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This Has To Stop!

 flowerA mesh injured woman who does not want to be identified writes:

       “These products need to stop! Life as it once was before my mesh implant is gone.

         “It has been replaces with relentless pain 24/7, total loss of my bladder and bowels, infections. For years I went from doctor to doctor looking for answers to why my legs were hurting so bad and losing my balance, no one could answer why.

       “Then I could no longer any feeling of touch in my legs. Years went by, years of just not feeling good like I had the flu ,again no one could answer why I was feeling so sick. Genetic testing to see if I had a genetic neuro/muscular disease, negative. This went onto spinal cord injury testing, negative. Then my bladder started to fail followed by my bowels, and the list goes on and on until finally I found a doctor that knew what the hell was going on. Bottom line, 5 surgeries later and more to go. This should be looked at as a crime and pure torture on women. We were human research !

       “To take a loss of ones total health, a loss of every thing one even owned to use the money trying to find answers on why I am suffering in so much pain, to lose my home, the ability to ever work, to walk in the park with my grandchildren, bankruptcy, and a life of pain medication, a bladder pacemaker, intimacy is a memory and it does not end ! I personally know 4 women who have taken their own life, unable to cope with the loss of a life they once knew and the endless pain that will never go away.

       “Thank You from the bottom of my heart for bringing this to peoples attention. It is very alarming that the major media is just ignoring this, it makes one wonder why their lack of motivation to report on this. You can’t bite the hand that feeds you ? For the ones that suffer, this is not about money. There is not enough money to ever take this away, ever ! It is about stopping the cover up and fess up to these wrong doings to fill the pockets of greed.

       “The term ” Gold Standard” which is the term that these companies call this junk, must mean the gold that’s in their bank account because it sure as hell robbed so many of their “Golden Years” I know it has mine. To know that every day, women are walking into hospitals thinking that this will give them a better quality of life, unbeknown to them, their life is about to turn into a real nightmare.

       “This has to STOP !! And the only way to stop these products from ever destroying another persons life it to get it out into the media  – NOW!”

 

24 Comments

  1. Disgusted says:

    Can I ever relate to you! I agree wholeheartedly. So many of us have tried to get it into the media and so far Jane is the only journalist who is doing the job. Nightmare is almost too easy a word to use. I know of a person who died, but she didn’t take her own life. I know many who are injured and have no clue – yet – what is coming next. I’m sorry it took so long for the Dr.’s to figure out what was going on in you. I’ve had many more surgeries and have more to come. Finding Dr.’s who know what they’re doing is very hard, and I’ve been so frustrated with diagnosing myself, when they should be the ones who know what to do. This whole deal defies common sense and should be illegal. I can assure you that you will learn so much more from the injured than you will from most Dr.’s. That is a SAD state of affairs. I wish you healing and peace. Thank you for writing.

    • Jane Akre says:

      Disgusted, we actually are getting some media lately with the large verdicts. It’s a small thing but every little step puts this issue forward to some degree. How’s that for optimistic!?

  2. Every woman who musters the courage to elevate this personal catastrophe to a public scandal is my hero(ine)! The perpetrators of this harm-for-profit scheme are betting on our ‘following Protocol’ and decorum. Well, all bets are off and the Salazar jury reflects the disgust and horror that everyday Americans would express if they had been privy to the truth of this surgical mesh ‘business’. Imagine! 12 jurors (formerly strangers) unanimously agreed in less than 5 hours.

  3. Toni says:

    Wow I had to have infection after infection and Mono twice in 3 yrs. But until I started bleeding with yet another bacterial infection was I aware that the mesh was the culprit. I was treated and began to feel like I was crazy. I never believed in or felt depression.But I am now on anti depression medicine and it doesn’t keep the depression from being over whelming. I have never in my life contemplated suicide. But after 2 yrs of 3 surgeries and mono. Trying to keep my job being a single woman with 2 sons and trying to keep a home up that I have owned for 19 yrs but almost losing it several times due to loss of income not being able to keep it up WITH LIFE . I have been through hell as has my family. I have been told so many times I can’t stand it ” were did you go” my mothers words of how sweet I used to be. Well Mom I got a surgery. Don’t you remember the doctor saying after my surgery were they implanted the Prolift and TVT telling you that he had rebuilt me and how much better life was going to be now that I was fixed. It is much like the life that they gave Frankinstien. Right now I am writing this with the thoughts of how the BIG PHARMA made so many Frankinstiens an experement on the lives of women. If they had their wives their sisters their mothers there friends use the very GOLD Standards they touted to the Doctors. The gold standard is in their POCKETS. As usual the rich get richer on the backs of the people who are enslaved to the almighty dollar. FDA is as big Media is all in their pockets. So it is swept under the rug and kept quiet. If it were not for the internet and so many injured it would never ever be known at all what these companies are doing for profit. Hope this gets read. And I hope that there is more journalists that have the guts to expose this scam to major media like Jane has. Thank you for showing the guts Jane to say what so many won’t . Maybe Ophra would be a good place to consult to get this story out to the whole world? Toni

