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Autoimmune Registry Continues to Grow with Mesh-Related Complications

Hope Pagano

Hope Pagano

Mesh News Desk, May 23, 2016 ~ The autoimmune registry and alive and there have been so many comments, it is being posted again so you can continue to comment.

The registry is being considered by medical researchers so your imput it vital. If you have any kind of mesh, pelvic, abdominal, hernia and have experienced auto immune issues afterward, please add your comments.   The registry is the brainchild of  Hope Pagano and you may have read her profile (here) on the pages of Mesh Medical Device News Desk.

Hope, the mother of six and wife to Steven, developed Lupus after her implant of an Ethicon/ Johnson & Johnson TVT-Abbrevo sling.

Besides pain and chronic infections, following her May 13, 2011 surgery, Hope developed symptoms which included fever, muscle fatigue, muscle aches, headaches, sensitivity to light and sound and brain fog.  Within eight months she was diagnosed through double stranded DNA (ds-DNA) and an ANA test revealed full blown Lupus.

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

Hope Pagano wants others, who have also developed autoimmune issues following their implant, to add their names to this registry.  Include the symptoms that developed after a mesh implant and how soon after.  You might also include the name and manufacturer of your mesh.

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

 

Thank you for your participation!

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

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

Jane Akre

Editor, Mesh News Desk
janeakre@meshnewsdesk.com

95 Comments

  1. mary ann says:

    So sorry for you Hope hope you can get some relief i have to take pain pills i have had 5 surgeries with lots of compilations we have to suffer in silence i do hope they can help us i dont know how it seems we are screwed for life before its over probably more surgeries wishing you the best.

  2. Mindy says:

    After my 3 implants in 2005, I developed multiple issues I had not had before the implants, including adrenal insufficiency, hypertension, thyroid problems, increased CRP readings for immflamation. There was a large issue with fatigue. I was told by the doctor that treated me that if I had not come in when I did I would have been permanently bound to the bed.

    • AP says:

      Reading all the comments, I realize most of them touched upon what most of us appear to be familiar with; Inflammation & Infections, sad to say in most cases the infections are with us for longer than normal. In my situation, they take us to further complications as mine has been the case. I have been fighting bronchitis and sinusitis for 7 months to date; I began having other unexplained issues. Went through extensive testing only to discover that my body is not producing enough antibodies. now I am facing infusions and most likely, according to my doctor, I will be forced to continue this practice for many years; I am now 76 years old! Infections have taken me down. I to am a victim of Fibromyalgia. I will take Bejay Blue’s advice and purchase some vitamin B12 in hopes that it will be of some help. Thanks

      • John nix says:

        I found B-12 very helpful while recovering from surgery to remove hernia mesh. My PC had me inject it for thirty days and it was much more effective than taken oraly.

        • Andrea L says:

          Hi John Nix,
          I am a 44 year old woman with 2 little children, age 3 and age 5. Who both need their mom back. I have never responded to any of these posts before. This is my first time to reach out. I was wondering if you would share with me which Dr.took your hernia mesh out and what can I expect after surgery? November 2013 mesh was put in at the time of my c-section for a small inguinal hernia that I had developed during pregnancy and I have had trouble ever since. The first 2 years after the mesh was put in I experienced burning and pain at the hernia site. Which I assumed was nerve entrapment and had 2 nerve blocks. This 3rd year of having the hernia mesh in has caused auto immune issues. These symptoms range from skin rashes, blisters, all over inflamation, awful joint and muscle pain. I also started becoming allergic to many things that had never bothered me before. I feel all over body aches almost flu like. I made up all kinds of reasons as to why these things were happening. Over the last 6 months I am definitely sure the auto immune issues are from the mesh. my blood work up shows an extremely high level of C-reactive protein,cardiac. My body has been fighting this mesh for a long time now and I am sure it needs to come out. I was very healthy, happy and fit before the mesh. I can no longer take care of my little ones and my quality of life and pain is unexceptable. I am strong and hopeful that I will get through this. Fortunately I have an amazing husband. I am in disbelief still that this is happening to people especially in a country like the US. The decision to remove it is made, I have no other choice. I was just wondering if anyone genuinely trusted any physicians with this daunting task of removing mesh. I am in Texas but would go anywhere. I am too strong and my family needs me too much to believe I will not get better. Thank you so very much!

          • Jane Akre says:

            Andrea… depending on where you live there are a few hernia mesh removal folks around…. Bruce Rosenberg is very good with doctors… 954-701-5094. Keep trying, he is tough to reach. You may have a lawsuit if its certain types of mesh ie C-Qur by Atrium medical or Physiomesh by Ethicon. I know you would rather have your health back. write me if you want some doc names…janeakre@meshnewsdesk.com

  3. Valerie says:

    Regarding your request for autoimmune complications. I was diagnosed with Hashimitos late last year.

    There is no family history. I believe it is an FBR.

  4. Bejah says:

    This is strange, there were a lot more reports originally. Why has this been severely shortened.

    Bejah

    • Jane Akre says:

      You may recall that the comment box closed after so many comments. So I have that story and just started another so there was room for more comments. Good observation on your part….

      • Bejah Blue says:

        Jane, I did not know that comments closed after a certain number which is sad because people need to comment and we all may miss what may be important to many of us. I am very sad about this since I like to talk so much!

        Bejah

        PS I made the mistake of making my list of symptoms using an EXCEL spreadsheet and there is still much to do. I may have created a monster! I am going to send it to you as a work in progress so please do not scold me.

