Reflection on My Mesh Removal Surgery

It is still hard for me to believe how long it has been since mesh was placed in my body, but it has now been just over five years. For the first two years and seven months I had a lot of time to deal with my constant racking pain and I used it wisely because of this blog. I spoke to hundreds of women during that time (and since) and watched many, many women go out to UCLA and have their mesh removed long before I did and honestly I envied them. I was out of money trying to get better after my mesh implant and could do nothing until I turned sixty-five and would be eligible for Medicare. After listening to so many women who went to other doctors for their mesh removal and then they would call me with updates, I knew I had the best chance of survival if I found the money to go out to UCLA.

A few days ago a woman posted a comment searching for a doctor in her area. I understand how she feels because my intention was to stay as close to home as possible. However, listening to women made me realize it would be a huge mistake. This woman also said she does not have the luxury of going out to UCLA. I know she is worried and I understand but what she doesn’t know is that going out to UCLA was the hardest thing to do and certainly luxury did not come into it. In fact I am one hundred percent certain that 95% of women struggle to find the money to go and worry about making that commitment so far from home.

During the time I waited, money was a constant worry as every bit of savings I had was gone and I was still suffering with a lot of pain in my leg, hip, back and groin. So as I spoke to my daughter about where I wanted to go, she said to me that because I was unable to drive my car, perhaps I should sell it and use the money to get the help I needed. My first thought was “OMG sell my car?” This is because I had never owned a new car in my life and had bought that car with money I had saved up in a small retirement fund from when I worked part time at H&R Block Income Tax Company many years ago. My daughter was only two years old when I took a course with them, because not being from this country I never understood the income tax rules and it frustrated me when I tried to do my husband’s income tax. We always spent money going to someone else because his work was overseas. However they still made mistakes and we had sat more than one time in an IRS office providing an IRS person our details. So my husband suggested I could take a course while he was away working on a rig.

I had met my husband in England when on a trip with one of my sister’s over Easter weekend in 1969. Everything American was foreign to me during the early years of our marriage we had been living overseas. First we married in Singapore in 1970 and then while pregnant we lived in Newfoundland Canada. When our daughter was a baby we lived in Perth Australia, before spending some time in the U.S where my husband was building a rig for another company. After that we lived in the Far east again, the Caribbean twice, Scotland and other countries. We knew once the rig was built we would be going back overseas, so I decided I would give the course a try. As it turned out I was able to finish the course and the company offered me a job for the tax preparation season. My in-laws lived close by and my mother-in-law offered to keep our toddler daughter for a few hours each day. So I worked four hours every morning then went back to pick her up at their house. I was lucky to have such wonderful in-laws.

Over the years of my marriage my husband and I were always careful with money, well aware that his age may mean health issues and we needed to have money put aside. He was seventeen years older than I. So we never bought a new vehicle because he was quite a brilliant man who could fix anything. So second hand everything became a way of life. However, a few years before his death he went through prostate cancer and then things went downhill and he began suffering the ravages of dementia infarct. His memory was up and down and his health declines from small mini strokes that had lasting effects. So he could no longer fix things and got very confused over things he normally did. It was so sad for me and my daughter to watch his decline.

When things became bad, I knew I had to buy a better car so I could take him to doctor and hospital appointments. So I pulled my savings from that fund and bought a Saturn. I was thrilled with having a new car for once in my life although I had been worried about spending those funds. But living in this country you have to have a car, especially in Texas as there is no public transport running everywhere as I had experienced growing up in England. You couldn’t just hop on and off a bus to get somewhere. So saying goodbye to my car several years later was not easy to do. But I wanted the best chance at removal surgery and I had to make the sacrifice. Not only that but the car sat in the driveway more and more because of my leg pain issues and it had to go. It was just hard to think of losing something that meant a lot to me, but I reasoned it was just a thing. My health was more important.

Today I am writing this because I know so many women are wondering how to get the money to go out to UCLA and I want them to know I understand their dilemma and what it takes to do it. I had to wait until Medicaid for the surgery because there was no such thing as Obamacare and I had a pre-existing health issue caused by the original surgery. So buying insurance would cost me far more than what it took to keep a roof over my head. I did not know the things I know now, that someone living on a small income can get a free flight for them and a companion. I had found out from another woman who went there that I could get a discount on the Hotel Tiverton at UCLA because it is set up as a non-profit. Once I had the Medicare in place, I did the paperwork which was truly a fight to get my personal care doctor at that time to sign off on the paperwork. Honestly he was a jerk and I should have found another before I went for surgery. Thankfully I have a better one now.

The discount helped but had its limits which is why my daughter hunted to find a better deal at a hotel before my surgery, saving the discount for the time of surgery and a couple of days after, before we had to move to a cheaper hotel until it was time to fly home. I flew home four days after removal but money was so tight, I had no choice. Was it wise? Maybe not but sometimes you do what you have to with how much money you have available. If there had been a choice I would have waited a full week after removal and let Dr. Raz remove my catheter. But I wound up doing it myself at home and was honestly scared to death, but got through it okay.

