My One Year Mesh Free Anniversary


Today marks my one year mesh free birthday and I am more thankful it is out of my body than anyone but a mesh injured woman can imagine. I have not posted on my blog for awhile, but because so many have asked me questions, I knew it was time to answer them according to how I feel about everything that has happened this past year and also give you an update on my progress.

First I have been very happy to have a break from mesh and I will continue to do so, until I am ready to post something new I have learned. Please bear with me for my absence here, but you should know that I read and do approve all comments you post. It is still my blog and I have not abandoned women. I need to rest from this so that I can find my own ‘new normal’. Three years of doing this has taken a toll on me emotionally and I realized I need to have a life with less stress. Therefore, I do not spend all my time here and will check on comments every few days as I see fit.

I do wonder if all women will remember the dates of when mesh was put into them and when they become mesh free. I think we do because it is such a life altering event although not in a good way. We mark birthdays, wedding anniversaries and holidays with joy but there is no joy with these events. Mesh is a debilitating product and yet sadly I do know it is here to stay. All we can do is inform one woman at a time about what we know and ask her to pass on the information to others. We cannot dictate what anyone should or should not do, but simply give them the tools to make their own choices.

Right now I am not going to dwell on the fact that mesh is here to stay. Instead I am going to answer questions that I am asked continually. As you all know my year has been rough. I will not pretend I am out of the woods even now, because I have always promised to tell you the truth. So here goes.

First I am asked “With all that has happened to you, do you have any regrets of having the mesh removed and would you honestly do it again”.

The answer is, even with the path I have been down this year I say strongly and unequivocally YES! Not just yes, but a giant yes.

I am also asked “What was the point of having it removed if I am still suffering in pain?” Well, there is suffering and suffering, but let me explain. When it was in me I deteriorated over a period of two years and seven months until it was removed from my body. I could not sleep without pain. I could not ever lay on my right side. If I tried I would be in so much agony I had to get out of bed and wait for it to pass, often with something I took to ease it. The mesh was literally strangling my right leg, causing severe groin pain, leg pain all the way down to my foot, hip and back pain. Walking was terrible. I got up from a chair a few months after it was put into me and wound up on the floor when a sharp pain in my hip sent me crashing down to the floor. I was then in the E.R with an agonizing left wrist which was very swollen. X-rays revealed two cracked wrist bones and a cast for weeks. I had never had a bone fracture in my life and it quite shocked me. From that point I began using a walking stick and later a walking frame. I had to admit to myself right then that I needed them or I would cause myself more injuries.

While the mesh was in my body, I often felt like I wanted to cut my right leg off to ease the strangulation because it was like living with a vice around my thigh. From the moment I came to after removal surgery that vice was gone, but the nerve damage it caused me has remained. Regardless, I am so happy it is not in me now or I am not sure where I would be at this point. However I can guess because I have spoken to so many women who wound up completely bedridden until it was removed from their bodies. I am grateful to the women who have contacted me for sharing the truth with me, so that I made the right decision. I had both the mesh and the anchors removed at one time by Dr. Raz of the UCLA Urologists in Los Angeles.

I have also been asked “Why wait and have full mesh removal by a competent doctor?”

The answer is; if not for starting this blog three years ago out of my own pain and frustration I would never have known anything about this subject and yet I had had a partial removal nine weeks after the sling was put into me. I did so because I could never urinate on my own from the moment the mesh sling was in me. Sadly, it has happened to many women the same way and in desperation we have to do something or our bladders will never work again. But I know what Dr. Raz told me when he removed it in two parts. First the original doctor only cut a tiny piece out of the center in that second surgery. Because of this, the mesh moved around and latched onto my nerves and muscles. So if you find yourself in this position, do what you have to do right then, but make an appointment as soon as possible to get the complete mesh sling removed along with the anchors, by a doctor who truly knows what they are doing. Don’t wait years unless you had no choice as happened to me. I went through all my savings and did not have any insurance and none was available that I could afford until I finally was eligible for Medicare. Dr. Raz told me that once the sling has been cut, it is like letting shrapnel loose to cause more injuries. It is also much harder to find when he goes in to remove it because it can move anywhere and can hide. I also know many women who he has removed it in one piece that are now living a normal life. So make your choices so that you stand a chance at a better future.

Now the big question. “Would you do the fascia sling surgery again, knowing what you know now?”

The answer is, while I was going through all of it that happened, I would have told you “NO”. But I was in a mess when I made the choice to have the surgery and I did not know that that surgery also was very much necessary because of other problems that had taken place since my mesh removal. I won’t go into all the details because if you want to know, it is all here, but Dr. Kim found my bladder fused to bone with scar tissue. This made my surgery a lot more involved and I do not blame her for the serious infection I wound up with. It could have happened if Dr. Raz had done the surgery just the same a it did with her. I chose to move over to Dr. Kim because I knew the terrible suffering other women were going through and I wanted someone else to have my place with Dr. Raz, so that she did not have to feel like she wanted to kill herself. ‘She’ being whoever the woman was that took my place. I have no clue.

