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Mesh Autoimmune Database and Registry

Hope Pagano

Hope Pagano

Mesh News Desk, March 17, 2016 ~ Her name is Hope Pagano and you may have read her profile (here) on the pages of Mesh Medical Device News Desk.

Hope, the mother of six and wife to Steven, mentioned to her doctor she had a little incontinence.   His treatment plan was to implant an Ethicon/ Johnson & Johnson TVT-Abbrevo sling.

Besides pain and chronic infections, following her May 13, 2011 surgery, Hope developed new symptoms.

Within three weeks she had fever, muscle fatigue, muscle aches, headaches, sensitivity to light and sound and brain fog.  Within eight months she was diagnosed through double stranded DNA (ds-DNA) and an ANA test revealed full blown Lupus.

Lupus is an autoimmune disease that means the body is  attacking itself in some form. Essentially it is fighting off a foreign invader.  See more from the Lupus Foundation of  America here.

Hope Pagano wants others, who have also developed autoimmune issues following their implant, to add their names to this registry.

“There is strength in numbers,” she says.  “Only with proof in numbers will this be taken seriously.”

Your Mesh News Desk editor has noted about half of those she speaks to have also complained of autoimmune complaints following their mesh implant. Also too are those complaints coming forward following a hernia implant. Also below the original story on Hope are 54 comments, many complaining of similar symptoms post-mesh.

However, these reports are considered anecdotal and not taken seriously by science.  Hard data is taken seriously. A registry is a way to start.

Hope suggests you add your name (below), your email, the symptoms, how soon they developed after implant (not before) and the type of mesh you have. She also notes that the women implanted with the Essure birth control (here) are also reporting the emergence of autoimmune issues following the birth control device being implanted in their fallopian tubes.

For those of you who want to remain anonymous, use another name but include the  other important information.

There are no plans on how to use this data other than to see how many of you emerge so a pattern can be seen, the first step in taking a complaint seriously.

Thank you for your participation!

PS- Be Sure to add your voice to Mesh Problems (Facebook) questionnaire as well.!

Thank you.
https://www.facebook.com/groups/meshproblems/permalink/1194606963903579/?qa_ref=qd

Jane Akre

Editor, Mesh News Desk
janeakre@meshnewsdesk.com

88 Comments

  1. Cheryll white says:

    Sle lupus w many joints replaced now acquired Hemophelia factor vlll

    • Carri Bender says:

      Hashimoto’s Disease

      • Bianca says:

        Had Ethicon TVT sling 2013. Removed 2015 and major complications after removal…from infection and crazy inflammation. Recently diagnosed with Sarcoidosis! Any knows anything about sling complications and Sarcoidosis?? Need help plz…I’m 36 and going crazy due to this sling. My life changed drastically after this

    • Collena M says:

      Checked for lupus, have ra, neck and back surgery needed on main nerve going down leg told would die.everything just like everybody else! In bad pain constantly. Can’t take it anymore. Need to talk bad.

  2. kathy spilde says:

    After having Johnson & Johnson mesh implant in January, 2006, I developed the following:
    Sjogren’s Syndrome
    Raynaud’s
    Osteoarthritis
    Psoriactic Arthritis
    Hernia in groin
    muscle aches

    • Bejah says:

      Kathy, I think the way you have listed complications is very efficient, easy for others to read, etc. I expect we are missing complications because probably most of us do not keep a complete list handy. Your list method will help others to identify things others have listed but they/we may have forgotten to include (I have a problem with this, but then I have a problem these days walking to the end of the hall and remembering what I started down it for!). Time to start wearing a notepad on a chain? Heaven help us.

      I wonder if Alex goes big game hunting on those mega ranches in Texas where for the right price one can hunt retired zoo animals and bring back their heads for the library wall. Seems like his sort of thing.

      Bejah

  3. Jane Akre says:

    If you would add when you were implanted an d the type of mesh. It will be interesting to see if any one manufacturer has more complaints than another.

    • Bianca says:

      Seems like you know about all this mesh/sling nightmare. Can you plz email me at bsm274@jwu.edu? Trying to educate myself. No one seems to know what I’m talking about. Ty

    • Bejah says:

      That is easy, it is JnJ. Got a little “attitude” today.

      There is a company advertising on TV that will make t-shirts in volume for us. If we aleady have t-shirts maybe it is time to update the design just as Jane did to her website. Also people probably will buy more shirts if they have a really interesting design, aesthetic merit, etc. I know a little about this as my husband used to do the PR, merchandising for R&R groups many years ago. Rubber transfer shirts are typically poor quality and will not last long especially if subjected to the dryer. I have a dryer but I always have a clothesline installed and love to air dry my linens, clothing and it lasts longer. So, silk screen shirts are a much better option for us because we want them to last a long time. We want to design them so they are not rendered irrelevant in 12 months unless we want or can afford event based lots (i.e. “Rolling Stones Special Concert, Havana March 00, 2016”.

      I am going through a lot of old notes and there are a lot of post mesh conditions listed so I will continue to gather them all together and just prepare a post for Jane’s consideration so people can just go down the list and maybe check off what they have allowing for notation of what they believe they have but what has not yet been diagnosed by a physician (and I think we all know how reluctant they can be to do this or even to take us seriously, even now).

      Bejah

  4. Kimberly Paige Hall says:

    Severe joint pain
    Inflammation
    Chronic UTI infections
    Chronic Fungal infections
    Exhaustion
    Brain fog
    Hoarseness
    Resistance to antibiotics

  5. Jane Akre says:

    Also how soon after your implant did you experience symptoms……? Thanks.

    • Michelle says:

      I have the Boston scientific pinnacle mesh
      I also have a bladder sling as well. Since that I have had
      Several revision surgeries
      Mesh erosion
      Memory sucks at times
      Eyes don’t feel as young as they used to, have to wear reader glasses they also feel “coated” different times of day and randomly
      Body aches and pains
      Lower right side pelvic and below pain (sometimes stabbing pains out of nowhere)
      Pudenal nerve damage
      Painful sex
      Constantly tired body wise
      Last month I’ve had lower right side back pain
      In January of this year, i started having severe chest pain and went to ER thinking a heart attack, nothing found but then ended up at asthma allergy doctor and between my regular primary care doctor and allergy doctor, I’m receiving weekly allergy shots along with acid reflux GERD medicines. Pain is still there in center of my chest (almost a year now and I think it is creating a bit of anxiety for me now) just recently did a motility test at GI clinic, dr is thinking nutcracker esophogus and querying about auto immune diseases.
      anxiety meds don’t work and I wish there was a way a dr could just remove all this crap mesh and stuff outta me. I would have rather continued to trickle and wear pantiliners than all this, which I’m back to wearing them again anyways. And these litigations…. three years now and law office always tells me the same thing about MDL and people haven’t settled yet etc etc blah blah. Money isn’t going to make it all go away , but maybe money could send me to wherever the best doctor is and buy me the best dr in the world to get rid of this through surgery? I want the pain gone!