        Bejah

        • Jane Akre says:

          Never scold. I had to make a second list because this server times out comments,,, unless I haven’t found the right box to check. I keep looking….that is a new development with the new server… but I will work on it.

  5. Disgusted says:

    My immune system shut down.

  6. Tammi says:

    Hi, I’m truly sorry discovering all of us women and many more that i have encountered on other sites who are terminally impacted by “not having to live with leakage and discomfort with science in this day and age.” I too have had numerous infections and various health issues since my 3 sling and a few other surgical issues. In fact my volunteer hospice nurse mom , she has stated numerous times that she believes that I have some sort of an immunity system disorder that has occurred over past year or so for me. I am going to see my primary for a follow up appointment from ER visit with uti, strep and esophogisis infection. I need answers…. Blessings

  7. Bejah Blue says:

    For those who do not follow the Intersistial Cystitis organization or have not been diagnosed please note the following so that you are well informed and note that it may prove valuable to take the survey presented by this org.
    I did not know where to place this so please forgive me…I do not seem to be allowed to leave comments anywhere else which is sort of creepy for those of us who have become a bit paranoid. I am sure you understand.

    ICA is conducting a survey aimed at collecting information for our next issue of ICA Update which will focus on IC and disability. The survey questions cover the topics of the social security disability application process, challenges faced throughout the process, an IC patient’s lifestyle after receiving disability, and accommodations from your employer if you were not able to apply for or were denied disability. All responses will be used anonymously, although you may indicate if you are also willing to be contacted by ICA. Depending on how much you have to share, the survey will take approximately 10 to 30 minutes to complete. This survey is also for people who have IC, but have not applied for disability. We would like to know the steps you have taken to continue being able to work, so your feedback is just as important! To take this survey please go to their website. FYI don’t know about you all but when I have tried, I have NEVER received comments via email (Probably my settings).

    Finally, I have noticed that more and more I wake in the morning not only with troubling head pain but also and more frightening with a large black and blue area in my pelvis just below belly button. I think of the aortic artery there. Going to Cardiologist tomorrow but fear I my die suddenly and worry this is a very bad sign. PLEASE let me know if any of you have this happen. Thanks, Bejah.

  8. Still Standing says:

    Bejah….I’m worried. Do you have someone who checks in with you each day? If not,you need to set this up, just to give you a little peace of mind. It is frightening to not be well and alone. You also need the social contact to help with depression. I hope you will report back after you see the cardiologist. Do you have a Saturday appointment or are you going on Monday? What are you doing for self care? I know, a broken record, but it is a very important question. Really, it is.

    • Bejah Blue says:

      Still, Thanks so much for your concern. I am really OK. I had not filled my scripts for three of my BP medicine and today when I went to pain mgt dr. my BP was 200+/130+!!! I was out of pain med. also. So rushed to hospital pharmacy and filled my scripts inc. pain and now I am fine. We even stopped for Mexican and I had a Margarita. The only care I need is from a good man. Love heals you, makes you younger.

      Blessings, Bejah

  9. Rhonda Tinch says:

    After my implantation of the mesh I developed muscle aches and pains. My hands hurt so bad when stirring batter or trying to peel potatoes or anything. My shoulders inner knees elbows hurt and I have on and off pain throughout my body and my buttocks get really sore after sitting for awhile. This all has gradually gotten worse since the “mesh” was implanted. However I just thought it was due to getting older and never really complained about it. Since my “mesh” partial removal 9/11/2015 about 2 months ago my primary physician believes I have Fibromyalgia. I also have a bad brain fog almost every day all day.

    • Bejah Blue says:

      Rhonda, If you do not take B12 start taking it. You can not take too much. What your body does not need washes through. Don’t be afraid to take 5000 IU a day but start with maybe 500 twice a day. I think Vit. D would be good also, ask others and I believe you do need to pay attention to how much you take a day. Also eat brain food! Play Scrabble, exercize your mind. Take care, B

      • Rhonda says:

        Hello Bejah, thank you for the suggestions I do take 5000 IU a day of Vitamin D but haven’t tried the Vitamin B12 yet so I will try that and your other suggestions for relaxing and exercising the brain!

        • mary says:

          Rhonda i take vitamin B 12 shots i get the prescription from my Doc and give myself the shot it sure makes a different it does give you energy goodness that is what we need after what we being through we will never be the same again but every little thing helps hope it helps you i do wish they could come up with a miracle to help us ..bless

      • DIVA 64 says:

        This is a reply to you ccan’t take to much B12. I was found to be anemic in 2012. And was started on weekly injections for x # weeks then once a month. I have not had a B12 Injection for over a year. I am Experiencing Dangerously high B12 levels I thought test were wrong. Had one repeated.
        I see a Dr. Today and learn more .The high B12 I know is related to autoimmune disease I found on Goggle,although I am expiercing the same symptoms as when it was low. Brain fog,falong accidents. Unregulated body temperatures, etc.
        Be careful about B12 be sure your doctor is monitoring it.God Bless all of our Mesh Ladies and Gentlemen.

