Dear Ladies of The View

This morning as always I dread checking my emails. Why? Because I know there will be another woman whose life has been cut short because of bladder sling mesh. Somehow I have to find a way to make her feel better and yet how do I do that? It’s almost impossible but the only good news here is that she is in a State where she CAN get help. But at what cost?

The following comment was left on my blog by a young woman named Heather. Once again it was left on the blog Bladder Slings & Hysterectomy. There are many there that you can read from just this past month along but what you can’t see is the many private emails I get from this same blog and all the others. Check it out if you don’t think this is still happening day in and day out. http://meshangels.com/2012/04/221

hi lavalinda, please help me and please excuse my messy post due to the fact im crying uncontrollably after reading all of these posts and have a glimpse of my horrific future! i am 35 yrs old and have lupus and just had the sling and hysterectomy done at lomalinda university 2weeks ago. i was able to come home without a catheter but im suddenly having severe shooting pains and wasnt sure if it was normal to last this “long’ after surgery. i have been battling medi-cal for the last three years just to get approved to be referred to lomalinda because my incontinence was so bad. and they assured me that the sling would get me out of diapers and wasnt the kind on t.v. I have been out of work already due to the incontinence and my degenerative disc and few vertebraes slipped behind each other due to the lupus and if not for my parents help my two daughters and i would be homeless because i have no money or way of getting back into the work force but have gotten the run around with medi-cal and disability so still nothing and i thought that if i could just fix the incontinence i could return to work and maybe just deal with back pain for as long as possible, but now im FREAKING OUT!!!! i cant take much more!!! please help me and tell me what i should do and how to go about it or who to talk to and what to ask. i have my post surgery follow up appt next week at lomalinda but not even sure i can wait that long with this cramping and shooting pain kind of where my ovaries and uterus use to be. also i can feel the sling when i pee it feels like i have to slowly painfully push my urine out a strainer?? and my right arm still hurts which they said was due to the anasthesia and would go away after few days! anyway please give me hope so i can go on for my two angels they still need me im mom and dad to them and my parents are getting old and i need to get well enuff to make some money again or find away to get approved for disability help and also get healthy to drive them around and take care of them!

Ladies. What would each of you say to a thirty five year old woman who has health issues, has been fighting to get help through a string of red tape? Then once she finally got the help, she has no clue this could happen to her. Well ladies, I have to do it regardless of the sadness I feel for her.

First I had to leave an answer to her comment in the hopes I can save other women from following in her footsteps. This was my reply.

Heather, this is why I keep battling to save women like you who NEVER should have a mesh sling because of all your other issues, yet alone because slings are doing awful things to healthy women such as me and thousands of others. I am so angry this happens in a State where you could have gone and had help and a sling made from your own tissues by doctors who know what they are doing at UCLA Urologists. This is an outrage that this still goes on. I am going to make contact with you privately but I wanted to answer here in case any woman finds this who may be having a hysterectomy because there are people who can do this surgery WITHOUT mesh. Go to this link and it will give you doctors who can do a sling without mesh, do whatever else is needed and it will also take you to links to show my journey through removal. And I am not done yet. I will have another surgery at UCLA in April and I will travel from Texas to do it. Why because I don’t trust anyone else.
You must take charge of your own life and say “NO TO MESH!” Read here.
http://meshangels.com/2013/02/mesh-is-a-journey I can’t save every woman out there but some of you can save yourself. If you think travelling across the country will cost you too much money now or it is an inconvenience, you don’t have a clue about what a mesh sling will cost you from now on if they put it into you. Your family. Your home and your livelihood will go down. That is the legacy of mesh. Don’t believe doctors who lie and says they don’t use the mesh of lawsuits. Believe me, they are all being sued. EVERY SINGLE COMPANY WHO MAKES THESE SLINGS. This must stop and the first step to stopping it is with women who will have hysterectomies from now on. Read this blog about a young woman, 38 years old who has been dealing with this for 10 years because of a mesh sling, which became two mesh slings when the first one had screwed her up. TEN YEARS! This is not a joke. This is fact. http://meshangels.com/2013/02/living-in-mesh-hell Believe none of these doctors who tell you they have not seen any problems with THEIR patients. Or that they don’t use that type of mesh. Walk away. Spend money now and save your future and that of your children. I feel terrible for you Heather. This should never happen and yet it does every day all over the world.

Now I have to write to her personally and give her as much support as possible along with four other women who do their best to help these women. It is such a sad state of affairs that because we do this we cannot live our own lives nor deal with health issues we all have, due to mesh complications. Even after removal. We want to move on but we don’t know how because so many women continue being injured, while we tackle the backlog of cases where women have had mesh in them for many years.

