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UCLA Partners With Mesh News Desk On Autoimmune Registry of Pelvic Mesh Complications

Hope Pagano

Hope Pagano

Mesh Medical Device News Desk, August 30, 2016 ~ An autoimmune registry is a dream of Hope Pagano, a mesh-injured woman who developed Lupus shortly after her pelvic mesh implant surgery.   Hope felt, as many of you do, that someone should be looking at the autoimmune reactions that women with pelvic mesh implanted to treat prolapse or incontinence, seem to be experiencing with alarming consistency.

Is it possible that that polymer is not as biocompatible as the medical device industry promised?

Many Mesh News Desk readers have contributed to the autoimmune registry and your editor contacted UCLA to see if its researchers could do something with this raw data.  Today, your editor is happy to announce that UCLA is picking up the autoimmune registry to explore further the associations between polypropylene and other pelvic meshes and autoimmune reactions.  Yeah!!!!

Finally – the symptoms are not “in your head”  but may someday be quantifiable.  MND applauds UCLA for taking this important step!!!

 

If you are interested in participating, please click here for the UCLA survey.

Please feel free to share the survey, which will be conducted anonymously! And if you have contributed to the registry, please take the 15 minutes or so to take the survey so that results can be tabulated into the UCLA database for consistency.  You do NOT have to live in the U.S. to fill out the registry.  Men with hernia mesh can also participate.  You can participate anonymously so please do not  be dissuaded from participating!  Thank you all!!!

 

 Characterization of the systemic symptoms associated with the development

of complications after transvaginal mesh placement 

Drs. Shlomo Raz and A. Lenore Ackerman from the Department of Urology at the University of California, Los Angeles (UCLA) are conducting a research study.

If you are a woman who previously underwent pelvic surgery for the treatment of incontinence or pelvic organ prolapse, we invited you to let us know about your experiences through an internet-based questionnaire. Your participation in this research study is voluntary.

Why is this study being done?

In this study, we aim to understand the nature and prevalence of complications after mesh augmented pelvic surgeries for incontinence and pelvic organ prolapse. These conditions affect hundreds of thousands of women each year, many of whom go on to require surgical correction. are frequently managed with surgeries using polypropylene meshes to augment the pelvic floor support structures that are often lacking in these conditions.

In the past few years, however, a number of complications have emerged from the use of transvaginal mesh. A subset of these complications, such as erosion of the mesh into the vagina, bladder perforation, nerve impingement, vaginal scarring, and painful intercourse, have been well-described in the initially efficacy studies examining these products. Recently, a new class of symptoms developing in patients with prior transvaginal mesh surgeries has come to light, including a wide range of systemic symptoms, such as chronic pain, muscle weakness, joint pain and swelling, sinus problems, chronic fatigue, sleep disturbances, cognitive impairment, memory loss, and skin changes.

While concerns about the safety of transvaginal mesh products continues to grow due to anecdotal reports of such complications, a precise definition of symptoms associated with prior transvaginal mesh placement has been lacking. This study seeks to define the types of symptoms reported after mesh-augmented pelvic surgery through the use of anonymous questionnaires.autoimmune registry page one

 

What will happen if I take part in this research study?

Individuals who agree to participate in the study have previously undergone surgical procedures using augmented polypropylene mesh-based procedure to address pelvic organ prolapse or incontinence. If you agree to participate, you will be asked to fill out a one-time questionnaire on pain, urinary and pelvic symptoms, psychosocial consequences, and quality-of-life and recovery after your operation. All information will be reported by you alone; no personal identifying information will be recorded from other sources.

The questionnaire will take a total of about 20 to 30 minutes to complete. While you will not directly benefit from your participation in this study, the results of the research may be very important in helping physicians and patients better understand the risks and benefits of using graft materials in the repair of pelvic floor disorders. Better characterization of the symptoms and problems resulting from the use of transvaginal mesh will hopefully allow more effective treatment as well as the prevention of these problems in the future.

If you are interested in participating, please click here to take our survey.