  10. Dorothy G says:

    Oh yes Autoimmune Disesse: First diagnosed mixed connected tissue disease. Then I think it was changed to Connective Tissue Disease Then to S Lupus. My doctor said in the begining he didn’t like to write that because it is harder to get insurance. I have to many problems since TVS I can’t even urinate without taking lasix and ,Tamsulosin which is a med.us ally perscribed for men to help blood flow in their manly body part. With the S Lupus check or any of the conditions I mentioned check your insurance foe next year my Co pay jumped from $8.00 on tier 2 in 2015 ; to tier 4 in 2016 to $86.
    a month. The Lupus foundation. Said that in 2014 it looked like their might be a shortage
    But no shortage. Seems like they could have increased production not price it so high that we have to let a bill or bills go to get the medication or go without. However across the border Canada you can get what will last for months for a little over this $84. 86. Co pay. So I guess that is another letter to Washington DC trying to get them to lower the tiers ,just because they decided to put some money into research to try to find a cure. But that should not be done at the expense of the people already living with Lupus. I wonder what Pharmaceutical
    Companies will do to us next.

  11. dan says:

    My name is Dan and I have developed
    IC , prostatitis , low grade fever , lymphoma all after mesh implants.

  12. Connie says:

    da Tinch,
    Your issues ar mine. I also had partial removal 6/3/15. I have had two diagnosis from 2 different reumatalagist one was RA (reumatory arthritis) and the second was fybromyalgist. I had many blood work to rule out other auto immune dieases. My second doctor Spent over 3 hours at my first visit he did all kinds of pressure point test asked me many questions about my pain and issues when all was said and done he said it was fibromyalgia I had surgery approximately 2 months ago on my foot and it ended up getting infected with MRSA and oh my gosh I never have been in so much pain all over my body I was using Aspercreme all over my arms and legs as much as I could and it did not help I I was at the hospital and had morphine Percocet and muscle relaxers and it did not even help at all with my pains from the fibromyalgia he called this a flare up when your body is under stress this was my first experience with a flare up and it was awful worse than the aches and pains of the flu from what you’re saying about your aches and pains they all seem to be similar to mine your doctor is probably right it’s probably fibromyalgia which probably was brought on by the mesh and it’s sad because we both have part of it still in our body mine is the anchors that is in my groin my doctor said he could have it removed but there would be a chance I might be paralyzed and he basically stated I was caught between a rock and a hard place on which way to do this one take it out or leave it in suffer any consequences Hey I’m on Cymbalta now they say it takes About 3 weeks to get in your system I’ve been on it 5 weeks and have not had much help with all my pains. I Guess I’ll have to try a different medine brain fog is terrible and fatigue. AGAIN THE MSDS SHEET STATES THE POLYURETHANE MESH IS NOT To be put in the human body the FDA needs to put a stop to this instead of warnings it’s all because of the greed of money which literally makes me sick I hope to find something to help my fibromyalgia in the future if anyone has any ideas of things to try please let me know I have been taking vitamin D 4000 milligrams a day they say that could help some but so far haven’t been able to tell a difference. I wish you the best of health and may God watch over all of us

    • Rhonda Tinch says:

      Connie thank you for your kind words. I wish all the best. My Naturopath told me to try LDN (Naltrexone). Look it up, I’m going to try it, it does take about 3 months for it to work but the information I saw on it sounds really good. It’s supposed to help with auto-immune diseases, depression and also kills cancer even. May God bless you Connie!

      • Connie says:

        Ronda thanks For that information and may God bless all of us with this awful awful mesh May one day the FDA put a stop to it!

      • Still Standing says:

        I have been taking LDN since October 2015. It helps dramatically with inflammation. It is a compounded rx and is not covered by insurance. My monthly rx is $50.00 it works best when I also follow an anti-inflammatory diet. Jane has an article I wrote about that. I Go to an integrative health MD who prescribed it. However, my urogyn is sold on it, too based on my response to it. Basically, my vagina is rotting away but the LDN has had a positive effect on all the ulcerations. Not gone, but much more controlled.

    • Still Standing says:

      Connie, what an ordeal you have been through. I find it very interesting that so many mesh women have been diagnosed with fibromyalgia. Dont know if it is a direct response to the mesh materials or a catch all diagnosis that doctors use to describe the heightened auto-immune response our bodies mount.

      I tried to take cymbalta, but it did not work well for me. Lots of hand and foot swelling. It can also cause tremendous weight gain, so if it is not working you m ay want to switch.

      I am taking Savella and it works very well for me. Very few side effects which is good because I’m very sensitive to medications. Maybe it could help you. One thing that can help with muscle pain is magnesium. Most adults are deficient and it plays a big role in muscle relaxation. I take Natural Calm plus Calcium every night and it helps a great deal. It also helps with constipation. A nice bonus to say the least.

      Finally, have you tried any mindfulness based interventions to help change how you physiologically react to pain signals? I know it doesnt seem possible for this to work for us, but it really can help. Our brains have great capacity to change how we experience pain. Being mindful cant get rid of pain, but it can change how we respond to it.

      I wish you well in your search for pain relief. It is so hard to figure out each thing that contributes to pain. Each issue must be diagnosed and trested for maximum pain management. It is like playing whack-a-mole. You beat one down then another pops up. Then there is always another that pops up in unexpected places.

      • Connie says:

        Thanks for all of the advice. I too have gained weight since I have been on Cymbalta. I will speak to my doctor about possibly changing to Savella. And yes it is like rolling the dice just hoping you will get some relief. May God watch over us all!

      • Connie says:

        I am seeing my doctor tomorrow and am going to see if he will give me a persription for LDN. I read the website for it after Rhonda and you mentioned it. I really would like to try it and hope to get some relief. If anyone else has information on LDN or results to talk about please post it. If it helps I am sure others would like to hear about it. I contacted the pharmacy in FL called Skips they are a compounding pharmacy that the website lowdosenaltexone.org recommended its pricing was much lower than the $50 you mentioned. They charge 6.95 for shipping. The pharmacist was very nice she said to have my doctor to call them if he had any questions. I hope to see if it helps my fibromyalgia too.

