Endometriosis and FM/CFS Connection Interesting

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Nov 18, 2009.

  1. nah.stacey

    nah.stacey Member

    I found this on another site and thought it most interesting.

    While they were sure I had endo before my hysterectomy, it turned out I didn't even have a cell of endo it doesn't matter now. Scar tissue adhesions are just as bad and just as painful and grow even after they remove everything but now they can't do anything more for me, I'm just all glued together in there, what with all the incredible pain from these and the FM/CFS I'm totally out of the world except for the www.

    But here you go:

    "Women with endometriosis frequently suffer from autoimmune inflammatory diseases, hypothyroidism, fibromyalgia (FM), chronic fatigue syndrome (CFS), allergies and asthma," lead author Ninet Sinaii, from the National Institute of Child Health and Human Development in Bethesda, Maryland, says in a news release. "These findings also suggest a strong association between endometriosis and autoimmune disorders and indicate the need to consider the co-existence of other conditions in women with endometriosis."

    Endometriosis affects women in their reproductive years. The exact prevalence of endometriosis is not known, since many women may have the condition and have no symptoms. Endometriosis is estimated to affect over one million women (estimates range from 3% to 18% of women) in the United States. It is one of the leading causes of pelvic pain and reasons for laparoscopic surgery and hysterectomy in this country.

    In this population-based survey of 3,680 members of the Endometriosis Association, all had surgically diagnosed endometriosis, 90% were of reproductive age, 66% had a positive family history for diagnosed or suspected endometriosis, and 20% had more than one other chronic disease. Nearly one-third of those with coexisting diseases also had been diagnosed with either FM or CFS, and some of these women also had other autoimmune or endocrine disease.

    Compared with expected rates in the general population of U.S. women, women in this survey had increased rates of chronic disease. CFS was more than a hundred times more common (4.60% vs. 0.03%, P<.0001), hypothyroidism seven times more common (9.6% vs. 1.5%, P<.0001), and FM was nearly twice as common (5.9% vs. 3.4%, P<.0001).
  2. victoria

    victoria New Member

    I was dx'd with endo about 12 years after suffering with a year-long bout of mono (maybe CMV instead, tho) &meningitis (mono-related type) and hepatitis A. I know I'd been suffering from it long before I became even ill tho, as my periods could be really bad. So I'm not sure what came first.... was there already "something" there (in me) that predisposed me anyway?

    Endometriosis only became an official 'disease' in 1980, I was dx'd in 1982. I was a member of the Endo Assoc. for a long time. I remember maybe around early 1990s a survey showed a high correlation, at that time on a poll of members it was around 80% overlap with CFIDS/FM.

    They also showed that for symptom relief, the candida diet relieved more symptoms than any medications. I met someone who had been walking with 2 canes because of her pain in her legs (endo has been found very far away from the pelvis); she went on a fairly strict candida diet altho she still ate fruit, and she no longer needed canes and was 90% improved.

    I had another lap in 1994, still considered 'severe' level, but, somehow my organs are mobile still during my annuals. I haven't done anything for it but the candida diet. I did try some bc pills in 1994 as a prophylactic in an effort to slow it down at least, fearing the worst in my future, but my body couldn't tolerate them at all anymore.

    I was also on thyroid med since 1980 until 2005, when I had to go off it (3 grains Armour) slowly but surely due to the positive effects of the Marshall Protocol/MP.

    Now I'm in my late 50s... still no problem... hope it remains that way!

    I've a feeling there's a lot of overlap in how these 'autoimmune' reactions occur... from candida over-running us (we've all taken abx at one time or another, often only takes 1 round to help candida proliferate), to maybe XMRV, etc...

    all the best,

  3. sweetbeatlvr

    sweetbeatlvr New Member

    i was diagnosed w/ Endometriosis in '92 and FM in 2007.

    i've had bouts of joint pain off and on since around the age of 12, then a hysterectomy at the age of 32 kicked all of the symptoms into high gear, leading to the diagnosis of FM.
  4. sweetbeatlvr

    sweetbeatlvr New Member

    i just noticed that you had the hysterectomy because they thought it was the Endo.

    i was diagnosed w/ endo many years ago, but i think the doctor who did my lap. did a really good job of getting it out.

    i had a miscarriage at the beginning of 2007, then developed really bad pain in my lower belly. they did a lap on me, but said there wasn't anything wrong. the pain continued.

    i went to a new doctor who thought that i may have had microscopic endo, and thought w/ my history of Endo, and precancerous lesions that i should have the hysterectomy.

    turns out, there was no Endo, just extensive scarring where my insides were all glued together. (don't know how the other doctor missed all of that? he just basically said i was crazy.)

    i will be so glad when they figure all this stuff out.
  5. victoria

    victoria New Member

    Here's an interesting point of view about our multi-systemic problems... including endo... by a doctor who treats endometriosis:


    I agree overall with it.
  6. SusanEU

    SusanEU New Member

    I also had endometriosis, partial hysterectomy about 15 years ago....interesting.
  7. wendysj

    wendysj New Member

    Hi Stacey,

    I was diagnosed with Endo when I was 16. I had seven laps until my hysterectomy in 2008. I also had Adenamyosis (sp?). I had to have both ovaries removed 6 months later because I did not have any pain relief from the hysterectomy. After that, I felt much better.

    When menopause kicked in, the pain and fatigue got MUCH worse. The RA started presenting symptoms only 2 or 3 months after ovaries were removed.