  6. Susan says:

    J&J 2008. One year later asthma, hoshimotos, rheumatoid arthritis, autoimmune hepatitis, interstitial lung disease, pernicious anemia, & MANY allergies. These didn’t start at the same time…. but a waterfall effect.

  7. Connie says:

    Hi , I have been diagnosed for a low autoimmune disorder for over 4 years now. I have bad eyes with cataracts which my doctor to me was very unusual for my age 4 years ca go on both eyes. High WBC , anemia , low iron , low himatacrit , pain all over body , depression , low grade fevers but actually no fevers to fight my HBC anymore. I had one that was over 23000 & never ran a fever . My brain gets cloudy and can’t stay focussed . Can’t remember family names . Get lost in familiar places. I may loose items and them bet right next to me yet I can’t see them . Hoarseness , clearing of throat . Weight gain Fromm loss of energy. Urninate multiple times a day on my self and soil my clothes strange order come from my body at times . Very frequent UTI INFECTIONS. Frequent diarreah .have wore the expensive high dollar pads for years .infections & staff in my abdominal scar which is a cut from hip to hip . Stomach cracks slopes all the time if I bend over or pick up over ten lbs. Connie from Alabama fibromyalgia also

  8. 2007-BOSTON SCIENTIFIC-Obtryex Sling. Auto-immune since 2008. List is too long of chronic diseases.

  9. jo risbridger says:

    2009 ethicon prolene mesh for inguinal hernia repair. Followed by 4 peri anal abscesses, groin numbness. Pain. Back problems. Muscle aches. Pneumonia. Allergic to anti biotics.

    • Bejah says:

      Shouldn’t we all consider getting the secondary pneumonia shot widely available now? My pharmacist also recommended strongly that I have the Shingles shot so I did that as well.

      Bejah

  10. Cari says:

    Pelvis pain, cramps, painful urination, blood in urine, bacterial infections, fungal infection, and the list goes on. Dx interstitial cystitis. Don’t know when symptoms started since I had infection and severe pain from the date of implantation in 2012 with Boston Scientific device. I had never even had a UTI before implant. Diagnosed in 2015. Had the diagnostic procedure for the same disease in 2013 and it was negative at that time. Was told interstitial cystitis was caused from autoimmune disorder or bladder trauma, family doctor says I don’t have any autoimmune disorders.

  11. debbie says:

    Had j @ j tvt 2006. Had frequent infections soon after. In 2007 was diagnosed with hypogammaglobinanemia. A rare condition where your body does not produce enough antibodies. Antibodies protect us from infection and disease. Only treatment is very expensive ImMunoglobulin monthly infusions.

    • Bejah says:

      Maybe this whole cultural fascination with all things undead is a collective outcry from the human unconscious about what has been done to us and to others as the moguls responsible for draining our lifeblood continue hypnotize the public with their “Good old American Company” song and dance. Not really alive, no way back, yet not quite dead.

      Bejah

  12. "Decomposing " says:

    J&J TVT -O
    2010
    I had severe pain awaking from surgery implant and total vag hysterectomy. my bladder was a little prolapsed and occasionally I leaked a little. Sling was Supposed to lift my bladder like a hammock and I would have no more worry….

    First mass /infection first week of implant. pelvic bone crushing Pain immediately . (Still to this day ) Razor sharp pains .couldn’t sit, constipation. urinary infections, twisted colon,
    diagnosed with pudendal nerve damage ,obturator nerve damage .. CRPS .. Auto immune disease started in my right foot about 2 years ago, and has spread all over now. The foot pain of a hot poker stabbing me … but my foot felt freezing.? bugs with razor sharp teeth electrocuting and stabbing me all over my body now.

    I have sacral inflammation and pain , rectal pain, pain in muscles,bones. I walk with quad cane for about a year now . i have headaches, brain fog, scalp pain, severe TM J , Allodynia , face pain , vision changes , sinus infections, . rashes . I have become Allergic to most pain killers and so many meds as well.

    I have had 8 surgeries to date involved in mesh implant . including 5 mesh removals, mass drainages, bridge resections,scar tissue removals cyst removals.
    i have had a colonoscopy, 3 hypogastric plexus blocks, 1 ganglion impar block to try and relieve some of the pain . Botox in my pudendal nerves, (caused major allergic painful reactions) Abdominal pain that feels like birthing contractions that will never end until “they” are done strangling me and crushing me to my very core. I even had Ketamine infusions during last 2 surgeries. it gave more relief a little longer. Mesh found in my legs ????? my bone had to be cut to free mesh.

    I lost count of the MRIs,ultrasounds and x-rays years ago.

    Now I am told I have Global Pelvic Floor Prolapse… all the removals cause everything to collapse.

    I say my own body hates me and is trying to get away from me.

    Everything literally down and coming out of me. so disgusting to have to just “pee” because I literally bump into my my body parts that are trying to escape from my tortured body.
    I’m still here waiting for my turn . somehow I am still here.

    . I am getting worse. I am waiting on wait list to be seen by new doctor . Tooo much waiting. Somehow I am still here but I don’t know how most days. I go to Acupuncture,physical therapy, deep tissue massage therapy, chiropractic adjustment. do as to keep my body moving. I eat well and drink plenty of fluids… I had severe constipation from twisted colon. I had to do Enemas for almost a year… I take herbal supplements to help me now. Doctors say “keep moving”.

    There is soo much more !! I am just afraid to talk because of lawsuit. I feel like I am Walking around Dead bit my mesh….. and I am feeling my body Decompose. I am just this shell of what I used to be. My brain is used to Pain.. they say the CRPS … Complex Regional Pain Syndrome somehow allows your brain to process pain so in order for my body to function…. I don’t feel like I am functioning. I feel like I am rotting away.

    • Bejah says:

      Dear Decomposing, I know what only some of what you speak of is like. It is unbelievable what we can bear and still be whereever “here” is. You must know this and believe it: You are not decomposing any more than any of us is because life is a long journey toward death, a journey of decomposition and rebirth, cycle after cycle, season after season. I often feel my body is rotting now, those signs of aging alone before considering everything else, and evidently our urine becomes stronger as we age and I hate that smell and do everything I can to eliminate it. Remember that you are not your body. You are the one that lives in the body now but you are not the rotting body. You are asked to bear this, I do not know why, and so you must if you can. You bear witness even by writing this powerful story of your experience. Thank you for your courage and example and your truth. Even in the deepest hour of the night, the quietest moment of the day when you do not hear the birds sing or the clock tick, when there is only emptiness in you spilling out into the room, we are with you but more importantly you are never alone because the one who sent you into this life is with you always even unto the end of all things.