        • Still Standing says:

          Connie, Oh, yea! How much did they quote you? I may need to order mine from them as well. I read an interesting research article today that studied the impact of brain inflammation on depression. Other studies point to inflammation as a generator for AlzheimersEverything I am reading points to inflammation as what drives so many disease processes. I think it is important, especially for us where inflammatory responses are on high speed, to find ways to lower inflammation..that can be diet, prescription and behavior changes ( being able to self regulate our emotions). I believe all are important to use. Please let us know if you can tell a difference with the LDN. I know I have responded well. My integrative health doctor has ordered bloodwork that will show physical evidence of less inflammation. Ill report back from that.

        • Rhonda says:

          Connie, I just wanted to let you know that last night was my second night of taking the LDN and I woke up today pretty much pain free! Now if I could only get rid of this dizzy/foggy feeling in my head I’d be really good. I noticed in the evening my pain started creeping back in. I’m only on 1.5 mg right now so far. By the way someone else in my mesh support group told me to be sure to have a medical alert bracelet or card in my wallet because opiates don’t work at least as well and for as long while on this stuff so it is important that the medical community is aware that we are taking it. Good luck in getting your Dr. to prescribe it. Be sure to be armed with all of the information on I would even take in any comments that myself or anyone else has made stating that it has worked for us to help convince your Dr. that this is a good idea.

          • Still Standing says:

            Not being able to take narcotics while
            taking LDN is true. LDN is a drug that in larger therapeutic doses, (naltraxone) blocks the narcotic . Tye new Comprehensive Addition and Recovery Act actually specified tgat tgose who take opioids have an rx for naltrexone in case they over dose

            Im so thankful that it is helping you. ive used it since October and not long ago I got busy and didnt order a refill so I did without for two week. I could definitely tell acdifference. I take 4mg. What pain did the LDN address the most?

          • Rhonda says:

            Thank you! My shoulder and upper arm pain is mostly gone and all of the aches and pains that randomly shoot throughout my whole body are mostly gone or at least really dulled. Now if I could only get rid of the fogginess/dizzy feeling in my head that would be nice because that makes me not feel well. Thanks again for all of the information. I can’t believe my Naturopathic Dr. didn’t tell me to make sure I had a medical alert card or bracelet or something or that I would need to stop taking it prior to a surgery. These Dr.’s I’m telling you!

          • Connie says:

            Well I got the prescription for LDN. My doctor took some convincing but said he would let me give it a try. I ordered thru Skips pharmacy in FL for 1.5 MG it’s 14.95 a month. And the normal dose of 4.5 MG is 19.95 a month. Shipping is 6.95 I hope to start it this week when it arrives. I will let you know how it helps after some time. Thanks for all advice on LDN and any other advice on fybromyalgia.

          • Rhonda says:

            You are very welcome Connie! I wish you all the best of luck. There is Facebook page that someone told me to join called GOT ENDORPHINS? LDN (Low Dose Naltrexone). I just joined yesterday and it is full of great information. I really recommend that you join as well.

          • Connie says:

            Thanks I am happy to get as much information as I can. I am waiting on my prescription and am praying it will help.

  13. Janis Urban says:

    JNJ GYNECARE TVT Exact SUI 12/15/2011 6 weeks became completely incontinent, 1st yr Lichen Sclerosus Vulva, Lichen of Toenails 2015 Liver Failure-Gallstones, 11/2013 Severe Inflammation abdomen legs feet and ankles continues. Ulcers up and down from esophagus thru the stomach lining, abrasions of the stomach lining. sores. Hardening of the andrenal Gland. Recently Diagnosed with rare disease Porphyria Cutanea Tarda non-hereditary or something that mimics this disease. To much Iron in Blood causing mesh belly swelling.. severe pain on top of pelvic pain and more. I see the Hematologist July 14th update you then.

  14. Michelle E says:

    I had the mesh put in last May 2015 October 2015 i was diagnosed with Lupus no family member has it. I am dealing with alot of pain and fluid retention. I had to stop working due to the Lupus.
    Need to know the next step……

    • Jane Akre says:

      Just curious what you were told by the implanting doctor about all of the complication reports??/ What could he/she have told you? Please add your event to the autoimmune reporting summary here, We have some interest from the scientific community so its very important to share. You can do so anonymously. I’m happy to talk to you about docs, janeakre@meshnewsdesk.com

    • Still Standing says:

      Michelle, an interesting thing about autoimmune disorders is that while you dont have a family history of Lupus, you may have a genetic tendency that was triggered by your mesh. Some genes are turned on and expressed by environmental causes. For some people, the gene is never expressed. For others, possibly you, it is. It is driven by inflammation.

  15. Michelle says:

    She told me that it wasnt for the bladder mesh it was when the mesh was used for other body parts…..

    • Still Standing says:

      Im speechless that just a year ago your physician informed you that your mesh wasnt “mesh”, as in the mesh with complications. I had my in 2008 and can at least find comfort in the fact that we didnt know as much about it then as now. Did she fully go over each part of the informed consent document? And is that ALL she said as her answer to your question about the mesh? If that is all she told you, I would be looking for her head on a platter. Seriously. She had to know and if she didnt, it is her resposibility to know. I would not hesitate to drag her into your lawsuit. I’m so very sorry for your pain. It was toatally unnecessary. That blows me away.
      We need to set up a question site where those who are considering mesh get fully informed about the procedure. Ill ponder that. If you ever need tomtalk, I can listen. Jane has my contact info. Take care

  16. Anna says:

    I had IC within 3 months of the implant. I have had systemic yeast infections, impetigo that I can’t get rid of, chronic fatigue, and very frequent migraines-2 to 4 a week.

