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Autoimmune Diseases and Surgical Mesh – Causation or Correlation?

Noni Wideman

Noni Wideman

Writer and researcher Noni Wideman has been at it again, uncovering the links to many autoimmune diseases that seem to plague mesh-implanted persons. This  does not mean there is a cause-effect but certainly there is a correlation seen with many of these diseases cropping up among those who have had mesh implanted to treat prolapse, incontinence or hernia.  To determine whether it’s a cause, there would have to be studies.    Please join in if you have suffered one of these diseases following a mesh implant. Here is her latest essay. Thank you Noni!

“I’m trying to understand why so many medical mesh complication victims have autoimmune diseases exacerbated by FBR to medical mesh or triggered /initiated after FBR to medical mesh implants?

     “The purpose of the immune system is to defend the body against attack by infectious microbes (e.g., bacteria, viruses, fungi) and foreign materials (e.g., chemicals, poisons). When the immune system attacks a foreign invader, it is very specific-a particular immune system cell will only recognize and target one type of invader. To function properly, the immune system must not only develop this specialized knowledge of individual invaders, but it must also learn how to recognize and not destroy cells that belong to the body itself.

“Every cell carries protein markers on its surface that identify it in one of two ways: what kind of cell it is (e.g. nerve cell, muscle cell, blood cell, etc.) and to whom that cell belongs. These markers are called major histocompatability complexes (MHCs). When functioning properly, cells of the immune system will not attack any cell with markers identifying it as belonging to the body. Conversely, if the immune system cells do not recognize a cell as “self,” they attach themselves to it and put out a signal that the body has been invaded. This in turn stimulates the production of substances such as antibodies that disable and destroy the foreign particles. In case of autoimmune disorders, the immune system cannot distinguish between “self” cells and invader cells. As a result, the same destructive operation is carried out on the body’s own cells that would normally be carried out on bacteria, viruses, and other such harmful foreign material.

“The reasons why immune systems become dysfunctional and fail to recognize the body’s own cells is not well understood. However, most researchers agree that a combination of genetic susceptibility, environmental, and hormonal factors play a role in developing autoimmunity. Researchers also hypothesize that autoimmunity may be triggered by several different mechanisms as follows:A substance that is normally sequestered in one part of the body, and therefore not usually exposed to the immune system, is released into the bloodstream where it is attacked.”The immune system may mistake a component of the body for a similar foreign component.”Cells of the body may be altered in some way, either by drugs, infection, or other environmental factors, so that they are no longer recognizable as “self” to the immune system.”The immune system itself may be damaged, such as by a genetic mutation, and therefore becomes dysfunctional.”

The symptoms of autoimmune disorders vary. See specific disorder topics for more complete information.  A short summary of symptoms is as follows: include:

Systemic lupus erythematosus. Symptoms include fever, chills, fatigue, weight loss, skin rashes (particularly the classic “butterfly” rash on the face), vasculitis, polyarthralgia, patchy hair loss, sores in the mouth or nose, lymph-node enlargement, gastric problems, and, in women, irregular periods. About half of those who experience lupus develop cardiopulmonary problems, and some may develop urinary problems. Lupus can also effect the central nervous system, causing seizures, depression, and psychosis.

Rheumatoid arthritis. Initially this disorder may be characterized by a low-grade fever, loss of appetite, weight loss, and generalized pain in the joints. The joint pain then becomes more specific, usually beginning in the fingers, then spreading to other areas, such as the wrists, elbows, knees, and ankles. As the disease progresses, joint function diminishes sharply and deformities occur, particularly the characteristic “swan’s neck” curling of the fingers.

Goodpasture’s syndrome. Symptoms are similar to that of iron deficiency anemia, including fatigue and pallor. Symptoms involving the lungs may range from a cough that produces bloody sputum to outright hemorrhaging. Symptoms involving the urinary system include blood in the urine and/or swelling.

Grave’s disease. This disease is characterized by an enlarged thyroid gland, weight loss without loss of appetite, sweating, heart palpitations, nervousness, and an inability to tolerate heat.

Hashimoto’s thyroiditis. This disorder generally displays few symptoms.

Pemphigus vulgaris. This disease is characterized by blisters and deep lesions on the skin.

Myasthenia gravis. Characterized by fatigue and muscle weakness that at first may be confined to certain muscle groups, but then may progress to the point of paralysis, myasthenia gravis patients often have expressionless faces as well as difficulty chewing and swallowing. If the disease progresses to the respiratory system, artificial respiration may be required.

Scleroderma. Tish disorder usually is preceded by Raynaud’s phenomenon. Symptoms that follow include pain, swelling, and stiffness of the joints, and the skin takes on a tight, shiny appearance. The digestive system also becomes involved, resulting in weight loss, appetite loss, diarrhea, constipation, and distention of the abdomen. As the disease progresses, the heart, lungs, and kidneys become involved, and malignant hypertension (high blood pressure) causes death in approximately 30% of cases.

Autoimmune hemolytic anemia. May be acute or chronic. Symptoms include fatigue and abdominal tenderness due to an enlarged spleen.

Autoimmune thrombocytopenic purpura. Characterized by pinhead-size red dots on the skin, unexplained bruises, bleeding from the nose and gums, and blood in the stool.

Polymyositis and dermatomyositis. In polymyositis, symptoms include muscle weakness, particularly in the shoulders or pelvis, which prevents the patient from performing everyday activities. In dermatomyositis, the same muscle weakness is accompanied by a rash that appears on the upper body, arms, and fingertips. A rash may also appear on the eyelids, and the area around the eyes may become swollen.

Pernicious anemia. Signs of pernicious anemia include weakness, sore tongue, bleeding gums, and tingling in the extremities. Because the disease causes a decrease in stomach acid, nausea, vomiting, loss of appetite, weight loss, diarrhea, and constipation are possible. Also, because vitamin B12 is essential for the nervous system function, its deficiency brought about by the disease can result in a host of neurological problems, including weakness, lack of coordination, blurred vision, loss of fine motor skills, loss of the sense of taste, ringing in the ears, and loss of bladder control.

Sjögren’s syndrome. Characterized by excessive dryness of the mouth and eyes.

Ankylosing spondylitis. Generally begins with lower back pain that progresses up the spine. The pain may eventually become crippling.

Vasculitis. Symptoms depend upon the group of veins affected and can vary greatly.

Type I diabetes mellitus. Characterized by fatigue and an the inability to break down glucose, resulting in abnormally high level of glucose in the blood (hyperglycemia).

Amyotrophic lateral sclerosis. First signs are stumbling and difficulty climbing stairs. Later, muscle cramps and twitching may be observed as well as weakness in the hands making fastening buttons or turning a key difficult. Speech may become slowed or slurred. There may also be difficulty swallowing. As respiratory muscles atrophy, there is increased danger of aspiration or lung infection.

Guillain-Barre syndrome. Muscle weakness in the legs occurs first, then the arms and face. Paresthesia is often present. This disorder affects both sides of the body and may involve paralysis of the muscles that control breathing.

Multiple sclerosis. Like Amyotrophic lateral sclerosis, the first symptom may be clumsiness. Weakness or exhaustion is often reported, as well as blurry or double vision. The individual may experience dizziness, depression, loss of bladder control, and muscle weakness so severe that the patient is confined to a wheelchair.

Celiac disease. Damage to the lining of the small intestine causes immediate difficulties in digesting food that result in diarrhea, gas, and cramps, and long-term symptoms of vitamin and mineral deficiencies, anemia, osteoporosis, and weight loss”

138 Comments

  1. halina says:

    Are you aware of Clarkson’s Syndrome (otherwise known as systemic capillary leak syndrome) diagnosed by Mayo Clinic (mesh related). The flip side in alternative medicine leaky gut syndrome and their literature is a little easier to grasp working knowledge of. The gateway to the immune system is through the gut.

    • Kim says:

      Hi friends, i am sharing my family testimony with joy and hopes that you will also use to get your own cures from the best herbal doctor…i was sick from the disease Ephysema, i had to stop my work and cut all contact from friends, for long i searched for possible help to get cured but couldn’t get any, Until i came across a blog testimony the herbal cures for Dr Sebi provide, i contacted him through his email: (drsebiherbalisthealinghome12@gmail .com) with my problem,he prepared herbal medicine and sent it to me, i used it with his instructions then i went for my weekly test,my tests result came out negative.
      Recently Dr Sebi also saved my sister,she was having warts infections all over her body,it was itchy and reddish, i quickly contacted dr sebi, he sent us some herbal to use and now everything is clear from her skin. Why struggle with any sickness and infections when all you can do is contact Dr Sebi, his email: (drsebiherbalisthealinghome12@gmail .com) he will help you with his genuine and certified herbs.
      Thank you dr sebi.

    • BARB K says:

      I HAVE SURFACE HERNIA MESH,IVE HAVE PAIN AND BURNING IN LOWER PELVIC AREA,HAVE ALOT INFECTIONS !!!! NOT REALLY GETTING HELP !!!!!!!!

  2. Richard Howden says:

    A well written article Noni. I have felt that the little infections that I have been getting and continue to get in increasing numbers is related to my immune system breaking down. It would make sense that if your immune system has been fighting a large foreign object for years, there will be a consequence to the immune system and it’s capability to continue it’s fight. I also wonder about the possibility of chemical leeching from a mesh product as it starts to break down inside of the human body. I have talked to a few Mesh victims that swear to that. They blame the Mesh for all sorts of ill’s normally associated with chemical imbalance and exposure. Thanks for a great article.

