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Hope Pagano: Hope for the New Year Despite Lupus Following Transvaginal Mesh

Hope Pagano, Lupus following mesh

 December 31, 2012 ~ I had originally had my surgery scheduled December 2010. I cancelled it because on the internet I saw 1,900 mesh complication complaints”~ Hope Pagano.

Hope Pagano, 49, got scared when she saw those reports. The Long Island mortgage broker with a thick New York accent was not going to have her incontinence treated without knowing more. The problem had developed after the birth of her second child.

Whenever she coughed or sneezed she would experience an escape of urine. When it got to the point she had to wear a pad daily she sought help.

Acting as her own medical advocate, she checked with her NY State healthcare system provider to find the best doctor in her area of Huntington, New York. The doctor she went to consult was the ob-gyn who had delivered her second child.

He told Pagano she would need a sling to hold up her urethra to treat her stress urinary incontinence (SUI).

On his desk was a thick, clear acrylic paper weight. Suspended inside was a small piece of blue Gynecare Abbrevo mesh (Johnson & Johnson), a small ribbon of a sling minus the harpoon like anchors which would be necessary to attach it permanently to her muscles and ligaments. Pagano was told the small mesh could be easily adjusted or removed if there were any complications. It looked like Velcro so she thought it could be easily adjusted if it caused discomfort during sex or trouble urinating.

He went on to explain any complications she saw on the internet such as ruining you sex life were due to a different mesh which he identified as made by the C.R. Bard company and caused by doctors who did not know how to implant it.

What she wasn’t told was that the polypropylene petroleum-based mesh sling product would be permanently affixed using steel hooks to pull the sling tape through her vagina. See Abbrevo brochure here.

Abbrevo brochure from web

 

So far the U.S. Food and Drug Administration (FDA) has reported (here) from January 1, 2008 to December 31, 2010 1,503 reports of complications associated with mesh used to reinforce the pelvic floor to prevent prolapse and 1,371 complications associated with stress urinary incontinence repairs with mesh. The FDA database is thought to represent anywhere from 1-10 percent of real life complications.

Behind her ob-gyn on a shelf was a caricature drawing showing a doctor in scrubs and a surgical mesh holding up what looked like a tennis net in a congratulatory way. Beneath was written “Dr. Mesh” referring to her doctor’s practice partner.

“I got the real deal,” she thought.

Pagano family

It was never disclosed her doctor might be on the payroll of the mesh maker. She didn’t think to ask. Besides the outdated Burch procedure was never done anymore she was told and neither was a sling or hammock made of pig intestines and implanted through the abdomen. That was more invasive and would lead to more down time while the mesh procedure was “minimally invasive” meaning she could be on her feet within a day.

A second opinion from a doctor in Stony Brook, Long Island confirmed the Burch procedure is outdated (using stitches only) and no one does the Burch procedure anymore; the mesh is the gold standard. The doctor even gave her back her co-pay.

The Stony Brook doctor confirmed her ob-gyn was such an expert in mesh implants that he was called by industry to train other doctors. Pretty good credentials she thought but still, there were those 1,900 mesh-injured patients on the internet.

“He said to me you think about one million people who have had the mesh and only 1,900 have had complications. That’s a very small number.”

Inside-out transobturator procedure, from Jean de Leval patent

Resigned to Mesh

“I remember sitting at a light at Route 25 and crying and saying I guess I have to suck it up and do this mesh.”

Hope Pagano had the mesh implant on Friday, May 13, 2011 at Huntington Hospital on Long Island. At the same time she got the Abbrevo TVT, she had a balloon ablation procedure to stop having periods which were irregular and accompanied by painful cramping.

Pagano says she was handed two folder brochures, one for each procedure. She says she was not made aware of anything she should be concerned about.

“I got what I thought was the flu three weeks after my surgery and it never seemed to go away,” she says today. A return to the doctor and she was told the mesh was fine. Pagano would have to come home from work in the afternoon to take a nap. She had headaches and a pain in the abdomen. The doctor said he would give her collagen shots to “beef up” her vagina to put it back in its place. He kept checking the mesh and blamed the internal exams on her ongoing pain. It would get better she was told.

Finally, during one internal exam Hope describes as the “internal from hell,” something hard and plastic began coming out of her body. Hope began to panic and upon leaving his office she and headed to the North Shore Hospital Emergency Room with her husband. Her doctor called the cell phone and ordered her to turn around and come to his office. Pagano says this time he was very gentle when he did the exam and pulled out a piece of plastic.

“We looked at each other and said what the F** is that? The doctor said he would take it to the hospital. My husband said, ‘Take a picture. It belongs to us.’ ”

“The doctor has never to this day indicated he knew where it came from; he insinuated I put it there myself,” says Pagano, who later saw the same plastic that looked like a Chapstick top image contained  in the patent for the balloon ablation machine. Three other doctors also confirmed her suspicion that it was a non-injectable catheter cap.

She filed a claim against the doctor with the New York State Health Department.

Instead of an apology, Pagano says she received a letter from the doctor October 2, firing her as his patient.

“I never saw him or spoke to him again.”

The Pain Continued

But even the removal of the catheter cap didn’t stop the pain. Her hips hurt all the time even though she had them adjusted by a chiropractor. Pagano had an elevated fever and her fingers turned blue. And she still had the flu-like symptoms. Despite a prescription for Zithromax (Z-Pac), and Tamiflu Pagano says she was not getting any better. Every day around 3 p.m. she would begin to get tired and feel a debilitating headache coming on.  Lights and sounds started to bother her and make her very irritable.

Because of the blue fingers, her new doctor ran a series of blood tests just to “rule out things.”  Blue fingers and toes and reduced circulation can be a symptom for Raynaud’s disease which is also a common problem for people with the autoimmune disease, Systemic Lupus Erythematosus (SLE).

With lupus, the body’s immune system turns on healthy organs and tissues resulting in chronic inflammation of the brain, kidneys, blood, skin, heart and lungs. While the cause is unknown it can be triggered by something in the environment, through genetics, or certain medications.

Both she and her new doctor were surprised when the ANA test came back positive for an autoimmune reaction, possibly lupus, going on in her body.

Pagano was now referred to a rheumatologist.

“I started reading about lupus on the web and was scared to death. I went to the rheumatologist to have more extensive blood test run, and again told not to worry that the likelihood that I had lupus was very slim. The next day I woke up with a painful rash on my chest and neck and was prescribed cream by my primary physician and told to stop reading about lupus on the web. Later that week, I got the news that my blood work came back and I had no vitamin D in my system and that I had tested positive for lupus.”

Systemic Lupus Erythematosus (SLE) is a long-term autoimmune disease that usually takes years before it is diagnosed, often mistaken for other maladies.

Pagano was prescribed a medication normally used to treat malaria that is known to affect the way a patient sees the colors of green and red but has been successful in putting lupus in remission. Instead of improving she continued to get worse suffering ocular migraines, joint pain and fevers, all within eight months after surgery.

“I was supersensitive to sound and light and my doctors thought I was having a nervous breakdown. I had no short-term memory so thought I had dementia or Alzheimer’s disease. There was a reverse echo, my brain had become so raw that I was having a paranormal experience; it was scary. I was getting psychic; people think you’re nuts. I’d hear the lines before they said it on television shows. Finally I was in the depths of despair asking God for help.”

Pagano says it was her sister who connected the dots and pointed out how sick she had been since her mesh implant. Even though she was on the medication the lupus symptoms continued to progress. The medication wasn’t working. Pagano told the doctor she felt her symptoms wouldn’t improve with the mesh in her body. He concurred there was only one way to find out whether the mesh had anything to do with lupus and that was to get it out.

Since lupus usually takes years to manifest why did Pagano think it may be linked to mesh?

“All I can tell you and other doctors have said if I didn’t have lupus before the mesh surgery and I got it afterward the mesh had to be implicated. I have a thyroid issue so every six months my blood was tested. No one ever found lupus.”

Dr. C.Y. Liu

“I’ve got nothing to lose, I cannot even think, I’m getting worse and the lupus textbook symptoms were coming on like gangbusters. I knew I would be dead it was so fast. My sister said you’ve got to get this out,” says Pagano today.

