A Night in a Life with Mesh

If I were to paint a picture of my body right now, it would be fractured.  My pelvis, thigh, hip and leg would be ripped apart, held only by hardened medical mesh.  That’s what living with this product in your body feels like.

Last night around nine pm I carefully and painfully stood up.  It was then that a muscle spasm hit my thigh like a tsunami.  A pain so forceful I cried out.  I steadied myself for the inevitable thunder and lightening bolt of pain that would take hours to subside.  As I slowly stood up, I knew I had to go to the bathroom.  Since the sling surgery I have no warning sign that I need to go.  When I stand I know it is coming and I have to get there.  In pain I slowly made my way to my own bathroom where the toilet is higher.  It helps me stand up and sit down and not have so much pressure on my right leg.  Pressure that can make me have more pain.

As embarrassing as this is, I didn’t make it all the way, so while suffering with pain I had to clean myself up.  So much for a small incontinence problem before surgery after a sneeze or cough.  I should be embarrassed to write this and share it with the world, but it is the only way to share with other women what can happen to you because of this surgery and to explain that nothing is worth this.  It doesn’t fix problems, it creates them.

I knew that I had to take ibuprofen as soon as possible with a hot drink.  It would take time, but from past experience I knew the thunder bolt of pain that remained, would not subside if I didn’t.  I carefully and very slowly made my way to the kitchen.  Hot tea and pills in hand I slowly walked to the living room hanging onto my walking stick to try to take the pressure off my right leg.  I sat on the couch trying not to think about the pain by watching a show I liked.  It didn’t work.  After an hour I made my way to the bedroom to lay under the electric blanket to see if the warmth would help.  My body was shaking with pain.  I wanted to vomit.  After an hour, I couldn’t lay there any more so I went back to the living room and tried another show.

I was tired and worn out and my mind was pain filled.  My daughter is in the house and she was asleep.  Part of me wanted company because I wanted a distraction.  The other part did not want her sitting with me worrying, knowing that she couldn’t do anything.  The hours went by slowly.  I finally went back to bed at three in the morning and fell asleep.

I awoke again at seven thirty only to know I had to go to the bathroom.  The muscle spasm pain was calm and I dreaded standing up on my leg.  Nothing for it I had to do it.  I walked very slowly trying not to put pressure on right leg because I feared another severe spasm.  Luckily, two hours later it hasn’t happened.  I am left with  my pelvis feeling like I have been kicked and my usual daily leg pain.  You get used to it.  It all in my daily life living with medical mesh in my body.  Life is not a barrel of laughs.

After reading this you may feel sorry for me.  Please don’t.  I am one of the lucky ones.  At least I CAN pee.  I went through hell to get there, nine weeks of a catheter after sling surgery.  A second surgery to ‘cut’ the tape and weeks of self cath and agonizing bladder spasms, but I managed to get this bodily function back again.  Other women aren’t as lucky.  Until recently I had never heard of a lifetime prescription for catheters to self cath.  I heard from a woman who has lived this way for seven years.  All because of a of a product called medical mesh.  I write this for her and the others who suffer far more than I do.  They can’t write their feelings down.  They just live with it.

Hopefully all will go well and after I am on Medicare later this year, this product will be gone from my body.  I won’t feel like my thigh is being strangled.  I won’t feel the knife point stabs into my groin.  I will be able to live again, pain free.  If you are reading this and are contemplating this surgery, I hope you change your mind.  Your life is far too precious.

19 Comments

  1. A friend who loves you

    My Darling Linda,
    No Shame, No Embarrassment, you’re a strong amazing wonderful woman that is loved and appreciated. I wish that I could take your pain away, I wish I could pull the trauma in your body, heart and mind out and toss it to the wind never to be thought of again! You’re not just a meshie…you are as I am a warrior, a warrior with a heart of gold to help other women learn about mesh to save their bodies, hearts and minds. Blessed are those who suffer my friend. We are the few, the strong..THE MESHIES and we WILL prevail!

    Reply
    1. lavalinda

      Thank you. I appreciate the wonderful sentiments. We all need a hug at times.

      Reply
  2. Kathleen

    Your description is right on about what it feels like at times. Mine even poked me like a sharp knife. It is not a cushy hammock. It is not soft. It entraps your nerves and muscles and changes everything for the worse. I felt immediate relief with my whole pelvis after complete removal. It took several weeks to heal but it was so worth it. I will celebrate with you when things change!

    Reply
  3. lavalinda

    Thank you so much. Perhaps one day we can all dance together and celebrate the use of our legs once in motion
    . I know it is possible. I’ve read the stories of those with successful mesh removal. All it takes is the right doctor who is dedicated to giving women back their lives.