When I had my own removal surgery at UCLA, I came home to a bedroom prepared to carry on while I healed. A laptop hooked up so I could continue to answer emails and comments and lend my support to women. I never got to be a normal patient. I could not just lay there and watch Netflix, TV and just get well. I had to deal with this stress every day from the moment I came home. Why? Because no one cares about women in crisis. Please ladies, DO SOMETHING! I will have yet another surgery at UCLA in April and once again I will make sure my bedroom/sickroom becomes an office. I need your help desperately so that I can concentrate on my own healing. There should be a team of professionals set up to do this, paid for by the mesh manufacturers. Not a tiny group of injured women who cannot get on with their ‘new’ lives of the mesh injured.

At what point will the media get it. Stop interviewing doctors who like to boast about what they do, when they do not have the proper skills and yet they also put mesh slings in EVERY DAY and say there is nothing wrong with them. Please work with us to change things before thousands of women will be injured when thousands have not yet had removal surgeries. These slings are NOT MADE TO BE REMOVED! Manufacturers need to wake up and destroy them BEFORE they destroy more lives. Not just those of women but those of complete families.

I BEG you ladies. Please do something. We cannot continue to do this alone, it is wearing us down. We need YOU!

UPDATE
When someone emails me this soon after surgery it is difficult to know what to say to them, so I asked Dr Raz.  I know many women who have pain after surgery, but the shooting pain did not sound right.  This was his response.

Tell  the patient to call the office for an appointment.
Shlomo Raz M.D.  Professor of Urology

13 Comments

  1. Lynn

    Today I read in the paper that a New Jersey jury ruled that the Johnson & Johnson Ethicon unit was ordered to pay $3.35 million to a South Dakota nurse, 47, who sued. She had 18 operations after her vaginal mesh was implanted! This is crazy! It should be banned. The lawmakers of this country have wives, daughters, nieces, who could potentially go through this hell and they need to act not only for their family members but for all women who are being injured daily.

    Reply
  2. Diane

    I just found this blog and have been crying all day. First for falling for the same line my doctor gave me that my sling is the safe one, and second for the horrible pain I am in. The worse yet is I had neve had leakage, just frequent urination. I was assured this was due to pelvic prolapse and the sling helps both issues. After the surgery I now have leakage and I urniate much more than before the surgery. I have constant bladder pain, aching, pressure to the point where I can’t stand or walk. I urniate up to 30 times a day and never a full flow. I have constant pain in the left side of my groin that radiates to my hip and down my leg. I feel so disabled and depressed. My doctor has treated me for three bladder infections since my surgery of January 7, 2913 and I have gotten no relief. Now they are trying to tell me I suddenly developed IC which is crazy.. I live in CT and am sick over the fact that I would have to go to CA. However, I do not want just any doctor to remove this stuff.

    Reply
    1. Diane

      I am so upset in writing I meant to state my operation was January 7, 2013

      Reply
      1. lavalinda

        Diane it is NOT your fault so do not blame yourself. We all tend to do that but we should realize that until doctors begin believing us and don’t just override what we ask and say, this wil continue and more and more women will be injured. If you have any way to get out to UCLA, make an appointment soon. Those doctors will help you and life will improve. This happened to me too and my doctor told me I would have to live on antibiotics. I knew that was serious as they will not work and bad things can happen if you do. So I had to live in agony for two years seven months until I had Medicare and Dr. Raz of UCLA removed it. While I waited I began taking this product on this blog and I never took antibiotics again. http://teapapers.com/bladdersling/2011/03/bladder-infections-before-or-after-surgery-a-cure-2 Plus you can see who these doctors are by going here. 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
        1. Angels123

          Dianne,
          Do not feel that you should have known better. Many of us were/are healthcare professionals and believe me…we all feel like we should have known. I even allowed them to go another step further and lie about the first sling that was put in so they could put another in to ” fix” it! At the time it seemed logical the way the dr was supposed to take it out ( because neither dr I saw ever said that it couldn’t come out) and just replace it with this better mesh. Now I think about those words and cringe at the lies I was told. It has taken me until I found this site to realize that unfortunately, my drs were not the only ones willing to lie for a procedure…I wasn’t the only one with these nonexistent complications…and I wasn’t the only one who believed their drs. Imagine that! I don’t think any of us who have been so gravely damaged by these products will ever take a dr at face value again. So unfortunately dear Dianne, you have joined our ranks. Now do whatever you must do to get to Dr. Raz. I just had my removal surgery and I believe if anyone in the world can help you that Dr. Raz may very well be the only one. Just trust us enough that we wouldn’t lie to you like you have been lied to already. Believe me…we all know what that feels like! Blessings and good luck to you!