More research followed and she found that despite what her mesh implant doctor had told her about the ease of removal, mesh was a permanent implant and not easily removed.

“I had to be extra careful to make sure the doctor I chose to perform the removal of the mesh was skilled in this area, which was not easy to find out.” A patient advocate gave Pagano the name of Dr. C. Y. Liu who was working out of Lenox Hill Hospital in New York City, though he also practices in Chattanooga, TN. More on Dr. Liu here.

The mesh remains in the New York hospital vault.

Pagano recounts Dr. Liu removed the mesh on September 4th, 2012, “And within one week I was able to think again. My 12-yr-old daughter said ‘Mommy I forgot what you were really like.’ I could speak to her without that sharp edge from the thorn in my head.”

Much Improved

Pagano says feels much improved from before. Her headache went away within one week. The rash went away and she doesn’t run a fever anymore, but there is the residual pain like an ice pick in her pelvic region. The surgeon said there was a lot of scar tissue left in the area after the mesh removal.

She still has incontinence, but what’s worse is she still has SLE Lupus and Raynaud’s disease as confirmed by a positive ANA and Anti-DNA tests.

Doctors will monitor Pagano’s blood work and progress over the next year or so to see if she’s able to get the lupus under control. In the meantime her sister has found on the FDA’s adverse event database at least six other mesh-injured women also developed lupus. Men with hernia implants also using polypropylene mesh have also reported autoimmune disease followed.

Together she and her sister are researching the components of mesh and what chemicals it contained which may have triggered the lupus in the first place.

Chemical exposure has been reported to trigger lupus such as TCE, the toxic industrial solvent, used to degrease airplanes at one time. They’ve found evidence trichloroethylene (TCE) was used to clean mesh in at least one study.

Looking for Others

“Hopefully telling my story, describing my symptoms, and sharing my progress will help other people suffering to be diagnosed sooner rather than later. It seems the medical community loves to tell sick people they are crazy!”

Pagano is starting a website www.GetTheMeshOut.com which she hopes to register as a nonprofit organization to help raise funds for people who cannot afford surgery to remove mesh. She hopes to hear from others suffering from autoimmune disease after their mesh implant surgery.

“Big Pharma refuses to do the testing necessary  to link the Mesh to auto-immune diseases like lupus, so it is up to us Meshie’s suffering with auto-immune issues to band together as a quorum of common suffers who cannot be ignored.”

Pagano’s  Topix page is Prolene Mesh = Autoimmune Disease

http://www.topix.com/forum/topstories/T6RQ6LH7VPD8JC42B

 

54 Comments

  1. M. says:

    I COULD HAVE WRITTEN THIS ARTICLE, and yes, I am yelling. Prior to my mesh surgery, I had no allergies, no autoimmune disorders, and no history of anything like that in my family.

    I had the J&J Gynecare Prolift + placed in 2006. Immediately upon waking from anesthesia, I had hyper-reactive skin, shortness of breath, and chest pains. They told me it was a reaction to morphine and would go away. Then pelvic pain was severe and intense from the get-go as well. The doctor said it was a result of the positioning during surgery and would “calm down” as time progressed. It never has, six and a half years later. In fact, all of my joints ache and hurt – sometimes I can’t walk because it feels like I am walking on golf balls. My hair began to fall out and my skin continued to raise red, ugly welts whenever I touched it or bumped it. Within a few short weeks, the fatigue set in daily at around 3-4:00 p.m., followed by headaches so bad the doctors did an MRI to examine me for brain tumors. A few short months later, my vision changed and for the first time ever, I had to wear prescription lenses. I developed brown patches of skin under my arms. The shortness of breath at random times continued, usually followed up by a racing heart and the a full blown panic attack, something I had never had prior to the mesh placement. Bright lights, loud sounds, and cold aggravate my symptoms, too. In 2008, my ANA levels were positive and I had a Vitamin D level of 6 (six!!!!), when 30-100 is normal. Along with those findings, three massive hepatic cysts were discovered during an ultrasound – those had never been there before, but they persist to this day. The exhaustion and pelvic pain and all the other symptoms continued but still no doctor could figure out what was wrong with me. Was it Cushings? Hashimoto’s? Lupus? They simply couldn’t figure it out.

    Fast forward to this month. Doctors recently found a 5 cm uterine fibroid, a 7 cm complex ovarian cyst, a cyst in my breast, and one on my arm (my arm!!!!). I **still** have a positive ANA again, but my Vitamin D levels are in the normal range, probably because I supplement with 10,000 IUs a day. The fatigue, hair loss, rash, vision changes, aching joints, intense pelvic pain, etc., have continued. By 5:00 p.m., I am completely done for the day and in bed, leaving dinner, dishes, and getting the younger children to bed to my oldest (since dad is deployed so much). The shortness of breath and panic attacks continue, and my finger tips turn blue, and I have lost so much hair, I am considering purchasing a wig (I used to be a hair model, so the loss of my thick, luscious chocolate brown hair is a particularly sad turn of events for both me and my husband). An appointment with Dr. Raz at UCLA two weeks ago confirmed I have massive erosion and infection throughout the mesh and that it all needs to be removed and I need complete vaginal reconstruction due to the extensive damage.

    I am desperate for help – desperate for someone to be able to figure out what is making me so sick. I know it is an autoimmune response of some kind to the mesh, even if science has not yet confirmed the connection. Unfortunately, I live in backwater Florida, more commonly known as “lower Alabama” and medical care of any kind is difficult to come by. The doctors around here can’t make heads or tails of my situation and most of them have never even met a woman with mesh complications, much less treated one as a patient.

    I am only 40. I am too young to be feeling this sick. I have three children I have to care for while my husband travels for months at a time with the Department of Defense. I am hoping someone, somewhere, can give me some information or at least a lead on who to see who will (a) believe me when I tell them how sick I am and (b) be able to help me before this illness kills me.

    • Hope says:

      I am so sorry you are so sick, but am glad you found your way to the Mesh Medical Device News Desk. The editor of this site Jane Akre is an angel helping suffers like you and me get our stories out into the open, even though it can be an embarassing thing to talk about.

      To answer your main question, you will need to go to a Rheumatologist. I know it sounds crazy at 40 years old, but these doctors usually seen by the elderly seem to be the only doctors who know what bloodwork to order to diagnose various auto-immune diseases. Hopefully you can find one near by. You mentioned you live in Florida, which New Yorkers jokingly call “Gods Waiting Room” ( as everyone from my area seems to retire there…it’s a joke people..Floridians please do not take offense, I’m kidding). Finding a Rheumatologist in your area should be easier than spelling it.

      My Rheumatologist ran a series of test which identified my Lupus right away, although you can have more than one ammune disorder at a time.

      The most important thing is to get the Mesh out right away. I hear great things about Dr. Raz although I do not know him personally.

      I felt mentally better with in a week of my explant surgery. I know

      • Marc Giovine says:

        this below is from: INOCULATIONS: THE TRUE WEAPONS OF MASS DESTRUCTION

        CAUSING VIDS (VACCINE INDUCED DISEASES)

        (AN EPIDEMIC OF GENOCIDE)

        by Rebecca Carley, M.D.

        Court Qualified Expert in VIDS and Legal Abuse Syndrome

        If you develop auto-antibodies against the very DNA in the nucleus of all cells, you develop systemic Lupus (thus, the autoimmune potential of DNA vaccines being developed now is self evident; worse yet, DNA components from these vaccines can be incorporated into your DNA, leading to actual genetic changes which could cause extinction of all (vaccinated) life on the Earth, as will be discussed shortly). And on, and on, and on. —-

        { Squalene, one of the adjuvants in vaccines I believe displaces our ability to make vit D. Our body gets fooled because squalene mimics vit D , and thus , makes us think we have enough vit D and so after a vaccine

        we quit making vit D. MG…………….. Read Rebecca Carley’s whole paper (the above title) I think she’s the real thing. and ….could you tell me where to find a surgeon to remove my hernia mesh??? marcgiovine@hotmail.com 206-478-4455

        • Hope Pagano says:

          I wish I could help you but my the doctor who removed my mesh is strictly a UroGynecologist. I do hope you get the help you need as my heart goes out to you.

