce the other 17 in her senior year of high school, my 10 month old grandson, and my lifetime friend who is a paraplegic from a 3-wheeler accident. I don’t have time to be sick or not get up every day. I contacted a lawyer about 2 years ago and after the initial contact only called to check when I had the time and they have just now gotten my medical records. I was directed to this site by the law firm. Something kept at me to visit this site. I went to it on Friday afternoon and learned that this mesh might be to blame for everything that has happened to my body and all my pain. I don’t even know how to feel really. I am angry yes! I have missed out on so much in my children’s lives that will never happen again! I have a nonexistent intimate relationship with my spouse. I am missing so much of my grandbaby’s life. I am VERY angry! I am also angry that as a medical professional I have in a sense lied to countless women that I cared for and told them all they were going to be fine even better than fine. I don’t have health insurance and have no idea even where to start with all this. I called a urologist Friday and their office had already closed so I will have to try again on Monday. I have missed so much of my life. You ask if we are angry… HELL YES WE ARE ANGRY!!! we have been lied to, discredited, talked down to, laughed at, told we were crazy! When I die I don’t have to worry about heaven or hell because I have done my time in hell and unfortunately my journey has not even really began.
I mean who is going to apologize to my family? Who is going to bring my family out of financial ruin? Who is going to restore my health? Who is going to replace all those memories I missed out on? Who is going to explain to my family why all this has happened and how to deal with it? Who is going to heal my body? Who is going to explain to me why this happened to me?
I just pray for justice for all those that lied and continue to lie to people saying this is safe. I pray for full and speedy recoveries for all those who are victims and for their families as well. I pray for understanding for all those involved. I pray for strength and courage as I begin my journey. All we really have left to do is pray!
I don’t know if any of these ailments or illnesses are related to my mesh. I haven’t had any opportunity to go to a doctor and I don’t even know where to start. I don’t even know what mesh is in me. I don’t even know where to start. I have the name of a Urologist, but I have no idea if he will even see me. I am just so lost I don’t even know which way is up to be honest. I have so many different questions in my head I just feel lost! Anyone who might know even where to start, please help!?!”

I feel so deeply for this woman because there are so many young women who are just like her. The sad part is she has lost her career and her health insurance. The terrible part is even if she did have insurance, urologists refuse patients like us. We are a liability. I wish she had access to UCLA’s wonderful doctors. I know a woman her age who struggle through many months of waiting to get removal by Dr. Raz very recently and when she got home, the deep tissue infection still plagued her. However after IV antibiotics, she had, has at last improved her infection issue and is able to function again with her family.

If anyone out there believes this is an older woman’s problem you would be so wrong. Thousands of young, courageous women suffer every day feeling there is no hope for them. I don’t want them to give up. I don’t want this to be for no reason at all. Our lives are worth far more than this. I hope you will show this woman love and caring and leave her a message. Thank you.

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

15 Comments

  1. GENA

    I feel the pain of this woman. I know exactly how she feels. I suffer every day with the same issues as her. It is scary and you feel alone. I wished I had answers for her. All I know to do is pray and maybe God will show us the way to be healthy again.

    Reply
  2. Alisa

    I now have my 2nd vaginal mesh erosion…I live in TN, but have an appt. with Dr. Raz in March, 2014-they advised that his surgery schedule is maybe 6 months out. He has 3 other associates in that same office that perform the same total mesh removal procedures. They have appointments open earlier, with a closer surgery date. How does waiting what could be almost another year for surgery weigh against having this “not operated on” and taken care of sooner? I now am having some vaginal infectious drainage, which I never had before. On Doxycycline-go back to my Urologist in 2 weeks. I am going to sit down and discuss my plans to see Dr. Raz in March with all intentions of having a Total Mesh Removal procedure done. surgery was to do a bladder sling. Your thoughts on waiting?

    Reply
    1. lavalinda

      His associates are excellent doctors and I have used Dr. Kim. I know others who have used Dr. Rodriguez. Yes it is now a 6 month wait after consult, so only you can decide what to do and how your health is.

      Reply
  3. Rebecca

    I will identify myself not for sympathy but for help. I live in Arkansas and this is my story. I have an appointment for a consult to see if the doctor feels that my mesh has failed on December 13th. It is a doctor in the same firm that my doctor that placed the mesh. He retired. It will cost me $125 just for the consult. I feel like I’ve at least taken a step toward somewhere. I don’t know if this will be a waste of money, but I finally found someone that will see me. I write to ease the tension and put my feelings into words. I have been writing poems since I was 14. This may not be great and most definitely not professional, but I think this will express how many others feel.