    • Jane Akre says:

      Can you get an evaluation by a mesh complication expert…. where are you located?

    • Still Standing says:

      Anna, IC seems to be a frequent post mesh condition. I imagine that it is a solid diagnosis for some, but maybe a diagnosis some doctors make because they just are not aware of the very unique symptoms that mesh women experience. IC is an inflammatory condition, headaches can be caused by inflammation, mesh causes inflammation, they seem to play in the same sandbox. Can I ask what you are doing to treat your IC? Have you been given any dietary instruction, bladder cocktails, medications, physical therapy? There are so many issues that need to be addressed. Each one needs to be treated to experience good management. iC can be flared by a hypertonic pelvic floor, which becomes hypertonic in response to the post mesh pain. Are you having physical therapy to manage this? There are also things you can do at home to help release these tight muscles. Diet changes are also key. If you keep a food log, you will be able to notice what foods cause flares..common flares are acidic foods, sugar ( also the cause of yeast infections), carbonated drinks, coffee, any caffeine, brewed tea, dairy flares me, also. If you have not used Prelief, get some. It eliminates the acid in food and can be used when you eat acidic foods. I recently added D-manosse, a supplement that promotes bladder health. If you do not get relief from these measures, it could be that IC is not the correct diagnosis. It could be more of a pelvic floor disorder made worse by the mesh surgery. Get to know your body and the signals it gives you. Communicate your symptoms clearly to your physician and dont just settle for a diagnosis. Insist on treatment for all your issues. You are entitled to that and that is the only way you will experience consistent relief.

  17. addison says:

    Hi Jane. We hope this is the correct place to post immune and infection complications after implantation of a mesh device(s). Although unsure of everything needed, we will use previous posts as a guide. Thank you for recommending and supporting further studies.

    At the age of 32, I underwent a hysterectomy with placement of POP and incontinence mesh implants. The following are some diagnoses since surgery: chronic infections/45-50 bladder or kidney infections over the past few years (all cultured and treated with antibiotics at home or in the hospital); yeast infections and bacterial vaginosis; fibromyalgia and myofascial pain syndrome; daily headaches and chronic migraines; chronic fatigue and nausea with episodes of vomiting; chronic urinary retention and neurogenic bladder with daily self-catheterizations the past few years; chronic moderate to severe pain in abdomen, pelvis and legs along with areas of numbness and tingling attributed to several damaged nerves and pudendal neuralgia; periods of high blood pressure (typically low), chronic dry and burning eyes

    Removal surgeries were performed after problems with severe pain and movement, bowels and urination, chronic discharge, mesh erosion and exposures. Several pieces remain because they can’t be safely removed, so we aren’t sure what role these play in all of this.

    May God bless all who are suffering as well as those who genuinely care about others. XO

  18. Nancy S says:

    I am losing hope. I have seen 5 surgeons, 3 GI doctors, several doctors and a urologist.
    Since I had bi-lateral inguinal surgery in June of 2015, I have had vaginal infection, inflamed kidney, kidney stone, and my colon has stopped working correctly….and they wanted to remove part of it at one time. I was forced to take a medical leave of absence from work and have not heard if I am eligible for short-term disability, while I am about to loose my insurance. We are barely making the car and house payments.
    If I have sexual intercourse with my husband; I am in pain for 2 days.
    I do not want to leave my family, but I am becoming more of a burden, and all I do is cry.
    Every time I have a new appointment with a different doctor…I am let down, again.
    I am seeing a psychiatrist. I am doing everything I can…but with no results. I have had injections, 3 referals to the Mayo clinic (by 3 differnt doctors)..and they will not see me. I believe it is because the surgery was workmans comp. I know nobody can help…unless you can recommend a doctor in MN.
    Thank you, Nancy

    • Jane Akre says:

      Nancy- I am assuming you have had a hernia mesh implanted, but please clarify, it is unclear. The only doc at Mayo in Rochester I know of who has a clue about mesh is Daniel Elliott who is a urologist.
      http://www.mayoclinic.org/biographies/elliott-daniel-s-m-d/bio-20053374

      The problem with hernia mesh is there are one million implants a year, according to the hernia society, and with one-third approx. of them going wrong, there are few doctors who are willing to step up and say anything, much less treat patients in pain. However, please do not give up, you can be helped. First contact Bruce Rosenberg, 954-701-5094, and email me and I will send it to him as well. janeakre@meshnewsdesk.com Bruce is hernia mesh injured and knows docs and lawyers. Do you have your medical records so you know what mesh you are dealing with? Please obtain them. all of them. Let me know what happens…

    • Bejah Blue says:

      Nancy, My heart goes out to you and I know all of us feel the same. Bruce will do all he can to help you. Never, never lose hope. And I have learned that hope will never abandon you. It is insistent and sacred. Bejah

  19. Connie says:

    Just wanted to give a up date on my experience so far with the use of LDN for fybromyalgia. I started taking it on July 1st 2016. I started with 1.5 MG for 3 days, then went up to 3mg for 5 days. After that I have been taking 4.5mg. On July 12th I have felt better than I can say since I was diagnosed with Fibro. The muscle pain has almost gone away all together. The joint pain not so much. I am on the generic for Celexa, Synthroid for hypothyroidism, and 4000mg of vitamin D3. I am so thankful for finding out about LDN from this website from the ladies who answered my email. It really is helping me and I hope it continues! Not having so much pain I didnt want to get out of the house has been a true blessing

