Thursday, November 14, 2019
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Fibromyalgia and the co-morbid Endometriosis

It’s true that when you get a serious illness, co-morbid illnesses always follow.

Now I also have to fight like a girl for Endometriosis.  I didn’t see it coming, as I had seen so many doctors for my pelvic pain and had been dismissed (probably for being a girl who presents with a large number of illnesses…).  Finally, I went to a surgeon, who is the only doctor who deals with sexual problems on the side of his main practice in the area.  I went in expecting sexual therapy advice, and instead, he listened to me and immediately scheduled me for surgery.

I rarely listen to my answering machine messages, so I found out on a Wednesday that my surgery was going to be Friday morning.  It was probably better like that, as I would have had too much time to think about the situation otherwise.  I came out of surgery in extreme pain and once the doctor came around he told me that there was indeed a reasonably serious case of endometriosis causing my pelvic pain.  I normally wouldn’t be happy to hear such a diagnosis, but I was because a) it made the surgery and pain worthwhile and b) showed that the pains I feel in my body are indeed accurate and real.

Currently, it’s hard to get doctors to take you seriously for having Fibromyalgia, as there is just not enough solid evidence out there to support what we all feel and know to be true.  I do not doubt for a second that my body suffers from Fibromyalgia and MECFS.  All the signs and symptoms are there and match up with everyone else I know who has been given the same diagnosis.

Endometriosis is another tricky illness to fight, and I hope I don’t have to have many surgeries to keep it under control.  Either way, this discovery has landed me more credit in terms of listening to my body (both for myself and for my physicians).

These illnesses do indeed flock together, and if you are suffering from Fibromyalgia and have severe pelvic pain – make sure someone investigates.  Knowledge is power, even in the case of chronic illness.

I hope you are all keeping up the fight!

Much love to you all,

Annie

The informational content of this article is intended to convey general educational
information and should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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28 comments

  1. Teresa Goldinger

    I have fibromyalgia and I had endometriosis and the doctors refused to listen to me and said it was all in my head. I ended up with cervical cancer and had to have a hysterectomy at the age of 26 bc they ignored me. I don’t know how many doctors I went to before I found one that actually believed me and done testing. I’m glad they finally listened to you!

  2. I had endometriosis and had a complete hysterectomy at 22, at 52 I was diagnosed with Breast Cancer and had a radical mastectomy, then I was diagnosed with Fibro, rheumatoid and osteoarthritis and osteoporosis.

  3. donnielle sitzman

    i was wondering since i have fibermyalgia will i get endometrosia?

  4. donnielle sitzman

    i also have pcos? with both of those does that mean i would most likely get entrometreoisis?\

  5. Linda Holshouser

    I also had endometriosis, until I had a hysterectomy at the age of 35. Seems like a lot of people with autoimmune disorders or FM also have endometriosis. There are many more treatments now than when I had it. Since having periods makes it worse, the first line of therapy should be a birth control pill that stops periods for several months at a time. Since it can cause sterility, if you want children you should have them now. If there comes a time when a doctor suggests a hysterectomy, get a second opinion, as it can be delayed for yrs with the right therapy.

    I had psoriatic arthritis when I was diagnosed with endometriosis, and i was diagnosed with FM a few months after the hysterectomy, I believe I may have had it already but the surgery caused a flare. Be mindful that surgery will almost always cause a flare of FM, so a decision to have a hysterextomy should be put off as long as possible. You may be able to avoid it altogether as more therapies are coming out. Good luck.

    One tip, altho you’ve probably figure this out by now – your periods are going to become very unpredictable unless you take hormones to stop them altogether, and they may be very heavy unexpectedly, so always carry something with you in case you get your period out of the blue.

  6. I was diagnosed with fibromyalgia a year ago in Decemeber and just recently diagnosed with breast cancer this past Novemeber, does anyone find that all the meds are just too much of a combination to take together? I seem to be having problems with this.

    • Marcia,

      I am on so many meds I can’t remember their names… I am so fatigued I feel like I am drunk on most days. There are some days I am lucky to get out of bed and when I do I am just waiting to get back in it. When I don’t take my meds I am in constant pain from bloating, gas, and of course cramping from spasms. I call it septic backup where I feel like something is coming out from both ends and nothing happens out of either. I hate the meds… but if I don’t take them I feel toxic.

