Could Fybromyalgia be caused by Mesh

It’s five thirty in the morning and for the past thirty minutes I have tried to go back to sleep.  Sleep will not come when your body is racked with constant pain.  I of course am not the only woman living through endless sleepless, pain filled nights.  It is happening to men and women all over the world, all because of a product commonly called mesh.

Each of us have different symptoms.  Some women will know that mesh is the cause of their pain when the mesh begins to erode through their vagina or up through outside their pelvic area.  Even then some doctors will tell them they don’t know what is wrong with the woman and leave her struggling through endless nights of pain and fear.  A daughter of one such woman recently contacted me to ask for help.  This daughter was so sad and afraid for her mother and did not know what to do.  The lady had been through hell and yet no one had said that the mesh was the cause even though it protruded from her body, and said they didn’t know what it was.  This lady wound up in emergency surgery three months ago and almost died.  The mesh is still in her and yet still the mesh was not blamed.  Why, because doctors only know to put it in and nothing of the consequences and do not care about the latter.  The mesh had been in this woman’s body since 2006 with no symptoms until a couple of months before the emergency surgery.  So, yes!  Those women who are sure bladder sling surgery is/was so wonderful can also have a wake-up call.

My Symptoms.  You may be thinking “I don’t have mesh protruding from my body”.  I don’t either.  For some women other symptoms begin almost immediately after surgery.  Searing, burning pain that cannot be tolerated except by high doses of pain killers.  For others it may happen like mine.  I niggling, annoying pull in my groin that was marred by other problems I had after my surgery.  Nine weeks of a catheter and I could not pee on my own.   Now after eighteen months or no insurance to get help, the pain has increased and walking painful and difficult.  What is your story?  Maybe yours is constant bladder infections that never go away regardless of the antibiotics you take.  You feel down and unhealthy because of them.  What this means is the sling is holding your bladder too tight and you cannot completely empty your bladder.  The result.  Infection after infection and perhaps kidney disease because you can’t get it under control.

I know there must be many, many women who are having some kind of physical problem that has happened slowly over time and they either try to ignore it or it is blamed on something else.  A popular diagnosis when all else fails is Fibromyalgia.  It wasn’t but a few years ago that no-one had heard of this name.  People went to their doctors because they did not feel well and had constant nerve pain or couldn’t get on with their daily lives.  Doctors thought they were hypochondriacs or those who sought constant attention.  It took these people years of frustration to finally get recognition from the medical field that they were not making up stories.  Finally a new name and diagnosis came out to give them satisfaction.  New drugs are on the market to deal with their pain.  However, has anyone yelled out that there has to be a reason for all these people having Fibromyalgia?  Why are we not asking where it has come from?  Could it be the mesh in some men and women’s bodies?   Could it be the endless prescription drugs so willingly given to get patients out of tired doctors offices when they go for constant pain?  Has anyone ever asked if mesh could be the cause of pain to begin with?

I recently found out about a woman who has written extensively about how great mesh is and how she and millions have been helped by this product.  I tried to get her to see there are severe consequences for some people both men and women when this product is place in their bodies.  Even though she read my story, she did not want me to share any more information about other women who are going through this and told me outright that me doing so would not change her mind.  I wasn’t trying to change her mind, just open it.  However, all my words cannot stand up against one word.  Money!  While there are so many people in the medical industry and elsewhere profiting by mesh, then the fight remains more difficult.  However, that does not mean I will stop fighting to change things.  I hope you won’t either.

Our fight starts with small baby steps.  Report your case to the FDA.  Don’t think anyone else will do it for you.  They won’t.  Don’t say the FDA knows about this, so that should be enough.  It isn’t.  Stand up and be counted.  Then stand up and face doctors who keep treating women as lesser citizens.  We are not!  We know our bodies and will refuse to be put down when we say it is the mesh that is causing our pain.  These steps may be small when we are separated but giant when they join together.  I can’t do this alone.