    • Jane Akre says:

      Having a community is awesome!!!!!# thanks so much for sharing

    • mary ba says:

      Connie so glad you found something to help you we need all the information we can get i am having bad constipation i know every thing my insides has fell again after 5 surgeries it looks like i will have to have another operation i dont know what else to do it sure makes you wont to give up..mary

      • Still Standing says:

        Mary ba, I also experienced crippling constipation post mesh, struggled for more than seven years. It is painful. My doctor called it deadly. While that is not literal, it did generate much pain by the extra pressure it puts on your pelvic region. I am relentless in keeping myself un- stopped. Here is what I do on a daily basis…i take 1TBS of benefiber mixed with 1 capful of Miralax, plus 3 tsp of Natural Calm plus Calcium. Natural calm is a magnesium base, which helps relax muscles and helps with constipation. Since starting this routine, I go every day. I also do abdominal massage,which helps as well. On rare occassions that I do get constipated, I add a dulcolax. Early on, my Doctor gave me a recipe for constipation paste, a concoction of figs, senna tea, date, raisins blended up. If you want that recipe, let me know and I will post it. It can be kept in freezer and keeps for a long time. Constipation can impact so much of our body function and it can contribute to prolapse. It is absolutely vital to find a regimine that works. Make it your #1 priority so your next surgery to prop up your parts stands a better chance of succeeding.

        • Jane Akre says:

          That is very good advice. For everyone!! I’ve found if I leave out my much-loved full-fat Greek Yogurt from Trader Joe, that I have fewer GI problems…. anyone else?

          • Still Standing says:

            Is the full fat yogurt high in sugar? That can possibly be the culprit.,suger is not good for gut health. I absolutely love Noosa greek yogurt, but it is high in sugar. Makes a nice before bed snack when I allow a dairy treat for the week. Generally, greek yogurt can have lots of good bacteria for a healthy digestive system. If you cant use dairy yogurt, be sure to take a good probiotic.

          • Jane Akre says:

            No sugar at all! I don’t eat sugar, though I understand carbs turn to sugar. This yogurt has no sugar. If you need something sweet, you might look into stevia… but buy the real thing. It’s a bit more expensive though.

          • Bejah Blue says:

            Still, I adore Noosa as well and also Liberte is fabulous. We can not get away from sugar completely and should we not look instead at what we are eating in a 24 hour period? I love that if I am not feeling well or I am tired I can just grab a yogurt from the refrigerator, no dishes, no cooking and healthy enough.

            I wanted to add that when I went to pain mgt doctor today they told me they have been hit with those Federal guidelines so the Director has decided to have all patients undergo an evaluation and they are asking me to choose between anxiety medication and pain medication. I had to choose the pain medication but they are not reducing my allowance, thank GOD. Bejah

        • mary b says:

          Connie thanks so much i will try anything i am so miserable i have tried every thing and i sure will try this also mary

          • Still Standing says:

            Mary ba, that was my post and yes, I will dig out the constipation paste recipe and post it. Actually, that is a terrible name for it, but, it definitely works wonders. Start asap in conjunction with the miralax, the benefibre and natural calm plus calcium ( order from amazon). If the cost is too much for your budget, load up on some good quality magnesium. Remeber, however, to increase magnesium incrementally. If you dont build up your dosage, you will get lots of bloating. It is uncomfortable, definitely speaking from experience. Here is a little known fact..apples be of their fiber can promote regularity, but did you know that applesauce causes constipation? Go figure….if I can get myself out of the constipation hell, anyone can. I was that bad…my doctor is pretty amazed actually. What are you doing diet wise to help?

          • Jane Akre says:

            I love it when you can teach a doctor a thing or two… Good for you!

        • mary b says:

          yes,connie i would like the recite for the fig and senna mary

          • Still Standing says:

            Ok, Mary, here is the paste recipe, I have renamed it the Unstoppable Unstopper.
            1 lb raisins, 1 lb prunes, 1 lb pitted figs
            4oz senna tea ( Smooth Move, you can get at whole foods, health stores or online)
            1 cup brown sugar
            1 cup lemon juice

            Boil 2 1/2 cups water. Add 4 oz of tea( i just used a box of Smooth Move teabags to keep from having to strain loose tea). Steep for 5 minutes
            Add 2 cups of tea to the fruit and boil for 5 minutes
            Remove from heat, add sugar and lemon juice, cool
            Put all into blender until smooth and store in freezer. It will not freeze completely and you can just spoon out 2tbs each day.

            One more remedy that I used occassionally at first before the Natural Calm that might help–take 2 Tbs Milk of Magnesia every 2 hours until you go. Clear this with your doctor, but it was recommended by my urogyn. I always go after the 3rd dose. Start early in the morning or you may be going all night long. I start my aggressive measures if I have one day without a bowel movement.

            I hope this helps you to get going. I remember those days as very painful. Dont intend to go back there again. Just remember that adding too much fiber to your diet , especially if you normally dont get enough , can cause bloating and gas. Work up to it gradually.

          • Jane Akre says:

            Wow- Thank you! Very good info for everyone!

          • mary ba says:

            OH Connie i will try all of them one at a time untill i get the right one thanks a million i was going to FL.tonight but had to conceal because i had that problem and am so disgusted i just cried it is hard to take i do go on with my life i try real hard to have a little life i am a active person and setting home all time dont get it with me i really thank you it will be a miracle if i can get it right i know i will have to have another surgery have a great day mary

    • Rhonda says:

      Connie, I’m so glad you are doing so well! Keep it up and thanks for the update.