    Reply
  4. BETTY

    I AM ON E OFTHE FORTUNATE ONES – ALSO CAN URINATE WITH NO PROBLEMS AND FEW TIMES OF NOT GETTING THERE ON TIME- VERY FEW.

    i SO SYMPATHIZE WITH YOU- AND HOPE THE NIGHTMARE WILL BE OVER SOON.

    i TRULY FEEL I NEVER NEEDED THIS SURGERY- i WAS A HEAVY COFFEE DRINKER AND SO SEEMED TO HAVE URGENCY. I DID NOT. ITIS OUT AND I HAVE NO URGENCY,

    so grateful most of it is out- you will be there soon.

    NOW I AM OFF COFFEE AS I HAVE INTERSTITIAL CYSTITIS WHICH I BELIEVE IS FROM THE MESH,

    YOU, ME, OTHERS- HOW MANY OF US MAY NOT HAVE NEEDED THIS SURGERY OR MAY HAVE NEEDED A DIFFERENT FORM.
    HANG IN THERE LINDA. BE COURAGEOUS AS YOU ARE ALWAYS,.

    Reply
  5. lavalinda

    Thank you Betty. I too didn’t really need this surgery and have SO wished I didn’t have it when I had the rectocele repair. Beiuleve me, I am hanging. I am determined that I will get it removed later this year and get my life back.

    Reply
  6. Cindy

    Hi ladies. Finally I am reading a site where I feel maybe someone can help with some information. I was reading the post above from Kathleen – where did you go to have your mesh removed? Also, did any of you have any strange nerve pains in other parts of your body such as the back of your head. Anyone have any allergy-type symptoms such as frequent sneezing, the urgency to cough alot because it felt like something was getting caught in your throat, severe itchy scalp, a strange sizzling type numbness in your tongue and lips that caused you to lose about 75% of your ability to taste, strange overall major skin sensitivity so bad that you can’t hardly stand any clothes on or the water from the shower hitting your body? My mother has been having strange problems like this status post POP surgery with mesh sling and 2 other mesh implants for what I think was to support weak vaginal tissue. She started having symptoms about 7 months after her surgery in 2010 where she suddenly felt like she had the flu, really weak. Her potassium level became severely low and she had to get IV potassium in hospital. After that, her body seemed to go haywire. She said it was so strange, like the inside of her body felt like it had been burnt or gaulded in some way. Hence, that’s when all the other symptoms seemed to develop as well as bouts of vaginal infections and yeast infections. The main constant symptom though throughout all of her troubles is the vaginal pain. She says she feels “raw” most of the time in her vagina and the pain seems to be just up inside the vagina a little way, not up far inside. Her urologist used the AMS mini-arc mesh sling with the InteproLite mesh kit. This was her third POP surgery. She is 73 years old. She does NOT deserve to be living her “GOLDEN YEARS” this way. I am very angry and feel that the mesh is the problem; however, all of the tests the 4 different doctors she has seen so far have came back normal! I don’t know what to do for her. She had so much pain after a recent cystoscopy that it is taking weeks to recover. She feels like she just wants to quite searching for an answer and live with it. She says no more prodding and poking by doctors who can’t help anyway. She is losing faith in finding the answer. We are from Pennsylvania. Does anyone who has had their mesh removed successfully know of anyone in this state or any other that they would highly recommend? I came across the website of Atlanta Urogynecology – Dr. Miklos and Moore – that looks really promising. Anyone know about them or have any experience dealing with them? They look like the cream of the crop of surgeons who are dealing with this mess. Please anyone post back who can give us some feedback if your symptoms relate to any or all of the above as well as any highly-recommended mesh removal surgeons. At this point, I am ready to travel just about anywhere in the US to get her some help. Thanks to all who read this – God Bless You All !

    Reply
    1. lavalinda

      I am going to send you a doctor who is THE best in the World. I will send all the information privately. Thank you for writing on this blog. You will help other women by doing so.

      Reply
    2. lavalinda

      We are here for both you and your mother. I never comment or give information about any doctor on my blog. I will help you both in any way I can and so will the other ladies. Our aim is to change these continuous injuries by keeping the word out there. MANY more women contact me than you see on this blog. Most want to remain private and I follow their wishes. By writing here however, means you are showing that we are real people who are suffering. Thank you for doing it.

      Reply
      1. lavalinda

        Ruth. You sent me a private email about your mesh surgery in October. I sent you emails but they came back as they could not get them to you. Please send to me again using another email address and I will help you.

        Reply
    3. Donna Peeples

      Dr. Robert L. Harris UROGYN
      JACKSON , MS
      Google him
      Just performed my MiniArc
      Removal. Great doctor. He got
      Every bit of it Linda if your reading.
      Donna Peeples

      Reply
  7. melissa edwards

    I go in at 5:30 am for mini
    arc and anterior and posterior repairs also hysterectomy. I’m 32 I get to keep my ovaries 🙂 I have a great Dr. Who I feel comfortable with what
    worries me is the sling. Not to get to graphic the Dr arent doing a 1″ procedure they are taking my walls apart and putting into place my Dr is
    hand sewing all my ligments and muscles together. I have to have my rectum. Repaired too Please keep me in ur prayers thank you

    Reply
  8. lavalinda

    You will be in my thoughts and in my prayers. I sent you a private email with my number if you need someone to talk to.

