My Fascia Sling Surgery Part Fifteen

The tears are flowing………….

I cry for me and the thousands of women around the world who are mesh injured. I cry for the number of surgeries we all have to endure. The amount of stress caused to us and our loved ones. I cry for the struggles we all face and the constant pain and suffering of well adjusted and healthy women, who are no more. Mesh is a journey through a bottomless hell and no one cares. It is the largest medical travesty of our times that is easily covered up. All in the name of money………………. Those who do this should be ashamed.

I did not want to write about my latest news earlier because I wanted to finish the blog about the past two days of setting up the IV treatments and I did not know what was happening until I heard back from UCLA. I just did. I now have to adjust and resign myself to dealing with something else in this mesh journey through hell.

Right now I am so bloody angry at the woman who put the sling in me in the first place without telling me of any complications or what the product was. I am so angry at all the doctors who put these slings into thousands of unsuspecting women that then send them on a down spiraling journey through mesh hell……… A journey so deep and dark without any end in sight.

I want to scream, kick and beat down doors. I want to stand at the top of a mountain and yell to the women of the world “Don’t do this! Don’t believe it when you go to any doctor who says to you ‘I don’t use that mesh’. Walk out. Say “No” to the liars and seek treatment only with those who do not use mesh. Don’t watch everything you have worked for be lost to you, all because of mesh.

Now what? You all know I had had a catheter for seven weeks since this surgery April 17th. I tried to remove it after two weeks and ended up in the ER, in excruciating pain. Then the culture that was taken at the hospital that day revealed pseudomonas. The fight began with many trips to doctors and much arguing for my health with no results. I became worse until finally a new PCP took charge and began helping me heal. I had read enough to know it was not an easy infection to cure and may take more to bring me back. It you read the last post then you know how hard this has been and the awful things I have discovered about our health care system in general. I will never think the same way again. My eyes are no longer those of an innocent who believes if you go to the hospital, then you will get help if you have the right insurance.

Mesh women have been victimized in more ways than one. They have been shunned and viewed as lepers by the very medical system that let them down to begin with. Many doctors around this country would rather let women die than offer then good healthcare. This is morally wrong……. Without being able to fly out to UCLA, women are left to die a slow infection filled death, so we borrow money or sell things to go to the only hospital that takes the greatly suffering and tries to restore them. So many other doctors decide we are not worth living. That is the truth about mesh complications.

I beat a path to the doors of UCLA in the hopes of living a better life. I thought just getting through the first removal surgery would be the key to my wellness plan. That was the third surgery I had had in my entire life. The first and second by the surgeon who put it in me just over three years ago. All these surgeries were due to bladder sling mesh. To get better from these surgeries I did everything right. I allowed myself to heal slowly. I did not drink, smoke, drink coffee and I helped my body go through the trauma of a surgery that is hard on any woman’s body with the help of healthy eating and supplements my body needed. Even when I found myself with extreme incontinence I worked on my anger issues. I knew I could go back and be fixed and I did. That was seven weeks ago.

Where am I now? I had not been able to remove the catheter until the self caths arrived and they arrived yesterday morning. At around 11 am I removed the catheter and set up a plan. First I would stay calm and wait to see how everything ‘worked’. I took an exercise book and pen and decided I would keep track of my urine outtake either on my own or with self cath. I wanted t stay positive. So when at first I did no more than 50cc on my own I thought my bladder was sluggish. Then I self cathed, which for me is in a slow and difficult process because I am no spring chicken and I have a damaged right leg. I still did not get upset when I removed far more than I could do alone. Before I went to bed last night I tried to go but barely did anything. I felt down but thought over night there would be a miracle.

I awoke at 5 am. I barely did anythingagain, no more than 50 ccs and I self cathed. Then I knew I had major retention. I first sat down and cried and wondered what now? I made some tea and wandered around doing a few normal things. Folded laundry and emptied the dish washer. But I could not stop thinking. I finally emailed Dr. Kim and Dr. Raz together. I knew I had a problem and told them I believe there is an obstruction. Dr. Raz said it could be an obstruction in the sling. Dr. Kim told me to call and set up an appointment. That sounds simple but those of us who have done this know it isn’t always so.

I don’t want to just fly out there and be examined. I already know I have a serious problem and I need tests and yet a fifth surgery to fix it. It costs a lot of money to go out there along with trying hard to find a hotel at this time of year. I need to know that I will have tests that no urologist will do here and perhaps the surgery at the same time. I don’t need to spend a lot of money and get nothing done. Somehow I have to get the office to work with me, not against me. But it is not easy. I finally heard back from Dr. Kim and she told the office worker to set tests up at the time I go out there and she said I could set the surgery at the same time and cancel if it is not needed. I am going to try to do that. I will spend any extra money on staying longer in a hotel after surgery. I love to be home in my own bed, but this time I want to stay until after the catheter is out of me. Finding a urologist here is impossible and I need to be fixed while I am out there.

Mesh complications come in the form of a nonstop runaway roller coaster. You barely catch your breath before it hits you again. More complications, another surgery and they wonder why we are all an emotional mess.