    • Mike Meghreblian says:

      WOW, Richard & Noni you have just sent a shock wave through my entire everything! Ever since bard davol poly mesh implant I continuously get sick. Like my immune system is fighting me. I have never been sick so much & so often until mesh implant. Thank you for sharing.

      • Louise says:

        I had a groin problem since the Mesh and had a total hip replacement July 2015 and I had problems ever since.I had 3 abcesses and infections, IV antibiotics and nurses at home.It’s been a year since the surgery, now and having IV antibiotis at home, again.They told me that I might need a third and maybe a fourth surgery if infections keeps coming.Did about 5 to 6 tests and the results I was told are complicated and are not clear.I ask them what is not clear and they answered, that it’s not clear.What kind of answer is that? I’m so fed up that I started having anxiety attacks, so my Family Dr. increased the dosage of my antidepressants…My question is ” Can I be rejecting the hip? How do I know if it’s a rejection ( symptoms) Why is this happening to me? Waiting for an answer…Thank you so much…

        • Jean says:

          Hi Louise, are you in the Uk? If you are I would advise you to get a copy of your medical records from the hospital. Contact the records dept or PALS at the hospital and they will start the process.
          Then go from there, the records can be quite revealing! I wasn’t sure if I had a mesh but I found that the consenting Dr wrote in my notes that he had explained the mesh to me and I was aware of the risk of erosion! All a complete fabrication!
          I wish you well with your health problems.

    • BARB K says:

      I HAVE SURFACE HERNIA MESHI DEAL WITH LOWER PELVIC PAIN AND BURNING !!!!!!!! HAVE INFECTION, MEDICAID DON’T COVER MUCH DR SAID !!!!!!!!

  3. Ann says:

    I had a mesh removel last August after having it in me since 2008 I can relate with what you are saying just today I went to have a mamogram and have lumps on my breast that are not cancerious, but 3 that are there Friday I am going to see a Dr for possible injections to help with the daily pain. I live in Boston any words of wisdom will be appreciated.

    Ann

    • Jane Akre says:

      Ann- You say you had a removal- how do you know? Was there additional imaging after the removal? There are so few doctors able to do a full mesh removal one has to be careful. I”m sorry this has happened to you. You can write me privately if you’d like and I can put you in touch with patient advocates who have been there. janeakre@meshnewsdesk.com Thank you…

    • Bobi Jo says:

      First, I want to say I’m hoping the lumps were not cancer and that you are doing much better since the mesh removal.
      I am curious if you were told or suspect that the lumps are associated with your adverse reaction to the mesh implant. I have been having a series of issues with my joints and nerves since my implant in 2014. 8 months ago o had an abdominal CT scan and a mass was foubd on my uterus. Just yesterday I went for the results of my MRI for my hip and was told they found a cluster of cysts in my ovary which wasn’t there 8 months ago. If you or anyone else has had these same problems, please respond, I’m desperately looking for answers as to why my body is at war with itself and I’m seriously considering having this mesh removed just in case it is the cause. I’m already in constant pain, so what do I have to lose.

  4. Miri says:

    Please correct me if I am wrong, but I believe that sarcoidosis is also an autoimmune disorder. Does sarcoidosis fit into this picture of autoimmune disorders that have a relationship to mesh? If someone has a history of having an autoimmune system disorder, would mesh implantation be contraindicated? Would the existing autoimmune system disorder be made worse by mesh implantation? If ones autoimmune system disorder was in remission, could mesh implantation activate it?

    • Noreen Wideman says:

      autiommune disease was a stated a contradiction for mesh implanatation on one of the mesh manufacturers brochures for doctors….. makes me suspect strongly the manufacturer knew FBR to PP mesh would exacerbate autoimmune conditions or even cause them…..

      • MBrown says:

        Noreen, Do you know which manufacturers brochure said that?

      • beth says:

        I had the mesh put in in 2010. 6 months later it migrated into my vaginally wall. I’ve had 3 ops to pick out piece’s that have broken off. One piece was about 2 inches long with sharp medal hooks on it. No wonder I felt like I was being stabbed by something very sharp.

        I was diagnosed with RA the same year. This is pure hell. This has just ruined my life. I was only 47 when it was put in.

        I have suspected this mesh had something to do with this. And now I’m sure of it. Please direct me to the company that had the “beware” warning on it.

        Thanks so much ladies.

    • Tina Peterson says:

      I also have Sarcoidosis which I was diagnosed a year ago and have just started doing research to see if it is a result from my mesh surgery in 2009.

      It is an autoimmune disease. Have you learned any further information? I would be interested in hearing from you if so. You may email me to tinapeterson2@yahoo.com

      • Jane Akre says:

        Tina- You may want to contact Hope Pagano about autoimmune issues as well as Noni Wideman who is available on Facebook.. she is doing incredible research on autoimmune… let me know if you need further contact OR if I can send your email to them…..

        • Yolanda says:

          Hello” I’m interested in all the information you have’ most recently, I almost died, after going into a Raynaud’s Stage, & I have @Least 3 of these Immune diseases, & never been treated for them; They tried to make me appear to be crazy” & I began going to get my records most recently because I’m constantly being told that everything was fine; Well I was deceived, 3 years ago my biopsy showed systemic Vasculitis” & I’ve had Myositis for over 10 years, & never was treated, constantly misdiagnosed; I’ve been bleeding, (hematuria) for 8 months now; 6months ago, I begin having bladder issues, & for the past year my abdomen, pelvic area, & kidneys, lower back & Chronic chest pains, took a turn for the worse; But the most unethical thing I’ve ever heard of, & seen ever is” I never knew I even had a vaginal mesh until last month” I’m currently at a point where only God can make the tremendous difference in my health; I need to get this thing out, & share what has happen to me” & how I had back to back surgical procedures, for cyst, but they put this in while I was told I was getting cyst, polyps, & a Total hysterectomy; I got divorced after 20 years because of many of these issues, remarried, & after 1 month” I couldn’t stay in the marriage; After suicide attempts, & the mental strain on my whole family, & the constant daily pain, is unreal. Not knowing, being accused, & persecuted changed my life; Until I got a personal relationship with God. I’m an Ordained minister, & God has been my rock. These Doctors that saw me in the past 2 years, (especially in the last 8 months as my body began to turn for the worse)” Should be stripped of their license” because A Dr. has not treated me, even at this present condition, afraid to go behind another Dr. mistake, & they would have me die” to cover up deception. I’m currently looking for another Dr. getting ready to move, to find treatment that I need; But I will not let them get away with what they’ve done; Please contact me with any assistance, advice, or information. I’m looking now to move from Detroit M.I., And get out this system, & find me an attorney; to get specific Biopsies” I have all the signs of a Tumor right now; I think this is great what your doing in spreading the word” Awareness is a movement I’m currently organizing. GOD BLESS!

          • Jane Akre says:

            Yolanda- It sounds like you are at the beginning of your journey. Please contact me and we can get you informed on what info you might want to access to talk to lawyers and doctors. janeakre@meshnewsdesk.com. Thank you for writing. Please obtain your medical records, all of them. I’m sure many would like your help to reach out to churches with this crisis.

          • Carol says:

            You are not alone…I too just discovered last year after multiple physician visits I had TVT placed with histerectomy in 2006. I have not been well since and struggled with abscess, UTI’s, urgency, retention, poor immune. Eight months after implant I had emergent exploratory lap for adhesion removal in pelvic, ureter and vagina. Even then I was not told mesh was implanted. I am an RN and after much research of my symptoms kept coming up with chronic fatigue and fibromyalgia which I refused to believe there was no cause, which lead me to a urogynecologist that found mesh upon first exam. Five other physicians prior refused to acknowledge. I had hope of having it removed only to be told it was incorporated in by bladder and impossible to remove, then awoke from surgery with more mesh implanted. Two months after 2nd implant with sacrocolpopexy I began to have RA symptoms that are progressing, not to mention my bowels are not functional and I have to manually empty them everyday, enemas make me cramp severely and bleed. I have now seen an array of doctors with very little mesh experience however all are willing to cut me open and explore. After reading all the shared stories and advise from so many other women with mesh I have an appointment with Dr. Raz and counting the days until hopefully some relief. I am 100% certain the mesh is cause of all my problems. I was very healthy pre mesh and never had any other surgeries or health problems until mesh implant (except tonsilectomy at age 17). I’m not sure I would be able to comprehend all of this had I not experienced it myself, which is why we are all struggling to get the help we need. Keep your faith and don’t let this mesh or worldly ignorance take that away…With God all things are possible!!! God bless all and may each mesh victim find comfort and healing. May more physicians and the mesh companies take responsibility and stop implanting mesh!!!

          • Lou says:

            The best advocate for you is yourself! !
            If I have learned anything from doctors & surgeons—it is not to trust them ! I have been LIED to over & over !
            I’m being lied to right now—by 3 different doctors. I keep telling myself ” go with your gut feeling .” When I do that, then my common sense tells me to investigate my medical problem thoroughly !
            In the past 5 yrs. I have dealt with 7 different gynecologists & urogynecologists for the same condition– prolapsed bladder ( which has made some rectal problems. ) each doctor says something different !
            I am dealing with 2 surgeons right now. Both doctors are ( supposedly ) in the top 10 in this field. They are saying drastically different procedures. The one thing they both have in common , is MESH !!
            I have 6 different autoimmune diseases—and they want to put mesh inside of me !!! They lie point blank to my face & say it is safe to do this !