          Hope

    • Hope says:

      M-

      I know how you feel. Thank God for people like Jane Akre of the Mesh Medical Device News Desk, who help us get the word out about the dangers of the TVT Mesh to people like us before they get injured.

      The answer to your main question about who can help you, my answer came in the form of a Rheumatologist. I know it sounds weird as I always thought a Rheumatologist was strictly for people with Arthritis or for old people, but I quickly learned that this is just a myth and that these doctors seem to be the only ones who know the correct bloodwork to order to diagnose all sorts of auto-immune disease. Being that you are living in Florida (what New Yorkers jokingly call “God’s Waiting Room” ) there should be no shortage of Rheumatologists that can see you.

      I know you are only 40, but I was so sick that I went and did everything suggested to me in order to get better.

      The most important thing is that you “Get The Mesh Out”, right away.

      I do not know Dr. Raz personally but have heard good things about him. I understand there is a long waiting list so depending on how fast he can get you in you may want to consider the doctor who removed my mesh. His name is Dr. Liu and although he operated on me in New York, does have offices in Tennessee, which is geographically closer to you. I say that as it is hard to do what you need to do for yourself when you have kids.

      Feel free to email me at hpagano@hopefundinggroup.com your phone number if you’d like to talk privately rather than through post.

      I am praying for you and hope that this information helps you.

      Hope

    • MONICA says:

      I had my hernia mess removed by Dr. Ramshaw in Daytona Beach Fl. Ph: #386-259-8326. Operation was successful, however I still have the hives 3 weeks later. I understand from other blogs that it is possible to continue with hives for weeks or months after mesh removed. It does take a couple of months for surgery as he is busy removing meshes. He said he had removed hundreds of the same mesh I had in me.

    • Donna Harris says:

      M says from black water

      dr Lori fleck in mobile removed my mesh in dec 2013 all of it . I’m sad to say I’m stii having muscle pain groin pain Ive had tumors/cyst ?? Pop up on leg foot ribs forehead and any type of physical exercise more then. 15 minutes and I feel like I worked out for hours joint pain coldness aches pain are daily .

      I lost my insurance and can no longer afford to see dr fleck . Can’t find a docotor willing to listen to me to help . So I’m trying herbal remedies . Can’t afford to miss anymore work or I will loss my home . Doctors won’t believe and attorneys just want money and I JUST WANT TO FEEL NORMAL !

      PS only thing that improved after removal was abdominal pain and bloat ” and found out that sharp left groin pain I get are from where anchors were put in over my supra pubic area doc told me it was just my pelvic bone I must have bump it but he knew that’s were the anchors were this was 1 yr post op and I kept believing in him I suffered from 2008 til 2013 and now that it’s out I just want someone to believe in that’s what happen and help me improve my way of life I’m not a sickly person I don’t complain much I’m not a drug addict or want to become one , I just want to be me

      Donna Pensacola Florida

    • abandoned says:

      I am so sorry for all your pain and having to take care of children…Everything you wrote spoke to me, including something I haven’t seen on other profiles. I had three liver cysts. One was 18 cm and covered the entire superior lobe, it was described as large, fast growing fluid cyst with debris. It was between my right breast and back bone, compressing my right lung, aorta and diaphragm. The surgeon who drained it and cut the tissue away said their was enough fluid in it to fill a 64 oz coke bottle, no wonder I couldn’t breathe…he had never seen anything like it. I still have two more…though not symptomatic yet. Just diagnoses with Raynaud’s and Hashimoto’s (my fingers turn white, my feet turn bluish purple with no swelling and my daily temp in the afternoon is 95.6%). Thank you for sharing your story. You and all the others, including the men will be in my prayers.

  2. Jane Akre says:

    M- You are too young but at no age is this complication acceptable! I’m so glad to hear you’ve visited with Dr Raz…Those with similar complaints please file them here… A database of similar injuries cannot be a coincidence can it? I will amass similar responses and bring them to the attention of the FDA’s CDRH for a response! Honestly, if they are not looking for such things they won’t find them so they must be PRESENTED in a clear concise way. Thank you for continuing the process. I’m sure Hope will want to reach out to you too…..If you approve I’ll send her your email. Pls let me know. Thank YOU!!!!

    Jane Akre

    Editor, MDND

    • Melynda says:

      Jane, please send her my email. I would be most grateful! M.

      • Lisa says:

        Melynda, I too have the Prolift plus large abdominal mesh from hysterectomy hernia. I am 41. Hopes symptons are identical to mine. My vitamin D deficiency they put down to staying in bed too much as I can no longer stand let alone walk much and use a mobility scooter as heart is struggling. I have high fevers but doc says its from post particial mesh removal infection going on for 2.5yrs now. Sadly doctors know so little about the mesh and my doctor is learning from my case to help her other growing failed TVT patients in her care. I would give anything to get this mesh out of me,but have lost everything 🙁 I too have blue hands and loss of sensation but they put it down to my heart struggling from the anaemia. And the constant migraines due to stress. I never had any of this til the mesh went in 7yrs ago. At present I have no life,nor does my doctor expect me to live much longer. But would give anything to see my daughter grow up. Take care.

    • betty segers says:

      my name is betty I also had mesh implanted boston scientific it is horrible at the pain I go thru I have 2 teenagers and I cant take care of them cause they have a lot of needs I cant do anymore ive had 3 revision surgerys and still go thru turmoil and agonizing pain now my bladder isn’t emptying and my anal muscle isn’t working so when I have to go to toilet it just comes out on its own I have no control it also affected my pancreas and I ache all over my stomache . I hope we all find relief soon

      • Jane Akre says:

        Betty- Do you have autoimmune issues? I’d love to know that. Do you have an attorney? Competent medical help? Do you have your medical records as well as insurance? Where are you located? There may be some help for you to access if you connect with people who have been there… please get back. janeakre@meshnewsdesk.com Thank you!

      • abandoned says:

        Betty, I have the Boston Scientific Mid urethral sling. Urine and colon retention…losing weight all over while my stomach expands. Constantly on antibiotics and steroids…Jane has shared some names with me and I will be following thru when I return from Mayo for other multiple issues that are secondary to the mesh. I have not had any revision and am terrified. However, prayerful some surgeons will come up with some genius plans for us…now that they are stepping up, admitting and accepting it is REAL! Blessings,

  3. Hope's Sister :) says:

    Thank you Jane for your amazing article and supporting my sister. It is so appreciated! It means all the difference when people have your back and validate the truth you speak. This act of kindness toward another, alone, is so healing. I’m so grateful for your work and helping those who have been harmed by mesh, expose what is happening. I agree with you and my sister, that the best way to prove the connection/link of mesh implanted and a Lupus diagnosis afterward is hearing from those experiencing it. Power in numbers! The more that come forward and tell their story, the more this can NOT be denied and dismissed as impossible. My sister suffering was all the proof I needed and even if she was the only one, it matters. Each person affected by this, matters. I agree with everything my sister says and I agree with your work and words as well. Everything you just said to M., my sister’s story, I too encourage others….speak out about your side effects, as you are the PROOF and EVIDENCE! Although this has affected so many different people, it all equates to one unified story. The same story….

    To M. I am so sorry to hear that you are experiencing the same pain, as my sister has. Don’t be discouraged and know that you’re not alone. You’re in my thoughts. I care that this has happened to you and having just read your story am inspired by you. Stay strong and keep the faith. The above article includes information on Dr. Lui, my sisters doctor, perhaps you can have a consultation with him. I remain grateful to him everyday for getting the mesh out of my sister and to the patient advocate who gave Hope his information….and also for Hope’s courage going forward with the surgery. You are brave like my sister and will get through this. Sending you the best and positive thoughts that in 2013 you will see improved health! Also, I noticed Jane put a link to my sisters Topix forum page, be sure to check that out so you can connect with others who can support you. I’m hoping you might have connected directly with my sister at this point. I’m sorry to you and anyone reading this, who has gone thru/going thru a similar circumstance to my sister.

