Surviving Mesh The Will to Live
I can’t tell you that I understand what some women have to go through because of mesh, because I don’t. However, I know what they have gone through because they stay in touch and they share with me and others so that they know there is hope for a better future. Hope and the will to live is the combination to finding a way to living life again.
Within the past couple of months I have been helping a woman get through the endless days and night of agony so that she could make it out to UCLA for the first time to see Dr. Raz. By the things she told me, it didn’t take a rocket scientist to know that he was her only hope for her to have a future at all. You see all I can do is encourage someone who lives in absolute agony to take the first step to make that appointment at UCLA. I cannot physically pick them up and transport them. I cannot make sure they make it out there when flying alone. All I can do is be here for them when they wonder if they can possibly do what is needed to begin that new life.
The woman I am writing about finally made it to see Dr. Raz last week. She was in a huge amount of pain and it overwhelms her every day. Against all odds she took it one step at a time and saw the man who can give her some form of her life back again. All I was was her cheerleader. But believe me I was worried about her because I was not sure if she could cope alone. Like most women money is a huge issue to going out to UCLA. She had to fly out there alone and to save money, but she did it. That will to live was so strong that she had to climb mountains to do it and you can too do it too.
This woman called me after her appointment with Dr. Raz when she got back to her hotel room because she was overwhelmed by his gentleness and kindness shown towards her. This is because the women who suffer mesh complications are treated horribly by many doctors. Or like this woman, they want to perform surgeries that have nothing to do with the real issue. Mesh is killing them a little day by day. All she wanted was validation from the hell she was going through and she found it. Now she has to find the strength and the will to survive until she has removal surgery in June. It won’t be easy. But I know she can do it.
I am going to use a small piece of an email I received from this woman after she returned home. I want you to know just how serious things can get unless you stop believing doctors who refuse to believe that mesh is hurting far more than helping. You have to make the right choice to save your life. I can’t do it for you.
THANK YOU THANK YOU THANK YOU…. There’s just not enough room to on any page to write it enough. There’s just NO way to tell you how so very grateful I am
for all you are, all you do, and everything you encompass Linda. You and everyone who are in each other’s cheering section are VERY LARGE WOMEN INDEED .
Obviously I don’t mean in size, it takes a very special breed of person to be able to reach out to so many when they feel (when I feel/felt) like there was nothing to live for.
I’m still reviewing flashbacks from my appointment with Dr. Raz. I think the one that left the largest impact is when he handed me the mirror after I asked him a question regarding “something that I see between my legs”), When Dr. Raz said “Sharon, that’s your bladder full of mesh, you have a grade 4 cystocele, all the stringy stuff you see is mesh, then he moved my bladder with a gentle finger and asked me if I knew what he was showing me, no I answered. THAT is your bowel coming through your vagina”, that is the enterocele. I think he was actually a bit angry when he asked ” Why would that doctor want to cut your bowel in 2 places and put mesh to support it”
You know, if it hadn’t been for the unbearable pain I have every day from the hernia mesh, I probably would have had that surgery, now knowing any better. I guess in a way this pain is a blessing in disguise. Can you just imagine the mess I’d be in if I’d done that???, …with all the other issues Dr Raz pointed out… I’d probably just signed away my life…
Thank god for small mercies..”
You should know that I don’t do this alone. Other women have gone through this and continue to reach out to these women who now have to take their own journey. I just received an email from one of them who continues to live against all the odds she was given. I want you to read it because of her wonderful inspiration to survive this. This lady just welcomed her third grandchild, the second to be born since her removal surgeries. She enjoys each precious day that she can share with her family. She was apologizing to those of us who continue to help other women. I had to smile because she has nothing to apologize for. She is alive and living life and that is the best news of all.
I want you to remember that you may not be able to do more than get through one hour at a time until you get the help you need, but there is life and there is hope. You have more life to live. More people to meet and more experiences to share. Me and the other ladies who try to help women were discussing our anger. I have no doubt you are filled with anger and I think these words of wisdom will help you too.
This is her email.
“I was so bad off and truly didn’t expect to make it until that first surgery. If my bowel had perforated prior to surgery I very well might not have. By then it would have been a relief to be admitted to the hospital to ease the pain. The 2 times I went to emergency they had to give me numerous injections of morphine before the pain even started to ease up and it didn’t last very long. Like you and many others sleep was impossible as was almost everything. I guess I was lucky in that the docs didn’t hesitate to give me pain meds, muscle relaxers and sleep aids, but even taking maximum (and sometimes more) doses of all of those there was no appreciable relief. I was 5 days in hospital first surgery and 3 second time. The sacral colpopexy mesh hoists the bladder and then is attached to your sacrum which can cause all kinds of problems as you can imagine. It had shrunk and twisted and adhered to my sacrum, colon, and sawed its way through my vagina. I was full of infection. Like most of us I understand the depth of the pain and the feeling of confusion, frustration, helplessness, and panic that these poor mesh victims suffer. When I found Dr. Raz with the help of Linda I had a glimmer of hope then gratefulness when Dr. Raz knew that the mesh was killing me and was willing and able to try and get it out when no one else would or could. I am one of the lucky ones. Even though I’m left with some significant problems I’m no longer in suicidal pain. I’m also thankful that my children are grown and very good to me as are many friends. I have great insurance (at least for 6 more months) When I started thinking about it these past few days I think it’s more outrage than anger that so many women are still not believed and that mesh is still being used every day. Maybe that’s just semantics. Outrage? Anger? Whichever it’s tempered with gratefulness and a commitment to change things.”
I also have been thinking about how much worse the mesh was and is than my cancer. Even with all of the chemo, radiation, and surgeries my chances of survival were 50/50 maybe 60/40 depending on who you talked to. But with cancer you know what you’re dealing with. No one is telling you that you don’t have cancer. No one questions your pain. Everyone is sympathetic and helpful. Even though treating it is not an exact science, you have a pretty good idea of what has to be done and there are lots of good oncologists to help sort it out. The other thing is that I felt a certain amount of control over my body and my cancer. I could eat well and exercise. I could have acupuncture and massage. I felt like there were so many things I could do to help my odds. With the mesh I felt like I didn’t have any control at all. It didn’t matter what I did the mesh wasn’t going away. The cancer was part of me, even if it was an unwanted part. The mesh was foreign. It was unpredictable. It was undetectable. I honestly felt like my body had been taken over by a robotic torturer.
Of course I worry that the way the mesh has taxed my immune system that my cancer has a better chance of coming back. I think most of us understand that disease is caused by inflammation one way or another. I’ve spent 6 years trying to keep my bodies inflammation low and the mesh was wreaking havoc the whole time.
My husband died 7 months before my mesh took over my life. In a strange way I was glad he didn’t have to see my through this. He’d stepped up to the plate through my cancer and as we all know serious health problems are not easy on a relationship. I feel like I’ve already used all of my “help” cards with the cancer. I know most of my friends and family don’t feel that way, but I do. I can relate to Peggy not wanting to burden anyone. I also know that sometimes you have to and that people actually feel better doing something..
So, Happy Valentines Day! Thank you one and all. I’m sorry I’m not much help right now. I’ve had 2 granddaughters born in the past few months and I’m hands on and so happy to be able to pick the little darlings up which I couldn’t have done a year ago.
When I read her email I thought about all the women who said that they wished they had cancer because it would be better than dealing with mesh. People would be kinder. Help would be there from family and friends but it isn’t because no one believes this is so bad. I want you to share this blog with anyone who ignores you or thinks there’s nothing wrong. I don’t know if they will get it, but they should.
With love and support for a better future.