23 Comments

  1. kimi

    When you say burning searing pain – what are you referring to? Where is the pain. I had the surgery in Dec. of last year and have been having HORRIBLE pain from knee to hip on my left leg. It is intermittent. It will hurt a few weeks then quit. I have no remarkable health history and take no meds daily. I am an RN and am wondering if this pain is from positioning in my procedure or from the sling itself. I never had trouble until after the surgery.

    Reply
  2. Margaret

    I had a mesh sling placed in me four years ago. I had pain in my right leg that was intermittent and very painful. i had to begin working part time instead of full time because it was aggravated by sitting. Since work as a writer and graphic designer, sitting is unavoidable. Three weeks ago, I had the sling removed. I have not had any pain in my leg or right hip since that time. I was also diagnosed with arthritis and fibromyalgia this last year and I have not had any symptoms since my surgery, which is odd because I usually have a flare up of both when my body is under stress. It is also very cold and has been raining, big triggers for me, and I have had no pain. I suspect that my body has been rejecting the mesh for the last four years, which has wreaked havoc on my body, as it has literally been attacking itself, trying to rid itself of the foreign matter that was eroding through my vagina. I have had excellent treatment from my Drs. In Loma Linda, CA and I am incredibly grateful for how relatively smooth my surgery and recovery have been. I have only taken 3 pain pills and find that ibruprophen and a small dose of Tylenol are all I need during this recovery process. I believe that the intention to use the mesh to repair me in the first place was not ill intended. I had the mesh removed from the area that my cystocele was repaired, as well as the large piece that held up my bladder. I still have a small piece intact that was used to repair my rectocele. It was beginning to bother me when my bowels moved, but its position was rectified when my prolapse was relifted during this last surgery. My Doctor opted not to remove this little area of mesh at this time, as he determined it was not causing me trouble now, and the removal of it, since it is right next to the colon, could present more pain and healing issues for me. I hope I do not have to have another surgery in the future to remove this remaining piece. It was not possible to remove the arms of the mesh, but at least they are not being pulled on anymore. My bladder is being held up now by my own tissue and stitches. I wish that this procedure had been used before. I was never told that there was an option.

    Reply
    1. lavalinda (Post author)

      Thank you for writing here on my blog. Everything written is an affirmation of what other women are experiencing. The only thing I question is how much was removed from your body. Many doctors do this in the hopes to give the patient relief, but sadly continuous surgeries can be avoided by going to the right doctor with the expertise of full removal. I will send you a private email and give you the details. I truly am happy that at the present time, your mesh symptoms have been relieved.Thank you once again for sharing your story.

      Reply
    2. rose miller

      I had a bladder mesh for a year and a half now. Since the surgery i have trouble emptying my bladder and if i get off the toilet to quickly urine runs done my leg. I have also lost feeling in my bladder i no longer can feel i have to go till i have to run to the bathroom hoping i make it in time. I have also starting having severe pain in my right leg and hip.

      Reply
      1. Caren

        I too have similar symptoms as Rose with severe leg and hip pain after mid-urethal retropubic sling for SI. Several MRIs over last two years with no fault found. Several months ago I go to -Uro-GYN to inquire about mesh being issue-he finds no extrusion or obvious reason for pain so dismisses mesh as cause but said he could do surgery to remove if I wanted! Yeah, right I want to have surgery just for the heck of it! After being shot uo with steriods that did not help, my latest Orthopaedic dr said he thinks my pain is from sling surgery! Now possible diagnosis of fibromygalia. I was healthy before surgery but continual physical decline after. It’s devastating. Another appt with new uro-GYN recently who plans more tests but, since he still uses the polypropylene mesh I am afraid I will not get answers I need to determine if the mesh should be removed. Does anyone know of any imaging tests that can actually show the mesh and arms? The MRIs don’t image the mesh! I so feel it’s the mesh that’s causing severe inflammation in my body and it should be removed but how can one tell when there are no tests to confirm?

        Reply
        1. lavalinda (Post author)

          I can tell you that many women have these symptoms along with so many more. For some, the symptoms leave when it is removed. I suggest you go to the very latest of my blogs and read backwards. I have written about who I will choose to have my mesh removed in October and anything and everything I have learned from other women with mesh complications. You did not give which State you are in but it doesn’t matter. I and the women who helps me feel there is only one doctor we feel can really help women. You can read who. I am not paid by anyone, I have learned what to do and what not to do because of the graciousness of other women who wanted to share with me, their experience. I am very grateful.