      Denise

  7. Found out that I had endometriosis at the age 26, they did depo shots to stop my cycle and end the pain. I had a hysterectomy at the age of 30. Was only suppose to have a partial hysterectomy, but when the doctor went in she found out that i had fibroids, all of this was putting me in severe pain. the past 12 years i was told that I had lupus, but i was in denial, in 2000 i started experiencing lower right groin pain, never found out what it was coming from it just disappeared. In 2000 was told again that i had lupus, fibromyalgia, and MCTD still i was in denial even with all the symptoms. I couldn’t take the pain anymore so I went to a rheumy in feb of this year and was once again told I had Lupus. I have finally accepted the disease and have started to take the medications as prescribed and needed.

  8. I will turn 50 this year, had endotriosis since I was 14yrs old. The famous Robert Kistner, MD was my GYN for years. Dr. Kistner for those who have never heard of him, he dicovered Depo provera and used it in third world countries for birth control. My journey with hin started in Boston MA, Brigham’s and Women Hospital. He operated over twenty different times in 14 yrs, in the end it grew outside the uterus and rapped itself around the intestines. I had a full hysterectomy at 30 years old. I had many different health ailments, it took my niece to recieve a dianoses of Lupus 6yrs ago, for me to finally ask if I could possibly have also. The DR. at the time said to me” I am sure that they have checked your ANA level in the past.” THEY NEVER DID… I was in my mid forties when my oncologist told that I also had Lupud and he believe Fibromyalgia too. I see some of the best in the world here in Boston, but you must advocate and practice right style living with your health!!! WARNING: ANYONE WHO IS ASKED TO TRY LUPRON PLEASE BE VERY CAREFUL i HAD A REACTION THAT PUT ME ON DISABILITY PLUS LOCKED UP ON A PSY. WARD. VERY DANGEROUS DRUG PLEASE BE CAREFUL!!!! Good Luck to you all.

  9. my mom has fibromyalgia and that lyrica that they come out with done wonders for her but she was allergic to it……anyone have any suggestions on what else might help her…she has terrible pain from the fibro constantly and cant get any relief

    • Have her check into gabapentin it’s what my doctor has started me on. I’ve read some good results as for myself I’m just starting to see some benefits. But as I’ve said have only been on for a short time they build you up slowly to a full dose.

    • I took Lyrica first also, I now have Cymbalta and it works pretty well. Your body seems to adjust to anything after awhile and the doc just wants to increase dosage. If they only knew the pain involved I think they would give this disease as much attention as others. I too noticed as others stated that once the onset of one auto-immune disease, many more crop up over the years. It sometimes takes all within you not to crack, but we have no choice but to go on and hope the future will be brighter for others as more research brings about understanding.

    • Lyrica started helping for me w in a few days of starting and I started at lowest dose. But eventually had to up it and within 3 months I gained 30 pounds and made me horrifically constipated to where now I am looking at having my colon removed at 37. I ended up on the highest dose and it quit working all together within the yr

    • Savella is FDA approved for fibro pain. Maybe it will help my endo too. But it takes 6 weeks to see results 🙁

  10. Warning to all asked to take Lupron, its a bad drug & I wouldnt recommend to anyone! It has eating my teeth beyond repair & my pain hasnt been soo sever. Idk 1 person with good results from it & highly recommend saying NO. Endometrosis absolutely hits more of us with immune disorders, y no one knows but wish they did. 17yrs of fighting & it don’t feel like they know anymore today then when I started. A lifetime of pain,when 99% of people don’t believe or understand. Good luck to all my fellow fight like a girl,endo’s & everyone else fighting their own battles!

    • I actually took Lupron shots for 6 months & they helped me & the only side effects I had was I gained a few pounds

    • I tried lupron twice and both times had no relief what so ever and even had worse pain with add back therapy. I also suffer from having really bad dental problems now too(all my teeth are falling apart) and have heard that from others too. I have heard like you two ladies above that lupron helped but i have also had friends who had their lives destroyed by it. Its so maddening that there are so many treatments yet no cure and for some of us the treatments dont help or make it worse for us.

    • I have been on Lupron for 5 months, while it took care of the pain then ended up having to up the dose to keep it working. In the mean time I felt like I was losing my mind! I was irritable, tired, moody, and I had weight gain. And I work out 5 days a week and couldn’t keep the weight off. I have a hysterectomy and left my ovaries behind. Now they are looking at removing them as well. It isn’t worth the problems that that drug has caused me!

