Mesh Mad & Damn Angry

Before you read this, I have just found out we have technical difficulties with the comment box. I do apologize and hope we get it fixed soon. Unfortunately a mass spammer hit the box and new user registrations came flying in. It was the same email address, so we took action and it messed everything up. I hope when it is fixed you will go back to the blogs that are affected and leave those important comments. You cannot imagine what this means to other women because it validates all the suffering they have gone through. I sincerely thank you for doing this.
Update.  The problems are now fixed thanks to another mesh sufferer who did this for me.  Her help is very much appreciated.

As I hear from women all over the world who have suffered for many years with mesh injuries, first I want to cry with them and then give them a huge hug. Yesterday I felt that way when I read the mesh journey of a woman in Wales. I also heard from another woman who had serious issues with mesh and everyone had given up on her. But…… she found my blog and did everything she could to get out to see Dr. Raz. He removed all her mesh including some on her spine, that other doctors said it was impossible to remove. The one thing I will say about this man, he does his best to help women live again. Even though they have to make many adjustments, they do begin living again once the mesh is removed. But of course, it is not the life they had lived before. They are grateful to live to raise their children and meet grandchildren, regardless of numerous obstacles. One woman just went back to see Dr. Raz because of her continuing fecal incontinence after her complete mesh removal surgery. She did not get an answer she had hoped for, but one she knows she will have to live with. This was her note.
“I found out today that my fecal incontinence that began with the mesh is a permanent problem that we will try to manage. In a way I was relieved that surgery wouldn’t help as I’m so tired of surgery. It’s better since my last surgery but there is nerve damage, that as all of you know isn’t easily, if at all, solved.”

Many women struggle with nerve damage issues and as hard as my own is to deal with, I feel deeply for those with pudendal nerve damage. Their lives consist of various therapies, endless doctor visits and pain medication. I have walking issues from femoral nerve damage and I hope to be well enough soon to begin some sort of physical therapy to see if my own situation can be improved. I am frustrated that even with complete mesh removal doing things like trimming my toenails and stepping on ladders, still eludes me. But the pain is manageable without constant pain medication, giving me one less thing to worry about.
So today I reached out to medical mesh injured friends who understand a bit more about this serious issue than I do and this is the feedback.

If you suspect nerve damage you may want to read this. After her mesh removal, a reputable uro-gyn was asked by a mesh injured nurse if the pudendal nerve could be a cause of her continuing pain and other issues, to which he replied, “I don’t know. He then said that he wasn’t a pudendal nerve specialist.   She said she was in shock and said nothing…. She felt if you do these surgeries where these nerves are involved then any doctor should be very knowledgeable in this matter.  After that, she decided to head out to see Dr Raz at UCLA who confirmed nerve damage. I should tell you this was the same for me (mine is femoral nerve damage) and many others that I know about, who were not diagnosed with it before seeing him, even though they had many symptoms. I was sent to have and EMG which was extremely painful and proved nothing. I would never go through that test again because it is up to interpretation of the doctor giving it and all the pushing on the nerve injury areas caused me extreme stress. One lesson learned. EMG is NOT the way to go for mesh injuries.

More advice for my medical friends. “The first thing to do is to safely have the mesh removed if it’s still in you.   With luck, the nerve heals after the pressure from the mesh is removed.  Many times when someone has fecal incontinence or is unable to urinate for months to years after the mesh is removed; it’s due to nerve damage. Another woman I know also sought help from a new urologist. The female urologist told her that her “feelers weren’t feeling” and her “squeezers weren’t squeezing”.  So sad……. We all deserve a proper explanation.”
“Sometimes nerve blocks work for pain, and sometimes they don’t.  Many times they work for a short period of time, and then wear off.  Supposedly, if they work for even only a short time, then the nerve can be deadened in the same place at a later date, giving either permanent pain relief or relief until the nerve grows back.
Vaginal spasms can be secondary to nerve damage but doctors tend to not connect the muscular and visceral symptoms together.  Vaginal spasms don’t have to be related to nerve damage though so that’s what makes the situation confusing and difficult to diagnose.”

Back to me.
There is another VERY SERIOUS side to mesh complications. The continuous use of antibiotics. Mesh women are exposed to more types of antibiotics and from this exposure is high risk of further complications. Many new forms of bacteria arise and when given too much antibiotics, bacteria develop into superbugs. I have become even more aware of this during my own bout of superbug bacteria and treatment.

We all have to be vigilant in the types of antibiotics, amounts and side effects. Incidentally, not just those written on the paper that comes with the drug. Please got to Web MD and check the side effects that are not listed. They tend to be the more dangerous side effects and even if rare, you don’t want to ignore them. Learn all you can and listen to your body.

My suggestion is you begin a diary of everything you have taken. Amount of dose, how long you took it and if something did not seem right when you took it. This could save your life in the future. Yes some side effects can kill you.

It has been passed to me by yet another woman who is suffering from mesh complications that yesterday she found out that the drug she has been taking for awhile has now damaged her heart. This means she is no longer a candidate for mesh removal surgery. This is the drug she was taking. http://www.fda.gov/Drugs/DrugSafety/ucm341822.htm Please, please, report any side effects you have to the FDA and tell the power that be, who is handling your case if it is life threatening or caused you further damage.

You may be suffering and in pain. You may be very sick and also sick and tired of all that is happening to you, but you still have to be vigilant. No one else but you knows your own body. Believing the things that are happening to you is the very first step to not going further downhill. You must be your own patient advocate.