      Bejah

      • Decomposing in NJ says:

        Thank you Bejah

        I want to respond more to you but I don’t have much strength today. Your words mean everything. I will try to remember that.

  13. Toni says:

    I was implanted in 2006 with a Prolift and TVT . I have had mono 3 times staff infections Chronic UTI’s for which I am on profalactic antibiotics joint pain severe in my hips also constant sores on my legs and bottom that won’t heal. I have not been diagnosed with autoimmune . Don’t know what to ask doc to test for. I am now jobless and no ins due to 4 surgeries and mono in last 3 yrs of hell.

    • Hope Pagano says:

      The first test they did with me was called a ANA (anti nuclear auto bodies) followed by a full auto immune panel. I was referred to a Rheumatologist for that. Best wishes ❤️

  14. Cheryl wilson says:

    I was implanted 2011…with in six months erosion. That Dr removed only what has fallen out. Four surgeries after still finding mesh. I now have scleroderma..hardens organs and skin. Bowel issues,raynards,lipidema,lymph edema,skin cancer,glaucoma,sjorens loosing teeth. spot on ea lung. I have specialist for heart,lung,gastro,dermatologist,my right side heart isn’t working. I now have a cpap,nabulizer and compression pumps. I went from 0 melds to 10 a day. This also is messing with thyroid. I have AMS Sparc bladder mesh. Allergies to everything.

  15. Valerie Griffith says:

    I was implanted with a CR Bard Align TVT tape in 2012. I have since developed Fibromyalgia, gluten sensitivity,all kinds of gut problems, and continuously reactive lymph nodes. I’ve had a positive ANA, but do not show any positive test results for anything. I tried to get tested for Foreign Body Response and allergy related to the product, just this year. However, I could not get a sample of the product for testing and the allergist could not get it either. It’s a shame we can’t even be tested for the allergy even after implant.

    • Valerie Griffith says:

      I developed gut problems within the first 2 months and Fibromyalgia was finally DX’d 2 years later. However, pain was continuous until just last year. The mesh has failed and incontinence returned. But, cannot afford removal with no job or insurance. I still go to docs hoping they will discover a starting point for what is making me so ill, but because tests are never positive for any real danger I’m told it’s all in my head.

      • Valerie Staton says:

        Hi Valerie,

        Same thing, although I had been diagnosed with Collogenous Colitis, which is a microscopic colitis, I was doing fine when I had the surgery in December 2012. The next month, Rheumatologist said Fibromyalgia, have changed Gastroenterologist 2 times, and lastly he said, “I want to help you, I just don’t think I can”. I was never constipated one day of my life before this surgery. Now my life has become a living hell of doctors, physical therapy, pain, etc. I did finally put it all together in the end of last year and see the Doctor who did the implant, and he admitted, Yes, I am sure that the implant is the problem. So now I am on a quest to have it removed, no job, no money!

  16. Kelli says:

    Bard flat mesh 2002 – migraines, pelvic pain, Uti’s , uveitis, mesh erosion, joint pain. J&J TVT 2014 – mesh erosion, transverse myelitis that has left lesions on my brain and diminished fine motor skills in my right hand, possibility of MS, to be determined on subsequent MRIs

  17. ANNA SWEETING says:

    I had my mesh implanted in 2008. From less than six weeks out I had problems, incontinence, I have not had relations with my husband since February 2008 because of pain, pains in my legs, neuralgia in my legs that ALL doctors cannot explain by I just recently found out it is from the anchors on my pelvic bones that they could not remove. The worst part of all of this is now I have Lupus anticoagulant which I never had before. This was found during a routine blood test for a colonoscopy. I have proof that I never had it before because of the bloodwork before my surgery to have the mesh implanted. I already have ischemia to my brain due to the “little ministrokes” I have had due to the Lupus. Am always worried about a blood clot. Always have pains and tingling in my legs, my pain management person thinks I am a “hypochondriac” and this is what hurts the most. That mesh implant was a tragedy. I have the TVT-O J&J/Bard Industries. Guess what I was told by my attorneys that J&J will try every case and that MAYBE my grandchildren will get my settlement. So unfair and my poor husband. Even now with the mesh removed I still cannot have relations. I was lucky. I only had two surgeries to “fix” things. Well good luck to everyone and isn’t it nice that they postponed the trials in April before Judge Goodwin for Medical Examinations… another year goes by

  18. Virginia says:

    Dear Jane
    If you are asking for our medical history for what reason are you collecting this? In the past women have given this information only for you to try to get money from them for many reasons … Ladies don’t give this information to no one but your Attorney….

    • Jane Akre says:

      And how is that working for you Virginia? Has your attorney listed autoimmune issues in your trial or your complaint? The answer is no, autoimmune has been left out, yet so many experience it, and an autoimmune disease is likely to last a lifetime. The only way this hidden side effect of mesh will be made public is if you all make it public!

      • Hope Pagano says:

        Virginia, we are starting the database for support and to show the authorities that we may not know the science behind what is causing us women with polypropylene implants to develope auto-immune diseases but it is indeed happening and can not be denied. We need to show a pattern. If you do not want to participate than that’s no problem. I have been sick a long time and want to know the truth about what has happened to me and others like me before this disease kills me. My organs are being affected and am afraid that J&J will get away with poisoning me if I die before the truth is exposed. Trust me they know what’s making us sick.

  19. Darla says:

    J&J transvaginal Mesh 2008
    2011 revision surgery for erosion
    2013 revision for erosion
    2015 sle lupus
    Sjögren’s syndrome

  20. Lauren says:

    C R Bard mesh, implanted 2002. Removed 2013. I went into cardiac arrest at time of implantation, my life has been deteriorating ever since. I had a diffused systemic affect from the synthetic material causing severe skin rashes, depression, arthritis, fatigue,hair loss, chronic pain, necrotic tissue surrounding mesh. My body is decomposing as I struggle to survive. Most doctors can’t help, it’s very lonely and frightening. These corporations have poisoned us and will not acknowledge the terrible damage they have caused to many innocent people- women and men, young and old. This is a hideous crime that does not get nearly enough attention. Most assume all we want is money when we would do anything to gain back our good health that was stolen from us. Thank you so much Jane for all that you do to expose these evils and give us suffering, support.
    * Btw- Virginia, (from post above) how dare you say that Jane just wants money when she has been selflessly fighting for us for years. Jane has been kind enough to talk to me in some of my darkest moments and NEVER once has she sullied our conversation with talk of money. I would hope anyone who wins or settles a case would find goodness in their heart and give something back to Jane and others that have helped us along this frightening journey. I wish all of you suffering strength to carry on. You are not alone. We need each other’s love and understanding.

