Mesh & Lupus

This month I am on a mission to educate women around the world to learn about the serious complications many women suffer once mesh is used inside their bodies. I am doing it because I have spoken to so many women and have read so much about their mesh related complications and I am horrified this still goes on every day in surgeries all around the world. I can’t fight the governments who thinks this is okay. I don’t have money or resources, but I can do one thing that does not cost me anything but my time. I can write.

Mesh has many side effects that no one is addressing and many women do not even know that they have mesh in their bodies which could be causing their illness. So I am going to try to research and tackle some of the serious complications because I cannot stand to see healthy, intelligent women lose the families, careers and their financial status after working hard to get to a good point in their lives. Sadly mesh can do all this and so much more.

So I begin with Lupus. I have long heard women tell me that they have been diagnosed with Lupus after mesh was put into their body, and I also suspect that many more may be diagnosed if they go through the long process of tests and elimination. The problem of course is there is not one specific test to diagnose this disease, which you will read about further down this blog. It is also difficult to find a good doctor to do these tests once you mention the word mesh. More than likely, you will find yourself becoming an instant leper and be told “It’s not the mesh” and most doctors will make you feel so uncomfortable so that you will walk away and never go back. Once you do they can carry on putting mesh into women without any feeling of guilt.

After reading this blog, if you suspect you may be suffering from lupus related symptoms and you had mesh in you recently or many years ago, or don’t know, I beg you please read this blog and find a good doctor who will help you. First though get your records and find out what was done to you when you had any female surgery, hysterectomy, prolapse or even a C-section as I just found out a few days ago from a woman who posted a comment on one of my blogs. She found out that mesh was put in her during this event although she was never told at the time. What circumstance I have no clue but she was very upset to find out it had happened. So just about the time I think I’ve heard it all, I learn something new. So start by finding out if mesh was used in your body at any time, then start getting help.

When I decided to research more about Lupus, I asked Google about this disease and came up with this link and many others, but this one has the most information.  This link is everything to do with Lupus and I was amazed how many issues there are. Read the following excerpt.

First I wondered about the symptoms.

What are the common symptoms of lupus?
Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus, which are the same for females and males, are:

  • Extreme fatigue (tiredness)
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • Swelling (edema) in feet, legs, hands, and/or around eyes
  • Pain in chest on deep breathing (pleurisy)
  • Butterfly-shaped rash across cheeks and nose
  • Sun- or light-sensitivity (photosensitivity)
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • Mouth or nose ulcers

Many of these symptoms occur in other illnesses. In fact, lupus is sometimes called “the great imitator” because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.

Then, one of the questions many mesh injured women ask me is the following. So I found the answer on this site.

Are petroleum products related to lupus?

Dr. Gary Gilkeson is the Associate Dean for Faculty Affairs and Faculty Development at the Medical University of South Carolina and Chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council.
Petroleum products have long been suspect in the development of lupus, and researchers are actively looking at this. In some locations within certain towns, “pockets” of illness are described and attempts to scientifically study these areas are underway. For example, recent studies looked in the Boston suburbs for environmental risks for lupus. The study also examined possible genes involved that may account for a risk for lupus. The findings of the study are not clear; for one reason, the number of participants was small.
Exposure to solvents and mineral oils also are potential risk factors for developing lupus, though, again, none are definitively associated.  Many of these studies are based on giving these compounds, often in high doses, to mice that are prone to getting lupus.  Some of these compounds lead to early development of lupus or more severe disease.  Mineral oils, such as pristane, can induce lupus in mice that are otherwise normal.  However, not all mice exposed to pristane developed lupus, and there are no data as of yet implicating mineral oils in human lupus.  These agents may be involved, but at the present time we cannot say so with certainty.

Is there a test for lupus?
There is no single diagnostic test for systemic lupus. The test you will hear most about is called the ANA test. This is not a specific test for lupus, however. A variety of laboratory tests are used to detect physical changes or conditions in your body that can occur with lupus. Each test result adds more information to the picture your doctor is forming of your illness.

As I read the following, I noted one thing we all deal with when a sling is too tight is that we cannot urinate the way we used to. This can be a serious issue over time. So I was very interested in this question and answer. I know women who have been diagnosed with kidney disease after having a sling in their body for many years. Please take this seriously. I also know many women who have been seriously injured when mesh was used on or near their colon. I have heard so many horror stories of what has happened to them that I find the use of mesh, barbaric and torturous. Now read on.