Dr. Kim discussed with me that the fascia sling surgery had a fine line between stopping my terrible incontinence and stopping me from urinating on my own at all. I sat there listening to her and honestly I felt I had no choice but to try it. I also felt very angry once again, because I knew I never needed the sling in the first place as I was never incontinent. Hindsight is a terrible thing and will drive you crazy. But you have to move forward and accept what you cannot change.

If you have followed this blog you also know I went back under three months later (July 2nd this year) and had another surgery where she cut the sling slightly to allow me to go on my own. Two surgeries in less than three months is a lot on your body but I was desperate. So what are the results three months later you may wonder?

For the first month I did not think it had worked at all. I had to self cath every three hours which meant I had no life outside of my house and no sleep. I knew a lot about self cath because I had done it before for a long time after the mesh sling was put into me. I knew I needed to keep records to know how much I dribbled out on my own and how much I had to remove. It was a real pain to live that way, but it was the only way I could watch what was happening and see even the smallest change. It paid off. My diligence noticed these small details and I began to self cath every four hours, then five as time went on, and then changed as things changed. It was tiny baby steps and I was thrilled when at last I had gone all day without doing it and then finally before bed I did not have to either.

How did I know when to stop doing self cath and how often?

To do this you have to constantly measure what you remove. Dr. Raz told me that if I removed anything under 100cc’s, then I no longer had to self cath. Each stage gave me hope that one day I would not have to self cath at all.

Where am I now?

Recently I have not had to self cath at all many nights and never during the day. I am at last less restricted because of the self cath problem. I am very happy that as my body healed slowly, I began to dribble more on my own. Why do I call it dribbling? Sadly my bladder is badly injured from being restricted for so long. I have bladder nerve damage and I do not know when I need to go, until I stand up. The nerve signals are gone. So I always wear a pad because I have to go in a hurry when I realize I need to. My bladder is now half the size of a normal bladder function, so I cannot hold much before it is time.

I still live with nerve damage pain in my groin and right leg, but it is manageable now without pain killers. I’ve got used to living this way. If you have followed this blog you will know that I have severe vertigo from the gentomicin antibiotic drug that was given by I.V. to kill the serious infection. I found a group who call themselves the ‘wobblers’ and learned that this will never go away. I tried balance therapy which resulted in my leg pain becoming worse, so I decided I need to work on skills by myself that could help my brain get used to the idea. These lovely people told me the truth that there is no cure, so it is up to me to learn to live with it. So as I improve I began designing again, which forces me to do many things which are difficult with this health issue. I am also sewing again which takes a bit of changing how I used to do things, but I am back doing things I love and living my life.

Even with my life restrictions I have no regrets of having the removal surgery. I have done what every other woman and her family has done at some point. I’ve been angry more times than I can count. But I had to work through it to become a happier person. I now no longer life my life with mesh misery every day. I am working hard at finding my new normal, realizing the only person I can change is me.

I still take marshmallow root herb every day without fail and have not had one infection even while doing self cath. I take a balance of supplements and vitamins and although my life has changed drastically, I am happier and healthy other than my mesh injuries.

There have been hundreds of women who have credited me and this blog for saving their lives. I have not and will not take credit for doing so. They saved their own lives. I wrote what I had learned from my own experience and other women’s experience when they shared it with me. These women took that information and ran with it. They wanted to change what had happened to them and they jumped through hoops to do so. It’s not easy. We can all make every excuse to not go the distance, but that is the choice we all make.

I do not want to choose what any woman should do or not do. I am not a bully who always has to be right. I simply care and I share.

I hope is that when you hit a one year mesh removal milestone, you life will have improved. Sometimes we have to take the small good things in life and work on living again. That is my wish for all mesh injured women.

 

 

9 Comments

  1. Ricki

    Thanks for the update. I am glad to see each day gets better for you. Thank you for sharing your journey with all of us.

    Reply
  2. Nancy Mikitka

    Linda, if I were there, I would hug you! You have had a hard journey. Yet, even though mesh has tried to rob you of your life, you have risen above it! You are an amazing woman and a hero. I have been blessed to know you…even though it has been through your blog and Facebook…I feel like I’ve had the opportunity to meet you in person because of your willingness to openly share your journey. And, yes, I am one of those women who credit you with saving my life because you pointed me to Dr. Raz. Thank you and may the good Lord bless you especially for the blessings you have been to so many of us!