    • Jane Akre says:

      I’m so sorry Lauren,,,,

      • Beautiful Mesh Sisters standing together for one another, we ahve each other, we understand the symptoms, when many doctors don’t even or refuse to . It is not about the money none of us ever asked to be sick and dying. We all trusted our doctors and the simple procedure they were going to perform, that has now cost us many many doctor vistis ran up many medical expenses that we will continue to fight as long as we shall take a breath.

  21. Anna says:

    I have 2 implants from J&J, the burning pain in my in my leg never stops. I can’t sleep on either side because I am in excrutiating pain. My pelvic pain is throbbing especially when I am trying to sleep. I am constantly taking pain meds , antiiflamatory, sleeping pills, stomach pills, which don’t help because the pain controls my sleep. I’ve had hip injections, back injections, pudendal nerve block inj, RFA, plantar fasciitis from limping, three positive ANA results, rash on my feet,hands and back,positive cytology results. My life after mesh has been a living hell. But, still J@J claim their product is gold standard. I guess this is all mental. Who said SIU MESH DOES NOT HURT THE FDA SHOULD PAY FOR OUR PAIN TOO.

  22. me says:

    OMG Virginia, you are a troll and you know it. Real mesh patients do not act like you, at all.

    Please, ignore this person ladies. We have to exchange, share and discuss our mesh stories to get help, assistance, a place to go and more.

    One of the doctors who reads here called ME on the phone at 10 PM one night, after I left him a message regarding a question about something that happened to me suddenly. Had I not shared medical information with him and others, how would I had known what went wrong?? I was so thankful for him and for this site for bringing us together. When have you ever heard of a doctor calling a patient they did not know, and for free of charge, offering immediate medical help and an answer?

    I am a real mesh patient.

    My life has been ruined.

    I don’t care about money, even though I am dead broke. I care more about justice and prevention for others. Money will help treat me. I am paying so much out of pocket now for medical care and I can’t afford the care I need due to all of the serious complications of mesh.

    i want my life, family, job and health back.

    I can’t walk or go much anywhere.

    I am so tired all of the time. So much pain.

    I searched for years for help and finally one day, this site popped up. I would bet money, if I was a betting person, that Jane’s site was being swiffered from certain search engines for a long time. That is not as easy to do anymore.

    I don’t care who sponsors this site as long as it is here forever and the lights stay turned on.

    Everybody involved with all of this mesh mess needs one centralized, organized location to come too.

    The compare and contrast is pretty even here.

    Still Standing and the others, thank you for coming forward.

    Jane, please ignore the drive by’s. I know that is hard, but just ignore.
    Thank you again for offering this site.

    From 2007-2016, I have known nothing but pain and suffering. I would never have been able to comprehend what I have been through alone.

    Sometimes, coming here and reading what others are experiencing and how they are handling it really helps me. Most Doctors are no help and for a really, really long time, I thought they were being uncaring, rude, didn’t care, but now, I have learned, they don’t know. They just don’t know what to do.

    There is no critical or accurate follow up care for mesh patients. This has to be addressed. This has to change. Have you seen any doctor advertise they will treat mesh patients after the surgery of entry or removal? They only treat very specific conditions.

    Think about that…We need change.

    • Mary Pat says:

      I have an idea: if you have state owned medical schools they most likely are subject to public disclosure (most governental agencies and state owned schools are subject to public disclosure). I suggest that we have a meeting of the minds with Jane, StillStanding and our members who are medically educated. In that meeting of the minds, lets come up with a public disclosure request that can be submitted to medical schools to get factual information telling us and the world exactly WHAT medical schools are teaching doctors about mesh. Wouldn’t it be interesting to find out exactly what doctors are being taught. While we’re at it, we should also find out what pharma eutical companies provide for each medical school in the way of grants, etc. i am throwing this out to see if anyone is interested.

      • Jane Akre says:

        That’s a wonderful idea…. I’ve thought about it before… just what are new students learning, Do they even know how to do a non mesh repair? Suggestions for schools? *Update- I spoke to a doctor today from U of Washington. I asked him this question. He said that learning non mesh repair and suture only is only if they elect to learn it. In other words, mesh repairs are taught, that is the standard. I asked him, wouldn’t that be something a doctor would want to know, just in case? He said again, only if they elect to learn it. He pointed to awareness being taught by Dr. Una Lee during grand rounds where she discusses mesh and complications. Thank you Dr Lee.!

        • Still Standing says:

          Interesting. I do know that many medical schools are currently working on new curricula. It is a tremendous undertaking to change content. My guess is that med schools dont have medical management of mesh as a major focus. It would be more as students break into their specialties ( urology, gynecology, urogynecology and others where they come across mesh. I do know that some physicians are working to establish post mesh best practice protocol. I think that when it is published it will generate more conversations about how to care for the post mesh woman. Right now it just seems to be a point and shoot process. I think a registry could serve two purposes. 1. To establish patterns and 2. To educate our mesh community. This will not be accepted as real “science” but it can add to the collective knowledge. Yes, I do think a more standardized form would be better to quantify the information. The one importsnt question that cant be answered is do the women who report autoimmune issues have a family history of autoimmune disorders? If so, the mesh may not have “caused” it, but may have allowed that genetic tendency to be expressed. I think another important question is have you been diagnosed by a physician or self-diagnosed based on the reported symptoms of others. Yes, we can have a meeting of minds. Say when.

          • Jane Akre says:

            Good idea to qualify it more…. so a form may be:

            name, age, contact info etc

            When was your mesh implant? What type of mesh was used? Which manufacturer? Do you have your medical records?

            Have you been diagnosed with an autoimmune disease including, but not limited to, fibromyalgia, lupus, rheumatoid arthritis, celiac sprue disease, vitiligo, psoriasis, inflammatory bowel disease, hashimotos disease etc

            Were you diagnosed by a medical professional?/ by whom and what test was used to confirm the diagnosis/ Do you have test results?

            Your symptoms?

            Did the symptoms exist before your mesh implant?

            How long after the implant did you begin to exhibit symptoms?

            Do any autoimmune diseases run in your biological family? Has that been confirmed by medical tests/professionals?

            Anything else??? Hope you okay with this?

          • Still Standing says:

            Jane, I would not be comfortable collecting any personal information including name and contact number. I think the survey should be set up on survey monkey, thus keeping confidentiality controlled. Survey monkey would have a participant number, then we could send followup requests to participate in a deeper conversation.That is where much data is collected in quality of life type surveys. I think this should be carefully thought out so that it could be taken more seriously as a quasi research piece. Additionally, if a survey is done with one particular focus, then all those who take part in that one could be disqualified as a participant in a more widely defined scientific research project. They would assume that those women may have developed a bias toward one diagnosis. After this piece is done, there may be a research team that finds it interesting. Funding is an entirely different horse but that would not be our problem. We would hand off the data we collect to them, once again not providing any data that could identify the individual.

          • Jane Akre says:

            Good idea… i agree, whatever is seen as more credible for researchers to follow up on…..