Since that time I have talked other women through catheter removal because they too couldn’t afford to stay longer after surgery and perhaps that is why I had to learn how to do it myself. No matter the reason it made me realize when the chips are down you have to do what you need to do.

Fast jump forward, it will be three years October 2015 since Dr. Raz removed all the mesh and the anchors that held it in my pelvic area and I am much wiser woman. Honestly I am also much sadder because I know what women have to endure after mesh is implanted in their body and that is why I keep writing this blog to warn them what can happen. I know how doctors won’t help you once you have an issue and just the words “I mesh surgery” will have many doors slammed in your face. This is because no one wants to admit there is a problem with mesh.

To make a decision to fly thousands of miles away from home, spend a lot more money and fly back across the country with a catheter still in was really difficult. But it was the best decision I made for my future. But it was MY decision and you have to make yours. You will have to make sacrifices to go out there and it will be the scariest thing you will ever do, but I am so glad I did it. I will never be the same as I was before my mesh removal because the damage was done, but I am so much better than I was during the waiting time. I now chant to myself “I am mesh free”.

I did not write about my removal until I was home about four weeks later. While I was out there I wrote about tests before surgery, costs of the journey, where to stay, how to get food, travel to UCLA from the Tiverton and anything I could think of to help others get through the journey I went on. It is scary to do it, and I wanted to share my experience to take away some of the fear. You can go to this blog to read many blogs about my journey

World Mesh Awareness day is coming up May 1st. I invented the day because what has happened to us is ignored by the world and it is as if it has never happened. Women deserve to be recognized for the pain and the terrible injustice that has been done to them. I will post another blog as we get closer to May 1st and I hope you will be brave enough to share it with every woman you know. Let’s not let this happen to any more women. It is up to use to try to change things and give them a chance at a future. We can’t change what has happened to us, but we can pass it forward to let others know how much we care. This is last year’s blog.

13 Comments

  1. Heidi cyr

    From reading what you wrote it gives me a hope that one day I will be pain free and might be able to travel to UCLA to get my prolene mesh removed! Thank you for that.

    Reply
    1. lavalinda

      Heidi I hope you can too. It is a long and terrible journey that none of us should take.

      Reply
      1. L

        Linda….I thank you for what you have given to the community of women whose lives have been affected by mesh. I had mesh removal by the earthly angel, Dr. Raz, this last Oct. 2014. I would LOVE to talk to you in an email, if you have time. I am a 2nd grade teacher….I don’t have time or energy for social media to post my story. I look forward to the day I can give back and make a difference like you! Right now…it is survival…and I am surviving thanks to Dr. Raz! Thank you for ALL the valuable teaching you offer to women who are hurting! I will help you and Dr. Raz carry your very full crowns in heaven:)

        Reply
        1. lavalinda

          L I am glad you had it removed by him. He has been a God send to mesh injured women.

          Reply
  2. Brenda- mother of 14

    Thank you so much for your information. I am go to the ER this week end at UAB because of my bladder sling mesh implant (I’m sure) has been giving me the fits. My question is. Do you know if they do the correct removal as mentioned in your blog?

    Reply
    1. lavalinda

      Brenda I spent a long, long time listening to women to learn what I needed to know. There are many questions you need to ask and I will give you that link. http://meshangelnetwork.com/2014/08/my-own-mesh-removal-surgery/

      Reply
      1. Brenda+motherof14

        Thank you lavalinda, I read that post along with a lot of your other posts. I’m trying to educate myself with as much knowledge as possible about this situation. I like to know what I’m getting into and be to the point that I at least sound like I know what I’m talking about (lol) so the “drs” don’t take advantage of me again. (sorta like mechanics).
        Well, I went to UAB ER as I said, after laying in their for hours to no avail except now I am signed up to where I am suppose to be able to access all my medical records on line. THATS at least a START. They claimed they don’t of a translabial ultrasound. I will be calling medicaid today just to make sure of their policies in other states. I have not made a certain decision yet as to where I will go for the procedure, but I sure the heck haven’t crossed out UCLA. Thank you so much, Brenda

        Reply
        1. lavalinda

          Brenda educating yourself is a huge step and whatever decision you make will truly be yours.

          Reply
      2. Brenda-motherof14

        hopefully- I have succeeded in attaching some information on two Drs in GA.
        file:///C:/Users/Brenda/Documents/Home%20-%20Mesh%20Surgeons%20-.html

        I would appreciate your input. Thank you Brenda

        Reply
        1. lavalinda

          Brenda I know about these doctors and in fact know about so many, but I also learned from other women and that is why I chose to go to UCLA.

          Reply
          1. Brenda-motherof14

            lavalinda, Can you please tell me if you know if Dr Raz excepts out of state medicaid?

          2. lavalinda

            Yes he does and at the top of this blog is a link for doctors and the number to call is up there.

  3. Brenda-motherof14

    Thank you so much lavalinda, I had just re-read the post you sent me under “mesh drs who can you trust” and saw that you already answered me. I AM SO HAPPY TO KNOW THIS. I will call his office right away. Brenda

    Reply

Leave a Reply to Brenda+motherof14 Cancel reply

Your email address will not be published. Required fields are marked *