 

Protocol ID:IRB#16-000858 UCLA IRB Approved Approval Date: 6/15/2016 Through: 6/14/2017 Committee: Medical IRB 1

76 Comments

  1. Mary Pat says:

    Wow! Jane this this is hugely important and we have you to thank, and of course, Hope Pagano as well. This study will accomplish much ! It will show the common denominators that the mesh injured have been afflicted with. Someday when we go to the doctor, our disease or syndrome “mesh toxicity ” will be on the peliminary form just like cancer or all the other diseases. We will be validated and doctors will understand that we ARE very ill and not imagining our symptoms and not chasing ambulances. From this study doctors will begin to research ways to help us instead of sweeping us under the rug. Praise God! Thank you Jane and Hope!

    • Jane Akre says:

      Imagine the medical community recognizing mesh complications as an actual malady that can be noted in medical records and established as a true outcome of mesh implants!! Hugely important….

      • Dawn says:

        Autoimmune disorders are the high risk of mesh. The mesh will do its job it was created to do but then when the body rejects it…. it’s a living hell of pain and sickness.
        I will continue to forever fill out any reports on mesh. No other human being should have to suffer the way thousands of us are and not be recognized.

    • Barbara says:

      This is good as almost all I have talked to have one or more auto immune
      Disease including my self!

  2. Suzanne says:

    Fantastic! Count me in!

  3. Angel says:

    Congratulations. That is great news for women suffering and for all your efforts in bringing this to the forefront

  4. Suzanne says:

    Done!

  5. wilma ingram says:

    I had a tvt in 2003, no Oregon Dr’s will help me . I have had all kinds of problem’s .Pain in my lower stomach area, a rolling sensation as tho make the mesh broke loose ? Also I feel not well all the time. All Dr’s I have seen will not listen to me, to I wanting the mesh out, only keep giving me medication’s to cover up what’s really going on.

  6. MONICA B says:

    In 2005 I had Ureterovaginal fistula it was repaired with a stent. the surgery cause some leaks and very bad pain.

  7. Louise says:

    I got a call from my lawyer and he told me that I could have maybe, $25thousand or less.He told me that the Laws in Canada are not the same as in the U.S. And he said not to expect more.Why? We suffer the same pain as American Women, we have all kinds of complications and we lost everything because of the Mesh.We are human beings just like everyone else.I don’t find this Fair…I My firm is Rochon/Genova from Toronto…Can anyone help me understand, this?

  8. Natalie says:

    Survey complete! Hoping this may help. Living with pelvic pain from mesh is pure misery!

  9. Kathy says:

    Hello jane i think ucla should consider other factors that i think are being missed. Eg. Pouch if douglas hernias. The lack of skills and knowledge in regards to surgeon diagnosing these kind of pelvic floor issues result in the bowel getting caught and tangled in the slings.

    • Jane Akre says:

      There is a place to include this narrative. I wish you would do so…. thank you. They are really very receptive.

  10. gina p says:

    god bless you, hope. i finished the survey. you are an earth angel.

  11. Peggy says:

    What Hope is trying to accomplish is laudable. The only problem is, there are very strict paths for conducting research in major universities (My background includes being trained and working at Yale, Johns Hopkins and UC Berkeley Public Health Schools doing medical studies)
    Nowhere in the UCLA statement published above is there any mention of a partnership with MMND. It looks like MMND provided a link to a UCLA study that was approved at the university in July of 2016. It does not say that the data collected by Hope’s collection was included in it.
    Dr. Raz has been interviewing mesh victims about auto-immune illness for a while now and this questionnaire appears to be a continuation of his work–all of which comes under deep scrutiny by UCLA.
    If UCLA partnered with MMND, please provide the documents that show this is not an exaggeration of what transpired.