  23. Mary Pat says:

    Virginia – we are on to you. Go to hell where you belong! How dare you accuse Jane of greed or any unethical behavior! Jane is the most self-sacrificing person we know. I speak collectively for all of the mesh injured, and we all know our numbers go far beyond those implanted with mesh. Mesh injures relationships, marriages, families and even employers. Mesh injures society as a whole. Jane, God bless her, has courageously worked to bring this truth to light and to offer a safe harbor for mesh injured to find solace, information, understanding, support and wisdom. We, the mesh injured, will be eternally grateful for Jane and ALL that she had done for us. So, I repeat, you are obviously not mesh injured, you have NO business here! Go to hell where you belong. Yep, I am a Christian. Even Jesus was clear with Satan. “Resist the devil and he will flee”. Virginia, “flee”. We love you Jane!

    • Jane Akre says:

      Thank you Mary Pat… I appreciate the support but understand why people question this. I question it as well though I know there is no financial motivation…. …I just think its a job that needs to be done… and no one else in the media is doing it! That makes me crazy. you are very sweet, thank you.

  24. Mary Pat says:

    Still standing, I believe you are educated on scientific reasesrch. Can you direct this survey so the responses will be scientifically evaluated. It is great that people are respo ding but I am guessing a check the box kind of survey would give us a more conclusive picture of immune related issues. Let’s do this ladies. I will complete the survey as soon as it is available.

    • Mary Pat says:

      How about contacting the national lupus foundation? Maybe they would assist?

    • Still Standing says:

      Ive been thinking about this. I think the first place to start would be a quality of life survey, followed by a qualitative study. The qualitative study would be with a certain random number of responders in the quality of life survey. The qualitative piece would be an in-depth phone interview that is then written up it could have some impact and the good thing is both of these could draw a very distinct picture of our pain and how it impacts daily living. Autoimmune issues could be discussed then.

  25. Cheryll white says:

    When does this end, I’m worried about death, I am in kidney failure,huge thyroid issues previously cancer whole organ gone, I now have severe progressed sle lupus w thumb joints replaced left shoulder left hip left knee .. My autistic son hasn’t lived let..

    • Jane Akre says:

      Cheryl- Tell us how long after our implant were you diagnosed with lupus…. thank you … I’m so sorry.

    • Bejah says:

      Dear Cheryl, Worry not about death. If your life ends and the light of your soul grows dim and you do ceace to exist you return to nothingness, your energy recycled as nothing is ever non-existant but the you that knew pain and suffering and all else will be gone. There will then be no more pain, no suffering, and no knowledge of these things. On the other hand if your soul continues to exist in some other dimension you will also be free of pain and suffering, and you will have participated in the suffering of the Christ and forever be one with him in Paradise. Either way, you will be free. Your loved ones will go on as human beings have always, finding their way, despite losses and happiness. Find some comfort in this if you can.

      Bejah

  26. Mesh Madness says:

    BSC Advantage Mid-Ureteral Transvaginal Bladder Sling in Sept 2005.
    In the beginning all was good, cured my SUI. My problems began 4-5 years after implant
    -2010 IBS
    -2013 Osteoarthritis of multiple joints
    -2015 Fibromyalgia (achy joints, muscles, bones, chronic fatigue, anxiety, depression)
    -2015 Abnormal Blood Work (low IGA, IGG, IGG4)
    -2016 Eczema
    Started on Cymbalta Dec. 2015
    Although this is my first post, I have been following Mesh News Desk for a couple of years now, as it is the best and only site to stay abreast on the current events of polypropylene mesh. This topic of autoimmune issues and its relation to mesh is of interest to me as I try to understand the changes taking place in my body. I’m glad to see a gathering of information and hope it leads to some answers. A big thank you to Jane—it’s obvious to most readers the great service she provides. Also thank you to the contributors and the commenters. I have learned so much from this site and will continue to monitor it daily for new articles and comments

    • Very well said, i have learned a lot through both Jane articles and my friendship with Janis. I have reprinted somethings from an article I believe in Aug 2013 n the autoimune disease as I was dx in 2011 0r 2012.Surg was in 2005.

  27. Carol says:

    I had Boston Scientific implant in June of 2010. and 2 revision surgeries since. The last time I went to get checked they couldn’t get speculum in because it’s too painful. I have a long list of physical issues. I contacted a lawyer in 2013 after second revision and haven’t heard a word from them. Not sure if I’m up to physically doing much of anything.

    • Still Standing says:

      When did you have your first revision surgery? That could be the date you became aware of the mesh causing you problems. Or, when did you determine that the mesh was harming you? Was it after a few weeks, or a year or more. I ask this because there is a statute of limitations for implant product liability lawsuits. Most are two years or five years. You would have to check what your state allows. Your attorney would argue your case not on the date of the original,surgery, but when you became aware it was the problem. So, it is possible you have run out of the statute of limitations for your state. Call a lawfirm . Jane can probably give better information than I can, but determining the time you became aware is very important. Either way, you are running out of time to get representation. Get going!

    • Meri says:

      Boston Scientific Obtrix and Bard Pelvicol. I woke up from the implant surgery having an allergic reaction- given Benedryl in recovery.
      1 year later, explant Surgeon couldn’t put the scope in because my vagina had shrunken so small it was “dysfunctional”. He made a new vagina using graft from leg. The sling had embedded in urethra and disintegrated into 2 pieces & remaining Pelvicol had hardened.
      (Both devices were defective if you ask me.)
      My miraculous surgeon has me functioning again after 3 surgeries 🙂
      Horrible and varied symptoms just like the others I’ve read here started about 4 months after implant. I went to a Psychologist as I thought I was going crazy with the variety of problems & no idea I had mesh in me. (I was told cadaver skin) Scalp nerve pain, light sensitivity, ear ringing,chronic pain in joints, tired, brain fog, and of course pain in groin/butt and cut glass feeling w/ attempts of intercourse. Lots of weird blood test results – high free flowing calcium made them test everywhere looking for cancer but that has resolved & since diagnosed with autoimmune disease ANA markers – Autoimmune Thyroid, ischemia in brain (fog/memory issues).
      Prior to implant I had 100% perfect health/no disease. Hiked and backpacked the globe had never taken a pill. Just want my energy, clear head and pain free life back. Thanks Jane for the compilation. I skipped many but you get the gist. Autoimmune disease, fibromyalgia and acute chemical sensitivities seem here to stay.

      • Jane Akre says:

        I’m so sorry. Could you share the name of your miraculous surgeon because many would like to know that…. thank you.