            I have a long story–too long to go into now. I have been misdiagnosed many times in my lifetime. Between doctors being motivated by money & power—- and not the love of medicine & the need to help their patients—–I feel doomed to never get the proper medical attention & care that I need.
            Don’t know what I am going to do about this current medical emergency with my bladder repair surgery.

          • Eroded mesh victim says:

            I had a Transvaginal mesh implant for sui and pop in 2010. Erosion is #1 issue. I Had surgery for the mesh to be removed and led to believe it was in 2015. I have all my medical records from implant to present. First of all the physicians and hospitals do their best to make us look crazy! They know what chemicals were used when manufacturing the transvaginal mesh. The mesh can NEVER BE REMOVED!!!!! I am 100% disabled with multiple severe health issues, It’s sickening to know why. I have alot of free time, due to severe loss of quality of life and I love to research. It repulses me to know this JANE is an Attorney to collect more information and more clients just For Profit and Gain, just like the Manufacturers who are taking away our lives.

          • Jane Akre says:

            Hi Eroded, I assume you are injured and in pain. I also assume you are making some wild assumptions. I do not send along anyone’s email unless they ask to be put in touch with someone. Sorry but your research is based on nonsense. There is a lot of money grabbing going on here, true, but I just found the old advertiser model worked best for me. You can call me at anytime if you’d like to have a constructive conversation, otherwise please refrain from bashing your editor on this site which is provided to the public free of charge. I hope you get the help you are looking for.

          • velma says:

            i am also going through the same thing. the pain is horrible im also dealing with numbness of arms and hands my body is attacking itself bc of a bladder sling. i only can urinate once a day or every other day my bowels are blocked due to the sling my bladder has now collapsed again bc the sling didn’t attach to the bladder due to not being properly installed and i also found out it had been recalled a year prior to being installed in my body. i also have been told i need to see a physiologist bc its all in my head and was diagnosed with conversion disorder there is nothing wrong with me mentally i know my body and i know what hurts. i have finally found a dr that understands me and i will be scheduling my first revision surgery when i see him on july 18th. it has caused bad infections in my body to where i look 9 months pregnant and people asked me when is my baby due. how humiliating i dont wanna leave my house or room anymore bc i cant stand to wear clothes bc of the pain being so bad!!! anyone needing a bladder tac DO NOT GET A BLADDER SLING!!!!! its years of pain its been 5 years since i got the sling and i will be 41 come july 15 really sad to deal with this.

      • Kathy stemen says:

        Hi . I am trying to get info on the same stuff you are and I just got my blood test back and I am Hal-b27 positive and I had a mesh implant in 2012 . I have so much pain that I can not walk and ther where I live will not give pain Medes . My blood pressure was 203/95 at the er last week and I still do not know what is causing all my pain I know some of it is from the mesh as I have had 4 surgery’s so far and my dr will not order more test since the positive result of hla b 27 what should I do from here ?

        • Jane Akre says:

          Where are you located Kathy? You need a mesh expert to handle your health…. pls advise.

        • Jenny k says:

          Kathy I am an RN als I had mesh bladder lift and sling ureter.. During a hysterectomy in 2011. Almost immediately my body went rouge! BP went 220/160 had to go on multiple BP mess mesh started going thru vaginal walls bacterial infections…psoriasis, Ramsey Hunt syndrome, adhesions multiple surgeries 6…transverse myelitis the list goes on!!…chronic pain fatigue migraines!.. Hell on earth! I told my ob gyn to get it ALLL OUT!!! It was supposed to take 2 hours and go home same day …. It was a 10 hour surgery my ovaries along with the sling were adhered and wrapped around my sigmoid colon my bladder was adhered and had many many lesions.. I lost
          Much blood have to be transfused and was in the hospital for over a week!!! Hell on earth I tell you!!!

          • Jenny k says:

            I had Bard Mesh implanted in 2010 and
            Ethicon sling Johnson & Johnson 2010
            Both were removed In July of 2013

  5. Terri says:

    Autoimmune hepatitis in at least several of us in the support group, which is diagnosed if you happen to have routine blood work done when the liver enzymes are elevated.. I was having severe pelvic pain and requested an ultrasound and my Doctor said ok but first he ordered blood work and a urine sample at the lab (in the same building) I noticed my urine was very dark… within an hour the results came back that my liver enzymes were through the roof and over 900.. after being hospitalized for four days and no medications administered -just a lot of test- my levels began coming down on their own. My point here is your liver can come under attack by your own immune system and unless you just by some chance get blood work done you may never know.

    • Anna s says:

      Hi Terri You mention several in your group that have Autoimmune Hepatitis. I would be very interested in connecting with you as I was diagnosed with AIH 2 years after I had my mesh implanted. At that time (2014) I brought up the idea that the mesh could be implicated but was soundly dismissed by all the Medical Professionals. Laughed at even. I didnt think it was so funny! I thought it was a possibility. Just recently I have been acting on my gut feelings and begun doing some research about Autimmune conditions and the pelvic mesh.

      • Laurie says:

        The “medical professionals” that look at you like you have two heads…when you ask if a health problem could be related to mesh…angers me the most! If one did not have the health issues before the mesh is implanted…but has health issues after implantation…why is it dimissed so easily by some medical professionals? OUR negative health experiences are REAL…I just wish I would have followed my intuition and never had a mesh implant in the first place! I AM ALWAYS sick…thankfully I have an operation scheduled to remove this mesh from me in a couple of weeks….my prayers to all of you out there suffering with these mesh complications! These mesh implants have to stop…if anyone is considering having a mesh implant…please do not! Being sick all the time is not living a good life and your family and friends suffer also
        ..

        • Jane Akre says:

          Laurie- I hope your doctor serves you well with the mesh removal… please let us know. Good luck and best of health.

  6. Noreen Wideman says:

    autiommune disease was a stated a contradiction for mesh implanatation on one of the mesh manufacturers brochures for doctors….. makes me suspect strongly the manufacturer knew FBR to PP mesh would exacerbate autoimmune conditions or even cause them…..

    • Nichole Klein says:

      I had a full mesh removal from Dr Miklos but I beleive not soon enough…. I have Lichensclerosis(spelling) I had it before the sling but went away and never saw it again until the sling was put in then it’s ugly face reared ten fold. I also have had endometriosis since a child. Never any complications as a matter of fact my Ob said after having the sling put in that there were some lesions but I was not too bad and it was not severe. Then I got the sling and 3 months later found myself in the OR having puss removed from my pelvic area along with all my female organs….the doctor didn’t know what caused it but said my endometriosis was severe….I wonder if that is autoimmune. But I still can’t figure out the abscess( pus) and what caused it……

      • Pat says:

        I had a mesh inserted before ten years ago. Following this I had irritation issues of the vulva. Then had a check on skin. Was told I had a mild case of lichen scelrosis. I have had operations on vulva and have been confirmed by different consultant to have the same. My condition is now severe. I am under consulltants at hospital and am very concerned.

        • Jane Akre says:

          Pat- Have you added your experience to the autoimmune registry? I hope so. I’m so sorry…. have heard of this before…. anyone else?

  7. Judy says:

    developed disabling fibromyalgia after mesh implant ~ is fibro considered an autoimmune disease?

    • Rebecca says:

      Yes Fibromyalgia is an autoimmune disease. It is said that your body attacks nerve cells making them overactive and in hyper irritated state. I am a nurse and I too have fibromyalgia as do several other victims. It is thought that there has to be some traumatic event that triggers the nerves agitation. I am not fully verse on the relation between the mesh and the fibromyalgia but I do know that it is a recurring problem for victims of mesh. I will try and do some research of my own on the subject.

      Rebecca

  8. anne says:

    After I received a mesh implant in 2006, I have been diagnosed with Multiple Sclerosis, fibrimyalgia, asthma, angio edema, and have had about 10 abscesses in my pelvic region, 5 reqired hospitalization from 10-14 days plus weeks of antibiotics. I’ve had to retire on disability. I did not connect the dots leading back to receiving the mesh. I had rheumatoid arthritis and lupus before but was never told these might be exacerbated. What scientific studies have been done to support our claims?

    • Jane Akre says:

      Hi Anne- Some lawyers are working to connect the dots… that would be new science but there are too many cases of autoimmune to be a good coincidence it would seem on the surface at least. Check in with Hope Paganos profile, I know she is working in this regard… please stay in touch.. i’m sorry.~ ja

      • anne says:

        My attorney specifically asked for my med records that had all my autoimmune disorders documented, along with hospital records with the abscesses documented. I’m hoping they will figure something out and warn others! My pain level increases daily and no med touches it. I feel like death is just waiting for me. I know that no dollar amount will cure me. Only pay for people who will care for me.

        • Karin says:

          anne… Get the mesh OUT! Asap. You can find a doctor thru this site or tvtno.org. There is hope!

          • In extreme pain, nauseous tingling throughout body, sweats dizziness blurry Vision dry eyes. Groin pain where sling is. Two years in and doctor refuses to look to see if sling is causing problems. In Ohio. In financial crisis.

          • Jane Akre says:

            Please let us know if you have insurance and can get to a doc who understands complications….Your doctor is not one of them. janeakre@meshnewsdesk.com

          • Roset says:

            I had mesh surgery in 2009. I’ve been to so many Drs. trying to get help and all denied it could be the mesh. Alomg with the chronic pain I have I broke out in a rash around 9 months after the surgery and has continually gotten worse. It started on my head and face and progressed to my entire body which has almost drove me crazy. I finally foun d Dr. Kim at UCLA med. center she took one look at my records and said it was the mesh, thank God someone listened. I had all of it removed but still have horrible rash. She said it attacked my immune system and nervous system. I’m on antibiotics but it is not helping. I’m afraid I’ll never be the same. I need to see an immunologist and I have to have another surgery.