How does lupus affect the renal (kidney) system?
Lupus is an autoimmune disease that can affect almost any part of your body, most often your joints, skin, kidneys, heart, lungs, blood, or brain. Your two kidneys are part of your renal system, which also includes two ureters, the bladder, and the urethra. As the primary organs of the renal system, your kidneys are responsible for:

Maintaining the correct amount and type of body fluids
Removing waste products and toxic substances
Regulating the hormones (chemical messengers) that help control blood pressure and blood volume

Another thing that has bothered me is that women have sent me photos of large round or oval patches that they broke out with after mesh began to take a toll on their bodies and asked me if I knew other women who have them after mesh was put into their bodies. Sadly I do. . This is the name for this type of lupus.

Cutaneous Lupus Erythematosus

This form of lupus is limited to the skin. Although cutaneous lupus can cause many types of rashes and lesions (sores), the most common—called discoid rash—is raised, scaly and red, but not itchy. Areas of rash appear like disks, or circles.

Because women are diagnosed with many other things EXCEPT mesh complications, they are given many drugs without knowing they too can cause complications. Please whatever drugs you are taking read the most SERIOUS complications that can arise.

What is drug induced lupus?
Drug-induced lupus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but only rarely will any major organs be affected. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (used to treat tuberculosis). Drug-induced lupus is more common in men because they are given these drugs more often; however, not everyone who takes these drugs will develop drug-induced lupus. The lupus-like symptoms usually disappear within six months after these medications are stopped.

More things for you to read.

I am not the only one who has concerns because of the amount of women who have been diagnosed with immune disorders are mesh. Since I began searching for answers four years ago, sites have popped up all over the world, trying to raise awareness of the issues of mesh complications. This site also raises concerns of women being diagnosed with lupus.

Other women have spoken out about these mesh related issues and one politician has spoken out. We need more to do the same.

Some concerned citizens have spoken out about chemical products related to petroleum, used in cosmetics that can cause these same diseases and yet no one speaks about mesh placed inside the body.

Please, please learn as much as you can about this disease if you suspect you have it and tell all your women friends to read this blog and learn what can happen after mesh. Without you passing on this information, thousands more women will be injured and made seriously ill by these products. You should also know that ALL MESH RELATED products, kits or ‘cut to fit’ mesh can cause the same issues. Don’t let any doctor tell you otherwise.

Please, please don’t let them put these products into your body.

26 Comments

  1. a meshed-up nurse

    Thank you, Linda, for a very important article that I’m sure will help some women.

    Reply
  2. Beth Leonard

    I had an hystorictomy done in 2008. I wasn’t aware of bladder sling until after surgery. Sling came loose in 2012. Which had to be repaired. This cause my bladder to have a pocket so I wasn’t able to empty my bladder completely. This caused my infections. As of today I have constant bladder pain. I’ve seen numerous doctors. One urologist said I had bowel problems that was causing my pain. He gave me meds to help me become regular. As of today I’m still in constant pain and I can’t find any answers. I just want to feel normal again. Any suggest would be appreciate on what I should do now.

    Reply
    1. lavalinda

      Beth until it is removed you do not know what damage you will be left with but it needs to come out. You don’t give details of where you live or insurance, but I hope you can make plans to go out to UCLA.

      Reply
    2. lavalinda

      Beth I don’t know where you live or if you have insurance or your financial status but if you can go to UCLA to Dr. Raz or one of his associates. http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/ If you do have insurance but money is a problem for travel read this blog http://teapapers.com/bladdersling/2012/11/mesh-removal-no-money/

      Reply
  3. Patricia Lunnemann

    Would I be able to join your blog / group there is so much information that I would like to read Regards Patricia.

    Reply
    1. lavalinda

      Patricia this is not a support group it is a blog and you can read blog after blog to get all the information you need. You don’t have to join anything and can stay anonymous if you like.

      Reply
  4. Pam

    Has anyone suffered an appendectomy since their mesh implant was administered? Six months after I had my second mesh implanted (which is on the right side of my vagina), I had an appendicitis attack and had to have it removed. Have had many problems since the second implant in 2011, including several UTI’s. I finally got an appointment with Dr. Raz at UCLA and will travel there in August for my first consultation with him. Can’t wait to get both slings removed. Does anyone know how long (or IF) there is a hospital stay involved or is the surgery outpatient? Thanks so much for the blog!

    Reply
    1. lavalinda

      I have never heard of anyone Pam. I am so glad you are going to Dr. Raz. He understands all the symptoms you are dealing with and he will help you greatly.