  28. Rhonda says:

    TVT-O and Sacrocopoplexi Aug 2010. Mesh pain began November 2010.
    4 years with pelvic pain with Dr. treating me like it was all in my head. 2014 diagnosed with Interstitial cystitis, PFD, mesh related pain. Finally Dr. that listened to me and took the time to find source. Weeks of internal and external PT, bladder instillation, tried Rx, supplements, Diet restrictions, HRT, Chiropractic, and acupuncture. Out of options…mesh needs to come out.

  29. me says:

    Ugh!

    Doctors STOP!!!!!!!!!!!!!!!!!!!

    Dang it, stop telling women in 2016, and beyond, that all of this is in their head!!!!! If this keeps up, we as patients have the right to post the names of the doctors who keep telling patients these lies, that it is all in their head and not mesh related.

    Patients will soon post your names. The list is long and your reputation will suffer. As a doctor, you have a duty to treat, not injure by telling injured woman it is in their head.

    No doctor can sue a patient if he/she said it. If you can’t treat the patient, don’t book the appointment. Stop stealing money from patients and stop giving false hope. Every time a woman mesh patient books an appointment with a new doctor, she bows her head, and she whispers, please let this doctor be the one who can save me or help me. Then, he / she comes in and says “Oh lady, get a life, it is not mesh related, it is in your head. ”

    Doctors will not wear us down. We have to stay strong ladies.

    A patient stated on another site she is opening a forum to take complaints against the doctors who refuse to acknowledge mesh patients and the damage that has been done. Doctors have to to be held accountable too. How did they ever not be held accountable?

    This is not a witch hunt. But, it is women’s lives and it is time doctors started doing the right thing.

    Responding to Medical School’s teaching mesh? Well, it was my understanding the pharmaceutical companies were the ones teaching doctors about mesh, and the reps who did the teaching had no medical experience what so ever. And those same reps were also in the operating room while the mesh was being implanted.

    And if that is not bad enough, there were the doctors who learned how to do mesh form a 10 minute video!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    WTF? Can anyone who has an IQ above 60 please explain how this is possible? An average and sometimes below average person teaching doctors about illegal, incompetent medical devices to use in women, and in some men?

  30. me says:

    Flint Michigan 2016

    Millions of people are in shock and question how, how, how could such a travesty happen in this day and age? And had it not been for one woman refusing to sit down and shut up, who insisted the water department come out to her house and test her water asap, how long would it have been before anyone else demanded action or did anything?

    People are reluctant to start battles out of fear. Most people want others to fight their battles for them.

    If there is going to be change, everyone who is injured by mesh has to do a little something.

    Figure it out. A gag order means you can’t blast the pharma company or their legal staff. It does not mean you can’t do something else to be involved. If you want change and help. you have to be willingly to stand up for it.

  31. Janet B says:

    Implanted in 2010 with Boston Scientific Lynx midurethral sling for SUI. Within days of implant, was back at E.R. with increasing pain. Within 6 weeks, could not walk, sit, touch my legs together, and pain was getting extreme. Before 3 months, I was hospitalized for pain control, could not pee, had to self cath. Mesh fully removed 5 months after implant, pain got much better. But surgeon couldn’t guarantee 100% removal, said he got 99%. Have since developed Raynaud’s autoimmune condition.

  32. Jill Melvin says:

    I had the t.v.t-o tape put in 6 years ago since then my health has detearated I now have been diagnosed with S.L.E. Lupus fibromyalgia water infections so bad that 2 years ago I was rushed into hospital with sepsis!!!!! Having this terrible tape put in was the biggest mistake of my life!!!!!!!

  33. Sheri Hanson says:

    Implanted Jan 7, 2010 with American Medical System’s Monarc “Sling”. Pinching and nerve pain in obturator nerve right from get go. Could not sit comfortably. Countless visits back to surgeon, who refused to believe anything attributed to mesh. 10 months before referred to Urogyne who immediately said it was sling and urged immediate removal. Said I’d be pain free within 72 hrs. Pain exacerbated after surgery, immediately upon waking I was screaming in pain, did not want to be discharged. Tricked into believing mesh fully removed but only partial removal, like many other women. 5 days later, back to Urogyne….could hardly walk. Response was it was obviously not the mesh but must be skeletal…referred me to orthopaedic surgeon. 6 months later, or tho doc wanted to put a steel plate in between pubis symphysis. 2 years later found online mesh support group. Realized pain was caused by the mesh. Found a Urogyne in US (I’m in Canada) who removed left side mesh sling. 6 yrs later I still cannot sit at all! I mean completely…not able to drive, sit to eat, sit for a movie, funeral, etc. Pain has spread to all of left lower abs, groin, hip, leg, buttock and low back. On narcotic pain meds since 2012. Increasing joint and muscle pain. 2 yrs later Diagnosed with Lupus, Fibromyalgia, Reynauds, Sjogrens (losing my teeth), arthritis, interstitial cystitis, and most recently POP….another side effect I believe to be caused by the mesh….repeat surgeries weakens/damages the vaginal wall and pelvic muscles….I feel terrible thinking like this but I predict this may happen to others down the road :(. The list just doesn’t seem to end, it’s impossible for me, personally, to cope with, and like so many other women (bless those who share these embarrassing issues) I’m chronically depressed.

    • abandoned says:

      I have multiple medical orders pending and can’t even look at them without
      becoming hysterical…so tired of all the pills and body failure, so tired of fighting
      this battle.
      2010 Boston Scientific transobtruator sling for SUI by gynecologist. It worked…I have a neurogenic bladder
      urine retention, chronic constipation, could not sit for more than 45 minutes, brain fog, exhaustion, infections…gyn told me for 1 & 1/2 years “There is nothing wrong with your bladder or the mesh. It’s in your head, you are just too uptight. Take 30 mg of valium and cath yourself”.
      Now…I have seizures, ischemia, microvascular leukencepalopathy,
      brain damage, hoshimotos, Auto immune not of otherwise specified,
      Raynauds, Antiphospholipid Syndrom, and more.
      I pray everyday that God will take it away and make me hole again.
      We have a right to be treated with integrity and respect by doctors.
      The ones who are insensitive and emotionally cruel should be turned into the medical board for investigation of breaking their
      “DO NO HARM” promise.