    I’m so proud of you, Hope, for how you have overcome despite the overwhelming obstacles. It’s hard for people who feel well to understand that when you feel awful, it makes fighting for justice, that much tougher. Especially when you know something is terribly wrong and you are dismissed and bullied. Yet you continue to fight thru it, never considering giving up and I find that incredibly inspiring. I think this article is really terrific!

    • Hope says:

      Dear Jodi,

      Thank you so much for all you help and support. I will never forget you are the one person who helped me realize that I was never even sick until after I had my intial Mesh Surgery, and that it was you who told me to get it out and steered me toward the advocate that diredted me to Dr. Liu.

      It was your love and support that gave me the courage to get the surgery to remove the mesh, You are the best sister (don’t tell Tracy…Just Kidding insde joke), and I am so lucky to have you in my life.

      You were instrumental in saving my life Jodi and I will never stop being grateful for that. Words can not describe how much I love you, and hope that one day I can return the favor and get those lazer’s off the market and into the same garbage can as the Mesh belongs in.

      Hope 🙂

  4. Jaque says:

    Has anyone else had eyesight problems? Like M above because I have too they are lesions behind my eys and now cataracts too, my vision was fine before the TVT implant, I am also having hair loss issues, thank goodness for this website, I always have suspected that these are 2 of the problems connected to mesh.

  5. InAz says:

    I can relate to the story and the above mentioned complications. Besides having autoimmune disease, YES my vision has slowly been getting worse by the week. I used to have 20/20 vision now I everything is ao blur. Hairloss, hives, sensitive to cold and heat, memory loss, brain fog, anxiety….I could go on and on with the odd symptoms that began when the mesh was implanted. Of course I chronic pain, chronic fatigue is part of it too. Even though mesh has been removed, I feel detrimental permanent damage has been done by the mesh, I feel poisoned by the mesh. I cried fowl for 6yrs but of course, I got the run around like most of us and told, I was fine. I knew it when I woke up from the implant surgery that something was majorly wrong, I have had major surgeries prior and didn’t feel as awful as the implants, which was supposedly to be “minimally invasive”. Instead I almost died right after the surgery. I KNOW my body, I don’t care how many degrees these close minded doctors told me I was “okay” and they couldn’t find anything wrong with me. I would tell them when, where, what was happening to me but either I was ignored or passed on to the next doctor who just took my time and money with no help. Only doctor who helped me was Dr. Raz, at least he removed my mesh, but because the damage had been done during the implants and for being left in me for so long, my body has been permanently damaged. Thus, my life I once knew it ended in my early 30’s. This horrible product just didn’t ruined MY life, but life of my husband and my young kids, plus my mom and on and on. Physical damage is only the part of it, emotional toll can be worse at times. May God bring us peace into our hearts and minds…

    • Jaque says:

      Hi,

      What kind of mesh was yours? Did it prevent you from sitting down like mine has. Fancy putting it in some one who is only 30 what if you had wanted more children.

      Do you have much improvement now after removal. I too have your symptoms of memory loss and anxiety I feel like I am going mad. Do you also have a lot of skin complaints and blood clots, I have photos of my skin and blood clots that you would not believe, this mesh must go around the blood stream. No one where I am believes the mesh is my problem and that is the real nightmare because it means no help. I have been having problems since 2006 more symtoms each year they never go but just get worse, no Dr even listens because they know the symptoms we have, that’s why they don’t listen.

      • Carly says:

        To all women, I have nerve damage and I’m sure a lot of you do to. System>>>>> If anyone has a problem with sitting,standing, walking, getting out of a chair or bed, groin, pain down legs and getting up steeps….this is just some of them. The NERVE THAT YOU SHOULD GET CHECK IS THE PRUDENTIAL NERVE……IT IS A VERY HARD NERVE TO DETECT THE DAMAGE AND THE PAIN WITH THIS NERVE IS SO UNGODLY I HAVE FILLED BUCKETS OF TEARS UP OVER THE YEAR. I HAD SURGERY A YEAR AGO AND STILL IN A LOT OF PAIN….I TAKES PAIN MEDS WHICH I HATE. IF ANYONE WITH A FEW OR A LOT OF THESE PROBLEM PLEASE SEE A DR ASAP. ANY QUESTIONS FEEL FREE TO ASK. GOOD LUCK TO ALL!! IF YOU WOULD LIKE TO EMAIL ME SENT TO…………………..Cchesapeake@gmail.com IF YOU WOULD LIKE TO TALK ON THE PHONE JUST LEAVE ME YOUR PHONE NUMBER………. via email Carly

    • M. says:

      InAz – I could have written what you wrote! I too feel like my life ended as I knew it in my early 30’s. I have surgery scheduled with Dr. Raz to have the mesh removed in May, but it seems like such a long time from now. That will make it 7+ years since the mesh was placed…I hope I can eventually regain some semblance of health. I am beginning to understand I won’t go back to feeling how I did prior to the mesh implantation, but anything has got to be better than where I am now.

  6. Jaque says:

    I didn’t get problems with my mesh until 18 months after implantation, each year it got worse with new complications, like strange leg pains, eye site started when the infection started, it’s got to be connected, and flu symtoms but not having flu, blood clots started and got worse, memory problems, I go upstairs to do something and the pain starts and i forget the original reason I went upstairs. The bedroom is like a hospital room with all kind of creams, nappy rash creams, steroid creams, ect, none get rid of the problem. I don’t see why they can’t give us rejection pills like they do for a liver transplant, has any one had this kind of medication? It would be nice to have a break from this daily torture of mesh.

  7. Monica says:

    Hi, I have read a few of the comments posted here. I also developed an autoimmune disease after an abdominal hernia repair with mesh. Only recently I put and and one together. I so can identify with what a lot of people say… i was wondering, there are law suits going on for vaginal surgical mesh and recalling of a few products. There has to be a lawyer or two that will be willing to take cases that are not necesarily vaginal mesh? I have been looking for them but no much luck. And although I am not after any money, I would be very happy if they just took the mesh out, it would not hurt to get some for all these years of pain and suffering and not a fantastic quality of life. Does anyone know of any lawyer/law firm that could take my case and other people’s cases (non vaginal mesh) If anyone knows, can you email me please at orangewednesday.mp@googlemail.com I would greatly appreciate it…

  8. arlene says:

    hi, this site seems very helpful to me right now..i had the mesh put in on march 1 2010…up until recently i thought everything was fine, my husband and i were trying to have sex and i was having terrible pain in my vagina..it felt worse than when i had sex for the very first time in my life, it also “scraped” him, so i called my gyno the next day which was last monday and got an appt for last thurs..i am schedualed for surgery this coming saturday to remove a piece of the mash that has eroded through my vaginal wall…i am petrified, im wondering why so soon and also wondering how the doctor knows its just one piece, or maybe there is more in there. after reading alot of info this weekend, im starting to see that many of my “other problems” could very well be related to the mesh implant like, abdominal pain, severe constipation, vision changes,fatigue and many more problems that i have been going to different doctors for..ive been tested for lupus,hemochromotosis,anemia (which i had before and was given an iron infusion) crohns disease,rhum arthritis and on and on, they cant pinpoint anything (other than my ibs)…i am so confused and yes, the docs seem to make light of it and make you think youre crazy…if anyone has any suggestions or comments please let me know.. i am a mother of 9 and want to be around to watch all my children grow up…thank you in advance

    • Hope Pagano says:

      Arlene,

      So it has taken me so long to reply to your heart felt post. I feel for both you and your husband a all 9 of your children as the complications of this defective product effects everyone in the victims family if not physically then emotionally. I should not have to feel like I have ruined my families life by trusting that my doctor, my insurance company and the pharmaceutical companies in thinking that the mesh was safe and the “Gold Standard” procedure for curing my incontinence.

      As for the removal I suggest you get a second opinion with a UroGynecologist whom has experience with mesh removal as I know for a fact it is harder to take this mesh out than it is to put it in, and the organs in a woman’s abdomen are very delicate.

      Be careful. A second opinion could not hurt. A lot can be said for a fresh set of eyes whom has your best interests at heart, and not trying to correct a surgery gone wrong.

      I pray you find the right hands to help you.