10 Comments

  1. BatyaSarah

    Linda,
    What is EMG? I will have to wait til end of Oct. for my surgery so I won’t know the extent of my nerve damage until then. I am in severe pain again today..will try taking supplements, can diet help heal nerve damage.
    BS

    Reply
    1. lavalinda

      This is a great explanation. http://en.wikipedia.org/wiki/Electromyography I know other women who had this test and all did not get a conclusive answer. It is a waste of money and not a good experience.
      B Vitamins can help so that the nerve issues may not get worse. I took them all the time I waited as soon as it was apparent I had nerve damage. I still take them. This is one blog that may be helpful to you.
      http://teapapers.com/bladdersling/2012/12/mesh-my-nerve-damage-plan

      Reply
    2. Harjinder

      Hi,

      I am experiencing this same problem. I had a surgery in 2012, and I am still experiencing pain. I think I may have nerve damage. I experience pain every single day since the surgery. Does any one have any suggestions for my pain? I am thinking of getting the mesh removal surgery done in the States. Anything would be helpful!

      Thank you,
      Harji

      Reply
      1. lavalinda

        Harjinder I don’t know where you live but I am going to email you something. I hope you go to Dr. Raz.

        Reply
  2. a meshed-up nurse

    Thank you for writing about this very important information that other women with mesh implants need to be aware of.

    Reply
  3. Cindy walraven

    I agree whole heartily with linda on this. I have mesh and also suffer from small fiber peripheral neuropathy it effects my arms, hands, feet and legs. I have burning tingling numbness weakness in legs and arms, and I also get electrical shocks. When people ask me what it feels like I tell them its like walking on a bed of hot coals with broken glass in it. I see a neurologist and have been for two years now. I have yet to ask him about nerves Linda talks about but plan to at my next visit in june. I will let you know what he has to say. One thing I know i asked several of my other docs if some of my pain could be nerve damage they said no but when I asked my neurologist he told yes it could. I have had several EMG’s and do not plan on having any more. They where so extremely painful that I cried the whole time even though I had taken pain meds. So my easy explanation of and emg is they have you lie down stick small needles in your nerves and then shoot electricity through to see if the nerve is damaged. I do know with neuropathy there is no cure all the can do is help the pain with pills. I pray that someday it will go away and that someday there is a cure. I take neurotin, amitriptyline, and oxycodone for the pain and it does help a little but it never goes completely away. All we can hope that sometime in the near future they can learn how to rejuvenate or nerves.

    Reply
    1. lavalinda

      Thank you Cindy for your words of wisdom and experience with EMG’s. When the neurologist pushed her fingers into my groin where the injury was, I almost passed out. It is bad enough to suffer from our injuries and we should not have to suffer with even more pain. It is heartless.

      Reply
  4. Brenda Boling

    Hi Linda, I was reading the support section and one of the lagies said she could not have the surgery from Dr. Raj because of a heart problem. I have never had a heart problem but while living in Fla. I had a little bump if you when a man pulled out in front of me from a shopping center and stopped. I was turning left at a traffic light and he pulled out after I turned. Our bumpers barely touched but my air bags came out and hit mr hard in the chest. No fender scrape oror anything at all. I had my regular check up the next morning and felt a funny flip flop in my chest so I asked my Dr. if she would check it (words I wish had never come out of my mouth) she sent me next door for an echo and told me if I didn’t go to the heart dr. Immediately that I would fall over dead. Her exact words. She could get me in to see a Dr. at a nearby office because was new and had an opening. He listened to my heart and said the exact words to me that she did which scared ne to death. This was seven or 8 years ago. He told me another DR would be doing the surgery and showed me a chip from a camera and that was the size of it. I kept waiting for the other Dr to come and talk to me but never did. He put in a defibrilator and pacemaker combined and turned both on 100% . This was with the lady from ST. Jude in the OR with him. Needless to say I went into a coma for over a month and finally had to go to Mayo in Minn. to have the surgery he did repaired. Dr. there said he had never seen such a botched job in his life. My heart was stuffed in the cavity like saran wrap. I f anyone has a heart problem, Mayo in minn. is the place to go. Toget to my lengthy point, would I be eligble for the mesh surgery? mine has been in since 1998 or 1999. I was planning to go to Dr. Raj. I amstill kicking myself regularly for not getting a second opinion. I always have but they scared me so much that I was afraid to wait. I asked and was told NO but found out later that being hit in the chest that hard with an air bag can cause temp swelling. I also will add that I finally met the surgeon 3 months later when the Dr. I was seeing told me he knew nothing about defibs. When I saw the Dr. I said “well there really is a Dr.——.and he immediately said I’m transfering you to Mayo because it’s enevitable you need a heart transplant. I was floored. When I went and after much testing I was told all I needed was meds to bring the swelling down from the impact. I had a simple question but felt I should explain because most people would say why a defib & pacemaker without a heart problem. Hope you or someone can answer my question. I have been through a lot of bitterness and disbelief but I have been more angry with myself. I truly believe that everything happens for a reason and God will show me. I think he has already started. Sorry so long!

    Reply
    1. lavalinda

      Brenda that is a horrendous story. Dr. Raz has performed many surgeries on women who have heart ailments. This lady also has a rare lung disorder and her lungs will bleed. She was put on a medication that also caused the heart issue. Her lungs are the main problem. Go out there and see Dr. Raz. When you have pre surgery tests it is so that he knows what your situation will be and they can make sure you are well cared for. It is rare a woman is turned down and it is because of something very unique.

      Reply
  5. Brenda Boling

    Typo-should be ladies

    Reply

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