Your Mesh Story & Mine
There is not a morning now that I don’t get up without I feel very Blessed. It is very simple. The mesh that was destroying my body is out! But I am mindful of how many women still live with it in them and the terrible complications that they have and they feel desperate. You see they look normal on the outside. Until it reaches the stage when they can no longer walk without aid, they don’t look ill. One woman told me this past week that her doctor told her to forget about getting it removed, she should just give up! How dare he? Would he have said that to a woman with cancer? I think not! I tell women every day, never give up! It may be so hard that at times that you feel you want to, but your life is valuable to someone. You are important and your time to go has not yet come. Find the strength to keep fighting.
There are many, many days I get desperate one line sentences from women. Those lines are not that they expect me to help them, but they just want to be on record to someone who understands their pain. “I think I will die soon if it isn’t out of me”. That is the agony women feel. The depth of mesh injuries can never be measured. And it still goes on. One woman this past week left a comment here that she wished she had found my blog sooner. On December 28th she had a Mini Arc sling implanted in her and for a few days all was well. Then the delayed reaction came in the form of groin pain. Then the sleepless nights in absolute agony. Now she has joined the fight to be believed by her doctor. More than likely she will be told “Give it time. It’s just healing”. IF she is lucky, she will manage to get it removed within a year. A year of agony, struggling to work if possible to keep her job and insurance. Endless trips to doctors. Endless tests. “No it is not the mesh” will be the norm. While all this is happening she could be permanently be injured. And… her sex life is over for now and perhaps forever if the wrong doctor attempts to remove it. If she is lucky and has a great partner and family she will be shown compassion. But they too will wear down of the endless pain she is dealing with. There is so much pain with nerve injury and I know because I lived it for two years and seven months until it was removed. Even now I am injured by mesh and only time will tell if the nerve can be healed.
If you are reading this and have not had a sling implant yet then I implore you don’t! If you are injured by a bladder sling implant then I implore you please work on getting it removed by the right doctors who can remove it all.
It is because of how I feel that I wrote my story on the 12th January 2013 and dropped it into the UCLA ‘Tell your story’ site. I wanted to give my thanks to the man who helped me. If you have been to UCLA and you feel the way I do then please add your story about your surgeon, whether it be Dr. Raz, Dr. Kim or Dr. Rodriguez. This is the link. http://www.uclahealth.org/body.cfm?id=2308
You see I am grateful to be enjoying the simple things in life again. I don’t live on pain killers. I have issues but they are mild in the scheme of what mesh does while it remained inside my body. This morning I stepped outside my house and looked at a heavy misty fog with the sun trying to break through for a beautiful 70 degree day and I felt so alive and happy. This is what I saw.
I had a great night’s sleep. I woke up and was laying on my right side, which is something I could not do until a few weeks after the mesh was removed. I stared outside and felt so absolutely grateful to the man who removed it, oh so carefully. I appreciate what he did for me and what he does for many women. Thank you is so simplistic and yet it says a great deal.
This is my story that I left as a thank you to Dr. Raz. Please leave yours. You can do it anonymously. No name and as little details about your life as you like.
Bladder Sling Removal & Dr. Raz
Three Cheers for Dr. Raz.
If prayers were smoke signals that you could see, I have no doubt that on any clear night, the sky would be full of them and many would be for the quiet unassuming man that many women know as Dr. Raz. That is because for many ‘mesh complications’ women he has been our savior after losing all hope. We’ve lost hope that we would ever feel well again. Lost hope in the medical systems of the areas we live in.
From the moment of our first encounter with this man we at last feel believed. Most of us have fought a system that tells us we are crazy, need antidepressant drugs and it is NOT the mesh causing havoc in our bodies. We fight when we feel ill to make a pathway to the doors of the Reagan Building at UCLA, so that we can try to live again. Many of us sell possessions to get there because we have been told about a wonderful surgeon who has both skills and compassion.
My journey began on June 5th 20112. I had sold my car to take that first step on the path of wellness and I flew from Houston Texas to L.A for my consult appointment. I was crippled by the bladder sling that had been placed in my body on March 9th 2010 and needed a walking stick to get around. My TVT sling was pulling at my nerves and muscles and as days went into months, I was losing my ability to walk and lived in constant pain. There were other issues to combat such as my bladder would not empty and infections were the norm. I was frustrated and angry because the doctor who had implanted it in my body did not believe I was suffering from mesh complications and told me I must have had these issues before the surgery.