    • I also had lupron for 4 months and add back. Just gained a little. But they say if there is truly endo in there it will decrease the pain alot. Otherwise they look at other issues that can be going on

      • I’m not trying to be rude but any doctor that says that is lying. I had stage 4 endometriosis and was put on lupron for a year. All it did was make me sicker. It did not help at all with the pain and surgery later that year proved I had severe endo, andnthat the lupron did nothing. What is wrote is completely incorrect. My new obgyn is doing my fifth surgery on June 9 to hopefully get rid of the scar tissue and more endo that has developed since the last surgery. He specifically said that 4 tines out 10 women put on lupron will either have worse pain or remain the same with endometriosis.

  11. I was diagnosed with peripheral neuropathy then was told I had Fibromyalgia. I also tested positive for Lupus but the doctor wouldn’t say I definately had Lupus. I believe if you get one of these diseases you are liable to get another one because your immune system is compromised
    .

  12. I had endometriosis and now have fibromyalgia the doctors refused to listen to me and said it was all in my head. After 10 years in pain I had 6 surgeries before my Hysterectomy in 2011. I’m still having issues with fibromyalgia but I can’t take the meds due to my pacemaker. I’m 38 years old and I have had 12 surgeries in 10 years. I’m scheduling my 13 surgery this Friday to have my artery unblocked. I have heart, stomach, intestines and back problems. Along with battling fibromyalgia. I just wish to have a day where i’m not in so much pain. I’m so glad you found a doctor that will help you. It took me alot of crying and screaming at doctors for someone to help but don’t ever give up on yourself. You know what you need. So fight like a Girl and make them listen!!!

  13. Dee Dee Hunter

    18 years and 16 surgeries later I had my last surgery yesterday. I had my hysterectomy when I was 27. It was a two part surgery because removing my uterus should have done the trick. Nope not for me. Lupron..again didn’t work for me. My biggest battle I fight is telling my doctor I’m having active Endo pain. Of course I was told “according to the books it’s impossible” well her books are wrong. It attaches to my bladder, vagina and colon. Always removed and tested positive for Endo. It’s a horrible fight that I don’t back down from. I’m not an addict, I’m not pulling this pain out of nowhere. I’ve managed to raise 2 children and graduate college with a Psych degree just walking the stage last week. I hope and pray every surgery is the last. I sooo wanted to wear a fight like a girl Endo hoodie to graduation to show you have to fight and can be victorious instead of a victim. Is it easy?? Heck no it’s not easy but what are my options? Giving up?? Um nooo I’m not a quitter I’m a fighter. Just hope and pray there will some day be a cure other than treatments that cost your life savings that don’t work and make you hurt even worse. But my big wish would be increased knowledge with our health care professionals My town knows so little that I drove four hours away yesterday for surgery and came home to my family already. My doctor here was not having it that I have Endo. So to increase her knowledge I will take her the op report and pictures so she won’t treat someone else like an addict that has a serious disease. I won’t give up ever and I will always fight like a girl for Endometriosis!!! God bless you all and your families that are stricken with this madness!!!

  14. I was diagnosed with endometriosis before the doctors diagnosed me with ME, and now the endometriosis seems to have been pushed to one side, whilst I am being referred for CFS.

  15. From August 1990 to Octocber 1990 I worked 4 half days because I was in so much pain. On Oct 5, 1990 my doctor did a total hysterecomy because of endometriosis which had attached itself to my other organs and was causing all my pain, I found out in 1998 that I have fibromyalagia. I was told that a lot of the illness I had and still have was caused by my fibromyalgia even the headache I had for 2 and a half years. For years I was told it was all in my head. I now have a good doctor who works with me and my meds.

  16. Savella is FDA approved for fibro pain. And supposed to help with pain all around. So it might help with endo/ IC pain. I have both and just started taking it. We will see 🙂

  17. Thank you for sharing your story. i am waiting for surgery to be aproved for a hysterecomy to remove scar tissue after four csections an for endometrosis, which runs in my family . The new Dr i seen says i don’t really need surgery because pelvic pain is comon with fibro! An just goin on higher pain meds!! Lol

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