    Reply
  3. Sharon Mcbride

    My dear friend Linda,
    There just are no words to express the gratitude I feel today. I still have to work on acceptance and patience, those too will come with time. Never have I met a more selfless woman, willing to give up most of her own time for the good of others. Where would we all be today without your tireless days, hours and any time of your own, given freely, talking with, listening to, worrying about all the other mesh injured women. You knew in your heart you could not help, the ball is now in our court. As you said, you planted the seed, it was now our decision to do what we thought best for our own health, sanity, peace of mind and life with the information and gentle persuasion you ALWAYS provided. Linda, although severely injured yourself, that never stopped you from doing what ever you could for all these terrified women wanting, praying and oh so frightened. I sincerely believe that most of us really had no clue how much suffering in silence you did of your own. Wishing, hoping, praying that perhaps someday, after the mesh is removed, all would return to normal. Unfortunately, the truth kept slowly making itself clear, “life as we knew it will never be what it was”, but now, we all have to figure out what our new normal is. Linda, it is now our turn to hold you close, cherished as one might cherish a priceless jewel, for you are a jewel, more precious than anyone, including yourself might realize. I love you with all my heart as do many. Thank you so much for all you’ve done for so many women, and for me personally. Now it’s time for the fairies to take over. I know they have enough magic and strength to help you along your journey. Follow the fairy dust my friend, I know they will take you where you need to be. (also you did mention that those fairies can be messy. perhaps it’s not a mess, it’s simply a path for you.
    With heartfelt love and affection, and many many hugs,
    Sincerely, Sharon

    Reply
  4. Ria Larielle

    Thank you Linda for introducing me to your blog and your story. You are amazing. You are an inspiration. I only met your blog today. You are giving me some strength to keep going looking for a surgeon who can help me and not to give in a have a half job which I do not want.

    I am stuck right in the middle of… each day I wake in so much extreme pain even with pain meds it’s difficult to get things done…. I’ve just realised it’s going to take a lot to find someone able to take out all of my mesh at once, surgeons are trying to talk me into letting them take out some and leave the arms. I have a TV-Abrevo implanted July 4th 2012 and live in Australia. I am alone

    Love Ria

    Reply
    1. lavalinda

      Ria I am going to put in touch with A woman in New Zealand who may be able to send you someone in Australia to help you. We all know each other and try to help.

      Reply
  5. Lisa Pashenee

    Well said Linda…your blog and experience has given us invaluable information regarding mesh removal. Will I remember the removal date??? YES

    I sent Dr. Larissa Rodriguez (at ucla) a card one year later, August 20, 2013, thanking her for saving my life.

    I just reread over 200 emails between me and my original doctor, and I was so angry. “It’s not the mesh”, “1 in 3 women over 50 get uti’s all the time.” We had to literally do our own research and learn what doctors were taught about the mesh to diagnose that the mesh was the problem. After all the fda warnings in 2008 and 2011, I am stymied when women say their doctors have heard of no problems with mesh….really? I think it must be a conspiracy to keep it all a secret. I personally tell everyone I know. Do not use mesh, and tell everyone you know. A foreign body is a foreign body, and that is one of the first things doctors learn in med school. Thank goodness doctors are stepping up to try to help. However, partial removals just make it worse, and there are few besides ucla that are willing to do full removals, and other doctors do not have the translabial ultrasound that locates the mesh before surgery. This is important. My first surgery I woke up, and my surgeon said, “I’m sorry, I couldn’t find it.” WHAT??? Then I sent her the email from my infectious disease doctor saying I could die, and a week later, she sent me an email saying there was “nothing more she could physically do”, refusing to refer me to ucla. Conveniently, that email has disappeared. So ladies, get your records of emails, operation notes, office visit notes, and test results. We can only rely on ourselves to get the truth. So many doctors have lied. I will never take what a doctor says at face value, until I research it myself.

    One year later, I am 100% completely healed. I lost my job because of mesh, but you can’t put a price on your health. We only have one life to live.:)

    Reply
    1. Haydie

      After removal where did you go for follow up visits?I live in Florida My surgery is August 25th at UCLA

      Reply
      1. lavalinda

        I found a good general doctor close to home who worked with my doctors at UCLA. The one I had would not help me so I found a nurse practitioner on line and spoke to her on the phone and told her I needed a doctor who would help me and work with the instructions from my surgeon. She went to work and found a young woman whom I met the next day and she was very caring. She was in immediate touch with Dr. Kim at UCLA and followed the regiment to get rid of my infection. It is hard to find good doctors when you are in this situation, because many don’t want to be involved with mesh women, but it is possible. Best to do it before you have surgery. Feel your doctor out. You have to have pre surgery testing, and if you feel there are any problems, search for another. You can tell by the attitude.

        Reply
  6. Teresa Jones

    Thank you for this post. I hope you continue to heal. T.

    Reply

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