    I still think I made the right decisions to have all my "girlie" parts removed though because I have NO more pain in my abdomen.

    I had to have my gall bladder removed this year. I already had my appendix removed b/c the Endo was wrapped around it when I was in my teens. I'm darn near out of spare parts. :)

    Thanks for posting this information.... I've been wondering about the relation between Endo and CFS/FM.

  8. nah.stacey

    nah.stacey Member

    I had my appendix out when I was 9.

    In 1998, first Dr. I went to said I had a fibroid tumor, 2nd Dr. in 1999 couldn't figure where they got that one so did nothing until 2000 when the pain was so overwhelming I couldn't even stand up straight. When she did the lap but was sure she would find the endo. NOT!!! only adhesions gluing everything together, my uterus was being glued to my intestines with gravity yanking down the adhesions yanking up OOOOWWWWW. They did a partial hysterectomy and that was well and good for awhile also, but then FM/CFS started to rear it's ugly head in earnest shortly thereafter.

    I think I have had the CFS for quite some time but from my sophomore H.S. year on I was running 90 miles an hour and was always tired thus always sick, just figured I was running to fast for my body to keep up. Then when I got married, we had kids right out of the chute, 5 c-sections in seven years, and I wonder why I'm toast??????

    I had back surgery in 2007 because the back pain was shooting through to my abdomen. At first I was sure it was the adhesions again and went to 4 different Dr's: OBGYN, two surgeons and a specialist on woman's abdominal pain, had two ultrasounds and a CT scan. Every one of them said "We can't see anything else wrong other than we believe it is adhesions and a small 2cm fissure on the right side next to your ovary,we think, oh, and we can't see your ovaries either, your just all kluged together so we hope nothing ever goes wrong because we can't get to it anyway".

    So yeah I am out of spare parts. I'm also just plain, as they say,SOL.

  9. wendysj

    wendysj New Member

    Hi Stacey!

    All glued together? OUCH! That's tough enough to read about but to actually have it happening to you, whew! I hope you're organs will all be nice to you in there!

    You have 5 kids?!?! That's awesome!! You must be one tough cookie to be a mom of 5, wife and be sick too. That's impressive!

    My GYN found "Pelvic Congestion Sydrome" in my abdomen when she was looking for Endo in 2007. I went to an Interventional Radiologist who took an MRI on my abdomen and he said "There's nothing there... I can't help you." I was devistated! My GYN sent him the pictures she took of the engorged veins she saw while inside me. He immediately called me and said he was wrong.

    He told me that he's never seen Pelvic Congestion Syndrome in anyone that never had children. He went on to say that my veins are tiny and so when they are engorged, they look "normal" on an MRI.

    I asked him to remember that next time someone "out of the box" comes to him. Instead of dismissing them, he needs to take an interest and at least call the referring doctor to ask why the patient was sent to him.

    Always remember if you're in pain, then something is wrong. Keep searching until they find it!

  10. munch1958

    munch1958 Member

    Dr Andrew S Cook was doing a study a few years ago to check endometriosis implants for Lyme borreliosis or spirochetes. There was a slide show on the web of a presentation he had done about the study. He did find the same biomarkers of illness in women with Lyme and women with endometriosis so it seems reasonable that the cause or trigger for endo could be borrelia.

    The slides listed things that are present in every illness like elevated tumor necrosis factor, the Inter luekins like IL-1 and IL-6. Stuff like that. The slides for women with Lyme were identical to those of women with known endometriosis.

    I don't know what the outcome of the study was or even if it was completed. Somewhere I saved the link to the slide show but didn't save the whole presentation. If I can find it I'll post it on this thread. I know I posted a link to it in an older thread here about endo but with the way the board was changed the search engine stinks now.

    Juneau Biosciences is developing a simple blood test to determine if a woman has endometriosis. This is an awesome advancement because surgery will not be required to determine if someone has the disease or not. Surgery is the gold standard right now. It would be great not to have them look inside to see if we've got endo.

    I've already sent in my DNA for this study and my medical records. In order to validate the new blood test the FDA requires them to test it on 5,000 women with biopsy proven endometriois. It was a very simple process to send in my DNA sample and my pathology and operative reports. .

  11. wendysj

    wendysj New Member

    Hi Munch1958!

    That is VERY interesting. Thank you so much for posting this...

    I think it's awesome that you sent your medical records to help these poor girls like myself when I was 16 having to have surgery just to diagnose. I had a severe case but would have been SO upset if my mom had to pay for a needless surgery.

    Thanks again
  12. victoria

    victoria New Member

    nothing surprises me at this point, I think there will be more than one 'cause' found as usual.

    A long time ago, The Endo Assoc. found a direct link between dioxin exposure and endometriosis for one. I wouldn't doubt environmental pollutants provide an 'open door' for many other things... to which we've all been exposed to from early childhood -or even prenatally -onwards...

    all the best,

  13. ckm

    ckm New Member

    This article IS interesting. I had endometriosis when I was in my mid twenties and ended up having a hysterectomy at 28. Took them two hours just to separate everything in order to take things out. Then approx. 20 years later I have FM/CFS!! Very Interesting!!!
  14. keke466

    keke466 New Member

    I too was dx with endo in my mid 20's and FM in 98 and I have a slew of other stuff goin on. I never could get pregnant though so don't have any kids. It's interesting that there's so many of us with both. I think I'll read up on it.