      Reply
      1. Pam

        Thanks for your reply. Do you know if Dr. Raz removes the mesh as outpatient or is there a hospital stay?

        Reply
        1. lavalinda

          Pam, it all depends on where the mesh is and if you have had other partial removals in the past. I don’t think you have, so it will probably be overnight. He will give you an idea once he has viewed your situation. Mesh is a journey and I have written everything you could possibly need to know on this link. http://teapapers.com/bladdersling/2013/02/mesh-is-a-journey I hope you will post after you have seen him. You will love the man.

          Reply
  5. tatia williams

    I had the mesh sling and after weeks of discomfort the product. Was coming out I rarely had any sex with my husband because of the constant pain and it even cut my husband while trying to have sex I knew something I went to two other doctors before I was referred to a specialist who removed the mesh piece by piece I have had infections and I was a diabetic but not uncontrolled after the mesh implant my diabetes went very high and uncontrolled I have been battling diabetes since then I have also been diagnosed with lupus too and never thout of it being connected I have lost my job due to health and I have lost my health I now live with my parents because I lost my home it will be 3 yrs in June and I have suffered every day not to mention the depression because I’m not able to do anything thank you for letting me tell my story God bless all the others who suffer this same pain.

    Reply
    1. lavalinda

      Tatia because it was removed piece by piece it is possible there is still more or the arms/anchors are messing with your immune system.

      Reply
  6. Mitzi Crane

    I had a bladder mesh in 2008. For the first 12 months I had horrible yeast infection and now suffer from other recurring fungal infections. Does anyone else have these issues?
    Thanks

    Reply
    1. lavalinda

      MItzi yes they do and I hope someone will leave a comment here.

      Reply
  7. Barb

    I had 3 mesh implanted in 2009. Two for vaginal and one for bladder. By the end of 2010 I was having symptoms but didn’t connect them to the mesh until I started educating myself. Actually the mesh contains BisphenolA, which they put in as part of the mesh composition. They knew it caused immune problems. BisphenolA is the PBA that you are to avoid in cans.

    In 2012 I was so sick my doctor referred me to a Rhuematologist and he took precise blood tests that came back and showed I have Fibromyalgia and Lupus. So there is a test to prove it. I sued the mesh company for giving me Lupus and I won a small award. Enough to pay what my insurance company won’t pay to get the mesh out.

    There is also a list on the internet of doctors who are trained to remove the mesh and rebuild the tissue back to almost normal. Go to the internet and search for: Doctors who can remove vaginal mesh by state. There will be a website from facebook that lists the doctors by state. I have made an appointment with Dr. Twiss to have everything removed.

    Reply
    1. Linda (Post author)

      I did write a blog about Dr. Twiss and I will give you that link. Most doctors do NOT remove it all and definitely do not remove the anchors. It is because they are very difficult and can be dangerous to remove. I will give you a link for that blog too.

      http://www.meshangels.com/conversation-with-dr-twiss/

      http://www.meshangels.com/can-mesh-anchors-be-removed/

      Reply
  8. Jeanette

    I had a sacrocolopexy surgery in 2004. Things went seriously wrong in 2005 i required 3 more operations due to complications. The last operation i was told they couldn’t get it all as it had grown into my bowel. I left hospital a week later very ill and then on in began what i can describe as a living nightmare. Infections continually joint pains groin pain terrible headaches. I changed doctors many times, diagnosed with fibromyalgia in 2009 then after that things got worse and in 2011 i was diagnosed with lupus sle. I was told once i took the drugs i would get better but i never did. My life deteriorated even further till mow my life is a slither of the woman i was. I am 59 and feel a 100. I walk with a stick. I won’t be working for much longer i get too sick these days. I’ve been on steroids for 7 years and suffered many broken bones. My skin is thin and i bruise easily. Even people with lupus have long lengths of well times, sadly this is not the case for me, my life continues to decline. Sorry for going on, i only found out 6 weeks ago i am a mesh survivor. Thank you for listening

    Reply
    1. Linda (Post author)

      Jeanette my advice to you would be to go out to UCLA and have all tests to see if it CAN be removed.

      Reply
  9. Barb

    I got Lupus from having three meshes put in my vagina and bladder in 2009. Three months later I starting having Lupus symptoms. I didn’t know what was wrong and my doctor couldn’t help me. She sent me to a rheumatologist and he took blood tests and said I had Lupus. I sued the mesh company and made enough to have it all removed. It was a long, hard couple of months after the removal. Thankfully I can say that I am getting better. I no longer have migraines every day. My vision is so much better. My mouth sores are gone. I don’t have to live on Benadryl to stop my allergic reactions. I feel stronger. I still have some problems but they should fade in time and I am looking forward to the future without Lupus.