    • Still Standing says:

      Connie..that is wonderful news. LDN is generating much hope for those with chronic pain. Just a reminder for those who missed the earlier posts, LDN blocks the effect of opioids, therefore taking it blocks any impact of opioid pain medication. So, you should transition off the opioids before using the LDN and not take them together.

        • Rhonda says:

          Low Dose Naltrexone Mary Pat. I don’t have time to type everything about it but just type in google Low Dose Naltrexone and you will read all about it. It helps with autoimmune disorders and cancers etc.

        • Still Standing says:

          LDN is a very low dose of naltrexone, which is the drug used to counteract opioid overdose. However, low doses have been found to reduce inflammation, which is how pain is generated. I have been on it since October and it does help. It is not a “pain medication” but it does contribute to lower inflammation. An important consideration: LDN negates the pain relief of opioids, so they should not be used together. If you are taking natcotic pain meds, those will need to be stopped before starting LDN.

  20. Connie says:

    Look up lowdosenaltrexone.org it has been a God sent to me. It helps with inflammation but not so much with joint pain. Skips pharmacy is 24.95 a month 6.95 shipping for the 4.5 MG perscription. I printed out the information from the website and took it to my Rhymataligist and convenient him to let me try it because nothing he persribed was working. I am very thankful for this website that guided me to LDN. There is also a site that you can find a doctor who will persribe it for you. Lowdosenaltrexone.org I pray for all of us with autoimmune diseases that has been caused by this awful mesh.

  21. Marie Pi says:

    I am new to this website. 11/2011 I
    had a TOT type mesh device that
    was inserted behind my pelvic bone
    and into my thigh muscles. 7 month’s later I tested positive (DNA + RNA) for
    Lupus. I had to file for SSDI as I could
    not get out of bed and my entire body filled with pain. To this day I still go
    for weeks unable to function. My
    pelvic pain radiates up my back and
    down my legs to my ankles. I now have a large “hole” in my calf muscle and
    a new one forming near my ankle. My
    days are filled with pain and depression. I feel so alone and I feel like I am not taken seriously and others around me think it’s “in my head”. Lupus does affect my brain function at times.
    Marie

    • Jane Akre says:

      Marie- I’m so sorry…. could you add your experience to the Hope Pagano autoimmune registry on Mesh News Desk page one…. it’s important because researchers will begin looking at it. Do you have a doctor who is helping you? I’m wondering if you have had a full assessment from a mesh expert.. Do you have a law firm? Please let us know…. janeakre@meshnewsdesk.com

  22. John Nix says:

    I had an Ultra Pro hernia mesh implant on 29 August, 2012. In two to three days my skin developed a grey tint, I would break out with a heat rash when around perfume, gas fumes or anything petroleum based. Also, I developed a metallic taste in my mouth. My PC said I had an autoimmune disorder. These symptoms went away within three days of having the mesh surgically removed.

    • Jane Akre says:

      Wow- the medical community is not recognizing mesh, polypropylene as a problem. Maybe this is just a good coincidence, repeated over and over and over… (NOT).

  23. Barbara M says:

    I deal with R.A. Sense having polypropylene put in around my bladder neck and auto immune skin disease
    I would never have agreed to plastic in my body! My commen sense made me even heat stuff always in glass in microwave oven never plastic

  24. AP says:

    I’m so very thankful that I made the decision to read about the “autoimmune issues”, I had briefed it once and did not believe I was unknowingly involved. since the latter part of 2008 I have been experiencing several health related issues so consequently since that point in time I have been a regular patient of my family physician, gastroenterologist, cardiologist, gynecologist, dermatologist, allergist, orthopedic surgeon, and ENT surgeon. not one of my complaints were resolved to this day and I am still keeping appointments . some of the visits are not as regular as they used to be but some are with no cure in sight. I was as clear as I could be while communicating with these physicians and yes I am guilty of accepting the diagnosis they gave me. I was purchasing over the counter pain aids but to no avail; sometimes one of them would give me some relief but only on a temporary basis. At 76 years old that just don’t cut it as I once was a very active lady for my age and still am as pain relief will allow. I didn’t actually realize I was “suffering” from anything until I read this segment and saw some similarities. I’ll just give the condition and not go into detail (I would have to write a book). The following is what the doctors, specialists tell me I am dealing with: Fibromyalgia, B12 deficiency, rheumatoid arthritis, chronic fatigue, inflammation of nerve endings, purpura, UTI’s (first one I ever had and the doctor told me that was quite unusual as most women have had at least 1 or 2 by the age 65? (that sort of opened my eyes), chronic infections, frequent headaches, and extreme vertigo! I’m a fighter and don’t give up easily. I told my husband that I will get cured of these health issues that at times take me to my knees, if not but by the Grace of God. I would be on my knees anyway so I did, I prayed and I have gotten this far. I will put my trust in Him. I am in favor of supporting any further studies, so count me in. We will all show them that they can’t keep us down. I will be active again and the Ethicon group can observe if they see fit to. I have someone much larger then them to keep me going. Thank you Jane for all you do for their victims. Let’s all pray for a win, win situation soon. I haven’t proof read this, too much to enter. God Bless

  25. mary says:

    I am in the same shape as everyone else after 5 surgeries i have lots of issues i am in pain every day i am so sorry for the women its a shame they can’t get there act together and do the right thing for the thousands of women that are suffering we go to doctors after doctors but never the right answer we cant do anything but wait so good luck for all the suffering women and hope out time will come soon..mary

