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.