Mesh & Hysterectomy Hell
For the past few weeks I have tried to be normal. Tried to forget the world of mesh hell and work on my own life. I do this from time to time, because I badly want to put hands over my ears and not hear the terrible things that are happening to women all around the world. All because of a product called MESH! But in the past couple of days I realized I couldn’t shut my eyes because it seems the world doesn’t want me to.
Then I read this comment left on my blog and realize just how many women do not understand what we are up against.
“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.”
I do not know where this woman lives or who her surgeon is but I just had a conversation again with Dr. Veronikis the other night and he said that if a urologist does not understand the complex body of a woman, then she is at risk. So first, make sure your urologist patient’s are women and he/she does surgery on WOMEN every day. But even then you should understand that putting in a mesh sling is a blind procedure and it is a kit. These kits are sold to any doctor who decides they will use them and they do not train in hospitals on a dummy. They train on live women and there is no school to learn how to put them in. She should also know that there are two procedures, TVT and TVT-O. Both have their draw backs and although some doctors such as the one I used, think TVT has no problems, then she should come and spend a day with me. Because I had a TVT and the ability to take a simple walk like most normal people has been lost from my life.
She could be lucky of course. She may not have immediate complications like I and many women have and they are screaming for help. I just read this comment this morning.
“I had a sling put in 5 months ago and seeing the doc who put this in tomorrow. I’m peeing without warning almost daily and feels like I have period cramping all the time but don’t have as uterus, tubes or cervix anymore. If my doc says everything’s fine tomorrow who else can I see to remove this thing? Oh and I have a foul smell that has been getting worse for 4 weeks now. I’m really scared.”
These are just a couple of the hundreds of comments left here on my blog by brave women who are speaking out hoping to find someone who will give them their life back.
But I know far more than you will ever read here. A daughter flew to be beside her mother this week, while they move her to a hospice. The woman had suffered for years in agonizing pain from mesh and two weeks before a planned trip for mesh removal she was taken ill and rushed to a local hospital where they performed a colostomy. I have seen photos of this woman lying in her hospital bed which I cannot share, nor want to. No one should end up like this. She is now wasting away and the chances of her survival are slim. She is not the first one that this has happened to. So if your doctor believes like many that “a little bit of mesh won’t hurt anyone” guess what? They are keeping their eyes closed for a reason.
This blog is about putting it out there to give women informed choices, not being told it is a simple surgery and then you can move on. Many don’t. The last time I checked there have been over 50.000 lawsuits filed so far and the count is rising. Are we all wrong?
Regardless of the manufacturer. Regardless of new names that are popping up to confuse you, such as bio mesh. Regardless of any TV advert you have seen, you as a woman need to know the truth. We are not all crazy. We are not a FEW women who have gone over the edge with a conspiracy to stop mesh from being manufactured. What we are, are women who live in hell because of these products. Normal women just like you. We had lives. We have families. All was running along as normal until the day mesh was placed into our bodies.
Today this blog is for the woman who knows she has a female issue and she either has been to her doctor, or is about to, to find out what it is and what to do to get rid of a problem that she feels interferes with her life. I am writing to you because I know what can happen to you and how your wonderful life can go downhill in an instant. If you do not believe me go to the following blog and spend an evening reading all the comments left by once healthy, happy women. I did not write them, they did.
Many women do not share with their family and friends about their ‘female issues’. They do not want anyone to know their personal business, nor anything they feels is much too personal. I know this because hundreds have told me so. They feel this information should only be shared between them and their doctor. I completely understand how they feel. We all felt that way too. Until we were stopped dead in our tracks and were living in absolute agony with nowhere to turn and our doctors made out our issues were all in our heads. My ignorance is how this blog came about. I do not want you to be ignorant like I was and find yourself in a mesh hell that you do not know how to get out of. So if you are thinking “I know someone who had this surgery and they look fine”, please go to them and talk to them. Ask direct questions. You see she may look fine, but she may be worried about issues she does not want to share, even with her best friend.
First let me tell you that I did not need a hysterectomy so it does not always happen because of this very female issue, I went to a doctor for symptoms that turned out to be a rectocele. I had no clue what it was and when I found it during a shower, I was afraid. I really didn’t know much about the female side of my body. I had never had abnormal periods. I went through menopause without awful side effects that I had read about for other women. I was active, building my house with my daughter every day, doing things I had always done. I like to work. I was happy with my new chosen life after my husband had died. I liked keeping busy so that I did not have to think I was a widow. But mesh changed everything in my life. Do not let that happen to you.
I just saw a photo of a group of women who got together to try to get worldwide attention to this issue. They are in the U.K. The group was not large because many mesh injured women cannot travel and stay home because of their injuries. The one thing that popped out of the photo was all the walking sticks and a wheelchair in the photo. I asked the woman who took it was this from mesh injuries and she said YES! A young, once vibrant young woman was sitting in the wheelchair and I am told she has 4 children. So if you want to go forward with a bladder sling, then do it with your mind open. IT COULD HAPPEN TO YOU!
Another thing that happened this week is that I heard from a young woman who has had mesh removal at UCLA and I met her while I was out there myself. Like many of us she had hoped her severe pain would go away once the mesh was gone. Sadly she has just been diagnosed with pudendal nerve damage. This woman is young with a young family. She told me she is not sure how on earth she can live with severe nerve pain the rest of her life. I had nothing to offer her to help because nerve pain can be forever. Mine is femoral nerve damage but pudendal nerve damage means you cannot just sit down because it is like having someone do an extreme electric shock to your system. There are few options to help with this and none are good. I felt very sad the rest of the day after she told me and that too is why I am writing this blog. I do not want another young woman to wind up like her. Please, please understand that when a sling is put into your body it is right where the most complex nerves and muscles are located. Even the most skilled surgeon can catch into one with the large needle used to hook the mesh into your body. Don’t believe me? Check this out.
Don’t believe that these have been taken off the market because they have not.
So do your homework before you agree to this surgery. Needing a hysterectomy does not mean you are dying. You have time to devote to learning more. In a few days I hope to bring you a new blog with many questions answered about this by a really good surgeon, so stay tuned. I am not giving up until YOU know ALL the facts.
Update. For new information click here. http://meshangels.com/2014/04/mesh-will-i-get-complications-in-the-future/