          Reply
    3. Lisa

      Can I ask how did they remove the mesh, laproscopically or vaginally?
      I am scheduled in 2 weeks to have mine removed vaginally. Similiar symtoms as yours.
      Thanks.
      Lisa

      Reply
    4. Maria

      Hi Margaret,
      I know you wrote this more than a year ago. I would like to ask how are you doing now. Have you had any more problem with the mesh that was not removed?

      Reply
  3. Kathy

    I have tried to send email to you but it wont go through. I am desperately looking for a doctor in the Houston, Texas area. Can you help? Please email me. Thank you!

    Reply
    1. lavalinda (Post author)

      I will send you a private email.

      Reply
      1. lavalinda (Post author)

        Boy, do I know your symptoms. I have been living with those and more for two years. I will now send you a private email.

        Reply
  4. gina

    i am so glad i have found this site. i had a vaginal mesh bladder sling place in dec of 2009. along with a partial hystorectomy. the hystorectomy was done laproscopic. bladder sling vaginaly. after surgery i was suppose to go home the next day… instead i was in the hospital for 5 days and had 30 stitches inside my vagina from where “`i tore” since surgery i have had almost constant pain in my right hip and down my leg to where i hardly sleep and can barely walk at times. ive had an mri and other test but they cant find anything causing it. in fact they looked at me like i just wanted meds yet i only asked for something for at night so i could sleep and told them id deal with the pain during the day. i wonder also if my other problems could be related. for one since surgery i cant keep my potassium up and for two i pass atleast 4 kidney stones a month and have had to have multiple kidney stone surgeries. at one time i passed 8 kidney stones in 1 week and had 4 kidney stone surgeries in 2 weeks. i find myself at the er alot from the kixney stones to which they are constantly giving me potassium by iv by mouth rather its liquid or the big horse pills… i wonder if this could be related. i never had this problem before the surgery. and its 455am and im awake because of the leg pain and was researching when i came across this page.. i am only 27 yrs old and have a 4 yr old and a 6 yr old. i cant keep going through this. i have also developed high blood pressure and having to take 3 pills a day for that and its still not under control. no im not on a diuretic so thats not the cause of the potassium problems…. i dont know what to do.. i stay depressed and irritated from no sleep and all the pain and problems. im in alabama can somebody anybody help me?

    Reply
    1. lavalinda (Post author)

      I am so terrible sad for you. What disgusting treatment you have had. I will contact you direct and hope I can give you some support and direction. I am always horrified when someone as young as you has had this happen. It makes me ashamed of our medical industry. I have no doubt that your symptoms
      are due to the sling. I know other women like you.

      Reply
  5. Andi G.

    I am crying, literally crying! After a year and a half of being in hell and feeling like I’m crazy – there ARE others!?!? Since my hysterectomy/bladder sling lift my ears ring constantly, my mouth gets so dry I can’t talk. Like “Gina” I have to take pain and potassium pills that didn’t require before. My pain varies, but has been stemming from my left side (groin to knee) with different severity levels; either so bad I can’t get out of bed or dull but constant. I travel internationally for my job, but as time goes on, I am barely able to get dressed and drive to my office because I am so tired and/or in pain. I can’t plan or schedule anything because I don’t how how I’ll feel. I’ve been back to my GYN and Urologist because intercourse sets off a total body pain I can’t even describe. This (of course!) gets me depressed! I’ve been to my Internest, Neurologist, Endocronologist, Cardiologist, Orthopedic specialist and more- with no answer or resolution. I am 43 formally active wife, mother, professional who’s quality of life … What am I trying to say? I have no more quality of life but don’t want to give up!

    How/where do I go if my Urologist says nothing is wrong with me?