    Reply
  10. Christina McGrath

    Hi there,

    My name is Christina McGrath and I’m the head of content at Verywell.com, a health & wellness site that provides simple, expert advice to 20M readers a month.

    Could you help us raise awareness on Lupus by sharing this robust, ultimate guide (reviewed by board-certified physicians):

    https://www.verywellhealth.com/what-is-lupus-2249968

    This may be a good place to share it?
    https://www.meshangels.com/mesh-lupus/
    (though any place you prefer would be much appreciated)

    Thanks very much for your time.

    Warmest Regards,
    Christina McGrath, RD, CDN
    Health Editor, Content – http://www.Verywell.com

    Reply
    1. Linda (Post author)

      Christina, I just went to your site and read this and it is excellent and may help all the women who are suffering after their mesh implant. I certainly will share it tomorrow, 31t March 2019.

      Reply
  11. Joy

    Hi. I had mesh implanted in 2012 & right away, had problems with an infection the size of tennis ball. Took care of that & then 6 months later, I was in severe pain when my husband & I were intimate. It was like the tip of a knife cutting into my skin & he felt it ass well. It had bent into a triangle & was trying to come thru my skin, & I had a revision & some was removed. 6 Months after that, I had another surgery where part was removed & repaired on the opposite side. I then developed several pelvic pain, which I still have. I was sent to specialist in Memphis & they kept me on meds, said I’d developed pelvic neuropathy. I stayed on meds that were supposed to make me comfortable to be able to walk, sit, stand, but nothing helped much, only lying down. I had to continue to work because I’m the only one in my house now. Thanks to mesh, I lost everything…. I kept tell the specialists that I knew it was the mesh causing pain but they didn’t want to do surgery. I tried to get into Vanderbuilt but they wouldn’t take insurance. I literally prayed to die because I was in so much pain. I received a ph call a wk later from my gyno & said there was a new dr in town & that he’d spoken to him about me. (He wasn’t pleased with results of specialists either.) So I went to see the dr the next day & he agreed to do surgery to just get in there & see what the pain was. He & my dr did 3 surgeries in one, one on my bladder, a new concept that didn’t work, they found that the mesh had broken loosed & had wrapped itself around my pelvic bone!! They removed most of the mesh that they could get to. They said I have “very little mesh left”. Ha! I had 2 more surgeries after that. I had 3 surgeries within 4 months in 2017. I felt better, but suddenly last year, I woke up with a rash or something across my face & terrible eye pain. That was in Feb 2018. I’m still trying to find out what it is. I also contracted MRSA in the mean time…in my eye! Finally, someone is testing for Lupus & other things. I’m so exhausted. I’ve known all along that it’s all related to the mesh…I just need a dr to connect the dots. I cannot afford to go out of my network & I’m only working part time which is not paying my bills. I have no family to live with etc. It’s just me. Some days are good, some days are filled with so much anxiety & pain that I cannot think. My body is exhausted, my mind is exhausted & the pain, along with a rash on my face with my eye, & terrible pain & headaches with that when it flares up, along with other things. I’ve also become highly allergic to simple things that I’ve never been allergic to..one being vanilla! I hope to find some answers soon, even if it’s bad, I just want to know. & yes, I know it’s all related to mesh…I just can’t prove it. I don’t have the resources to do that. I do have an individual law suit & it’s ongoing for almost 4 yrs & got a call from attorney last week saying case was dismissed. He found out it was due to a glitch in the court with email address being incorrect. It’s just cray. Hopefully it will be refiled & move forward. It has no other way to move except forward. I look to the day I’m pain free, but for now I just want results…Lupus or not, etc…Thank you for what you continue to do!~~~ Joy

    Reply
    1. Linda (Post author)

      Joy, like so many, your story is horrific and I am sad you have no family to help you. I do appreciate you telling your story, because so many women read this blog.
      I am shocked at your lawsuit and I believe you should complain to your State board and find a lawyer who may sue yours. Here is my question for you. Were you ever given a copy of your lawsuit when it was filed? It sounds to me like your lawyer I negligent. If this is the case and I am pretty sure it is, due to a limp reason he gave you, don’t wait too long before you contact a lawyer again. Learn more by reading this. It won’t be easy, but I believe because you have had so many surgeries, you were screwed by your so called lawyer. https://www.nolo.com/legal-encyclopedia/suing-lawyer-malpractice-30192.html