          • Jane Akre says:

            Please fill out the autoimmune registry which goes to UCLA to help them track down this horrendous side effect of mesh. Thank you.

            https://www.meshmedicaldevicenewsdesk.com/ucla-partners-mesh-news-desk-autoimmune-registry-pelvic-mesh-complications/

    • Nikki says:

      Please contact me …I had an abscess in my pelvic region and they had to take all my female parts because it was puss everywhere…they never told me what caused the abscess, but when they opened me up…I was a mess. I have tried to look into types of abscess caused by the sling but there is such little info on it!!!!help me find something that makes sence…please

      • Jane Akre says:

        Nikki- Do you have adequate medical help? I certainly hope so. contact me if you do not….. janeakre@meshnewsdesk.com

        • Amanda says:

          Hi Jane I was wondering if you could help me out, I have the CR Bard pelvisoft vaginal mesh is there a doctor that can take that out or what do I do please help me I don’t know of anyone else that has the pelvisoft. Thank you Amanda

          • Jane Akre says:

            Amanda I would consult with an expert…. not all agree it has to come out. It really depends on your symptoms. Where are you located…. write me with that and I can send you some names that folks seem to like…. they are not always in your area. janeakre@meshnewsdesk.com

  9. Karin says:

    I am very glad someone mentioned fibromyalgia. I was diagnosed with fibro three years after my meshes were implanted. Symptoms started sometime after implants and it took a while to get diagnosed. I had two partial mesh removals. The first was for TVT sling and that helped improve my incontinence complications and bladder retention as well as some improvement of bladder spasms and bladder pain, but not complete recovery of these issues. Two years later, I had a partial excision of my prolift mesh and that is when I saw a noticeable improvement in my back pain and fibromyalgia. For a while… Until mesh began to erode again and my immune system went berzerk. The fibro was even worse than before and the back pain was unbearable. Vaginal pain was excruciating. My endocrine system went crazy and my body was working so hard to expel that mesh but couldnt and my immune system was just randomly attacking my body. Constantly elevated white cell counts and absolute neutrophils (which I now understand to be the little guys that rush to the site of any injury and are short-lived… Only there till the job is done. But in my case, my body was working hard to heal something it could not heal… Hence the elevated levels. Causing so much fatigue. I was so sick and exhausted). It got so painful and disabling I desperately searched for doctor who could remove ALL of this mesh. My body was rejecting it. That was obvious. A full-fledged foreign body reaction and systemic immune reaction. I found Dr Veronikis on the tvtno.org site and a month later he spent over five hours removing both of my meshes. ALL of it. Pretty rough surgery and long recovery, but worth it. I had this done Dec 20, 2014. Once the initial intense surgical pain subsided, the biggest improvement I noticed was the amazing amount of energy I felt after years of extreme fatigue. And the complete lack of vaginal pain. There was an improvement in my back pain and fibromyalgia as well, but I fear that may never completely go away. My gift from mesh. It has been worsening again but still so much better than before. I have heard it can take up to a year for your immune system to recover. So perhaps it will go away? I dont know. I am not now and probably never will be the same as pre mesh. But total mesh removal made a huge difference. Time will tell how much of a difference but I am grateful for ANY relief. In the months leading up to my last surgery, i was in so much pain. Now I am more mobile. Have less pain. More energy. Some issues gone, some are better. For this I am so thankful. I had given up hope and was so depressed. I am smiling again. There is alot of scar tissue from the multiple surgeries and that is an issue with pain. But the horrible hip pain (from mesh that had migrated) and ALL vaginal pain is totally gone. Prior to this surgery, anything inserted in the vagina was excruciating.

    Pelvic exams a nightmare. Even the little applicator for the estrogen creme they prescribed. Now I can even resume sexual relations with my husband! So was it successful? Oh yeah. But fibro remains an issue for me and so many others. Hang in there ladies. Dont give up hope. If you have autoimmune issues from mesh, removal may or may not cure you. But you will feel better. Much better. Find a doctor who has a proven track record on successful complete mesh removal. This site and tvtno.org can lead you there. Dont trust just any doctor claiming they can do this. Do your research and get it OUT! Sending healing prayers and support to all of you.

  10. Karin says:

    Oops… The surgery was dec 20, 2013. NOT2014!

    • Wilma says:

      I just had all my mesh removed from Dr Veronkis 3 weeks ago. How long was your recovery? I dont know if its my age,62, but i have little energy. Surgery was extensive n 4 1/2 hours. I still do not have bladder control. He warned me of that. Did you experience that also?

  11. Laura says:

    Good information. Thank You Noni for your research. I also had full mesh removal by Dr. Veronikis in 2013. Since removal my asthma has not been nearly as irritating as it was with mesh and I no longer have fibromyalgia symptoms or the chronic fatigue.

  12. Nichole Klein says:

    I had a full mesh removal from Dr Miklos but I beleive not soon enough…. I have Lichensclerosis(spelling) I had it before the sling but went away and never saw it again until the sling was put in then it’s ugly face reared ten fold. I also have had endometriosis since a child. Never any complications as a matter of fact my Ob said after having the sling put in that there were some lesions but I was not too bad and it was not severe. Then I got the sling and 3 months later found myself in the OR having puss removed from my pelvic area along with all my female organs….the doctor didn’t know what caused it but said my endometriosis was severe….I wonder if that is autoimmune. But I still can’t figure out the abscess( pus) and what caused it……

  13. Lori Rutter says:

    I have Essure, 10 yrs as of Dec 4 2013. I have been dx MS, 18 yrs ago. I started MS therapy drug immediately when dx and doctor told me I would never see a wheelchair. I have been confined to for over 2 1/2 yrs now and started with cane within year of implant. This is a birth control coil implanted in tubes, however is mad of nickel and mesh. Many others having various problems. Are there others? I also was born with heart disease and the evidence of death caused by mesh breakdown is terrifying me. I want a complete hyst to have out but doc concern with complications from MS. Any others with this?? Any advice??

  14. Beth says:

    I was implanted with the Gynecare Prolift in 2009. In 2010 I was diagnosed with rheumatoid arthritis. No one in my family has ever been diagnosed with any autoimmune diseases. Ever since the mesh, I’ve had UTI after UTI, bacterial vaginosis, blood in my urine and abnormal Pap smears. (I still have my cervix). Now I’ve been diagnosed with interstitial cystitis which I understand is another type of autoimmune disease. I have constant pain and the thought of sex breaks me out in a cold sweat!! Obviously I’ve been told by a urogynocologist that the mesh needs to be removed but I can’t be away from my job that long for financial reasons. My question is this…has anybody found a direct link between the vaginal mesh and autoimmune disease? Thanks for any help.

    • Jane Akre says:

      Beth go to linksonmesh.com She has some amazing research… as I said… scientists need to connect the dots.. where’s there is smoke there is fire! here

      http://meshproblems.weebly.com/

      • Cara says:

        I was recently diagnosed with low IgG, which is an autoimmune disorder.I was implanted with mesh nine years ago. It was a scary wait while they tried to determine if it was from blood cancer(it’s not, Thank GOD).I have been suffering with this evil mesh for many years now. It used to be that I just had excruciating pain;now my immune system is attacking me.
        May GOD help us all!

  15. I was implanted with mesh 8 years ago and have been developed many problems, I believe, as a result of it. Recently I decided to have the mesh removed and was told I have Lupus anticoagulant deficiency, an autoimmune disorder. Has anyone else come up with this diagnosis. They found it accidentally during pre-surgical testing to have the netting removed. My hematologist seems to believe that it is as a result of the netting. I am petrified to have the netting removed because I am afraid I will develop a lethal blood clot even though they said they would treat me with Lovenox prior and after surgery to prevent them. There is not guarantee that I won’t develop one especially during pelvic surgery. The doctor doing the surgery said she could only remove part of the netting as the rest has become part of my body. This netting has ruined my life and eventually will put an end to it. So unfair.

    • Jane Akre says:

      Anna- I’ve never heard the term “netting” but I’m assuming you mean mesh. Did you have hernia or pelvic mesh? Autoimmune issues are so common.. almost every patient has some form whether rashes, joint pain, antibiotic-resistant bacterial infections, Lupus….. Please see the linksonmesh Facebook page.. Noni Wideman has done an incredible job. Here is her website with the research and she has a FB page as well. Why can’t all of the hundreds if not thousands of explants be tested? There are at least three maybe four explant labs…….
      http://meshproblems.weebly.com/

  16. Vaughn says:

    I’ve researched numerous articles on hernia mesh and autoimmune disease, however, I have had my mesh implanted 10 years ago this month (July 2014) but without any issues of any kind until November 2012. Is there any evidence that supports issues with hernia mesh implanted this long? As of this writing I am stilll awaiting a diagonsis from my G.P. but based upon personal research, I am leaning toward Myasthenia Gravis due to weakness in arms & legs, dizziness, shortness of breath and chocking occasionally.

    • Jane Akre says:

      That’s a tough one to diagnose…. with the time passage… mesh can flare up at any time and no one knows what the long term effects are, you are the test… Bruce Rosenberg is with a nonprofit and very knowledgeable… 954-701-5094. Call him.. it takes a few trys and ask him those questions.. he is an expert, really.