    Reply
    1. lavalinda (Post author)

      I don’t want you to give up either but to do something about your situation you have to be prepared to travel and wait to get an appointment to see someone who will tell you outright IT IS THE MESH! Look to the right side of this blog and you will see ‘doctors at UCLA’. Most doctors even if they admit it is the mesh, have no training to remove it and all they do is watch a video then cut a small piece out of the center and leave you to it. Then more complications arise. I know this because it happened to me. After two years and seven months I had FULL mesh removal 6 weeks ago by Dr. Raz. IF you cannot wait to get an appointment with him and then surgery, which could take up to 6 months, there are two really good women surgeons who trained with him.
      Do something. Don’t wait any longer and lose your job. I will send you a private email.

      Reply
  6. Darla

    I had a hyster. and bladder sling in 2008. Since then, I had to get it removed and had to have 2 more surgies. I have been have really bad lower back pain and it goes down my legs. The pain is really bad and it seems to be getting worse everyday. Is there anyone that has had this after. Also where they took my tissue to fix the hole in my bladder is very painful. They took the tissue from the left side of my labia. Which is also causing server pain. I cant seem to get any help for the pain or help fixing the pain. Is this happening to other women or am I just falling apart? I am only 40. And the doctors make me feel like I should not be having any pain, so to them I am not. They just did a scan on me and I go to a doctor tomorrow. But I am so scared that it is not going to show what is going on. Any help will be so appreciated. Because of this we have lost everything

    Reply
    1. lavalinda (Post author)

      I am going to send you a private email. No, you should not be in such pain but my guess is, they removed very little of the mesh and you are being strangled by it. If anyone reads this, please look to the left side and see the doctor I went to at UCLA. I am so sad for you and so many other women who have been treated this way.

      Reply
  7. Chandi

    I had my bladder repair , and bladder sling done and put in on dec 21 2012,almost immediately the searing burn began,the doctors told me to give it time, and I have , but the searing burn continues. When I went to my urologist, he told me he’s done hundreds of these procedures and never had a complaint like mine, and that he doesn’t make mistakes.im now on the last of the pain pills, and he refuses to prescribe any more, said it was probably my fibromyalgia . Which I take nothing for, the urologist is so un kind, saying there’s no way my pain is from the mesh,that he can send me to a pain specialist, or he will remove the mesh, I think I just want it out of my body

    Reply
    1. lavalinda (Post author)

      Chandi you are the second one to leave a comment after having the sling put in in December 2012. Dump this doctor quickly. He is arrogant and will never help you, plus he is a liar because if he has done hundreds of these, there are quite a few women out there who he has dumped when they complained. I have heard it all before. Forget the pain specialist. It needs to come out as soon as possible. It will only get worse, day by day. I just wrote a blog this morning. Read it http://teapapers.com/bladdersling/2013/01/your-mesh-story-mine You will know why I am telling you to dump him. Get an appointment for consultation as quickly as possible. I know it will be a hardship but you have to before it cripples you. These are the doctors you can ttrust. Don’t go back to this Bast………. because he will screw you up further IF he takes any notice. I feel very sorry this has happened to you, but it goes on every day. Check out these doctors. Don’t let anyone make you worse. It is NOT fibromyalgia, it is the SLING! http://teapapers.com/bladdersling/2012/08/so-much-hope-for-mesh-removal-surgery/

      Reply
  8. Chandi

    I was looking into dr zimmern,, and then I read he’s not doing full mesh removals, and don’t know now if I should waste the time and money it will take to go to him, I was hopeful when I read he did his fellowship with dr raz, at ucla, now I just don’t know

    Reply
    1. Angels123

      Don’t waste your time. Go to the doctor who has proven himself to be the best in the country at these mesh removals.

      Reply
  9. lavalinda (Post author)

    Everyone makes choices and I chose not to go to him, even though I live in Texas.

    Reply
  10. melissa

    Hi. I am glad I am not crazy. I have been having pain for 3 weeks stead now. Its hurts right above my hair line area and on both sides but the left side and hip the most. Been to the gi Dr and family Dr and now going to gyo. On Wednesday of this week. Family Dr thinks this is gyos. Stuff. I have had a Hist/and then small couple years later bladder sling. I need relieve. I also have fibro. Have had for about 4 years before I had my sling. Just nice to know others are out there you can relate with.
    Melissa from Tennessee

    Reply

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