    • Jane Akre says:

      Hummmmm I’m sorry for you. Let me explain. About 6 months ago, I contacted Dr. Raz (when we did the Hope registry) to see if it might be useful for his researchers. He responded in a positive way and put me in touch with A. Lenore Ackerman, a research fellow. We’ve been exchanging emails for quite some time about the best way to do this without compromising the research. I deferred to her knowledge since she is the researcher. She felt it was important not to have the names known and I agreed. In the meantime her fellowship is over but she is still working on this research. Finally, this week I asked about the status and found out they were ready with a press release. So that is the genesis. I wish you would stop trying to negate the importance of this research and the small part Hope had and the followup I had in bringing it into a new set of eyes who can move it into the mainstream.

      • Jane, you have been improperly and too harshly scolded. Yes, this is a study conducted by UCLA and it HAS been closely scrutinized as all scientific research requires. Universities that conduct research on human subjects must submit their research design to an institutional review board (IRB) and that designation appears at the bottom of the news release. I did a research project on pelvic pain and “partnered” so to speak with a large hospital system that had a female pain center of excellence. Actually, they just supplied access, nothing else. I had tomhave hteproject reviewed by the institutional review board. Where else could I have had access to the numbers of women with pelvic pain that I needed? What better place could UCLA find than a site full of mesh women? While you are not actually doing any study specific tasks such a data gathering, data analysis, etc., ., you have provided a rich and vital resource to this study. So, dont let this make you lose any sleep. You have done well. By the way, if Im ever given an academy award for best performance in a mesh body, your name will be one of those people that I call out in my acceptance speech….” And I would especially like to thank Jane Akre for her dedication and support of all mesh women”… That may need some polishing up,but I imagine we have time to work on that.

        • Jane Akre says:

          Yes thank you….the researchers are taking it from here but I’m very grateful they are using us as a vehicle for outreach!!! Yeah.

    • Meshie says:

      Ack…shaking head.. as a mesh injured woman, I don’t care that there is no link to mdnd.. what I do care about is Jane and Hope finally got something that will help all meshed injured more help. And hope that finally Doctors will help us not just shake their heads at us.. They got help from us and shared with them and finally we are being heard it’s the start of the mountain crumbling in the world of MESH HELL

    • Bejah Blue says:

      Peggy, Forgive me but I have been away. Kindly remind me of your credentials with regard to the UCLA registry and your critique of Jane. Thank you. Bejah

      • Jane Akre says:

        Hi Bejah… not to worry about that.. She’s allowed to have her opinion and I could see it if I had overstated, but I truly feel it came from a partnership. Perhaps we could debate the appropriateness of that word… not partnership in terms of research… but in terms of its genesis. As for the registry now, it is totally in UCLA’s hands.

  12. Mary Pat says:

    We, the mesh injured, are a mighty force to be reckoned with. Thanks to Jane, for uniting us and keeping us informed, we have grown into a force that the medical community can no longer ignore. First of all, “hell hath no fury like a woman who has been scorned” – and yes, we have men in our community who feel the same pain we do, and we are also fighting for them! Secondly, we have God on our side, and who can come against the power of God Almighty; Thirdly, we are determined to stop this travesty and protect others; Fourth, we are compassionate, we support and care for one another – we are united in our mission and our pain and our life’s circumstances. The medical community KNOWS we are passionate about our cause – to seek medical help and to protect others. We have accomplished much! We have 3 State Attorney Generals fighting for our cause and more to come! Now we have medical research that will produce concrete data that cannot be ignored. We also have attorneys fighting for us, very hard. The pharmaceutical companies thought they could dismiss us. We are in this battle, not by choice, we were drafted into a war that we refuse to loose. They took everything from us. We are fighting for our lives and for the lives of others. We are prayer warriors. We are survivors. We are determined to get justice. We are committed to protect others from getting drafted into this war zone! We are weak in body, buy we are strong in spirit and where there is breath, there is fight! Goliath will fall. Praise God!

    • Jane Akre says:

      You are so right…. how can you all be ignored!!!!!! The truth is you cannot and there are so many people, families, children – you will NOT be ignored and manufacturers know it.