I had gone through so much money, had debt and was beaten down. But then I decided to do something about it. I began a blog and wrote what had happened to me.
They say “If you build it, they will come” and come they did. At first other women told me their story was my story. They too did not know what to do or where to turn. Then came other women who had been through mesh removal and had survived. They told me there was one man who could help but it meant more sacrifice and a long journey. I listened and I learned. I learned of doctors all around this country and the world who were performing partial mesh removal and women remained ill and in pain. I shared with others while I waited for my turn at a better life. I could do nothing until my Medicare kicked in June 1st 2012 but three months before it did I got busy. I purchased the right type of insurance supplement that would ensure I could choose where to go to get the help I needed. Then I made the appointment and made other arrangements to get out to UCLA.
When you are sick and crippled it is not an easy journey to take. I decided to write about every aspect of my journey including hidden costs and comfort. I shared so that others knew how much money they would need. You see mesh breaks us. It ruins not just our lives but our financial stability.
I don’t know of any woman who does not feel uncomfortable during a visit to any urologist office, but for some reason I didn’t. The first part of my journey was over and I was now in the hands of Dr. Raz. My first impression of him was how calm and unassuming he was. His quiet exterior made me feel just as calm. He listened as I told him my pain level. He carefully and gently examined me and paid attention when he saw my tears. He BELIEVED me and that was amazing. He restored my faith in doctors. Or at least in one doctor.
When I left that day I had a date for surgery in October. It was a long wait but I knew the wait would be worth it. The time passed and on October 11th he was by my bedside before doing my surgery. He reassured me and I felt calm and unafraid. Soon after I woke up he came to see me and brought the mesh to show me that he had removed. He told me it was all out but I had made him work quite hard because he had to unravel it from my nerves and muscles. Regardless at how horrible it sounded I knew he was the master at what he did and my life would be better. Not perfect but better.
I journeyed home after surgery and wrote in my blog as soon as possible. I still have injuries from long term mesh but I wanted other women to get out there as soon as possible to give them the best chance at full recovery. And I wanted to give them hope!
Now I am waiting for another surgery date to go back again this year to have my incontinence issue fixed WITHOUT using mesh. I am waiting for a response for that appointment from the administration and although I feel frustrated by the wait, I know I am going to the right hospital and the right man for the job.
When I go for that surgery I will write again about what the surgery is like and the outcome of my journey. There are many women like me who have to go back for another surgery and they want to understand what it is like before they go and prepare mentally. I will do my best to allay all their fears and Dr. Raz will do the rest.
So here’s to Dr. Raz. May he live a long and happy life. When his time comes, he will leave behind a legacy of hope and love and a lot of women who would not be ‘living life’ without his help. If we could all be in a room together he would hear the roar from a crowd “Hi Hip. Hip Hip. Hooray”.
This is a link to my blog
This video will show you what I was like before I had removal surgery. I have not had a video taken since because I am still recovering, but I am hopeful to walk without pain one day.
It’s not an exciting video and I look like a really old woman, which I am not. I don’t like everyone seeing how bad I look but it is the only way I can show mesh affects real people. I am a woman and I would rather look like a picture of health and happiness, not this broken down old lady. However if this works, it’s worth letting go of my ego.
Until I had this surgery I was always up a ladder working on my house. I had a dream and a future and worked hard to get there. This product took all that away from me. I am a real person and this proves what can happen to women because of mesh bladder slings.
This is the video my daughter took of me in July 2011. It was taken on a good day but there were many I did not try to leave the house because of so much pain. At times I resorted to leaning heavily on a walker because the pain was so intense in my groin, hip, back, thigh and down my leg. It radiated in my pelvic region and it moved constantly day in and day out. I still have difficulties but I no longer use that cane. I still use a simpler one when I go out but around the house I get around without any support. I am hoping to regain my life and go back to working on my house as I did before this surgery, but I know the injury took so much from me and it will take a long, long time to see how much I will improve. http://www.youtube.com/watch?v=UNWf7F2c–M