  26. Bejah Blue says:

    I went to OB/GYN website to make an appt. yesterday and there is lots of data there but NOTHING about pelvic mesh. I suggest we all ask our OB/GYN offices to include this data on their websites and even work to legislate a legal requirement to do so. Bejah

  27. mary b says:

    Nancy i have had 5 surgeries and i also have colon problems i sure feel for you i know what you are going through dont give up i am in bad shape but i keep on going i will not stop for if i do i know i will be in trouble they will never pay us enough for what pain we went through some wont make it so bless you mary

  28. Judith Shelton says:

    I had hiatial hernia repair on 9/30/16 . I already had Fibromyalgia so the stress of the surgery brought an attack on. I am healing nicely from the surgery sites but the pain I am having is terrible. I had small hernias all up the center of my chest from problems from another hiatial surgery in Feb. 2016 , and that surgery caused another hernia just above my navel button. Since they put the mesh in on 9/30/16 I am having severe pain , burning sensations and I cannot bend from my waist as it is too painful. It has now been 2 weeks and my pain is getting worse not better. I fear I am not going to get better and I don’t know what to do.

    • Mary Pat says:

      For me, looking back in hindsight, the severe burning was my first symptom that my body was rejecting the mesh. My pelvis felt like it was on fire. It started about 6 weeks after implant. Get it out as soon as possible!

  29. Elly says:

    I was convinced by a consultant back in 2009 to go ahead with two mesh implants. I was never warned of any severe side effects whatsoever. Both implants have been a failure and one of the procedures has caused severe nerve damage. Alongside paralysis, the scar tissue, frequent urinary tract infections, nerve damage and devastating pain is debilitating. I am now experiencing severe left side pain which is beginning to affect walking and basic movement. My life has been altered beyond words. I have been informed that further surgery will leave me with more pain and will not correct the nerve damage or paralysis. The pain medications do not ease my pain levels. The medical profession around me, where I live, have closed rank and refuse to acknowledge responsibility on any level. I am experiencing ongoing, new issues with each month that passes. The life cost of having mesh implants is colossal. None will advise me re. help with my fresh symptoms as for them, money and reputation comes before all else.

    • Jane Akre says:

      It sounds like you need at least two consults from docs who are familiar with what you are going through. Some docs who cannot perform surgeries predict it cannot be done, then voila, it can, by a more experienced doc. if there is any way you can gather more information about your condition and complications, I believe it would serve you well…. at least you would be informed enough to take the next solid step and not wonder what if?

  30. Georgia says:

    I now have fibromyalgia, diabetes, constant pain, I never have a good day.

    • Jane Akre says:

      So sorry Georgia,,,, can you enter your autoimmune issues on the registry UCLA is using to explore these complications…..I know that doesn’t help you individually but it may help get to the bottom line of these complications sooner ….. thank you.

  31. Anonymous says:

    I’ve been dealing with chronic pain now ever since I had my mesh put in and taken out I went to the doctor they said I have fibromyalgia and no one in my family has ever had this and I never had this before Mesh I hurt every single day all over my body they tried to give me all kinds of pills like gabapentin and Lyrica which either knocked me out or make me so depressed I can’t stand it or even function correctly so most days I just try to stay on my fentanyl patch and use a lot of aspirin and anything else I can that will take away the pain I’m alone 12 to 14 hours a day and so I have to be careful what I take in case I have a bad reaction and ever since mesh I’ve learned to read every line of every medication I am a very young woman yet and yet I feel like I’m 90 years old everyday I don’t do much these days because I can’t walk far so because of these greedy people I’ve lost my life basically I do try to find joy in the little things like a good TV program a good book time with family but it still does not replace what I’ve lost it does not take away the daily pain that I have every single hour of the day but I do try to choose not to think about it but something has happened in my body because of tremendous pain and I don’t think it will ever go away people say you never complain I’ve learned after so many years does no good but that doesn’t mean it’s not there that’s the hardest part of this the constant pain not only in the pelvic area and the growing area so bad but all over my body

  32. Retta73 says:

    Was implanted in 2010 have been in chronic pain from interstitial Cystitis, pudendal neuralgia and fibromyalgia. Going in for Interstim hoping it may help. At this point something is better than nothing.

  33. Still Standing says:

    Retta, so,sorry about all,of your complications. Before you agree to interstim, please take a look at patient forums on Interstim. It comes with its own problems, and , yes, even pain. It IS an implant. What other choices has your physician given you. Have you had pelvic floor physical therapy? Have you had bladder cocktails? Have you changed your diet to one that has very little acid? You can find good information about an IC diet on the IC Network site. Has your physician told you about Prelief, which removes acid from your food? It is OTC and I find it very helpful.Im asking these questions because, even if you decidede on the interstim, it is not an 80 or90% relief from pain, so doing other things like I suggested can really help. With IC, tea, coffee, soda should be eliminated. However, the acid in tea comes from the brewing, so you can make sun tea or just brew your tea less than 4 minutes. I have been taking D-manosse to prevent uti and I have not had one for a year. That is significant because I was happy many things of them back to back since the mesh. Pelvic floor physical therapy can help a lot since tight pelvic muscles cause pain, bowel and bladder issues. Each one has to be addressed for you tomhave any acceptable pain management. There are many overlapping conditions in women, iC, and fibromyalgia and hypertonic pelciv floor muscles are three of those. Trying many approaches and using the ones that help you the most can improve your pain with or without the interstin.

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