      • Araceli says:

        Thank you Jane I had my mesh put in in 2011 one moth after implantation the mesh eroded thru my vagina walls I got surgery surgeon just cut the piece that exploser out thru my vagina wall the pain got worse in out hospitals er antibiotics pain medication in bed lost everything then in 2016 I said to my self I’m going to find a surgeon that will remove the mesh I don’t care if I die i was aready dead I said to my self well I did got my mesh remove that’s what my plants but my pain got worse I went back to the surgeon that remove my mesh she examine me she said sorry I have to do another surgery there’s a pice of mesh in your vagina well I had the surgery after i was in a weelchair the pain on my stomach went away but I have permenet nerve damage I have chronic pain my hips and my legs are killing me I cry everyday I notice I’m getting like cyst on my right leg I went to the pain clinic to se the especialist he said to me that he’s going to do me a lumbar caudal epidural injection to relax the muscles to see is they go away I also have fatigue I’m tied all the time I have rashes on my body my hair is falling out little by little all this cause of the mesh from Boston syntactic brand name Advantige Fit

      • Chris says:

        I am a male who recently had inguinal hernia surgery with mesh and it ruined my life. Pain with intercourse, pain with urination, pain all the time. I am struggling everyday and am trying to find a solution.

    • Bejah Blue says:

      Nice post Mary, my heart is full. Bejah

  13. Anne says:

    Ladies do your do your part, I did the survey it might not help me, but it willhelp other women. Also, help those doctors to understand the tragedy that we live with day by day. And open the eyes of the doctors who are ignorant and don’t have any idea what they’re putting in a woman’s bodies.

  14. Kathy says:

    Hi jane do you know of a surgeon that fixes these as i am having a lot of trouble finding one here in Canada that even knows what it is.

    • Jane Akre says:

      Where are you located? Unfortunately some Canadian women have come to the states for their surgery….

    • Bejah Blue says:

      Kathy, Maybe you could get the permission needed to come here because only specialists are qualified to address this issue and if you can do that Jane mentioned Una Lee in Seattle who I think is a Urogynecologist with great skills and a good heart. If that is not possible perhaps she could recommend someone in Canada to help you. Wishing you all the best. Bejah

    • Linda says:

      I just wanted to reply to Kathy who asked if Jane knew of any surgeons in Canada who were experienced in mesh removal and complications. I have Dr. Bacsu in Victoria BC She was trained in Texas doing her fellowship there and highly trained in mesh removal. She has done my surgery for removal and I am recovering well. The expense of travelling to the States is something we as Canadian women should not be put in the position of doing. My husband being a retired hospital CEO was instrumental in advocating and finding the best surgeon here. I hope this helps. My heart goes out to all of us who suffer.

  15. Dorothy G says:

    Thank you Jane,Connie and all the Mesh injured for taking their time to believe and stand strong and be there for one another Mary Pat expressed this wonderfully. As for the Pelvic Pain Specialist, sounds like perhaps we have meet before or maybe they all come with that mentality.
    I with prayer and sincerity hope that all suffering from the Mesh may be helped through this questionnaire and if only one is,that is one less suffering as so many have. I was I guess a early on LAB Rats and I have certainly seen my share of Dr who wore blinders to the symptoms or the Mesh would have been off the market long ago. I do not know any research that takes over 100,000++ patients to get their attention. I am pretty sick ,I have an appointment with Dr Raz 2-2017. I Can’t say enough about Mesh Medical News Desk and Jane. I truely hope someday you will receive an Award. You have been there for us all. You have brought us through so much,not only in the US,Canada, Ireland, Scotland, and Africa. I truely hope all counteries will become aware and that Mesh never goes into another.
    I thank you again each one for taking time to participate in this. We are all brought together for one another and to try to save those that have not been MESHED UP

  16. Tammy (KY) says:

    Great job Jane and Hope. I completed and Shared

  17. Nanci s says:

    I have been on this journey since 2002 when nobody and I mean nobody understood what was happening. I am sorry people feel the need to question your motives! I , myself am grateful for a place to go and read what’s happening and be with other women suffering like me. I was questioned for years so it makes me furious when they question you. I feel you are a gift from heaven and appreciate all you do. I don’t care about a link what I care is somethings is being done and if you have followed this we all know for sure you have worked your butt off to keep us up to date. Thank you Jane

  18. anon says:

    Thank you for the link. Ladies, do not answer the question about lawsuit. Citing your CA.