      Hope

  9. Beth says:

    Hello everyone I am so sorry about all of these illnesses from the mesh. I have a friend that had hernia surgery and she went back to that doctor several times and he would tell her there is nothing wrong with the surgery I did. By the time she went this last time she had a bulge in her belly you can still see but he did a needle aspiration and it was infection with tons of antibiotics for weeks she went back again and he cut her belly open in the office about an inch long and my friend said “what is that thing you pulled out of there it looks like a worm” He said ” it is mesh coming out am I the one who did you hernia surgery?” My friend said “YEA “. well every since then he has been treating her like dirt . She has and infection in her opened wound now. I am worried about her and am trying to find a way to help her . Can someone tell me what I could do for her ?. Thank you so much for listening. Her friend Beth

  10. Kathy says:

    Hi, I had when to a doc to have a bladder sling put in because of a bladder prolasped that was in 2009 needles to say after the operation the doc told me that my bladder was to thin to put it in so he did the best he could and hooked it to my muscles and ligaments. My bladder fell within four months so i when to another doc and she said that i would have to wait until May 2010 to have it done she tolf me that there was a possibilty that it might fall but she could put it back i asked her how thin was my bladder she asid that it wasnt thin and she wouldnt have any problems doing this surgery. The doc set the operation up for May of 2010 got out of surgercy i felt fine didnt seem to have any problem thought she did a geat job. Then April 2011 i started getting sick it was a sick feeling that i never had before then i would get sharp pain in my right side then head aches every morning more pain and then a little discharge i was 48 at the time of the first operation i started going to my doc to see what was going on nothing they could find i had ultra sounds done x rays anything they could have done and still found nothing then . To make a long story short i ended up going to a great Doc that operated on my March 15 2013 and to his surprize it was surpost to be a three hour surgery it ended up being a seven hour surgery the Y mesh that was put in had broke apart i ended up losing my Right tube and ovary Left tube. The Mesh that had been put in was attached to the promontory to the apex of the vagina and the peritionearixed the right tube and ovary were adhered to this. The right ureter was also involved into this complex as well as sigmois colon. The left ovary was densely adhered to the left pelvic sidewall, and the left tube was densely adhered into the pelvis. These were lysed. I was so upset when the doc told me all of this he didnt think when he started he was going to be picking piece by piece of my mesh up. So everyone out there that is even thinking about having this done DONT!!!

  11. Paula says:

    Reading all your stories is like reading my life for the past 3 years, since I had the mesh implanted. I and my family have been thru pure hell, no doctor would believe me nor believe the mesh had anything to do with my multiple complications. I can certainly understand your pain and hell because I live it everyday like all of you.

    • Jane Akre says:

      Paula- do you suffer from lupus?

      • Paula says:

        Hello Jane,

        I was told back in 2010 that my ANA test were positive for Lupus than my doctor called me back and said it was a false/positive result, even though I suffer the symptoms. I just made an appointment to see anotner Rheumatologist to have of series of test run again. I also have the symptoms of Raynaudes disease. I just had a Angieogram on Monday and previous to that they did series of sonagrams to rule out any blockages, all showed clear there. So like all the other women here I go again.

  12. Sue Gerber says:

    5/9/13 – in 3/12 I had a perforated bowel which required a colostomy, leaving me with a colostomy bag for 7 months. In 10/12, I was able to get the colostomy reversed and return all of my “plumbing” back in the right place. The surgeon said I had a parastomal hernia that he would repair while he was in there. I might mention that I had been diagnosed with lupus 30 years ago and MS less than 2 years ago so I’m used to pain and having things feeling “odd”. I thought the surgeries were completely successful until a month or so ago when I developed an abscess at my incision line, which later burst. I developed MRSA in that wound, but what came next was even more shocking…… One day a helical tack (used for hernia repairs) popped out of the wound….What the heck! Within the next two weeks 27 more tacks have been expelled along with a lot of pus and infection. When I saw the surgeon he said what I thought was congealed pus was actually pig mesh which was rejecting from my body along with the tacks. He said he’s never seen or heard of this happening. The internet said that pig mesh is the preferred tactic as it is less prone to infection/rejection. Has anybody else heard of pig mesh and/or surgical tacks being rejected? The dr. said he would just let the body “take care of the issue” by ejecting the foreign objects. The Infectious Disease dr. has said I need surgery to get all of the old stuff cleaned out or I will have reoccurring abdominal infections. I live in Florida so names/contact info for any good mesh-removing surgeons would be helpful. Thanks – Sue

    • Jane Akre says:

      Hi Sue- If you go to the search bar and put in “hernia” you will find a lot of reporting on hernia mesh. Bruce Rosenberg is a great patient advocate on hernia mesh. Find him at brucerosenberg1@bellsouth.net He may be able to help with a Florida doctor. unfortunately, they are not on every corner the way implant docs are. Stay in touch!

  13. Hope's sister says:

    M-

    You had written that you had an appointment with Dr. Raz to get the mesh removed in May. I’m thinking of you and hope your surgery went well and you’re doing o.k. I truly hope that you’ll see signs of improvement and your quality of life will improve. I believe it will! Sending you good wishes of healing and recovery. I hope you check in so we can all know how you’re doing. Feel better. 🙂

    Thanks again to Jane for all of her hard work on behalf of so many people, to expose this injustice and giving my sisters story a place to be heard. To all who have posted their own stories or have supported my sister’s story with their own experience, thank you. Justice and peace will prevail over this criminal greed with your courage!

  14. Jessie says:

    THANK YOU! from the bottom of my heart for starting this website and for telling your story. We women MUST JOIN HANDS and FIGHT for our RIGHT to be HEALTHY! The very parts that bring forth the children of the world are being mutilated for quick financial gain. It is a science fiction horror film played out in real life. I want to annihilate these companies for using their Mothers, Sisters, Daughters, Aunts & Grandmas as human guinea pigs in their sick plight for the all mighty dollar bill.

  15. My heart breaks for everyone of you. In 2007, I had an abdominal sacralcolputeropexy with a cystocele repair with graft, rectocele repair,abdominal enterocele repair and retropubic sling. I was only 39 nyears old. My entire abdomin and pelvic floor is covered in mesh with screws in my sacral bone and pelvis. As soon as I woke up from surgery I knew something was wrong. I had extreme genital burning and gained 17 lbs in in less than 2 days. My legs felt like they were going to burst from the inside out. I had a fever and elevated lymphocyte count along with 3 pint loss of blood. My OR report states I only lost 75 cc of blood. I was never the same after this surgery.

    I was a RN since 1989 and had to go on disability in 2012. I lost my dream home, my job and my life. My recovery was horrible. I bled for 2 months post op and developed scar tissue at the vaginal opening. Intercourse was painful and I had severe itching of my legs and Right leg posterior burning. I could no longer have an orgasm but I too experienced orgasms during my sleep which caused severe vaginal muscle spasms like a charlie horse. I could no longer walk quickly and looked “allergic”. I was bright red from head to toe with pruritis. My abdomin looked like I was 9 months pregnant for 2 years and I never looked the same again. I also lost muscle control of my lower abdominal muscles. I experienced the same eye and cognitive problems,abnormal muscle movements like Parkinson’s Patients and the same symtoms that MS patients have. I went back to the doctor who did my surgery and asked if I could be allergic to the mesh and was told no. 8 months after the surgery I was dx with vestibular neuritis and ended up in the Er with left sided weakness which has not resolved. i also have chronic sever headaches, back, neck, facial and joint pain.

    I am adopted and do not know my family history. I had DNA testing done by 23andme which showed I have 11 markers associated with autoimmune diseases like Graves disease, Lupus, Diabetes, IBS, Sclerodermo and so on. I have not tested postive for Lupus but Have had a positive thyroid antibodies and a thyroid nodule and new onset Raynauds disease. I have chronic hemmoragic ovarian cyst and myometrial cyst in my uterine muscle. I have been treated for vaginosis multiple times and UTI. I also have cyst in my right lung, sacroiliac joint instability. My joints are unstable. I can only walk a block on a good day, I cannot sit, stand for long periods. I also have severe vission and eye movement problems.

