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
http://meshangels.com/2013/01/thank-god-for-dr-raz/

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

 

 

8 Comments

  1. Angels123

    Amen to everything you have said here Linda! Those of us who have been so fortunate to have had our removal surgeries already with Dr. Raz know that you are so right about this man. I never worried ever that I was with the wrong doctor once I met him at my first visit. Even after having my visit for all the testing and ultrasound there was a concern about what Dr. Raz would be actually able to remove. Even then, I knew this was the man for the job. I had endured over 3 years of severe pain and at the point that I was at I had little to lose. This was my last resort before having to start having trials with a nerve stimulator so I was extremely hopeful for a good outcome. I had my removal surgery January 3rd and I am so glad I did it. I knew immediately when I woke up from surgery that Dr. Raz had gotten it out. I could lay flat on my back for the first time in over 3 years. I have had almost 3 weeks of relief now and I will say that I wouldn’t change my decision to go from a small town in Idaho clear to California to seek help for any amount of money. I am eternally grateful to Dr. Raz for everything he did for me. I love that man and will forever be indebted to him for you see he has given me hope back that at sometime in the future I will have my life back. I still have pain but nothing considering what I have endured…nothing compared to the pain of a bladder eroding, of having a rectum encased in mesh, of having nerves being impinged and more…just nothing compares to the relief of having this mesh out. For anyone who thinks California is too far I d ask…and how has that been working for you…? You know the definition of insanity is doing the same thing over and over again and expecting a different result. So do something different! Take it from those of us who have already walked in the shoes you are in and trust that we wouldn’t mislead someone who is hurting the way we have. You just may find that at the end of it all you will wonder why it took you so long to go to see this wonderful doctor. Time is wasting and it doesn’t need to be. So quit wasting time and start the process now to get to California. Do whatever it takes! It is a sacrifice for anyone, and we all have had to incur debt or sell possessions to get there, but in the end it is your life and the ability to live it at stake.

    Reply
    1. lavalinda

      Thank you Angels 123. You writing here will also help other women fight fear to get out to UCLA. Many women struggle with this and like us they have to fight hard to feel better. It is a long journey and Dr. Raz is one man but he is doing everything in his power to help us all. Now we have to help ourselves.

      Reply
  2. Erika

    Hi Linda, I am very happy that you feel better, God bless ou for everything you do .

    Reply
  3. Julie

    Dear Linda, thank you so much for all of this wonderful information. I hope you are doing well and enjoying life more and more. I am very worried for my Mom who has had a transvaginal mesh implant and has been very unwell ever since. Her story is like yours and so many others who have written on your blog pages. I am determined to get my Mom to see Dr Raz despite living in NY. You mentioned getting an insurance supplement. My Mom has Medicare and Medicaid but no additional insurance, we do not have a lot of money, I am a teacher and my sister quit her job to help care for Mom. Will Dr Raz accept her Medicare/Medicaid or will we also need to get supplemental insurance and can you tell us what that insurance might be? My sister an I are very worried about my Mom’s health but your blog has given us hope that something can be done. Thank you for everything you have done!

    Reply
    1. lavalinda

      I believe that she can get an appointment with UCLA without problems. Call and make it soon.

      Reply
  4. cleo fernandez

    I will like to know which medical insurance Dr Raz take I have United health care and Cigna. I will like to remove the mesh sling, has done in 05/05/2006 since 2007 I have some problems

    Reply
    1. lavalinda

      Call them and ask. I have no clue. I am a patient and don’t work for them. This link will take you to many links so that you understand the journey it takes to remove mesh and how important it is to go to the right doctor. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey

      Reply
  5. Leslie dodge

    I was told for a year that the puss oozing out of my belly button, the inability to hold my urine without excruciating pain, and the inability to feel wether I was actually urinating or not was just me “healing”. 3 drs and 2 yrs later I walked into my new dr, told her everything and she is now sending me to a specialist to have my sling taken out. She flat out told me that I need it out NOW! And the scary thing is that the dr my original gp sent me to was suppose to be amazing (according to her). I walked in to find dog hair all over his office and dirty utensils left on counters. She assured me that this guy was the guy that could save my uterus if it could be saved. The first day I went to see him he scheduled me for a hysterectomy and bladder sling. He told me all about how safe his bladder slings were and I had nothing to worry about. He is truly the Kivorkian of uteruses and I beg of you if you live in AK stay the hell away from Dr. Biehl. And to top it all off I woke up having a reaction to the meds so I now have constant tremors (3 years later, still shaking), he told me it was no big deal and would correct itself and then kept me on pain meds for only 5 days post hysterectomy, bladder reconstruction, and vaginal wall rebuild. I still have nightmares about it even after 3 years. Once again his name is Dr Gregory Beihl so stay away!

    Reply

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