  17. Sarah Wallace Smith says:

    There is also another autoimmune disease, Relapsing Polychondritis, which I have. Although it is rare (200+ cases worldwide in 2011), please include it. It is very debilitating with very bad side effects.

  18. It was an Ethicon brochure (J&J) that stated underlying autoimmune issues were a contradiction for mesh implantation patients …more and more patients are noticing the symptoms of autoimmune disregulation after being implanted with surgical mesh ..it seems not to matter how it is implanted, where it is implanted, ….some have had definitive diagnosis, many are waiting for diagnosis….. I am hoping when I find a scientific group of researchers willing to study this causation post mesh and alleviating or recession of some symptoms post mesh removal that all patients with autoimmune issues post mesh will volunteer their medical info and ask the doctors to help with the researchers efforts on our behalf …. our experiences need to be recorded and analyzed by reputable scientists/ researchers/doctors, not swept under a medical rug …… this affects, as millions of patients have been implanted with PP mesh for hernia repair, one of the most common surgeries …… add the hundreds of thousands of women with mesh in their pelvises … please email me if you want to help and then if I gain the support of a research team I will find out how they want to gather the info from all of you willing to participate in a research effort…. do not send me your personal info, just your email address and offer to have your medical records studied I will make a list of volunteers for prospective research initiatives , thank you in advance for volunteering to participate ….. Nonie

    • Jane Akre says:

      Noni- will you contact the various labs that have mesh explants? they need to compare i would think…. so important.. Thank you.

    • Rana Mickelson says:

      Would love to be included, and will happily provide any info needed. Thanks so much!

    • Rhonda Page says:

      I had j&j sling surgery in August 2010 along with rectocele and cystocele repair then another cystocele repair in January 2011. In October 2011 I began having severe hip and back pain soon after other strange problems occurred Was diagnosed with Meneires disease severe dry eye have another rectocele needing repair. Heart problems now my back pain is almost debilitating and am in therapy. Have severe memory loss. I am 54 years old and was in reasonably good health prior

      • Carrie says:

        Hello, I’ve been very sick with over 50 symptoms since my reconstructive surgery with mesh to reconstruct my chest. Please let’s tslk. My PS will not release my records and I’ve already paid him for them.

        Tired of being so sick for thee past 10 yrs. Kidneys bleed, liver is in trouble, my organs are not functioning right. I’m affraid I’m dying

        • Jane Akre says:

          Those records belong to you. Your doctor may be afraid of litigation. Insist on your records! You may talk to the medical board of your state about forcing them to be released….. A certified letter to the doctor may be the first step to let him/her know you mean business!

    • Private says:

      I too have been dx with both a chrons like disease and an arthritis they think is psoriatic. All happened 3-5 years after implant.

  19. oops “affect millions” as millions …..

  20. mommy of 3 says:

    Can anyone tell me if the mesh is affected at ALL when a complete hysterectomy is done AFTER having surgery to implant mesh in the vagina?

    Just trying to figure out if the mesh is still there or if it gets taken out when a hysterectomy is performed… Thanks for any info to help me better understand what might be going on down there these days… 🙂

  21. Sherry says:

    I had a umbilical repair with mesh after I had my youngest daughter. I have since then had nothing but pain and different medical problems. I’ve been diagnosed with hashimotos and graves disease. None of this until this awful mesh. Do you think this is linked?

  22. Renee says:

    I had the mesh surgery for cystocele and rectogele in 2007 then had severe pain in my pelvic area and all sexual interaction with my husband ceased due to pain and him feeling something sharp. I figured this was my lot in life until it got so bad I couldn’t handle the pain. I went to a urogyno who had tried to examine me but it hurt too bad; he scheduled me for a pelvic exam under sedation. He found mesh erosion and protrusion into my vaginal area as well as my bladder and colon. He took out only what he could see in my vaginal area but had to leave the other alone because he said it may result in me losing my bladder and part of my bowel. I also had another bladder prolapse in 2013, which he fixed and recently found out I have yet another in 2015. I have had a very hard time getting drs to understand the pain I am constantly in. For some reason, they say I should not be experiencing pain…some days my hips hurt so bad it hurts to walk even across the room. I have never been so sick as I have been in the past few years. I am wondering if my thyroid is being effected by the mesh or my heart and lungs. I have had pneumonia several times in the past few years and diagnosed with emphysema. I had a spontanious pnumothorax and then blood clots in both my lungs, severe fatigue and heart issues. I don’t know enough about affects of the mesh and body rejection of the mesh to know what to ask my drs, and if I do go to my doctors, do they know enough about it to be honest with me. I feel so alone with everything going on and stay depressed not only because I am seriously having painful issues but I am also way too young to be denying my husband. I am also constantly constipated and forget trying to control my bladder. I have to wear the large overnight pads for bladder leaks 24/7. I am scared to have another bladder surgery. I just want to know I am not alone in all this…

    • Cheri says:

      You are not alone in this fight. I also live a similar life of pain, no sexually intimacy with my spouse, so many new symptoms, doctors, ongoing tests….living in fear of what is happening and feeling all alone in it.
      The confusion, weakness, brain fogs, etc.
      Very scary, isolating, and feeling like no one can help.

      I really believe God led me here so I could find some answers and people to help me in this fight.
      Good luck and well wishes that you get the help you need.

  23. Julie says:

    I had a mesh sling put in when I had my total hysterectomy in 2002.

    I have been diagnosed at the end of 2014 with Hashimotos disease which is an autoimmune disease. I see on this website it states that Hashimoto’s disease doesn’t have significant symptoms to even list. I have suffered greatly from this autoimmune disease. Fatigue, dizziness and loss of balance, muscle and joint pain, brain fog just to name a few. Here is a website from the Mayo Clinic give you more information about Hashimoto’s disease.

  24. Louise says:

    I have severe Psoriasis, on both feet.I couldn’t walk because I got an infection on my foot.Had to use a wheelchair and had antibiotic intraveniously and nurses came daily at my place to check the antibiotics and put bandages on my feet.And I had another infection again but this time I had antibiotics in pills and again a nurse came to put bandages on my foot.Is psoriasis an autoimmune diseases because it came about 2 years after the Mesh?

    • Louise says:

      Anyone had a Boston Scientific Mesh? When will it be settled so women can rest in peace and have their compensations.Do you think it’s in 2016…? How many years are we gonna wait? We have no news, so we don’t know if the attorneys are fighting for us.I’m CANADIAN and so far we only hear about American women.who are winning their cases…

      • Christine says:

        Just curious, have you signed up anywhere to be part of a class action suit in Canada? If so, can’t you inquire as to the current standing? Do you have any info on class action suits in Canada? I also had a pelvic mesh implant put in in Canada and suffered a year long infection before it was removed by doctors at the Mayo Clinic in the US. The infection had eaten through my cervix and had left no barrier between my insides and the outside world. My doctor said I was lucky to be alive. Many years later, I now have 2 autoimmune diseases, Hashimotos and Primary Biliary Cholangitis.

  25. Ed Price says:

    In 09 I had bilateral hernias repaired with bard 3d max. My life has been in ruins ever since. Chronic inflammation, chronic uti, enlargement prostate, low thyroid. Excessive pain. Never had any issues before this surgery. Had complete physical and labs just prior to surgery, all was NORMAL. Now I am unable to even work.

  26. Phili Dixon says:

    Hey,am I the only one or are there many others out here that has had transvaginal mesh implants & bladder sling surgery but the medical records are not compleat, all evidence of the transvaginal mesh products are missing. My is lieing and saying that he did not even use mesh when he told me he did and exactly what kind he was going to use and why he thought it would help me. My surgeries were all done at Dallas Texas,2007. Medical city,medical center of Plano,Dallas Texas .my Dr is a Huge mesh Pusher and was hired by J&J as a expert witness defending these mesh products yet he denies using mesh of any kind on me.

    Do you know of a law firm that will even talk to me without these records? Any information will help..

  27. Joyce Borrud says:

    Just got back from my Urologist/surgeon. He said over the many years that the surgery for mesh there has been no proof of any connection with auto immune diseases. I was so disappointed. But reading all these comments I wonder. I developed polymyalgia (auto immune) 3 years after my hysterectomy and urethral sling/mesh, and have residual “brain fog” that is miserable. Would appreciate any help.

  28. j-frog says:

    This is long winded, but I had to get all the pieces out here: I had mesh (teflon) installed for a groin hernia at age 22. Since surgery, the area developed hardened, raised, internal scar tissue that has been extremely painful when light pressure is applied (e.g. cat stepping on the scar area 9/10 on the painscale). I have accepted it as a lesser of two evils, until now. I’ve had uveitis and ankylosing spondylitis since age 30. I’m 36 now and have already had cataract surgery due to the recurring eye inflammation and lack of control by steroid use. Starting in 2013 I noticed a correlation with meat consumption and joint inflammation. I confirmed this by eliminating and reintroducing meat several times. I stopped eating meat and have not had any significant joint inflammation since going on a pescetarian diet. But my eyes are still being destroyed by flare ups 3-4/year. No family history of RA. I am HLA-B27 positive, but that’s a loose association at best. My last flare up was so bad that I finally convinced myself to start methotrexate and humira (scary drugs). Only been on them 3-4 months, so too early to tell if these drugs work to control the eye flare ups.