Somehow I will calm down and resign myself to yet a new battle. I am still working on the infection and of course worry if another surgery will make it come back. I have to find the funds to stay out there longer and when I am past this awful crisis I will work on it.

I know many of you will ask me the question would I do this again? Well, I felt like I had little choice seven weeks ago but if I could have viewed my life through a future mirror I would undoubtedly say “No” You have to ask yourself who would say yes when you have an IV in you and a large dose of antibiotic running through your veins. All I can wonder is “What was this all for?” There is no good answer.

But had I not had this surgery, I would be lying in a pool of urine soaked pads and wondering what to do now and should I take a chance? However here I am again, wondering what to do now.

I am battle worn and so immensely saddened to not be able to live the decent life I had planned on. I’m tired of a journey that is never good news. I know my female insides are full of surgery and mesh induced scars. I am no longer the female I was and now wonder if I will ever be able to urinate on my own. It is a sad state of affairs.

So don’t ask me those hard questions about this surgery or ask me what you should do because I can’t answer. I am injured not only in body but in my soul and I am barely holding up right now and not a lot of good for anyone else. I am the legacy of mesh…………….

As hard as it is for me to write today, I promised to tell you the truth. I also promised I would tell the whole world the truth about what it is like when you have mesh complications. The world has to know the truth in order for anything to change……….. Too many women are suffering and their lives destroyed. And we cannot close up shop and allow this to happen to so many other women. We have to keep yelling until someone will listen.

I hate to say this but my awful mesh journey continues……………

13 Comments

  1. Laurads.net

    I am so sorry you are going through this. I feel even worse that I have been dumping on you without knowin exactly what you have been going through. You are in my prayers.

    Reply
    1. lavalinda

      Laurads, all of us need a place to dump from time to time and I was happy to help you. Don’t worry, I’ll somehow get through this awful time too.

      Reply
  2. DebC

    I’m so sorry, Linda. It is so frustrating & hard for me to see you going through so much too. Nobody deserves this… & you really do deserve & need some relief. I wish your last surgery had not resulted in so much hardship. It seems to me a good portion of your problems has just been trying to find a doc nearby that would actually help. It’s so hard to believe there are so few docs ought there who actually can & will help us. Yet, they all keep putting mesh in. 🙁 There are no easy answers when it comes to mesh. 🙁 Thank goodness for the internet & at least some of us have connected in some ways. I shudder to think how alone & even more hurt so many would be without plans like your blog to bring us together. At least we find understanding with each other, but that does not help much when we need real medical help, I know.

    Please hang in there. Things have to get better somehow. <3

    Reply
    1. lavalinda

      Thanks Deb. Somehow I am going to find the answers and get the help I need. I have not given up.

      Reply
  3. peggy

    So sorry to hear you’ve had so many problems with this last surgery. You have helped so many and do not deserve this !! I hope and pray that UCLA can help put you back together again, and that someday you will have a somewhat normal life.

    Reply
    1. lavalinda

      Peggy I am in touch with them and working on a date to get the help I need.

      Reply
  4. teresa hughes

    Dear Linda
    I hope and pray that you can get some relieve soon.
    I think of you a lot and of how you are helping so many women just by reliving your journeys which must be so hard.
    Thinking of you always.

    Teresa xx

    Reply
  5. sylvia Lafferty

    Dear Linda,
    Will you have Dr. Raz do the surgery, if needed? Please have him do it if you have a choice. I am praying that they will get you in very soon, I can’t stand the thought of you suffering any longer. Please know I am faithfully praying for you.

    Reply
  6. Linda Nachbar

    Linda I am so sorry for this struggle. Your blog has helped so many. I pray The Lord will carry you thru this valley and you will see many signs of His touch.

    Reply
  7. Barbara Vance

    Linda~my heart hurts for you. Please keep holding on and remain strong. Keep fighting for yourself and the rest of us. We need you! I was in such despair before finding your blog, now I have hope. Eventhough its difficult to read, I for one appreciate your honesty of how difficult this has been for you. I truly believe one day our voices will be heard and the makers of mesh will have to answer for the horrific pain they have inflicted upon so many of us! Prayers to you daily~

    Reply
  8. Shirley Ryan

    Linda you are one strong cookie Sister. You keep fighting and God be with you to keep you strong and heal you. You are so loved. Im praying for healing and strength. You know how to reach me. (((((HUGS)))))

    Reply
  9. Linda Patterson

    Oh Linda, I’m so sorry that you are going through all of this. I’ll keep you in my prayers.

    Reply
  10. Nancy Mikitka

    Oh, Linda, I am so sorry and so sickened to read your last blog posting. I know how much you have helped me and so many others by your honest writings along with your willingness to opening share your mesh nightmare. I am angered along with you at the doctors who continue to use this incidious mesh. I wish there were a way to force each and every one of them to have it implanted in their bodies so they would experience what travesty they have brought on those they have damaged. I am angered at the companies who made the mesh not caring and even hiding how damaging it is. I am continuing to pray for you and for Dr. Raz or Dr. Kim to be able to once and for all fix this problem for you so you and Kim can get on with your lives. Please know you are loved and cared for by so many of us who are deeply grateful to you…for without your journey we would be suffering alone. (((Hugs)))

    Reply

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