Give Yourself Permission to Live

Over four years I have watched many women’s journeys through the quagmire of mesh injury and have been through my own journey. I also see so many women who are only just at the beginning of their journey, or stuck in the middle. I have watched as husband’s finally get on board and realized without their intervention, their wife would not make it or ever live again. If you read the words of my daughter you will realize all this takes time. Fortunately for me whatever I said I wanted or needed to do, she got on board and we hoped for the best. Because of that, she made my journey easier.

This morning I read something a woman who is still quite young, wrote asking how you are supposed to feel after mesh removal. This woman’s story is like so many out there, however many do not stand a chance at a future because their families are not on board to help or believe them. But her husband did get with the program, took his retirement money he’d built up and bought an old used motorhome to get her out to UCLA.

I have known her for going on three years and she did like so many women. She thought that a well-known doctor who advertises everywhere, could remove her mesh. After all he said he could, so she believed him. I was not that long into my journey of learning which doctor you could or could not trust, but I was hopeful for her. But… sadly her bad journey then became a nightmare. She got worse not better. In fact she was in such severe pain day in and day out for the next couple of years and many times wanted to just give up. I have tried to help over all this time, but my problem is I am just one person and there are absolutely thousands of women like her who are also struggling. But I did keep up with her progress.

The old motor home they bought with the little money they had, broke down many times on their first journey to UCLA. At times they wondered if they could make it out there or if they would have to give up. But somehow they repaired the vehicle and kept on going. She met Dr. Raz for her first consult and had hope for her future because he believed he could help her get better. Then was the long wait to have her surgery but like all badly injured women she couldn’t believe it completely or simply give her trust to another doctor. I understood completely. That too is all part of this journey.

I know many, many women who have repeated to me that they can’t wait. I do understand how you feel because many times during the two years and seven months I waited after the mesh was put into me, I thought I could never wait that long. I was absolutely sure I would be in a wheelchair and things would get so bad I would not be able to take that flight. But when I felt that way, I reminded myself about all the things I wanted yet to do. All the things I wanted yet to learn. And I knew that to my family I was worth saving. So I kept fighting to stay as well as possible. But it was never easy….

I want every woman to know I cannot hold you up while you wait. Only you can do that. But… if there is any chance at a better future, I can tell you in all that there is one man in the entire world who can help you. You may think I believe I know everything about mesh and you think ‘how can I’, because I don’t have all the answers. You are right and I don’t pretend to have them all. But… I have dedicated the last four years of my life to learning. Not just my own issues but those of hundreds of women that I have given my time to. So if you want to do that, then and only then can you set yourself up as someone who can help other women and do this job without pay seven days a week.

This morning when I read her words I knew this young woman was going to have to work at changing how she has viewed her world for the last several years and that will also take time. She has a young son whom she has missed all his baseball games and school events. She has watched as friends abandoned her and family who never believed her. She is so used to it all and she doesn’t understand that now she has a new job to do. She has the job of learning how to live again.

Life is all about changes. Many are exciting but many more are filled with anxiety. Humans are more comfortable with living in the same house, doing the same job and seeing the same people throughout their lifetime. It makes them feel safe. But… it is only an illusion. Through your life many changes will be thrown upon you and you have to learn how to deal with them.

It is the same for this mesh journey. You were thrown into this mess, lived in pain and agony, lost friends who you thought were dear, your family gave up on you and some left your life. And you could not do one thing about it because your mind was filled with helpless pain. I understand it all.

One week ago Dr. Raz removed all the mesh that was in her body. Before her surgery she had the translabial ultrasound, urodynamic test and cystoscopy done by the very capable hands of UCLA’s trained technicians. I’ve been through it all myself and realized the absolute difference in what they will do for you at the Urology center at UCLA. They know what to do and how to do the best job. I knew how she would feel when she went through these tests and then saw Dr. Raz for the results. Amazement at the capability and care as the tests were done. Then sadness and anger at the result that mesh was left in her body, after she was told it had all been removed. Not just a little mesh, but a lot of mesh.

The feeling of loss is tremendous. Loss at all the time she had missed with her young child. Loss at the times she could not be with her husband the way a woman wants to be. Loss of her career. The losses are endless. But there is light after mesh removal.

Now she can look up to the sunlight instead of back into the darkness. Yesterday the news was good when Dr. Raz removed the catheter. She could pee again and had no retention. I was thrilled for her as I have been thrilled for the hundreds of women who at last get all the mesh removed and can use their bodily functions the way they are supposed to. No it wasn’t that way for me, but I am one of a small percentage of women who go to UCLA for removal. It all depends on the damage done over time.

So now she has a new job to do. She has to give herself permission to live again. She needs to find a way to move forward and be happy and the first step begins with healing her body and healing her close knit family. Then her mind will heal on its own. It just takes time. So please if you are struggling to do this on your own then find a support group where other people are doing the same. Find those who are moving forward, not staying in the past. Find positive hope, not misery. It is time for you to live again, not spend the rest of your days living with fear.

This young woman and her husband and son have yet to make the long journey home in a very old vehicle across many States. If you have a couple of dollars to spare and can help them with the repairs they need to do before they make this journey, you can give a little here

Later she herself wants to write in her own words on her own blog about what she has gone through and I will add a link here when she is able to do it. It will take time of course. I have written very little about her here because I don’t like putting words in women’s mouths. I prefer they use their own words because I cannot do their stories justice. Not long ago I learned a very powerful lesson about allowing someone else to write about you and how you are doing. Unless they live my life, they really cannot do it justice and believe me my life is far from simple or easy.

3 Comments

  1. Laura Thayer

    I am so sorry to hear about the pain and suffering. I too am going through it and am realizing that it ultimately is learning to live with it. It is important to try to focus on music, reading or something positive in life and try to continue living each day. So much can be cured in life and I pray for all the ones who are going through it. It is very isolating but you need to always try to focus on something positive (I have 2 cats).

    Reply
    1. lavalinda

      Laura you are so right. Having something that makes you very happy also helps you stay well.

      Reply
  2. Adrenna

    Thank you again for having this website. I had a bladder sling out in that eroded into my bladder and vagina (causing bladder stones). It took the doctors where I live a year before they found all of the stones and the mesh in my bladder. I found your site and contacted UCLA to get it out of me. Dr. Raz had a long wait time so I saw Dr. Kim from the same office who trained under Dr. Raz. I had my mesh removal on April 1st (I thought it was fitting since I felt like a fool letting them put the stuff in my body in the first place). My surgery was 5 hrs long and I had infections afterwards. They had to leave about 10% of the mesh inside me since I was told I would loose total control of my bladder if they took it. Just typing that makes me want to cry for I just turned 47. I went to the doctor last week because I was feeling bad and in pain and again, another infection. During one of my CT scans they found an infection in my intestines as well. Well I am having terrible stomach pain still and am trying to see if that remaining 10% is causing infections to keep coming back and my intestinal problems as well. I didn’t have these problems before the mesh.

    I am lucky that I have my family, friends and coworkers support. I work in a research center and they do research on chronic infections so they understand my dilemma. I feel better than I did before the removal, but not as well as I felt I would be 3 1/2 months later. I get very tired very quickly and some days I just want to disappear. Each infection since my removal has turned up resistant to one antibiotic or another. I honestly don’t know when this will end – it can be so frustrating and makes me so sad. Has anyone else had stomach issues after their partial removal?

    Thank you again Linda for this blog. It sent me to UCLA and even though they had to leave some in place I know that my removal was very complicated (per the doctors at UCLA) so I would have been butchered going elsewhere. I just wonder if this is the best its going to get?

    Reply

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