    I am am adopted and have experienced many strange symptoms since childood. I went to an immunologist who did special testing. I have chronic elevated CD4 lymphocte counts, Low CD56 lymphocte counts. This blood work means that that there is is either a chronic infection and/or an autoimmune process going on. The low counts are associated with herpes viruses. My EBV titers went from 7.4 to >750 IgG.

    I have a history of MS like symptoms since my teenage years…every time I got and infection or virus or had flu like symptoms but my symptoms would last a few weeks to a few months and would be be ok but not the same as I was. But since this surgery. I have had no remissions. I would suggest everyone to get this specialized testing done. 23andme Is only $99.00 The lymphocyte test can be ordered by your primary doc. CBC with lymphocte subsets. I also recommend CD20 and Cd40 lymphocte testing.

    I would suggest everyone research Complex Regional Pain Syndrome. It is a pain syndrome that is caused after surgical procedures and there seems to be an autoimmune process to it. They do not know what triggers it.These lymphocytes can enter the brain. I have had this syndrome since childood but the mesh surgery has left me in a state of no remission. Also get a bone scan. The new research has shown that the lymphoctes invade the central nervous system and has been linked to fibromyalgia, autoimmune diseases, MS and Parkinson’s disease. We all have a genetic predispostion to autoimmune diseases but there needs to be a enviornmental trigger that causes the disease. I believe this mesh can be a culprit. Our bodies are rejecting this mesh which causes our symtoms of autoimmunity, neuropathic pain. infections, neurological, and cognitive decline. My neurologist and Pain med specialist has reviewed my history since childhood and wants to start IVIG to stop this autoimmune attack but insurance companies only cover it in a few diseases. There is also a medication like netrexolone which is a medication that is antinflammatory and has also be found to help in chronic neuropathic pain which we are having. The theory being that the glial cells, dorsal root ganglion and dorsal horn of the spinal cord are involved in CRPS. Some people also try nerve blocks. A pudendal nerve block may help with pain. It is the same block that is used during labor. This is a neuropathic condintion. I use Lyrica, baclofen and Klonopin to deal with the nerve pain, muscle spasms and headaches. I may try this block. It will cause numbness but decrease the pain unfortunately. It only last a few days.

    CRPS has been described as the worst pain condition. They call it the suicide disease. From my experience, I would avoid extreme temperature, spicy food, caffeine, nicotine and infammortory food like tomatoes. peppermint and so on. This sydrome can cause asthma and other inflammatory diseases to resurface. The body when it is injured sends blood cells to the area to fight infection and deal with the inflammatory response caused by injuries but unfortunately in our case this mesh is there and our body keeps attacking it. Unfortunately it is attacking us too.

    The body is a wonderful machine and is trying to keep homeostasis but unfortununately this process can have adverse effects. Due some research on CRPS Dr Schwartman leading researcher in CRPS, etc that I wrote about. Educate yourselves, be your own advocates and find doctors who will listen…hard to come by these days unfortunately. I spent 20+ years fighting for my patients rights, safety and well being. I have been told I worry to much about my patients. Doctors need to stop looking at a scan or a blood test and start looking at their patients. That what I have always done as a nurselook at the patient and are the first to pick up up when something is wrong. You know your own bodies and know when something is wrong. In 2008, I started to take pictures of my self…swelling, redness, color chanes, sores and infections. Do not be embarrassed to take pictures of areas that are private…You need to start documenting these changes. Doctors do not know you so show them the changes…pictures cannot be brushed off and ignored. Every time you see a doctor make sure you get a copy of your medical record. I never thought I would be my most important patient. I am here to fight for us too. Any questions are welcome

    I wish everyone the best!!!

    • Jane Akre says:

      Caroline- You are an inspiration….Your message is so important. What are you doing to advocate for your health? Do you have your operative reports and a good doctor? Please get back…thank you for writing… ja

  16. Caroline says:

    Jane

    I have my reports. I knew as soon as I woke up from surgery something was wrong. I just recently received them after wondering if I had the products on the FDA warning list. I am seeing a Neurologist and Pain Management specialist At Drexel University in Philly….his waiting list is 2 years. It has been a tough road. Many physicians are not aware of CRPS. It has only been in the most recent years that chronic pain syndromes have even been recognized as a organic entity. Research has just begun. Unfortunately, the longer you have the pain and symptoms the chances of remission diminish greatly. It is a vicious cycle. Infections make the symptoms worse so you cannot even walk and walking and activities of daily living just just aggravates the nerves and causes the infections and tissue damage. With CRPS the symptoms can spread to areas not involved in the original injury. You have to move and eat healthy but take small walks and when the pain gets to bad stop and rest. Pool therapy is also good but need to take it slow.you may feel better in a pool but you are still using those muscles and may not realize how hard you are working them. The chlorine bothers me now so it is not an option for me. I have tried yoga but the stretching feels like my whole pelvic floor is being ripped. I spent 5 years working after my surgery but used a lot of sick time. My career was so important to me…losing it was so hard. Now just trying to walk a block or sit to watch TV is so painful. Doctors do not understand and I even had pictures and doctors have seen me blistered, blue, 17 lbs of edema and still brush me off.

    My advice do not smoke, get your Vit D levels checked and do your own research. Take baby steps with walking, etc do not push your self into the point of pain and find someone to listen and who can support you. Try to find activities that make you smile and that can take you away from the pain you are going through even it is just for short periods at a time…a massage, a good book. BTW polypropylene is an additive in carpets, most medications, painting supplies, your plastic microwave bowels, sanitary products and many other things. I have been a nurse for many years and we did not see these pain syndromes, food allergies, medication sensitivities, infections, etc. like we see today.

    We live in a world with great advances in technology…electronics, medicine, etc. We use pesticides to keep our grass green and keep our crops from being taken over by insects, steroids in our food products, fast food, fillers and pollutants in our medicines, lotions, makeup and so on. We have polluted our world and our bodies.

    Western medicine is focused on treating the sick and injured after disease has set in and not in the prevention of disease and injury. I think we need to practice Eastern medicine here…the physician only gets paid when the patient gets well and if the patients do not get well then these big corporations do not get paid. Still might look into a homeopathic MD…different philosophy.

    Have any of you noticed all the commercials about the adverse reactions from many medications, surgical implants and so on. Many of these medications have been used for years.What is going on? Just had to put it out there. There are so many people having complications after surgery. I wish I had the answers.

    Just end by saying…Went to a chiropractor for 3 months…his brochure said 8 weeks till wellness. Well my my hip,genital and rectal pain continued to get worse, progressive subluxations of my spine and left hip and cervical disc herniations because I am not able to walk properly after my surgery.So I favor one side. I asked if I get a refund since i didn’t get any better…He just chuckled.

    • Jane Akre says:

      Caroline~ You seem resigned to living with the mesh or did I read you wrong? With so much understanding I’m curious about your conclusion….I’m glad you have your records. Please stay in touch~ ja .

      • Caroline says:

        My mesh is in my entire pelvic floor and sacrum along with screws in my pelvis and a sling. I have CRPS which is an autoimmune disease which is exacerbated by surgeries or trauma. Like many women on this site their pain and symptoms were worse after removal. I believe removing this mesh would cause much more damage. If there was a way that I could remove it safely and be certain that there would be no complications, I would go ahead. I was so sick immediately after the surgery and have not been the same. I have lost my lower abdominal muscle strength and reflexes already. My nerves are already damaged and further surgery would only cause more problems. I am just taking it day by day for now. How are you feeling and what problems have you been having?

      • Caroline says:

        Sorry Jane

        I didn’t realize you were the one running this site. Thank You for all your efforts. Just wondering…My last severe vaginal infection which I thought was yeast was strange. Hate to get so graphic but I will anyway. I figure this is the place to do it. I used warm water to flush out my vagina and there were white opaque like shavings and some were very large in addition to very small pieces. It took days to clean everything out. The only way I can describe it is like pencil sharpening shavings. It came from deep within the vaginal cervical area. At the time, my genital area was bright red and burned so badly. The pain was horrible. I went to my GYN the following week and she told me that there was white discharge but it is not yeast when cultured. I have never seen anything like it. Diagnosed several times with vaginosis but not yeast. Just wondering if anyone else has experienced this.