          Reply
  3. Tracey

    Diane, I cried all day too when I realized that I had believed my doctor that the mesh was improved and no longer a problem – and he was wrong. And for the pain that I was in less than a year after surgery. But I decided that I had to take my health and my future into my own hands and make that call to UCLA. I DON’T trust anyone else to take this out except the doctors at UCLA – I don’t want multiple surgeries. I made the appointment and it gave me a sense of hope. I was in shock about the idea of going to CA for treatment. But I decided that my life is worth it and I have to fix this! I flew from Texas to UCLA for the initial appointment and now I have a surgery date. I feel that I have had a huge weight lifted from my shoulders – I have a plan to fix this horrible situation and I have the best doctors in the country on my side. You can too – you are worth it!

    Reply
  4. Diane

    Thank you all for getting back to me. I do know now that I truly want this out of me as soon as possible. I am sick over the fact that these Doctors and companies knew the risks involved and we were not informed. I also do not know how I can get up enough money to go to CA. Do you know if the surgery is at least covered by insurance?? How can this be fair that we are having complications and the FDA, Doctors, and Manufactures are not held responsible for damages?? You all are correct in which I do not trust any Doctor anymore. Thank you for all the advice.

    Reply
    1. lavalinda

      Diane do you have a very low income right now because if you do there are ways you can get out there. However, if not you should speak out in your work, church or anywhere you meet women and you will be surprised that others will do fun raisers to help you. It is simply about asking for help. I understand many women have never asked for help before and yet they help others in need.
      If you have insurance then you should not have any trouble, although sometimes Insurance companies will often say they have someone in their own network. this has happened to many women and then they have to tell them that it will save them money if you go to a surgeon who can remove it all without doing so much damage. The latter will cost them so much more.
      If you want to know what others have done to raise money, check here http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money

      Reply
  5. Ginger

    Hi Lavalinda, I too have the same pain and symptoms, of the bladder, bowel, and groin and low back pain and leg pain. I live in East Boston, and cannot go to UCLA, but I am sending for my surgical reports and operative notes. I had a hysterdmctomy But have my ovaries tacked up, in March, 1985 and had to have bladder surgery, 1996, had prolapse, and incontinence and it was sticking out. Had the catheras too had to go home with them. Could not pee and never go straight or empty my bladder. I now have a cystocyle for years. I live in pain, My hysterectomy was because I had cancer in uterous traveled and lymph glands. and nodes were removed, and may have the mesh and bladder slings or mesh.my hysterectomy was abdominally cut very painful, and drains, my bladder. was vaginally done. I think the surgeons have killed me. I am only 87 pounds and 67 now, cant eat or have sex, or work or walk without pain and having to pee andwit

    Reply
    1. lavalinda

      Ginger this is yet another sad tale and I do not know where else you can get the kind of help you need.

      Reply
  6. Ginger

    I am waiting for my surgical reports. I cannot believe what the Surgeons and Companies that make these autrocities for women, have done. I burn too when I go and I have to sit a long time to empty my bladder, or make several trips day and night, and suffer bladder symptoms bad now. Thank God, I found your site, I was told to live with it and you are lucky to bewalive by the surgeons. Now I see all these poor women and I am not alone and crazy, because, the pain and spasms, are real, I am disabled and my life is gone as I knew it, because of these 2 surgeries. God Bless you all, hope we get help and restitution.

    Reply
  7. Ginger

    I realize this thread is older, but I had to reach out lavalinda, to you and others, It is good to know I am not alone. God Bess Everyone, am fighting for my rights now and want to live a normal as possible life again, if ever.

    Reply
  8. Maria Benedetto

    Hello, I am just learning about the Mesh Angel Network I don’t know if and who will see this but wanted to say I had the Mesh Implant in 2007 , in 2012 I had to have a Hysterectomy ,I thought I was maybe starting to go through the change , thinking back the Gyno I had to go to wasn’t my regular Gyno due to Insurance reasons, but belonged to the same hospital..and thinking back his impression wasn’t that I was going through the change but didn’t say what he thought it may be from.. As I found out from reading about the Mesh Sling, I read that it can cause Uterine Bleeding, and when I pulled the records from my visits to the Emergency Room for pain and Bleeding, thinking I was changing life, I read my Diagnosis and it read.. Excessive Uterine Bleeding , so I put two and two together and thought, maybe I wasn’t changing life but was experiencing symptoms of having the Mesh Implant..and contacted an Attorney…Just wanted to share.. Maria, Philadelphia Pa… GOD BLESS..

    Reply

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