    Everything else is volunteer info. Some things need to be added. It is good, but a little incomplete.

  19. Bejah Blue says:

    Greetings everyone. I also want to wish Jane a very happy Birthday. She is a goddess and protector of women.

    I am preparing for spinal fusion/spine straightening at UCSF not because I just love surgery but because I was told I can not put it off any longer. They told me that my spine is at risk for collapsing…in my minds’eye I picture a monolithic hotel in Las Vegas imploding leaving me an odd two dimensional creature with limited options. I hope if Dr. Sigurd Bevard implants something it is viable. I hope they do not accidently slice open the adhesions guarding the mesh. On the other hand dying in surgery is not the worst way to go.

    The problem is that I would really like to be able to have a romantic relationship with someone I have met so I would kind of like to stay around for awhile. Oh, what a world.

    Happy news…I found a groovy pink cowgirl hat at the dollar store.

    Wishing everyone a happy weekend. Lets remember the meaning of the holiday and its importance as we face a bizarre election season and an uncertain future as a nation.

    Love ya’all. Bejah

    • Jane Akre says:

      You go Bejah!!!! I wish you all good things from your surgery….

      • Bejah, I have missed your commentary. Dont be gone for so long next time…but if you have been pursuing romance, you are partly forgiven. Please, stay around for a long time. Be well. Best wishes for your surgery and recovery.

        • Jane Akre says:

          WE love you and your smarts and good soul Bejah!

        • Bejah Blue says:

          Miss you too SS, and your oh so astute observations. Thanks for your kindness.

          Romance is beautiful, and life affirming but I am so afraid given my/our issues. Still, GOD has put this wonderful man in my path and I can not tell the Father I do not have the courage to try to let this become what it will.

          Bejah

          • God would not have put this man in your life if your romantic abilities and expectations were not compatable. Dont question God’s blessings. Just fall into them with abandon, smiling!

  20. Bejah Blue says:

    Two comments about the link with UCLA:

    (1) The actual link does not seem to work

    (2) Those who were implanted abdominally are excluded even though there is greater recognition now that they have also been wounded, and the same material was implanted in them!!!!!

    Bejah

  21. Bejah Blue says:

    There is something off topic that I have been wanting to share with you all and I do not think I have yet. I saw something on a news program one day a couple of months ago about vitiman C. I think there was a study that looked at putting VC in face cream. The results were promising as I recall. I decided I was going to mix some up myself and see what happened. I crushed pills and mixed it in my modest face cream and began putting it on my face and neck every day and several times a day because here the air is very dry (desert). I just went over to visit a neighbor I have not seen for about a month as she was away. She told me my face looked younger and lines that were there were gone. I am so happy and at this point I feel comfortable sharing it with you. The VC was 300 MG and I used about four mixed with 8 oz of cream. It does not take the pain away but it makes me feel better nonetheless.

    Bejah

  22. Bejah Blue says:

    Off topic kinda….How is it that Hope can have six children and look that beautiful? Bejah

  23. Carol says:

    I am onboard and will take survey today…anything to protect our future generations and prevent this madness from spreading! Thanks to all those that have dedicated so much time and effort!!! You have lead me to Dr. Raz…I seen him and his team this past week. He has given me a new hope, surgery scheduled 2/2017. Just knowing there is someone so experienced trying to help that really understands what our bodies are experiencing makes a world of difference. Dr. Raz told me to trade in my dark glasses for brighter ones, and ladies I suggest all of you do the same, cause we have many people out there working everyday to understand and put a stop to mesh suffering. Not to mention we have the greatest of all on our side “God”! Please keep Dr. Raz and all in your prayers ‘For where two or three are gathered together in my name, there am I in the midst of them’ Matthew 18:20 Godbless you all…Don’t ever give up hope!