        • Annie says:

          Yes… me. I keep having those infections. I’m disgusted at the doctor and maker of this mesh. Their is no excuse as to why they didn’t do studies before allowing mesh to be implanted. I’m so sorry for your trouble. God bless you.

  17. Caroline says:

    Ladies

    Raynauds can be caused by over-reactive nerves. It like the nerves are never turned off. Research sympathetic nervous system…The nerves continue to stimulate the the blood vessels and cause them to constrict. If you are finding cold, pale or blue extremities change your position, take a walk, use a heating pad, massage to warm up your extremites. The longer the area is pale, blue or cold the more risk your are in getting wounds and infections. Your body is made to make sure your vital organs are receiving oxygen and nutrients. Unfortunately, your limbs are not vital organs.

    We all need to start moving even though we are having a lot of pain. No nicotine, caffeine, spicy foods, citrus, pepermint, alcohol or extreme temperatures….all cause inflammation

  18. Julie says:

    Hope,

    I came to your site becuase I had a herniated pelvic floor and uterine fibroids, in 2008 I had a hysterectomy and a bladder sling implanted. I have felt great until the last year. I’ve gained over 50 lbs., chronic searing heartburn, constipation and diarrhea interchangeable – and daily, a cycle of yeast infections and UTI’s every few weeks. My memory sucks, my joints ache – they feel almost swollen, plus I break out in a rash on my chest and back of my neck in little pus filled bumps that are highly painful. Then it all goes away. I’ve had both upper and lower GI’s, pelvic exam, etc. and my answer is IBS – here’s 4 rx to fill. I am curious because you mentioned TCE in the initial article above. My Dad was sick for years with what was initially cirrhosis of the liver. Upon discovering a sore that wouldn’t heal I took him to an oncologist and they discovered AML, Acute Myloid Leukemia. The neuroblasts were so large in number he asked me if he ever worked with fuel agents (TCE). It was the highest level he had ever seen. My dad was a banker. I have no doubt that there is a link from TCE exposure to autoimmune sensitivity and illness to cancers. That some of us are predispositioned to sensitivity to TCE and levels of exposure? I have not considered removal of my sling simply because the discomfort and pain does not outweigh the benefits yet but did want more info on the cyclical symptoms I am experiencing.

    • Jane Akre says:

      Julie- I’m working on some basic autoimmune injury stories now. Do you have a good doctor? some folks have found help from around the country. Please let me know where you are.. perhaps someone in your area can help you. Sign up for the mailing list so you can receive the newsletter… thank you! ~ Jane a.

  19. Caroline says:

    I would like everyone to research low dose NALTEXONE for pain management and autoimmune diseases. This drug has been found to decrease inflammation in many autoimmune diseases syndrome, …Lupus, antiphosopholipid syndrome, RA, osteoarthritis, Diabetes, Connective tissue disorders, Graves disease, Hashimotos thyroiditis, Complex Regional Pain Syndrome/RSD and neurodegenerative diseases like MS and ALS, Alzheimers, Parkinsons. It has been recently that immunology and genetics are being investigated more aggresively…diseases like fibromyalgia, vulvadynia, cystitis, endometriosis,unexplained pelvic pain,Chronic fatigue syndrome and so on are now thought to be autoimmune diseases, and are even being associated with nerve dysfunction . These disorders usually affect woman and have been chalked up to being stress related or in our heads. Your body produces many antibodies against your nerves, glands, brain, connective tissues and reproductive organs. There is no way to check for every antibody or do special neuronography testing which is only done done in research institutions so must have poor pain tolerance or be a hyperchondriac.

    In Western medicine, doctors are taught to treat diseases but not the patient symptoms. When a patient describes severe pain and subjective symptoms that cannot be supported by objective scans or blood work they are labled as drug seekers, depressed, anxious, attention seekers and so on. Your body sees these antibodies and starts attacking itself and the attack may or may not stop. Inflammation helps heal the body but at a cost if the the immune system over-reacts or does not shut off. The body is made to repair itself from injury but some people with chronic pain and autoimmune diseases cannot do the things that help that process like exercise, eat right, get proper sleep and most importantly be interactive with family and friends physically or emotionally. It is an autoimmune disease. These pharmaceutical companies make products and medications that are toxic. We use the products in hopes of having a better productive life to treat our symptoms…so the nightmare begins. Even vitamins and herbs can have adverse effects. what may be good for one may not be good for another. Childrens Hospital of Philadelphia has even released a warning regarding vitamin and herbal suplements. It is funny because i started taking vitamins and I actually felt worse…these can be toxic also in some people. When many of these drugs and products were tested it was many years ago. The world was a different place and the representive controls are like a drop in the ocean. It is not representative of the world or demographics that we live in today. It doesn’t account for gene and enviorenmental alterations that have evolved over the years. It doesn’t look at autoimmunity.

    In nursing we always ask do you have an allergy to any medications, latex or food but we never ask are you or have you ever experienced any of the adverse warnings that are listed on all the meds. Most of us probably have had some of those adverse warnings over our lifetime but I know i always chalked my symptoms up to having a virus and so on even though it was a life long problem. Mockily the career i chose was the very career that has caused my body the wort harm….chronic heavy lifting, no lunches, years of of radiation and polypropylene exposures, multiple cleaning supplies chemicals and the list goes on…

    From the time I was born, I had chronic joint pain, infections and so on. Being adopted I just thought that was just me. Recently I was diagnosed with Joint hypermobility sydrome and Possible Ehlers Danlos syndrome which has resurfaced with a vengence after this surgery because of loss of my muscle mass and strong muscles which helped to support my joints and ligaments. Thyroid antibodies are high but thyroid function labs are in normal range so I was told that was ok…getting US of thyroid, DDD, scoliosis kyphosis,sacroilliac degenerative disease and degenerative disease of my knees, chronic enlarged lymph nodes and tonsils. I felt like telling that doctor off and say look at me. My ENT sent me after seeing me and telling me you do not look so good. They called me and when i asked if we can run some special test and scans to follow up on abnormalities found 2 years after my surgery she said I do not feel comfortable doing that. It was a DEXA scan and chest CT…unbelievable. couldn’t help but ask what do you do? You are an internist why do I have run around seeing more specialist and delay testing. It takes everthing I have to be able to get showered and make the hour drive to the office and back…unbelievable.

    Just a note, I have found that those who have a history of cystitis with infections were more likely to have a allergic reaction to polypropylene. I was actually feeling better prior to the surgery…4-6 weeks after I was diagnosed and scheduled for surgery. Hindsight is 20/20. Cystitis on and off for 20 years.

    I have worked in nursing for 24 years. My last job was in the the recovery room. In the last 10 years i have never seen so many complications, infections, chronic pain syndromes, multiple drug and food allergies and so on. Many of these symptoms are caused by small nerve fiber neuropathies. These neuropathies can be caused by toxins, diabetes, metabolic disorders, thyroid disease, collagen vascular diseases, surgical/mechanical trauma, immune defeciencies and so on. These neuropathies are very painful causing allodynia and hyperthesia. Pain is the leading cause of disability and is underecognized and underappreciated. We were always taught in nursing school that pain is a subjective experience but like many of us have realized it is not the case when we are in an ER or Doctors office. Those who do not have to live with it can never know the reality. It just frustrates me that doctors that I have spent years taking care of their patients can be so dismissive, beligerent and judgemental.

    It is my belief that these autoimmune disorders cause these cytotoxic immune cells to reak havoc in our bodies and brain and disrupt the natural response our brains are made to deal with pain. The brain has its own opioid system. It is better than any pain killer that is made with no side effects .Naltrexone tricks the body into releasing and generarting its own natural brain opioid and also decrease inflammation. I am not saying that anybody should stop their meds for clotting disorders or so on but i think it is a worth trying this med in addition if they are having pain. Also those who are planning to get their mesh removed because of pain symptoms…vaginal, joint, brain fog etc. I think this is worth a try first before any mesh removal surgery. I read Dr Raaz’s site on mesh removal…He can help “many” but the surgery is very invasive and can cause more pain than before. If my recollection serves me correctly he has done less than 500 of these mesh removals. A drop in a bucket in our injured and suffering mesh community.