  34. Stacey says:

    I was implanted with the J&J TVT in 2010. I developed a kidney infection and severe pain right away and kept telling my doctor something was wrong. After about 8 weeks of complaining, he agreed to “remove” the mesh. A few minutes before being taken back to surgery, my doctor came in and talked me into letting him cut the mesh in two to relieve the pressure so I could pee. I was good for about 9 months after this but then started developing severe pain when sitting, standing, intercourse, etc. and started bleeding (I have had a hysterectmy). In 2011, I went to my doctor who told me nothing was wrong. I went to another local doctor who also said nothing was wrong. I asked to be referred to a doctor in St. Louis but he would not treat me wither. He told me the surgery was too risky. He wanted to cauterize the areas where the mesh had eroded. I was in so much pain I wanted it out. He referred me to a dotcor in Oklahoma City who was my life saver. Fianlly, in 2012, a doctor removed what mesh they could as well as repaired a fistula. He told me I was a real mess inside! After the surgery to reconstruct my vaginal area, I had another surgery to use my own tissue to make a new sling as I now had no bladder control at all. I had to wear a catheter and bag for a few months and then had to cath myself for a few months after the catheter was removed. I have experienced really bag leg and foot pain that I never experienced before my tvt mesh surgery. I have lots of memory issues and brain fog, low immunity to sickness and ache all over. I have tried to relay this to my doctors and even my lawyer at the time and tell them it’s related to the mesh. I had to quit my job in 2013 because I hurt so bad. No one believes me when I say it’s from the mesh. I feel helpless. I have good and bad days and have been blessed with a very understanding husband who allows me to stay home.

    • Jane Akre says:

      Would love to hear the name of your doc in Ok City…. always looking for good docs. I hope you have a good doctor and a good lawyer as well as disability. I’m sorry. This is an autoimmune registry if you have one to report.

  35. Bejah says:

    Jane, I do not seem to be on list of participants any longer, perhaps with change of website.

    Just thinking, rather than have people just post, is it possible to have an Excel spreadsheet imbeded on the site so the data can self organize? I know Microsoft did develop such a program several years ago and I even took a class in it but found it personally very difficult to work through. Perhaps you have someone organizing the data, if not we might ask for volunteers to do it. Any thoughts on this?

    Hi all, hope everyone is OK….

    Bejah

    • Jane Akre says:

      I may have some exciting news soon on the registry. Hang on… there will be an update which will determine the input criteria. Fingers crossed!!!! Thank you all for participating. Your contributions are vitally important and being noticed! Yeah us!!

      • Bejah says:

        Thanks Jane, that is good news. Being able to sift and sort that data would be wonderful. Remember people, good input = good output. Might be good to distinguish between self diagnosed and Dr. diagnosed symptoms, etc. for this purpose.

        Bejah

  36. Bejah says:

    Hi everyone, I do not know if this has been mentioned yet (Too bad we can not check by just entering the word but sounds like that may be coming (Thx Jane)…did anyone mention damage to teeth, mouth? I also just learned recently that narcotic pain medication causes damage to teeth among other things…just the lengthy entry at WIKiPEDIA scared the skirt off of me so I will never allow myself more than I take now and I am (thx to Still Standing) other options searching for stuff for my pain toolbox.

    Bejah

  37. Bejah says:

    I noticed there seem to be an interesting number of chemical companies producing polypropelene in the middle east who are partnering with “American” oil companies and they are opening new plants all over what we once called the “third world”. Wonder what their biggest market is.

    Bejah

  38. Barbara Melling says:

    I have had two the first eroded thru vagina ,then he put another in bolted thru pelvic bones , I have constant pain throwing up at times blood in urine diagnosed with lupus but Anna came back neg , diagnosed with R.A. Factor high 15, septis twice this year fever over a year sick for years not knowing till last year mesh burning feels like glass cutting in uritha can’t sit lay stand everything hurts ! We need help years ago!

  39. Connie says:

    Colaplastic TOT December 2008

    Removal June 2012 (except anchors )

    Problems after implant:
    Erosion, infections, intercourse pain, unable to have sex because of pain,etc…

    ANA tested positive went to 2 different Ruemataligist one diagnosed RA. The second diagnosed it as fibromialgia.
    Symptoms head aches,bone and joint pain, muscle pain, cronic fatigue, brain fog.
    What is so very scary to me is my memory loss and thinking one thing and what comes out when I speak is not the same.
    I just take one day at a time. I spread the word as much as possible about this devil mesh! What I can’t believe most of all is the FDA is still letting these companies still put this polyurethane mesh into people’s bodies! MOST IMPORTANT the MSDS states plainly that the polyurethane mesh is NOT to be put into the human body! How can they continue to harm people and sleep at night. The GREED of people makes me so sick LITERALLY!

  40. Joyce says:

    History of the 2 Kinds of Mesh I had. One from C. R. Bard the other from Boston Scientific.
    Both were implanted in February 2012. At the time of the surgery I hemorrhaged. I was not told, never given blood, and released the next day to go home. I found out when I got the hospital records.
    Pain never stopped. Fatigue never stopped. Bleeding never stopped.
    Nasal Polyposis-5-9-2012
    Nasopharyngeal Mass-5-9-12
    Turbinate Hypertrophy-5-9-2012
    Vocal Cord Lesion-6-13-2012
    Laryngopharyngeal Reflux Disease (LPR) – 6-13-2012
    Laryngospasm-6-13-2012
    Asthma-6-13-2012
    Bronchitis-6-13-2012
    Mesh Erosion after POP/SUI surgery-2012
    Discharge & Light Bleeding Continue after POP & SUI Surgery-Present
    Atherosclerosis (Noted in Aorta & Iliac arteries. Small calcified plaques.)- 4/2013
    2nd Mesh Erosion Located-2/11/2013
    Pelvic Muscles Spasms-3/18/2013
    2 MM Sigmoid Polyp Removed/Benign – 2013
    Mild Internal & External Hemorrhoids – 2013
    LDL level – High (251)-2013
    LDL level-12, 2013-167
    Vaginal Athropy-2013
    Vaginal Scaring-2013
    Shortened Vaginal Cavity-2013
    Type 2 Diabetic-2014
    Multilevel Mild Intervertebral Disc Space Narrowing/Degenerative Plate Changes-2/21/14
    Scattered Atherosclerotic Calcifications in Aorta & Iliac Arteries-2/21/14
    Degenerative Disk Disease/Spine, Facet Disease L4-L5/L5-S1–3/19/14
    Mild Joint Space Narrowing/Hips, Arthrosis/Both Hips, Sacroliac Joint Dysfunction/Hips-3/21/14
    Extraction Of 4 Teeth (Diabetic)-3/10/14
    Extraction Of 1 Tooth (Diabetic)-3/17/14
    Extraction Of 2 Teeth (Diabetic)-4/8/14
    Colonoscopy-4/8/14
    EGD-4/2/14
    Esophageal Dialation (Mild Resistance At 54 FR)-4/28/14
    Diaphragmatic Hernia-4/28/14
    Duodenal Intraepithelial Lymphocytosis-4/28/14
    Mild Reactive Gastropthy-4/28/14
    Minor ST-T Abnormalities-6/26/14
    Mild Reversible Perfusion Abnormality Anteriorly, Anteroseptally and Apically-6/26/14
    Left Ventricular Ejection Fraction at Rest is 72%, 69% post stress-2/26/14
    Loss of high signal intensity on T2 weighted images at L3-S1-3/19/14
    Bilateral lower electromyography-4/22/2015
    Lumbar Radiofrequency Ablation of Medical Branch Nerves (Lumbar) Levels L4, L5 and S1 on the Right-2014
    Fetal type origin of the left posterior cerebral artery with aplastic or markedly hypoplastic left P1 segment-7/8/14
    Neurology-Started having to straight cath self-7/8/14
    Foley Catheter/Self Cath (PRN)-7/14
    Extraction Of 2 Teeth (Diabetic)-7/21/14
    Angiogram with Contrast/Adverse reaction to Nitro-7/23/14
    BiLaterial Nerve Block Injections in Lower back-8/13/14
    UroDynamics Flow Test-10/3/14
    Depends for Bowel Incontence (PRN)-11/24/14
    Mammo-1/12/15
    Multilevel Intervertebral Disc Space Narrowing-2/17/15
    Multilevel Facet Arthrosis/Lower Lumbar Spine-2/17/15
    Bilateral lower electromyography-4/22/2015
    Caudal epidural steroid injection under direct fluoroscopic
    guidance-7/22/2015
    Left L5-S1 transforminal epidural steroid injection under fluoroscopic
    Guidance-8/5/2015
    Left L5-S1 transforaminal epidural steroid injection under fluoroscopic
    guidance-8/23/2015
    Lupus-8/10/2015
    Plantar Fasciitis-10/28/2015
    Steroid Injection given in right shoulder-1/21/2016
    2-Buldging disk found 1/26/2016
    Right L5-S1 transforaminal epidural steroid injection under fluoroscopic
    Guidance- 1/26/16
    Steroid injection and Toradol Injection Given for Pain-3/7/2016
    Ankylosing spondylitis-3/7/2016
    Bilateral Diagnostic-Therapeutic Facet/Med. Branch Blocks (From Mid-Back to S1 Joints) with steroid, under fluoroscopic Guidance- 4/20/2016
    2-Teeth removed-7/25/2016