      Reply
  12. Joy

    Thanks Linda. I did read the article & thanks for the email. My attorney states that the court had the wrong email & that he didn’t keep up with things like he should have because his dad was dying & passed away in Dec. The court had be emailing his assistant & she left a while back. I was working with her as well. He admitted it was his fault. However, at this time, I do not want to get another attorney because he’s the 3rd one I’ve had. The first one let a yr go by with me contacting, asking questions, etc & no response from him. The was outed at the firm & someone else took over my case & he left the firm & I chose to stay with the firm & go with a partner in the firm. He’s been really good about keeping me updated the last 2 yrs, calling me, returning my calls, sending letters, getting info from drs every time I go, & even meeting with me when I live 2 hours away from their office. He’s been the best one so far. I do understand things happen & he has a life too. I also went with this firm & stayed especially for him because my gf recommended him because he won her case & it was a large payout from what I understand from her, because she’s not at liberty to say. She lives in the same city, Nashville as the firm. She’s kind of guiding me too & telling me what to expect too, thank goodness. I told her about this when he contacted me. She told me what would then happen, which was the same thing he told me. I do believe that he’s trustworthy & I say that knowing I don’t trust anyone, especially doctors. I’m just tired & don’t know what else I can do. I know the case has to move forward, it has no other way to go!! I also need some sort of results from all this other mess I’m going thru that I KNOW is mesh related, however I need a dr to connect the dots. That’s the hardest part. I know there are women out there much worse, but we each have our horror stories & our own journey. I appreciate any article, any help, etc that is posted from you & anyone else that has been or is going down this road. Thanks for letting me share just part of my story.

    Reply
  13. Carissa

    Omg thank you for this article! I had a hysterectomy, vaginal vault suspension, prolapse repair on four sides and unfortunately a transvaginal mesh sling for bladder prolapse! Since I woke up from surgery I can’t urinate I hav me to self cath, the surgeon and the mesh caused nerve damage in my left leg groin back and buttocks. I am one of those women that it destroyed my life I worked full time as a medical assistant to a pain management doctor and was going to college to become a registered nurse as well as a mother of 5.. all of that came to a screeching halt following my surgery 😭 I’ve always been an independent women with dreams and goals and was always improving mine and my children’s lives so this has been devastating to me. I have become a medical mystery with a host of symptoms and no doctor wants to touch me and they keep telling me it’s conversion disorder which is a psychiatric condition that causes you to manifest stress in physical symptoms and if I just eliminate the stress in my life I’ll be normal again and my leg will magically not have nerve damage, my back won’t hurt, my hips from the bone anchors I had no idea we’re being put in won’t hurt, my vagina won’t hurt, I’ll be able to pee without a catheter, I won’t have infection after infection, I won’t be sick all the time, all of these random rashes that keep appearing in random places in my body will go away, I won’t be so tired so the time either… like are you kidding me this is insulting I work IN medical I was going to school for nursing, then going to be a nurse practitioner I know this is a bullshit diagnosis. So then I get fibromyalgia diagnosis, and finally convinced my Urogynecologist that I have interstitial cystitis which is terrible and so very painful. I wish I could go back and never have had this surgery since waking up from it I’ve not been the same person! My marriage is rocky due to sex being so painful and who wants to do something that causes excruciating pain? And I can’t work I’ve tried so many times and I make it a couple months and wind up so bad off, like right now my legs went completely numb and have been for almost 2 weeks and I can’t work when I can’t walk! I have a mesh lawsuit you know they offered me $8,000 minus their attorney fees the settlement masters fees and my attorneys fees I’m like are you kidding me that’s not even lost wages let alone pain and suffering and how am I supposed to take care of my children with that? Sorry just venting but you hit the nail on the head with this article mesh ruins people and lives! Oh and I’ve had all the symptoms of lupus and even saw Rheumstology and they did and ANA and said it was negative and dismissed me and that test if You research it is wrong more than half the time!

    Reply
    1. Linda (Post author)

      Carissa, it is like reading a book over and over again, with the same theme, except a different set of characters. I am sorry I didn’t read this sooner, but I could not get on to the Internet, due to a problem in my area.
      All I can tell you is that I am so sorry you are dealing with all this, and please believe you are not crazy, do not have any disorder of the mind and any doctor who tells you this, should be ashamed. Hugs.

      Reply

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