    I’ve looked at possible sources of chronic inflammation as a cause of my RA. I did hardwood flooring age 19-24 and may have had asbestos exposure from sanding 1890’s era fibrous tile underlayment, though lung x- rays and ct scans from ages 27-36 have not shown obvious signs of lung inflammation or scarring. So, now I turn my focus to my hernia repair scarring and mesh as a source of chronic inflammation. I don’t know how to be sure that the mesh and scarring is the cause of my RA, but removing the mesh might be one approach. Does anyone know if there is a viable means to repair hernia without mesh? And I wonder if surgery is even a good choice given there is lots of hardened scar tissue in the area. I fear it might exacerbate the scar tissue buildup if the area is cut up again.

    • Jane Akre says:

      J- You are right, removal can make things worse. Please consult with Bruce Rosenberg, who is hernia mesh injured 954-701-5094. He knows all the docs and protocols…. keep trying him, he is sometimes difficult to reach.

  29. Gina says:

    I have been considering getting my MESH removed. I have had a revision for a cyst in 2013. But my reason for wanting it out is……I WANT MY LIFE BACK!!!! Developed Fibro, Fatigue, Memory is terrible these are a few reasons why and to the point I’m a disabled RN for 5 years now. My concern is do the RISKS outweigh the BENEFITS? I’m a mess and don’t know what to do. My mesh was placed 2006 Bard Pelvisoft for POP and anterior repair for stress incontinence.

    Thx

    • Jane Akre says:

      Risks outweigh the benefit…. that depends on what expert you consult with. In some cases, an inexperienced doc will say yes its too risky, others are more confident about removals…. There is a risk with delicate pelvic surgery… always. But an experienced doc consult is a good way to go in my opinion, I’m not a doctor or lawyer, just talk to a lot of folks and doctor who are doing these surgeries. Depending on where you live in the country they are found in these pages… Search Bar Doctors. Here is a bit of info on the Pelvisoft….

      http://meshmedicaldevicenewsdesk.com/federal-lawsuit-against-c-r-bard-says-mesh-is-not-inert

    • Amanda says:

      Hi Gina this is Amanda. I also had a CR Bard pelvisoft vaginal mesh and February 2006. It’s nice to know that there’s someone else out there that had the pelvisoft mesh. I have so many problems and I feel like my body is so sick my brain

      I would like for us to keep in touch with each other to help each other out. I hope that’s okay with you

  30. Carrie says:

    Hello, thank you for sharing this info. I’ve been trying to find a way to have breast implants removed. Insurance won’t cover it. Of course too sick to work.I’ve asked my PS to send records as he placed some sort of mesh in the reconstruction in 2003. I don’t know what kind of mesh he used. I have so many symptoms I truely think I’m going to die. Ive been falling down. Real unsteady on feet. Last night I fell so hard I hit my head on my end room door. Today I have noticed my arms are extremely week, headache, nausested. Think I better go make sure my brain doesn’t have a bleed. I’m scared 🙁

  31. Carrie says:

    Forgot to check updates by email. Praying for everyone

  32. Beth says:

    Please include the autoimmune disease Psoriatic arthritis.

    Five months after I had a sling implanted I developed symptoms diagnosed as Psoriatic Arthritis by a rheumatologist. Initial symptoms involved weight loss; joint swelling and pain; classic “sausage digits” – red, swollen, enlarged fingers or toes; damage to tendons and ligaments; obvious progressive changes on x-rays. Joint problems are sometimes so severe that I sometimes need to use a wheelchair.

    Psoriatic arthritis (PsA) is an autoimmune disease related to Rheumatoid Arthritis (RA). Both are forms of inflammatory arthritis that result from a person’s immune system attacking their own body.

    Prior to surgery, I’d never had a urinary tract infection. I now have at least one a month. I’m not exaggerating. I’m unable to completely empty my bladder and have difficulty urinating. My pelvic floor is a mess. My once happy sexual life with my husband is a thing of the past. I feel little sexual sensation, and despite a long course of patient physical therapy, I’m not able to have intercourse. My husband is wonderful, understanding, supportive, but this has compromised his life to the extreme, as he’s had to become my caretaker.

    Five years ago, I was an active, happy person. Now I’m hanging in there, but I am in constant pain from the psoriatic arthritis and from the mesh surgery. I am on an antibiotic for a urinary tract infection five to ten days a month. I take an arsenal of expensive drugs. I live with chronic depression. I worry about what will happen to me when I

    I’m very sorry to hear of everyone’s difficulties and wish you all the best.

  33. Brenda Wolf says:

    Not sure if all the crap I am going thru…but since the mesh…I have gone from my blood work showing most likely subclinical HYPOTHYROIDISM to subclinical HYPERTHYROIDISM to full blown HYPERTHYROIDISM with multi nodular goiter, prediabetic along with a few other things..yet they tell me this damn thing that was placed in me is doin just fine…really really not sure how mch more I can take…but as of yet…I am still here

    .go figure

    • Jane Akre says:

      Hi Brenda-

      Do you have a doctor who understands mesh complications? It doesn’t sound like it. If you can, please get with someone who does…..these pages have doctors and there are some regionally people have had a good outcome with…. let us know. thanks.

  34. Jean says:

    Hi, is there anyone working on/researching the mesh issues in the UK? Information all seems to be about the issues in the states. It is all very interesting and does help to have the USA information but I feel I would benefit from info about what’s happening in the UK and what, if anything, the NHS or NICE are advising.

  35. Toni LC says:

    I had a bladder sling put in in Feb 2015. I have been having a lot of digestive problems. Now I have found out that I have a polyp in my bladder could this be due to the bladder sling?

    • Jane Akre says:

      Good question to which there is no easy answer, but polypropylene has been shown to incite all sorts of reactions in the body. Do you have a lawyer and a doctor who is an expert in mesh complications? You probably need both. Let us know where you are janeakre@meshnewsdesk.com

  36. Barbara M says:

    A 7 member Doctor team at st Vincent’s hosp Portland Oregon thought I have lupus, then Rumitoid doctor thinks R.A.
    No one is sure just that I do have auto immune disease , have had two meshes, having 2nd one removed soon if I can quit getting septis long enough to get it out.
    Sincerely Barbara l Melling

    • Jane Akre says:

      Hi Barbara. Do you find the doctors there are acknowledging mesh related injuries? including autoimmune? So many do not. I’m taking out your last name in case you are represented.

  37. Tiffany Young says:

    I had partial histurrectomy and bladder lift in nov 2008 in may of 2009 my face froze up and i had a tumor in my chest about the size of hand. I never had any serious type of medical issues only a nemmic nothing else. Also I had 5 babies and didn’t have any problems. But after receiving the transvaginal mesh 6 months later I’m fighting for my life. Have been told i have aggressive myasthenia Gravis I’m having U.T.Is almost weekly and all this medication is killing me. Can someone please help me. I believe all of this is happening because of the mesh and i want it out need a good doctor. I’m in las vegas

  38. Jay says:

    My wife has had systemic Lupus for the last 13 years. She is on monthly intravenous infusions of Benlysta. Last May 2015 she had a bladder sling put in as well as had her uterus removed. Her recovery took 4 months and she subsequently had to quit her job due to ongoing pain, sickness and fatigue. She was also diagnosed with Linchen Sclerosis and severe depression shortly afterwards. She was informed last week 2/20/16 by her OBGYN that he believes her body rejected the sling and now he’s wanting to send her to Emory in Atlanta to have it removed. Emory is only about 35 minutes from the house so that’s a bonus. We she told me last week that he wanted to have it removed it got me thinking that “maybe she shouldn’t have been a candidate because of her lupus” it only makes sense that if your body already has trouble with attacking itself then why on earth would you introduce a foreign substance? I also recalled that some years back she was told that she wasn’t a candidate for corrective eye surgery because of her lupus. The last year of her life has been a living hell and some days it’s all I can do to keep my head above water. It’s hard taking care of 4 kids and a wife most days. I just want her better that’s all.

    • Jane Akre says:

      I’m so sorry Jay. You make complete sense…. with lupus your body is undergoing some autoimmune issue and many mesh women and men experience autoimmune issues AFTER their mesh implant. Why is it not contraindicated and why did your doctor do that? Please let us know who you are going to at Emory and make sure they have the skills to do a full removal, not a partial chipping away at the polypropylene, which could make her worse. janeakre@meshnewsdesk.com

  39. Audrey says:

    I had TVM implanted in 2003 for POP. In 2005 I was diagnosed with Degenerative Disc Disease in my lower back, between L3 & L4. Saw a Neuro Spine Pain specialist who did nothing but give me spinal injections that did not help, physical therapy, MRI’s , spinal decompression ect . Was this DR’s patient for about 61/2 years- what a waste of my time and money, I finally dumped him. I kept blaming everything on my back problems, even went through surgery ( top of the line surgeon ), now 1 year later- no relief. I recently read stories about women who had same surgery, had severe lower back issues from how mesh was attached to ligaments in lower back , they had surgery to remove whatever attaches mesh to ligaments and obtained instant relief. The story don’t end here. I am positive I have nerve damage, especially in hands and feet. For several years I will lose color in fingers and toes, fingers will go numb, takes stimulation and several minutes for feeling to return. Several years ago I was diagnosed with hypertension and hypothyroid disorder. The Dr isn’t sure yet but I may be diagnosed soon with fibromyalgia ,wondering what’s next .For the past 9-10 years my life has went downhill. Haven’t had a relationship or intimacy for years; sex is too painful, I’m unable to have orgasm, I feel like I’m in someone else’s body, no energy, can barley make it to work every day and wondering if I’ll make it to retirement or die before that time. Had to have corrective surgery for POP about the same time as back surgery. Ive always been considered to be to be very energetic, independent outgoing person; these days I can only hope I make it through another day, week, month or year. Am a one income person; no man wants a woman with this much baggage. Before mesh I worked lots of hours, had tons of energy, and a relationship that was headed toward marriage; today I have pain in most of my body every day, barley enough energy to make it through work and tons of things that I need to get done on my plate. Ive always been a very strong person, but I think I’ve been dealing with depression for years and probably need to seek help with it. I want to say THANK YOU & GOD BLESS , for having this sight to post how I feel , it really helps !!! My heart goes out to the others posting on this sight; most of them have it much worse than me !!! I was 49 yrs old when I had POP surgery for first time.