  4. PLC says:

    The media would be all over this if we were a celebrity.

  5. Jan Urban says:

    Are there any updates on the FDA January 3, 2012 order for the 35 manufacturers proposed 3 year study. Boy has the FDA been dragging their feet since 2008 +. Do you think we could sue the FDA? In 1953 The United States Department of Health and Human Services was formed under the major reorganization act of 1949. This was signed on April 1,(FOOLS DAY)1953. The goal of this department is PROTECTING ALL AMERICANS. and their motto is “improving the Health,Safety, and well being of America” Well it is certainly taking the FDA a long time 6 years + to protect us.

    • Jane Akre says:

      Jan- this will take filing a FOIA with the FDA to get the regular 6 month updates. Do you have time to do that? Look up on the site what the information should contain for a request and submit it formally. Ask for every bit of information submitted from 33 different manufacturers in compliance with the 522 orders issues January 2012.

  6. Summer says:

    What about Michael Moore. Do you think he would do a documentary?

    • Jane Akre says:

      We are working on one Summer… all it takes is money…….

      • Carol Matziaris says:

        How about David Muir?…I’ve always wondered why I haven’t seen more news about these faulty items. I’ve had my vaginal mesh since 2006. The doctor explained what a simple surgical procedure to implant but not explaining what a dangerous procedure to remove. Years I suffered in pain telling my dr, going through tests, thinking I was crazy until I was diagnosed with the mesh eroding through my vaginal wall and more. I’ll end it mine there but I do wonder why the news isn’t interested in this.

        • Jane Akre says:

          In my opinion Carol, the news self-censors very nicely. J&J is a huge advertiser for many products. Plus consider this is news about women’s pelvic regions…. not so nice unless it is wrapped in a bikini and on the cover of Sports Illustrated. I used to work in mainstream news so I believe these are the reasons….~ ja

    • mary babb says:

      I would love to see Michael Moore do a documentary on this it sure would get the message out he is good on getting the message out and put the pressure on JNJ and other companies,, Mary South Carolina

      • Jane Akre says:

        Actually,,Courter Films ( Gay Courter and Phil Courter) and I started a documentary. We did a couple of trailers to sell the film. Michael Moore usually sees the humor in things… and this has none. But yes, it would be nice if he would become aware of the issue.!

  7. Kitty says:

    I wrote to Hillary about the FDA request Did not hear back from her.

  8. angela says:

    I am beyond horrified now. I have known for years that the mesh inside my body has destroyed my life as I knew it, but now, with the information that these companies have suppressed from us for so long coming to light, I am scared to death. I have suffered from mrsa 4 times in the last 2 years, I have had rashes of unknown origins, I have had chronic bacterial infections to the point where I have to rely on an infectious disease specialist to keep me from dying from these illnesses. I have felt horrible and been in excruciating pain for years now.. And Now I am mortified that a portion of this mesh is still inside of me.. What is going to happen to me long term as a result of their negligence, lies, and coverups… The material implanted in me has been states on msds to NEVER BE PLACED OR USED IN A HUMAN BODY! Why? Why would they do this to me or all the other women involved? I feel like a lab rat. I dont even know what to do anymore..