    Here goes…
    THIS IS MY HELL

    I accepted it as a part of every woman’s life
    Now every day is a struggle just trying to survive
    I pray every morning for courage and for strength
    Whether it be to face the day ahead or to take my last breath
    Starting my day with a routine of pills and pain
    Struggling to walk now even forced to use a cane
    My dignity forever lost
    Keeping my fingers crossed
    Asking, yelling, screaming, demanding
    Begging, pleading for just a little understanding
    Wanting just one person to believe
    What has been lost and why I grieve
    The once in a lifetime things I’ve missed
    Never getting them back never again to be witnessed
    Feelings of always letting someone down
    Not wanting then to know the pain just to sit down
    How do you explain pain even from their touch
    How to smile through a hug when the pain is almost too much
    Trying to hide the tears as you cry yourself to sleep
    So depressed at what your life has become all you want to do is weep
    Not knowing when this thing will take me
    Sometimes wishing today it could be
    Just tired of all the disappointment
    Life no longer holds enjoyment
    No one believes me nobody understands
    Makes you want to give up just throw up your hands
    No money or health insurance to help get this thing removed
    Not knowing but faithfully praying after your health will be improved
    To once again trust the ones that let you down
    The ones that said, “go to sleep we’ll keep you safe and sound.”
    I miss so much as life goes on around me
    The life that used to include me
    My daughters one a senior and one a mom herself
    My grandson is a Blessing in and of itself
    But because of this mess so many milestones go on without me
    This isn’t how my life should be
    I should be active, involved, right in the middle of things
    Not lying in bed praying better days tomorrow brings
    Now I pray for removal of this mesh
    And recovery and return to life afresh
    Just to awake one day for a hug pain free
    That would mean the world to me
    Until then, Lord, please help the to understand
    This pain and suffering wasn’t my plan
    Please help me to heal before I’m just an empty shell
    Here’s just a glimpse into my world, “This is my HELL.”

    -Rebecca a victim of this nightmare.
    Thanks again ladies. Maybe I have found a road to removal… guess we’ll know more in December. Until then May God Bless and Keep you all. Have a wonderful holiday with many everlasting memories and overflowing with blessings with many more to follow

    Reply
  4. Anonymous

    Linda, I would like to speak with you privately by email if possible. I am at the end of my ability to handle the enormity of what I am facing and have been told by my attorneys to not discuss the case. My life has been ruined.

    Reply
    1. lavalinda

      Anonymous, I hope reading this blog will help you. http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

      Reply
  5. Chandi

    These stories I read here, they are my story, my pain…I must begin to find a doctor who will believe me, I’m in Arkansas , my insurance only covers in Arkansas…I need help, I don’t know where to start

    Reply
    1. lavalinda

      Chandi you are close enough to go to this doctor. http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

      Reply
  6. Marianne

    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.

    Reply
    1. lavalinda

      Marianne. I posted a blog this morning that you should read. If you have any problems you have somewhere to turn. http://teapapers.com/bladdersling/2013/12/meet-dr-veronikis-a-great-surgeon/

      Reply
  7. Rebecca

    Chandi,
    I too am in Arkansas. This is my story and the story of so many others just like us. I have no insurance and have spoken with Dr. Veronikis’ office in St. Louis, MO. I too was told that if I obtained insurance it would most likely only cover in Arkansas. I am holding out hope that with this new law comes new hope that people like us will find help. I hope that I have at least changed the batteries in that flashlight at the end of that tunnel. I am going to pray that we both find help as well as all those others out there who find themselves in the same boat at us. Please don’t give up. Prayers for all of us. Prayer is all we have left!

    Please just never give up and know that you are not alone and most certainly not the only one from Arkansas that is a victim.

    Rebecca

    Reply
  8. Bev Mays

    Go to Dr. Raz!!!!!! I am so deeply grateful for this blog! When everything first started in November for me, I thought it was weird, but didn’t think too much about it. By December, I was in sharp pain and leaking urine ALL THE TIME. I set up a consult with Dr. Raz on 12/20 for this coming March fully expecting to cancel it. I really didn’t think I could be one of these women. Since 12/20/13, I have been in so much pain I went to a more local University hospital to see a specialist. I just had to. He confirmed my bladder sling was attached to my bladder, not under my urethra where it was supposed to be. I experience loss of bladder and bowel control one day, and an inability to void at all the next. I am on two pain killers, an anti-seizure med, and a muscle relaxer every day JUST to function.

    Thank you Linda for your blog and all the women who have contacted me to help. I am comforted knowing I will see a doctor who can really help me. Ladies, TRUST YOUR GUT!!!!!!! Don’t let ANY doctor, etc… cause you to doubt your pain. IT’S NOT IN YOUR HEAD.

    Blessings and healing to you all!!!

    Reply
    1. lavalinda

      Bev hopefully your life will improve and turn around so that you can be there for your children. XX

      Reply
  9. Rebecca

    The one WONDERFUL thing about this “Obama Care” is that it allowed me to obtain insurance. I had tried multiple times and got denied as all of this is “pre existing conditions.” I finally got insurance and found one that I assured would cover out of state. On May 30, 2014 I had surgery in St. Louis and I am ecstatic to say I AM FINALLY MESH FREE!!! I go back for a 6 week check up and then heal for 3 months and if there are any further repairs that need to be made I can make an appointment and have them done. I was told that the mesh didn’t cause all these symptoms. That all these doctors was to blame the mesh once they find out that you have it. I don’t know how this many women can COINSIDENTIALLY have the exact same symptoms. I told the doctor, “if the mesh is removed and the symptoms go away then we know it is the mesh and if the symptoms don’t change then we know to look elsewhere for a cause but either way I want the mesh out of me and I refuse to be implanted with any more mesh EVER!” I pray that we all may be mesh free and healed one day or at least our bodies be healed. I fear the mental wounds may never heal! I started running a mild fever today so I’m going to watch it very close but outside of that I am progressing each day. Thanks for all the thoughts kind words of support and prayers! I will continue to pray for us all!
    Rebecca

    Reply
    1. lavalinda

      Rebecca I hope you are well now. Being mesh free often doesn’t mean being symptom free. You have had removal less than two weeks ago and only time will tell the outcome.

      Reply

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