  24. Denise S says:

    I’m mesh injured, but hernia mesh, physiomesh has taken my abdomen muscles, belly button, size of a nerf football…. would love to show you how we are all suffering the same things….

  25. Meshvictim says:

    Can you ask ucla why they did not include biological mesh implants in their registry? I’ve had a string of new inflammatory linked conditions since my biomesh implantation.

    • Jane Akre says:

      Why don’t you put that information in your entry to the data… I’m sure the will see it, and yes, that should be included!

  26. Barbara says:

    I am interested in a coupl days young grandso with me a couple of days !

  27. Annette says:

    Thank God my mom die from mesh in 2008 so sick for 2 years before she pass and now me I am sick all the time but do not trust ANY Dr’s so I will die with this Mesh in me but I do fill God will have the last word please pray for each other bc we all need it God Bless all my Mesh Sisters

  28. pearl s says:

    My bladder sling was put in 2010. I’ve been in pain ever since. Haven’t been able to havè a relationship with my husband, he’s had to suffer right along with me. They ruined my life. Jnj ought to pay for all the women’s life they have ruined. Its just wrong. Any they should be made to pay. God bless. All the woman that’s had to expearience this hell!

  29. Amy says:

    I just happened upon this site, as I was wandering thru mesh pages. I’ve done for many years to ingest every single bit of information I can of the subject. I speak mesh. Thought I would say hi ! What a very cool and warm community and I will definitely fill out the study in the next few days. Mine was implanted in 2005 and after many failed revision surgeries and refusals of full removal in Canada, a partial had to do. You don’t need my wahh poor me horror story in between details. We all share the same pain and life altering, world shattering nightmare. I’ve had an amazing man by my side thru it all. I get up every day, grateful to be here. I just figure I can be bitter and pissed off about all of this or…for every minute that I spend angry, I lose 60 seconds of happiness. 🙂 Cheers ! PS…Bejah, I hope that surgery has been a success.

  30. Anna says:

    I am so very glad I came across this site site by accident ideas God leading me here??? I’ve been suffering for years never really connecting the dots!!! Well let me say I’ve been enlightened !!! I have seen a neurologist for 15 or more years, never truly understanding what’s going on until I’ve read information and posts here today. I suffered CPS, CFS, Fibro, Spinal Stenosis,Joint & Nerve Pain, Radioopathy,Neuropathy, Degenerative discs , lastly Neuropathy so bad these last eight months I was taken straight from my bed and put on stretcher by EMTs because I couldn’t walk I had locked up cramps in.my hands and feet!! Taken in Sept 16 4x in one month!!! I was to the point where pain meds were of no use to me unless they were high dose . Where I was considered a Dr Shopper!!! When I would have these episodes and go to hospital Dr would think I was only there for pain shots. It’s very humiliating to be classified as a dope head when you are not. Went to neuro Dr and he said I had autoimmune disease and wanted to put me in a clinical trial for a new medicine!!!!! I’d been on all the Neuropathy meds to no avail. Got put on Gamunex IV infusion 10% 3months ago Dr just uppedit to 25% a month ago. I’m a guinea pig for this medicine the side effects are unknown I report to their pharmacist my side effects when I get them. I get my treatments every two weeks a nurse comes to my apartment . I was going to Dr office until I got so weak I almost collapsed outside the doors!! I don’t have the severe muscle cramps which is Blessing from God . My side side effects have been severe fatigue for days after treatment, weight gain, mood swings,migraines,food intolerances,high blod pressure,high cholesterols, dizziness,slight memory lapses. I no longer have severe cramps orjoint pain though and only take Motrin for pain . I look at this like I’m in this to further studies to make medications better and safer for more people and more accessible so more insurance companies will see the good things it can do for people with disabilities like me and improve their quality of life.I will continue to post and read your updates.

  31. Anna says:

    I got carried away sorry. Yes I did have the Mesh Sling implant surgery. I’m going in for revision soon.

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