    • Jane Akre says:

      Angela- do you know how much mesh is left behind? You will need an ultrasound and a technician who can read it to tell you, either translabial or transvaginal ultrasound is my understanding. ~ ja

  9. Mary Pat says:

    This might help people understand translabial ultrasound: I was the patient laying on the table while the radiologist, that’s right, not a technician, the actual doctor, conducted my translabial ultrasound. The first time I had the procedure, the radiologist was teaching my surgeons about it. The surgeons were standing next to me watching and learning. We all learned together. The reason the translabial ultrasound can show mesh is because the tissue in the groin is very thin. When the patient is lying on her back, the ultrasound is viewing the groin from a horizontal position, through the thin tissue. The ultrasound wand that is inserted vaginally will not work. When the surgeon asked if the radiologist was going to insert the wand, the radiologist said “no, that’s a whole different neighborhood”. They were able to see my mesh that was low in the pelvis. I then had a partial mesh removal. The anchors were left in the bones. After that I had another translabial ultrasound by the same radiologist. Again the doctor was in the room while the technician conducted the test. The radiologist explained to me that they did not see mesh the second time but he told me, quote, “that’s not to say it isn’t in there…it could be too high up for the ultrasound to view it”. We all knew the achors were in my body, they just didn’t show up on the ultrasound.

  10. Jan Urban says:

    Just got off the phone with a women on the nurse line for my family doctor. I always tell women never to put mesh in their bodies. She told me her mom just had a new procedure in April and it was out of some new material and that it was safe. It to went through the vagina. Her mother was concerned and asked all the right questions of her doctor and through with the surgery. But I do not know of any new device made of a safe material that goes through the vagina. I’m Praying for her. This is awful? Is there a new material for these Mesh Devices?

    • Kitty says:

      I believe that the vagina should not be cut into unless a critical emergency——-such as vaginal cancer et al. It is a functional sexual organ and I think that is what turns the media off to our pain and disabiilities.

    • Kitty says:

      Jan—would it be Matristem wound matrix Investigational studies are being done now I believe they started using this for transvaginal mesh in Jan 2014 made of porcine??? NO MORE TRANSVAGINAL!!!!

  11. Jan Urban says:

    As for my check up: sinus infection, antibiotics for the sinuses and sores on my body. Compression stockings for the swelling in my legs. Blood pressure was 117/57 pretty low, heart rate 55 not bad for me. I asked if she thought my autoimmune system was being effected by the mesh. She said she wouldn’t doubt it. Well, talk about kicking us when we are already down are the Insurance companies. They will not pay for the stockings. They have been slowly eating our benefits away over the years, as our premiums go up and our benefits go down. Anyhow I didn’t have my surgery on the 15th. I tried driving 2 times for the pre op test and couldn’t manage it. Reschedule it late October. One more thing. How would you go about some sort of web registry for Mesh Survivors. Listing the device, dates, side effects etc. It would be interesting to see how many women from around the world have been effected by this device.

    • abandoned says:

      I am late getting on board with this wonderful website. Every time I read someone’s comment’s or stories…it blows my mind, makes me sick and yet there is some sick comfort I get knowing that I am not the only one. Although, in my heart…I wish it were not true…I wish it was all a lie…and that just one of us could have suffered for all.

      I was a hospital chaplain and a hospice chaplain for the latter part of my career (which includes grief counseling), accepting people in pain, healing and loss where ever they are spiritually, physically and emotionally. Stories shared on this site have been far more disturbing than any single patient or family I ever had the honor of sharing their time in crisis. It looks like a never ending loss…the grief I feel for myself is unbearable, the grief and horror I feel for each one of you is so far reaching I can barely think about it for too long. But, I have to. I have to think of each woman and man with mesh, pray for them and myself.

      I have asked myself – self, what would you tell these suffering people if you saw them individually for counsel; when they ask how could this happen to me? How could God let this happen? And, the answer that comes to me…is that we have a Loving God and Father, who does not want us to suffer. However, God gave people self-will which could be used to glorify Him or terrify others…it is man’s self will that has inflicted this suffering on us. We must pray that all mankind use their self will to heal and not kill.

      Most of the time, I feel like I am already dead, lost, invisible, insane…I have wondered when they will come up with a medical diagnostic code so that we the victims of mesh madness can receive palliative care, someone to come to check on us at home, a volunteer to sit with us occasionally so we are not alone, someone to help with clean up and bathing, someone to catheterize me so I don’t fall over on my head due to gait imbalance, end of life pain management, social worker visits to help us find all resources available so we can remain at home, spiritual care workers for those that want to connect or reconnect, grief counselors to help us work through our losses, one by one, massage therapy to keep our blood flowing until there is a miraculous discovery to cure us, massage therapy for the sake of being touched, someone to drive us to the doctor’s office, stay with us after surgery or procedure. Seriously, we deserve all the loving care, respect, and dignity that hospice patients get…even though we will probably live beyond six months like this.

  12. Kitty says:

    Lets get a date and meet at the Mall—-DC

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