  40. jill says:

    I’ve have 2 slings put in .neither work. 1st was bard in 2009 & 2nd was pelvilace in 2010. i have psoriasis in my groin area that is severe. I have been in the hospital with mrsa and just recently with a kidney infection that was so bad I was septic.Is psoriasis caused by the bladder slings? I also had fibromyalgia before this which is worse

    • Jane Akre says:

      Hi Jill… please read the comments on the autoimmune registry, the featured story on Page one. Rashes, psoriasis, fibromyalgia are all reported there from people after their mesh implants… correlation? causation?

    • Joyce Bo says:

      In 2008 I had a hysterectomy and bladder mesh. In 2011 I developed sudden onset of polymyalgia (auto -immune disease)… With severe pain in shoulders and hips. It was so painful to get out of a chair; I had to grit my teeth and make myself stand. After a few steps I would be fairly OK. At night I would turn on my side. I would be fine for 1 min. And then it would suddenly feel like I was laying on a sharp knife. Sedimentary rate was 96. Prednisone took care of most of those symptoms, but then I had terrible insomnia which became “brain fog” and feeling of pressure. Sometimes it felt like a 12 on a 1 – 10 “miserable scale”. My Rhumatologist also watches me for possible scleroderma. I made no connection with having the mesh until I read that there could be a correlation. I strongly believe there could be a connection.

  41. Sheila says:

    Thank you Noni for alerting us to the correlation between transvaginal mesh erosion and autoimmune symptoms.

    Is there a central storehouse for these data? It is important that the medical community recognize a correlation cluster.

    Like many other women, I too was implanted with transvaginal mesh, suffered severe complications, revision surgery (mesh too deeply embedded-not all was removed) and recently suffering chronic inflammation, arthritis and lichen sclerosus- all autoimmune responses to tvm erosion. If you are collecting information concerning tvm erosion and autoimmune symptoms, please add mine to your list.
    Gratefully,
    Sheila

  42. Michelle says:

    Has anyone got Lichen sclerosis from bladder mesh?

  43. Genevieve says:

    I hope I don’t bore anyone with info about autoimmune diseases and psoriatic arthritis, but this is information I wish I’d had a five years ago, which could have prevented permanent joint damage, pain and mobility problems for me.

    Five months after I had a transvaginal mesh device implanted for stress incontinence, I began developing symptoms of an autoimmune disease eventually diagnosed as psoriatic arthritis (PSO), which is a type of inflammatory arthritis. It is not wear-and-tear arthritis, which all of us develop as we age, but an autoimmune disease.

    In an autoimmune disease, our immune system, which normally protects us from outside invaders like viruses, goes on hyperalert, and mistakenly attacks our own tissues. The results can be minor or severe. There are many different autoimmune diseases, but it’s not uncommon to have more than one, probably because the same genes that make us vulnerable to triggers for one autoimmune disease are also involved with other autoimmune diseases. Many people with autoimmune diseases are positive for an antigen located on chromosome 6 called HLA-B27, so you hear about it in discussions of autoimmune diseases. We either have this antigen from conception, or we don’t, and it’s detected with a simple blood test. People positive for HLA-B27 may never develop an autoimmune disease. But many people with PSO and Ps (Psoriasis) are HLA-B27 positive and share other particular genes. Unfortunately, these little guys also make us more vulnerable to diseases ranging from eye disorders to chronic intestinal disorders such as Irritable Bowel Syndrome and Crohn’s Disease. So a person with one autoimmune disease is wise to be on the alert for symptoms of others.

    It takes two things to develop psoriatic arthritis, the autoimmune disease that I have: particular genes and a trigger that sets off those genes. Known triggers include infections, skin damage and stress. I have the right combination of genes, but I had gone 60 years without encountering a trigger, which I believe – and my gynecologist believes – was the mesh implant. (“This awful foreign body,” as my gynecologist calls it, “set off a firestorm of an immune response in your body.”)

    So five months after my mesh device was implanted, I began experiencing these symptoms. If you share many of them, it would be smart to see a rheumatologist, to check for PSO, or Rheumatoid Arthritis – a different, but fairly similar autoimmune disease – because early treatment is essential to preventing permanent joint damage. My hair began falling out in clumps. I lost an alarming amount of weight. My fingernails became pitted and developed horizontal black lines. Several small and large joints swelled to alarming size. I had to have my knee joints drained of fluid in order to bend them. Most of my joints were very painful. The cartilage in my rib cage became inflamed. My doctor diagnosed it as costochondroitis, but missed the underying problem. I had constant conjunctivitis – inflammation of my eyes. The joints at the ends of some of my fingers swelled into classic “sausage digits” that you can see on Google. I did not develop psoriasis until recently, as many people with PSO develop it before they have any skin symptoms. I had extreme fatigue.

    Because of the inefficiency of the US medical system, it took two years to get a formal diagnosis of PSO. After that I began treatments with injected biologic drugs – futuristic, extremely expensive, recombinant DNA medications. I don’t want to scare anybody off of these, as I really read the research, and belong to support groups, and they seem to work well and safely for many people. But as one of my post-mesh problems, I have become allergic to a long list of medications with which I never had problems before, probably part of the autoimmune response. So I have had allergic reactions to components of the biologics, too. There are simpler and less expensive treatments that work for many people, but I have had problems with them as well, ranging from asthma-like symptoms to neurological problems such as numbness in my arms and legs and visual disturbances.

    Not until recently did it occur to me that my psoriatic arthritis could have a connection to the mesh device. That this could be involved with the the thousands and thousands of dollars I’ve spent on medication and medical visits for psoriatic arthritis, the PSO exhaustion that has turned me from an active woman to someone who struggles to get out of bed and has to use a wheelchair to enjoy a museum and can no longer pay soccer with my grandkids. That it could be responsible for the permanent damage to joints that make it difficult and painful for me to walk. Wow.

    I thought that the mesh device was only responsible for the inability to totally empty my bladder, so that there is always a reservoir of urine incubating bacteria for the UTIs that I get one after another; the bladder pain, pain with urination and incontinence that it made worse instead of better. I thought it was only responsible for the kidney infections following some of the UTIs. I thought it was only responsible for pain with intercourse and eventual termination of a decades-long tender, satisfying sexual life with my patient, generous, loving husband, because intercourse is just too painful for me. I thought it was only responsible for groin and pelvic floor pain: muscle knots, spasms, nerve pain (which a physical therapist with special certification in pelvic floor health has helped – and I sure recommend a good PT). I thought it was only responsible for my inability to have satisfying orgasms any longer. I don’t know what its relationship to vaginal prolapse might or might not be. I thought it was only responsible for my inability to have a bowel movement normally. My physical therapist has shown me models and explained how extensive the connections of women’s muscles and nerves are down into our thighs, up into our abdomens, forward and backward. I understand more about what is going on, now that I have an intelligent, experienced gynecologist and a well-trained, experienced physical therapist, and hope of getting some of the problems and pain under control. I don’t think I have the courage to go through surgery to get this thing out of me, but I am certainly inspired by the courage of women here. I am appalled by the suffering you have endured and endure, the encouragement and practical help that people give each other. I wish everyone the best, and I hope those who put profit over women’s well-being are called to account.

  44. Cheri Grabbe says:

    I had a hysterectomy and a travaginal mesh implant on Feb. 4th of 2010.
    I suffered years with severe endometriosis and Incontinence. I thought after I had my surgery my life could finally be pain and symptoms free. I prayed that my relationship with my husband could finally become intimate again. Unfortunately, that wasn’t the case for me. Intercourse was very painful so that became out of the question. I was put on a hormone regime but nothing helped.
    Years have passed and over time my long list of symptoms grew.
    I’ve lost 70 pounds Unintentionally, vomitting, nausea, issues with smells, extreme fatigue, bone and joint pain, poor appetite, blurred vision, ringing in my ears, weak legs, falls, disoriented, confusion. The list goes on and on.

    So many doctors, tests, no definative answers or diagnoses. My inconvenience is back, pain in Abdominal area, bloating it’s as if my endometriosis is back which would be impossible because all of my female organs were removed.
    I recently had an MRI, CT Scan, etc.
    My brain scan came back with anomalies and I’m being sent to see a neurologist next week and a gastronologist in Jan.
    I just want answers and to find out what is happening.

    I never linked the mesh implant with all of these symptoms. I had the Boston Scientific device implanted in my body. I never knew that this could possibly be the cause for this nightmare I am living in. I am scared and fearful to what is happening and what the outcome is going to be for me.
    I don’t know how to reach out or who to go for help to gethe answers that deals with the removal of this implant.

    I am very scared and just want my life back.

    My name is Cheri and I am finding comfort realizing I am not alone in this. I’ve seriously thought I was going crazy, the doctors are just Stumped and no one has really helped me. Knowing that there are others out there makes me feel like I am no longer alone in this fight.

