Another Woman’s Mesh Hell
Why do women reach out to me and tell me their most heart wrenching stories? It is because at night when they are in pain and cannot sleep, they go to the Internet and find me. Then they pour their hearts and souls out to me because there is no one else who understands what mesh hell is really like. They know I am honest. They know I tell the truth of what is happening to women so that other women can read it and perhaps save themselves from this kind of life. And they want their truth to be known even though they cannot personally tell it.
I had a bad night last night with a few times I had to get up and do self cath. I had little sleep and I am very tired. But this story woke me up to realize that things could always be worse. I could have had the mesh in me as long as this woman has and now she is worse off without any money to help her have it removed. She is the kind of woman that we need a safe house near UCLA for women to go to when they have their consults and surgeries. This is why Pat wrote to Angelina Jolie. Pat wants so much to start one out there as a nonprofit house where women can talk to each other and a therapist while there and they will be allowed to get some of the horror of dealing with mesh and doctors, out of them. Right now it is just Pat’s dream because we have no funds. But I hope one day it will truly happen.
I shared this woman’s story without using her identity because she wants to remain private. But I am sharing it because there are so many doctors who have gathered together to make sure our voices are drowned out. Sadly there are women at the center of this, who say mesh is good. These women make money from stomping over injured women’s bodies and they should be ashamed. I can’t say who they are but if you Google enough, you will find them. They will add to your doctor’s disbelief that mesh is causing your hell. Don’t listen to them. You know your own truth. You know your own body. Believe in yourself and get help soon.
So here is a story of yet another woman in pain in her own words.
Here is my story
In 2001 I had surgery for urinary incontinence. My doctor said it was gynecare tvt mesh sling and less invasive compared to the old way. I trusted him. After the healing period I returned to him because i was having a pain on the right in my pelvic area. He said it was not from the sling and that everything looked good. Three months later I could not bear to have sex and my husband said there was something picky inside me. Again I go to the doctors and he tells me the mesh has eroded through the vaginal wall. He says he can repair it in the office. This was extremely painful. He said I was all set. Well in 2004 after never really feeling good I was trying to please my husband although it was very painful we noticed blood in the bed and my husband said I think something inside you bit me. His penis was cut and bleeding. Again I go back to the doctors and he says the mesh has eroded again. He tries to repair it in the office again but this time I just could not handle it and I had to make him stop. I had another surgery where I thought he was doing the repair, but he said he could not get the mesh out so he put another one in. Since then I have never been the same. The pain over the years kept getting worse and he said that maybe it was my bladder or an ovary or fallopian tube. He sent me to a gyn doctor who did ultrasound, and he sent me to a urologist and gastrologist, who sent me back to the gyn doctor. I explained that I had a colonoscopy normal, bladder biopsy normal, cystoscopy, now I am back here. I was in so much pain and he said let’s do a exploratory surgery and see what we can find. I refused because I was already messed up enough and no one could tell me what was wrong with me. After being in pain for a year by boss made me go back because she thought I was dying and she wanted me to find out what it was before it killed me. I went back and told him I would have the surgery. He said he found nothing but scar tissue which he removed what he could. All else was fine. Keep in mind this gyn doctor went to college with my urogynocologist and they are good friends and work for the same practice. Finally I get a second opinion from a gyn doctor at the hospital where I worked as a computer analyst. She took one look at me and said I was a mess inside. She said I needed to see a specialist, and referred me to another urogynocologist. He told me it was my pelvic floor sent me to physical therapy for over a year, gave me pressure point injections, Botox, mesh eroded again and when in to repair the erosion. And now he says he has tried everything and nothing has helped, the only thing left is to try to remove the mesh, but he has only done it twice. I asked my primary care doctor for a out of network referral to a doctor at the —————, I live near Boston, they refused to give it to me and they gave me referrals to two other doctors in Boston and after wasting my time and money neither of these doctors have every done it and they said keep the doctor you have. I don’t want a doctor who has only done it twice. During all of this I have to stop working because I cannot sit and I was closing my office door and laying on the floor to make it through the day. Finally I had to give up my job. I applied for disability and was denied. I have spent almost all my retirement money and we are broke. I was making $66,000 a year and now I am begging for Social Security Disability and they are telling me I may feel discomfort but I can sit for 8 hours and to go back to work. I started seeing a psychiatrist because I am so depressed. I think no one cares and I can’t afford to go to UCLA. Thanks for listening. T from Boston
I have sent this on to my small group of sympathetic helpers who will do all they can to let her know we all understand and will be here for her. Other than that all I can do is tell her to set up on the Youcaring site and try to raise funds to go to see Dr. Raz for a consult. That is the first step. I don’t know if Obamacare will help women like her when the new plan comes in but I hope it will. Right now there is nothing else to help these women.
And those awful people say that mesh complications are manageable. How do they sleep at night!
If you are like this woman, please go to this blog and begin a fundraiser to help you get out to UCLA, http://meshangels.com/2012/11/mesh-removal-no-money You deserve to live a better life and this will be the first step on your own journey.