    The bowel problems are so bad my gastroenterologist is not wanting to even try surgery to reconstruct due to scar tissue, adhesion, etc.
    With Lupus and AS…on top of all the pain from what the mesh caused…what can we look forward to coming next?

  41. Sue says:

    2005 – TVTO by J&J Gynecare
    2012 – Solyx by Boston Scientific
    Before the 2012 mesh surgery I asked the doctor if what he was using or had used would one day be part of one of these lawsuits I see on TV. He guaranteed me that these were safe!! And, I just assumed he would take the 1st one out when he put the new one in. He never, ever said they couldn’t be removed. I’ve learned to ask lots of questions and take names and numbers.
    Since the very first one I’ve had IC, IBS, had abdominal hernia surgery (no mesh used) hip, back, leg, feet, now hands and arm pain. There’s no sleep in sight!! And the spasms are so bad I can’t stand up. Can’t do anything active like I used to do. Peripheral neuropathy; now I’m told I have Fibromyalgia (isn’t that what they call it when they can’t come up with a diagnosis?). Had surgery for UJO (obstruction on right kidney) (no mesh used). I’ve had many UTI’s and the last one was e-coli. I’ve had colonoscopies because I was passing lots of blood. I can’t begin to list the many tests I’ve had since 2005. Told by the urologist that did the mesh slings that nothing he used caused the vaginal mesh erosion. I just had surgery for that and there was 1/2 inch of a blue mesh and threads of white mesh found, as well as scar tissue in the vagina. I did have cystocele/rectocele surgery right after the 2005 sling, BUT I checked and that doctor didn’t use mesh. She said she knew in 2005 that it wasn’t safe. To put things in prospective: in 2000, 2001, 2002 I won our city’s municipal ladies golf tournament. And, now I can hardly walk around the block, much less swing a golf club.

    • Jane Akre says:

      Solyx is still on the market

      http://www.bostonscientific.com/en-US/products/mid-urethral-slings/solyx.html

      I’m so sorry…. have you had a removal or is the mesh just coming out on its own? Do you have access to a mesh removal expert? I’m not a doctor or lawyer but it sounds like you need someone to tend to you medically. Please let me know… janeakre@meshnewsdesk.com.

      • Sue M says:

        Jane, thanks for your message. I changed doctors in June and she found the vaginal erosion and I had that taken out in July. She is a uro-gynecologist at Vanderbilt and well respected. She definitely doesn’t want to what she calls “go exploring” and do a full removal. Looks like Dr. Vonikis in St. Louis may be the closest to Nashville, TN. But, I’ve just heard about a doctor in Chattanooga, TN also. At this point, I don’t know if I want to go through that extensive of a surgery. I’m almost 69 and scared to death it’ll make me worse!! That’s why I’m trying to educate myself. I’m trying to get all my medical records and so far haven’t been successful in getting the Product Identification/Sticker Page. Blessings.

        • Jane Akre says:

          Thanks Sue.. Are you represented? I eliminated your last name in case you are. You probably should be. You might consider a couple of consults and see who you like and what they say. You can always say no to a procedure. Ultrasound will see mesh if its not behind a bone is my understanding. ou might send me the name of your Vanderbilt doc so I can tuck it away. Also the doc in Chattanooga…. thank you.

  42. Cheryll W says:

    I had mentor ob tape sling 2004,sle lupus cancer of thyroid, severe aquiredhemopheliafactorvlll

  43. cath says:

    2003 Ethcon Mesh
    2003 Revised
    2005 AMC
    2013 total reconstructed surgery Ethcon Mesh
    2015 rectacyle (sp)
    Started having sever pain a few months after my first surgery…
    Back pain, painful sex, pelvis, exercise pain, lifting pain, UTI, fevers, headaches, muscle pain, joint pain this went on for the first few years. After 2005 my symptoms were getting worse and my body was always in autoimmune fight.
    Brain fog, sleeping disorder, OA, (I had already been diagnosed in 1997 with fibromyalgia from a fall) however I could not get my pain under control after my revision in 2003. I continued to live this way until my pelvic floor prolapsed and in 2012 I went through extensive testing and had to have my 2013 surgery. My brain fog was actually tested in 2011 and I was diagnosed with cognitive impairment. In 2012 I had to quite my career because I was diagnosed with early onset Alzheimer’s. (EOS)There is no history in my family of this disease and because it can stem from your immune system and inflammation I’d stay my mesh had something to do with my EOA.
    I have had inflammation through my body since my first surgery and been taking medicine for that for all these years. And to this day there have not figured out what is causing my immune system, inflammation and vitamin D level to be so low. I have to take 50,000 units a week. And I didn’t mention that I can’t tell when I am releasing urine and must wear pads 24/7. My colon had prolapsed as well fire the second time since 2012.
    I do have a few doctors appointments coming up next month and I will be addressing all these systems and there relationship with the mesh product. I plan on taken information to my doctors to help me communicate my concerns.
    I’m sure I’ve left a lot of information out here but my lawyer has it all.

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