    Praying that I can finally get help to get through this. Very scary stuff!

    I am so grateful to have found all of you. Thanks for sharing your journey here.

    • Jan says:

      Cheri,
      I had mesh implant back in 2008 and had a full removal 2 years ago in St. Louis, Dr. Veronikis. Have you considered having the mesh removed? You’ve been through so much, but it might help some to get the toxin out of your body. I recently had an MRI of the brain come back abnormal and trying to see if it’s mesh related.

      • Cheri G says:

        Yes Jan, I have recently been referred to see a urologist about the possibility of removal. I am praying that I can get this toxic device out of my body. I have so many doctors and appointments. It’s difficult keeping up with everything. It has become my full-time job.

  45. Ed Price says:

    Wow, I had bilateral hernias repaired in 09 bard 3d max was used. I have been disabled since. The side effects are life changing, and threatening. Several doctors have stated it looks like I am going through toxic shock. Now they think I have RA. The only thing I found that helps overall is Chelation therapy. But I can’t afford that anymore. God Bless you all

  46. Mel says:

    I am having issues with my hips sublaxing almost to the point of dislocating. Anyone else has this

  47. chasidy f says:

    My name is Chasidy and I have had 4 abdominal surgeries.In 2012 I had a abdominal wall mesh put in. In 2014 it got infected and I was hospitlized for three days. For Almost a month every mourning I would have to get up and be pump full of antibiotics.It was so fun having a pick line in my arm at all times.I was teiffied at night that I would pull it out of my arm.Since then I freeze all the time I’m never warm not even in the summer.I hurt all over.I have been dignosed with fibro and arthritis.But none of this happened until after the mesh got infected.My legs hurt to the bone.They did the day I went to the hospital also.Now The doctor’s dignosed me with leg deiases.

  48. Betty says:

    I have monoclonal gammopathy of undetermined significance which is an immune problem. I fist developed a slowly progressive neuropathy. After seeing a neurosurgeon who had me see a neurologist for the neuropathy and a EMG, was told my back was bad but not the cause of the neuropathy. The neurologist tested me for all the things that could cause neuropathy and came up with MGUS. Even though I told him about the mesh surgery and all the mesh I had in my pelvis, he ignored me and sent me to a hematologist. He did more immune studies and I had him do a bone marrow biopsy to see if I had bone cancer. Thank God it was negative then. I still see a hematologist every six months to monitor my immune system. I didn’t figure it was the mesh until I saw a gynecologist who didn’t implant mesh tell me when he examined me that he felt a wad of mesh in my vagina. At that time I knew it was the mesh causing my problems. I started researching and found a piece Noreen had written when I was googling mesh. Through her I found the mesh site and Dr Veronikis who removed 95% of my mesh, he said the rest was too deep for him to get. I have chronic pain which I now feel is chroinc regional pain syndrome. My pain doctor here in Charlotte has done caudal epidurals which have helped, thank God, but they only last 3 months. I can only have 3 a year and am having another one on Monday. I am a completely changed person, from very active to trying to manage my pain. And the doctors don’t get it. At least the nurses at the pain clinic
    c told me they had treated other mesh patients that have the same symptoms I have. MGUS can become a blood cancer or cause organ failure. Scary, but I don’t want to live in pain forever.

  49. Gail says:

    Hi, this is very interesting I have MS and had Mesh surgery in 2008, straight after the surgery I told the Doc something was wrong he made me wait a year until he went back in, he said he had just pulled the bladder to tight! Well for years I went through pain everytime I had sex it felt like there was something sharp inside, I could pee properly or empty my bowels, kept having bladder and kidney infections,finally in 2014 I went to see another dr and he went in and said the mesh had eroded completely through my vagina and my bladder had dropped again so he said he took it all out. Well again I was in pain for years going to doctors telling them something is wrong! No No everything is fine, well September of last year I finally gave up and went back to see the dr that did my first surgery and he goes oh your bladder is completely in your vagina just about ready to come out of the opening and your bowel has prolapse too. So September 2016 I went in and had a Sacroclpopexy done by Robotic surgery with cadiva tissue used, One week after the surgery I am in so much pain I know something is wrong, you know your own body but No the dr says everything is fine, I still have to cath and have to take stuff to help me go the bathroom, I am so tired of this. The dr doesn’t want to see me until Sept a year after my surgery, yet I still continue to have bladder and kidney infections and pressure all the time and sex what is that! So is there a correlation to mesh and MS I don’t know I am just tired and worn out and tired of getting the run around from the doctors!

    • Jane Akre says:

      I do not understand it when a doctor denies your pain. Things may be fine anatomically but you are not a cadaver! Tell him (nicely) pain more than six weeks after surgery is not “fine” ….

  50. Megan F says:

    For the past few years I have had difficulty working out in yard, then in 2015 it got harder and harder to breathe. After many tests, it was a CT scan that showed COPD, emphysema and scarring in my lungs. I quit smoking 8 years ago but the damage has been done. I got to a point I couldn’t catch my breath and was coughing so hard I thought the top of my head would blow off, nothing was really working to help my condition. Finally i started on COPD herbal formula i purchased from NewLife Herbal Clinic, i read alot of positive reviews from other patients who used the COPD herbal treatment. I used the herbal remedy for 7 weeks, its effects on COPD is amazing, all my symptoms gradually faded away, i breath very more freely now! Visit www(dot)newlifeherbalclinic(dot)com I recommend this COPD herbal formula for all COPD/Emphysema sufferers

    Megan Flores
    New Jersey, USA.

    • Jane Akre says:

      Megan, if you’d like to advertise you can do so on the first page with a small monthly payment… thank you

  51. Rosemarie says:

    I live in Ireland. I had to have a Hernia umbilical [?] after Gallbladder removal it was pretty bad,and ignored by my GP for ages… Hernia placed said mesh.
    ~ I didnot feel well , was told to go home [live alone], just 7hrs afer op.
    Back again with Cellulitis and other staph infections… on IV drips and had to have ultrasound, Showed that there was alot of infection at site of operation, they operated 2nd time [was in my 60s], no family support systems, live alone. ~ was v ill. 2 years ago, since that, I have developed, Hypothyroid, Worsened Arthritis, hands, feet, knarled and legs swollen and knarled. ~ Severe scalp psoriasis and to top it all, Hair loss on already thin hair. Nobody taking it seriously.

    Sometimes I can actually feel the mesh, when I move a certain way, my stomach comes out form under bust and I look pregnant from side since both operations. I am not sure if I had MRSA but only found out I had Cellulitis and staph infections because Nurse taking bloodworks had to take a call and I saw the writing on form.
    I am not a hypochondriac but my health has gone downhill, couldnot understand why. Especially getting psoriasis in my late 60s. I am 66.

  52. carol says:

    I’m confused about the best course of action…I’m sure my autoimmune problems all stem from this hernia mesh i received in ’95…but I have read that if you’re not having pain you shouldn’t have it removed…but how would I ever heal my immune system if it’s not taken out? Thanks

  53. Jane says:

    I had a right side inguinal hernia repair at the end of 2014. Discussed with surgeon at the time how badly my body reacts to foreign bodies being placed in it. Had to have an ankle pin and teeth implants removed due to rejection. He said he was only going to stitch and nothing else. Two weeks later started to get sick. Pain, vomiting, swelling, dizziness, bloating. Then food sensitivities and allergies. My GP was not overly concerned. Pain killers, proton pump inhibitor for two years as I just got more and more sick. Now I can only eat a few mashed vegetables and nothing else. Huge weight loss, chronic pain. A different surgeon examined and said that mesh had definitely been placed and had broken into pieces and migrated. His solution to this was suggesting that he place more mesh over all this painful mess. Been searching for someone to take it out. Most surgeons refuse. Now I have found three possibilities. Seeing the first surgeon tomorrow about the mesh removal. Can’t live in such crippling pain every day like this and wasting away as cannot eat. It is a very long and complicated operation to get the mesh out and may involve more than one operation which I will have to pay for myself. My very deepest sympathies to all suffering mesh injuries. Jane

    • Jane Akre says:

      Jane-

      If you live where I believe ( we spoke) you may have to travel to the US for some mesh removal…. I’m so sorry this doctor did this to you knowing you have a FBR……you have my email…..

  54. Jude says:

    Transvaginal mesh surgery 2011. Symptoms began 2016–multiple bacterial vaginosis episodes, pelvic infection, severe diarrhea for 6 weeks, and now chronic back pain and headaches, especially sex-related headaches. Ruining sex life. Any advice appreciated!

    • Jane Akre says:

      Be treated by a doctor who is familiar with mesh related symptoms. File a personal injury lawsuit if you choose, it is the only language manufacturers speak!

      • Jude A says:

        Symptoms seem to be an inflammatory response. To what–pieces of mesh floating around my body? Truly disturbing. How does one find a trustworthy doctor who is familiar with mesh-related symptoms? Thanks.

    • Jane Akre says:

      There are not that many and you may have to travel to the. Margolis, Raz, Veronikis, Miklos, Lee come to mind… they are in San Francisco bay area, Los Angeles, St. Louis, Atlanta and Seattle. There are others coming in but these docs have the most experience I believe .. Also Blavais (NYC), Rosenzweig (Chicago), Li (Tennessee and NYC), Zimmern ( Dallas)… Any of these folks work for you. I wish there were more – Anyone!

  55. Olivia Carter says:

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