    Reply
  9. Mark Ohlson

    Please search google for a product called “serrapeptase” It is a natural enzyme. This may help you some. You can buy it on Ebay.
    I too suffer from Medical mesh, a product called C-QUR made by Atrium Medical but ALL mesh is hideous.
    If they put it in they should know how to take it out.
    Best of luck to you and may God Bless You this day and every day.

    Reply
    1. lavalinda

      I too have used this product for about a year but did not get a lot of help from it. I do know it is supposed to break down scar tissue.

      Reply
  10. Les

    Hello Ladies! I went through a hysterectomy and what i was told a small bandaid size mesh for stress urinary incontinence. The hysterectomy was supposed to fix my problems with bleeding, after I had an ablation and tried other things. The SUI has been a problem for years and figured since it is an easy fix I will be back to having fun without peeing after coughing, sneezing, laughing, running, etc. I had my surgery in April of 2012, after asking my specialist numerous times about what was being used, and told the ones causing problems are the old ones that no one uses anymore. Needless to say my product was pulled off the market a few weeks after my surgery. I experienced pain immediately after surgery and was told it was part of my healing process. It was not getting better, went back to the surgeon and was told again all looked good and it was part of the healing process. Well sex with my husband was horrible. I felt pain and he felt the mesh as well, it even gave him an abrasion! That was it, I met with a new doctor and before he even saw me he had an idea of what was happening. I had to have surgery to remove the mesh, which was not the size of a bandaid, it was a strip that started in my groin, went through my pelvic bone into my vagina to support my urethra and back through the pelvic bone and out my groin on the other side. The mesh was pressing against nerves and causing pain. I would sometimes bleed. I was also getting chronic bladder infections, which half the time I would not know as my bladder always seemed to be having spasms… 2 weeks before my surgery I was being treated for a bladder infection again, and we had problems clearing it up before surgery. My surgery was on a tuesday, of course the insurance company felt I could go home the same day, I ended up being in the hospital until friday. Oh and did I mention I cannot take pain meds as I have bad reactions to them. I have an incision in my abdomen, 2 in my groin and one in my vagina, am on 6 weeks of strict restrictions and find out in 4 weeks which restrictions get lifted. I was told if the surgeon who inserted the mesh had picked up on my symptoms the mesh could have easily been removed immediately. This surgery was a major surgery and we are still not sure if all symptoms from the mesh will go away. I cannot stress enough to NOT get the vaginal mesh implant or sling. Seek out alternatives, get numerous doctors opinions.

    Reply
    1. lavalinda

      Thank you for leaving this comment today. You are affirming to women that we do not get the truth about products that are put into our bodies. The product you mention has NOT been recalled. It was simply voluntarily taken off the market by Johnson and Johnson (Ethicon) but all remaining stock was left on the shelves of hospitals. Your doctor SHOULD have told you this when you point blank asked him that question. This is what makes me so angry. The FDA says doctors should now tell us what will be in us and all the complications that could happen. You can now be an advocate and tell every woman you meet. This is how we do it. One woman at a time.

      Reply
  11. Deb H

    For 9 years now I have been suffering with a MONARC vaginal Mesh. My new doctor said to me “Do you know you have a vaginal Mesh.” I was shocked. I was never told I had this done with my hysterectomy. I have been having the most painful life for 9 years with doctors thinking I am a hypochondriac , even when I went in with live symptoms. Here are some with what they told me. Hives starting at the vagina and move up. My histamines are always up. They said that just happens. Chronic swelling of hands and feet. So big I can’t get my shoes on and had to get my rings cut off once. Some doctors say I have fibromyalgia from the pain in my legs and arms. I feel like I have a yeast infection all the time and my pelvic bone are splitting in two. As the day goes on I get extremely tired and then the bladder pain starts. I cry every night. I don’t know what to do. If there is a drop of pee in my bladder it hurts. I have constant diarrhea. I have had doctors that say they can’t help me, often. 9 years of my life could have been pain free and lived a normal life if someone would have told me. I would have matched the pain and symptoms with the mesh. It was so bad that I tried to get on long term disability but was turned down. I finally see an oncologist but feel they will just write me off too.
    I am glad I read this and know that I am not crazy and am soooooo mad that I went through this.
    If anyone has similar symptoms and found results in removing the mesh, please let me know. I am scared that with 9 years of my body trying to reject this that there will be long term implications like cancer or continuous pain.

    Reply
    1. lavalinda

      Many of the symptoms you speak of stand a good chance of leaving once all of it has been removed. Go to Dr. Raz and he will tell you the same thing. I know many women who have suffered like you after this many years. Get the mesh removed and give yourself time to heal and then see how you do. nothing will change while it is in you. You don’t stand a chance if you don’t.

      Reply

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