    I think it wouldn’t hurt to try this med prior to surgery. It may decrease more postop pain syndromes, inflammation and infections that may be a result of more invasive surgery that will injure more nerves. It may take awhile before you see results, I have seen these complications in many postop patients…all types of sugeries. Postop infections, deaths, serious injuries and chronic pain are at a all time high.

    Sorry for the long message. It is the nurse in me…educator, advocate, reseacher, critical thinker. This is how my brain was wired since I was a little girl. I can no longer practice nursing because of my disabilities so I guess this is the only place where i think I can help and feel like a nurse again in my own special way. I miss it and it also helps me to vent and maybe help some people look at some new alternatives in their care

    Wish you the best

  20. TVT in TN says:

    I can’t believe what I have just read. My hair had been falling out starting after my 3rd surgery, I assumed it was the anestthesia. That was just before I started having the stomach problems I mentioned in another post in another section here. I always thought my stomach problems were related to the Mesh and when I would look up my symptoms they seem to be the same as someone with Lupus. After my physical in July my doctor’s nurse called and said that my Vitamin D levels were nill and wanted me to start taking 5,000 IU and have them rechecked in 3 months well I always forget to take it most of the time. I need to go back to him and get tested for Lupus is makes so much sense. I’ve developed Livedo Ritculas (spck) on the back of my left leg where I have the nerve pain but no where else on my body. Thank you for your story. I guess I need to go back to doctor for more tests. Blessings.

    • Jane Akre says:

      TVT in TN Please get back to us and let us know what happened to your diagnosis. Hope is gathering other individuals with a Lupus diagnosis… there are many being identified after they have a mesh implant. Thank you~ Jane A.

      • TVT in TN says:

        I most definitely will keep you updated. This is no way to live. Thank you for starting this site. It is very up-to-date and informative. My heart goes out to all the women who have posted here and those that are sitting and suffering in silence.

        May God be with us all.

  21. Theresa Cattoor says:

    I had bladder mesh put in 8/2012, just now showing signs of Lupus with positive antibodies and symptoms. I have the BRCA gene mutation which prediposes me to peritoneal cancer & am afraid that having the mesh in my abd cavity will make me even more prediposed to cancer. Any experience/advise?

    • Jane Akre says:

      Theresa have you had an ANA test for lupus? You may want to contact Hope Pagano in that she is doing research on the autoimmune issues as is her attorney. Please get a positive id on the Lupus… thank you.. ja

      • Julianna Curtis says:

        Hi Jane

        I had mesh implanted in me in 2007 and immediately had problems…very sick for years with going back and forth to doctors and other specialists. I was diagnosed with SLE, (Lupus), MCTD, (mixed connective tissue disease) and other cross over autoimmune diseases in 2011

        I had the mesh taken out in 2012 by the wonderful Dr. Raz after years of debilatating pain and illness. But I am disabled with this horrible disease and my disease is progressing. By the way….I still have a great deal of pain in my pelvic area, hips, low back , stomach and horrendous nerve pain. I will forever have Lupus and now I have to take chemotherapy once a week to try and eleviate the Lupus symptoms.

        Do I think the mesh which was implanted in 2007 was a cause of my autoimmune? HELL YES!

        I feel such deep compassion for my mesh sisters and brothers.

  22. Heather Giles says:

    I feel so much like Hope but I’m losing “hope” that anybody will ever help me. In 2008, I had SUI & POP repair with the insertion of a Gynecare TVT. My surgery also included retctocele & cystocele repair. It was supposed to be outpatient & I was supposed to recover in two weeks. I let that young urogynecologist doctor talk me into the sling which was supposed to be the best. Well, my life is ruined. Immediately following surgery I had such severe bleeding internally that I was told I was going to have to spend the night in the Surgery Center (which was really just for outpatient/same day surgery). The pain was unbelievable and because I couldn’t urinate mediately afterwards, the next morning I had to go home with a catheter. I went days later & had my catheter removed. The recovery was taking longer than I had expected. I began to have severe pain in my groin area. I called the surgeon & could only talk to his nurse. I felt a hard, painful ball in my groin. The nurse called me back & told me it was probably just a hardened ball of glue they use to seal the site of sling insertion- told me this over the phone! I went back to work four weeks later with a severe pain in the top of my thigh & that ball had spread to nearly the size of an apple. After vomiting all night & pain, I went to ER & was diagnosed with MRSA. The ER doc drained it & packed it & told me to go back to the urogynecologist. I called & called the urogynecologist & he wouldn’t return my calls. I left messages & called his personal cell-he just ignored me! My infection got worse & I got extremely sick- I had to go to a doctor who sent me to an infectious disease doctor who cut, drained, & packed my staph infection daily for several days. Finally, I got the Uro/Gyno doc back in the phone after threats to sue (which is a joke because nobody will help us!), & he blamed it on his nurse and how he doesn’t like to check or mess up his “Rock Star” vaginal work 6 weeks after surgery! I forced him to check his surgery or call ACOG on him. So, he saw me 8 weeks afterwards & never once took responsibility or care for my deathly infection. I never went back. He & Ethicon make me sick (literally)! After all of that I developed-fibroids in my backwards uterus. I called to find someone who could help. Everyone told me to just live with blood clots & pain. In 2009, I found a Gyno who did a uterine ablation but it didn’t work. By spring 2010, I developed adenomyosis with more than 7 fluid spots blood pooling around my uterus with fibroids & a dominant right ovarian cyst. I had a supra cervical lap hysterectomy in 2010. Less than 20 days after hysterectomy, I got laid off from my school teaching job for excessive absences. Gyno left the TVT sling in & I still have it to this day. I tried hard to steer clear of Gynos but I still have a cervix & left ovary. In 2012, my pains came back. I had vaginal bleeding & went back to a Gyno in a different hometown. He said I had inflammation & told me the vaginal itching I had was a more serious condition. He said my entire perineum was white, dystrophies, & scarred. He said he need to do a perineum biopsy. The biopsy confirmed I have Lichen Sclerosus- seriously painful disease that increases your risk of vulvar cancer!! I hate LS! Well, here we are in 2104- this past week I woke up with joint pains, a rash on my face (felt like sunburn but I had not been in sun), rash in my neck, & painful itchy scalp. I had been having stomach problems & mud back & hip pain. I went to doc thinking I had the shingles. He said he suspects LUPUS! Said my rash is the butterfly rash! I’m so mad! How can the government allow this to us? I had blood work & will go back next week to get results! Since that stupid sling- my life will never be the same! I’m only 39 years old! I’m bankrupt from working & paying for medical problems. Now, I’m so ill & in pain that Ive just lost all hope. When I read Hope’s story, I just felt like I needed to share mine. I forgot that I also developed for the very first time this past summer, kidney stones. I passed 4 them in July 2013. I think it all goes back to a faulty product- Gynecare Ethicon TVT – shame on you!

  23. Douglas Dashy says:

    My name Douglas dashy from Oxford,UK …HIV has been ongoing in my family for long..I lost both parents to HIV and it is so much pain have not been able to get over.As we all know medically,there is no solution or cure for HIV and the cost for Medication is very expensive..Someone introduced me to a man(Native Medical Practitional)in oxford..I showed the man all my Tests and Results and i told him have already diagnosed with HIV and have spent thousands of dollars on medication..I said i will like to try him cos someone introduced me to him..He asked me sorts of questions and i answered him correctly..To cut the story short,He gave me some medicinal soaps and some herbs(have forgot the name he called them) and he thought me how am gonna use them all..At first i was skeptical but i just gave it a try..I was on his Medication for 2 weeks and i used all the soaps and herbs according to his prescription.. that he will finish the rest himself..and i called him 3 days after, i arrived and i told him what is the next thing..he said,he has been expecting my call.. he told me to visit my doctor for another test..Honestly speaking,i never believe all he was saying until after the test when my doctor mention the statement that am, HIV negative and the doctor started asking me how do i do it….Am telling this story in case anyone may need this man his email is: dr.skhivhomefcure@gmail.com or call him now at +2348158847627

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