does anyone else have endometriosis????

Discussion in 'Fibromyalgia Main Forum' started by northlights, May 26, 2005.

  1. northlights

    northlights New Member

    I was diagnosed with stage IV endo about 2 years ago. I'd already been in constant pain for over a year. It was assumed that all the pain in my back, legs abdomen, etc was all due to the endo.

    Turns out that after a hysterectomy AND excision of endo and adhesions, I am no better off than I was before...except that I no longer have periods!!!!

    I have a theory that my fibro was caused by the constant pain of endo. It seems that my nervous system went totally haywire with being in such pain. Now it doesn't know how to shut off the pain messages constantly bombarding my brain.

    Anyone else with similar experiences?
  2. victoria

    victoria New Member

    I was dx'd 23 years ago and again 10 years ago with severe endo, last time had laser surgery.

    I found that adhering strictly to a candida diet was very important as I'd started getting "rolling-on-the-floor" cramps at any old time before I was first dx'd. When I challenged my body with eating cheese, yeasted bread and wine (at different times) after 4 months of the diet, I found the pain returning within a couple of hours or less - had nothing to do with my periods.

    The Endometriosis Association (a good group to join) has found several things, from what I remember of reading their newsletters:
    ~endo is linked to dioxin.

    ~there are some women who were quite elderly when they were first dx'd because of pain.

    ~There is a certain percentage like you where hysterectomy did not work. (I wouldn't have one as I felt the diet controlled symptoms and knew that it didn't necesssarily help).

    ~There are those who have it severely yet do not have symptoms.

    ~I remember also reading a survey where they found upwards of 80% of their members had CFIDS or Fibro. (So there seems to be a huge link for us.)

    ~And last but not least, they have reported that the candida diet seems to have helped symptoms the most over rx'd meds.

    My problem is not really FM but the CFIDS. But I think it just shows up different in each of us, and there is some link between all these problems.

    All the best,

    ~[This Message was Edited on 05/26/2005]
  3. victoria

    victoria New Member

    I have no idea how long I'd had endometriosis as the symptoms causing me to get a laparascopy didn't show up until I was about 30 or so, altho I'd had off-and-on painful periods since 15 or so; I feel I've had CFIDS since I was 18 and had mono for a year. -V

  4. Gly

    Gly New Member

    I have endo, too and had a hysterectomy at age 40. My fibro started around 5 years later.

    I read that over 30 percent of women with endo will get fibromyalgia at some point. Those are high odds!

  5. tandy

    tandy New Member

    Geeez! I gotta re-read that Dr. Lee book as its been yrs~
    But even when I first layed eyes on it I knew it made alot of sense. I wanted to try the natural progesterone cream to help my Endo symptoms but my gyno did'nt want to hear of it!! (would'nt help) and I did'nt want to go it alone~

    I've been suffering a very long time with both conditions Fibro and Endometriosis

    I did'nt go the hysterectomy route because after much research,found that many women were'nt cured by a hysto.
    (Drs. son't tell ya that!!) Many woman still had alot of pelvic pain,low back,and leg/butt pain.
    So for me,...I was'nt willing to have my organs taken with such bad odds of being helped.
    I have laps. about every 3 yrs to remove new endo growths,cysts,webs,etc,.....

    I use Depo to control pain with bleeding. I hate the depo! I went off the shots on my own and was in excruciating menstrual pain when my period came~
    It was THEE worse pain!! I could barely walk.

    So,...back on the dreaded shots untill I find myself a better way~
    I read all the time on Fibro and Endo. Looking for new treatment options.
    Endo and Fibro do very much go hand in hand.
    The Endo association now considers endo to be auto-immune.
    Like the many DD we suffer from.

    I can sympathize with you in that having both is hellish pain! I hardly know whats from what??? meaning what pain goes to what disease!
    Hang in there hun,....and just keep reading and searching for answers for yourself!!
    I hope this has helped some :)
  6. Mother_Margaret

    Mother_Margaret New Member

    You wouldn't believe how pervasive one chemical is.

    In harming a parent, since it is a teratogen chemical, EGBE can affect you AND you can get your own expsoures.

    For sure learn a little about it.

    Don't get any exposures. Wear goggles when you clean and paint, etc. Stay away from people who do that kind of work,, too.

    Glyconutrient trials are showing great promise for help.

    The ailments this chemical causes are many. But, it doesn't get blamed for any, practically speaking.

    The research is done; however, patients and MDs alike, do not recognize it.
  7. wiseeagle

    wiseeagle New Member


    I've had endometrosis for over20 plus years! About 4yrs. ago I went to the ER due to severe pain -- I and dr's thought I had appendictis. After any scans, It turned out to be my endometrosis in a major flare -- I had many areas visable with these scans. ER dr. recommended a hysterectomy because I was not going to have any more children. I flew into a rage and asked him if he would consider removing his testicles if he wasn't going to have any more children! Needless to say he stomped out of the room and gave a Rx for pain med's. I begain a search for a Dr. that specialized in lazer treatment..I would never consider a hysterectomy. I feel really bad about your experience and didn't know that there were other options!! I don't know really what you can possibly do now. I certainly would talk to this surgeon about all the problem you are experiencing...If he gives you NO satisfaction consider reporting him to the Medi cal Board in your state and then definitely find a New Gyn!

    Hope this was helpful!

    I send you alot of light and love,

  8. Countrymom

    Countrymom New Member

    I have FMS and endo too. I didn't realize there was a connection between the two. My endo has been quiet since my last surgery (6 years ago) but my FMS hasn't. Hmmmn, interesting. I hope your pain gets better.
  9. EllenComstock

    EllenComstock New Member

    Unfortunately, there are lots of us with both FMS and endo. I believe there is a strong connection between the two. I started having both endo and FMS symptoms in my early teens, but was not diagnosed until my early 40's. (actually, I diagnosed myself and then found a doctor who confirmed what I suspected).

    I think it's sad that someone like me who is not a doctor ended up diagnosing myself when no doctor could figure it out. I have been diagnosed with stage I endo, but I had severe cramps and was very sick every month when I was younger. Fortunately, I do not get that sick any more, but I do have months when I have severe aching pain in my pelvic area, lower back and buttocks. The past few days have been a killer for me.

    The endo specialist I see said that I could go back on the Lupron shots (to stop my periods) if I start having more trouble with my periods again. If every month starts being like this month has been, I will definitely go this route.

    Someone else recommended the Endometriosis Association to you. I have been a member for years and highly recommend them, too. They are wonderful and have the most accurate information I have found.


  10. nanswajo

    nanswajo New Member

    Hi northern:

    Yes, I am now 54, but had a hysterectomy due to endo in my late 30's. It was pretty bad--affecting my bowel also.

    I'm not really sure when the FMS started, but it certainly might have flared it up. I've only been really bad in the last year and flared by other things.

    I found it took me a good year to recover from the surgery in my 30's.

    Wishing you better days ahead, Nancy

  11. Leenerbups

    Leenerbups New Member

    I have it, just recently diagnosed. I have to undergo my first laparascopy, but my periods are leaving me so anemic they have to wait until my blood count is up. But every month I am so sick and weak, I hate to have them wait.

    They think mine is up high, an affecting everythign inside. I also have a fobroid tumor in there and polycystic ovary syndrome.

    I absolutely think hormones play a crucial role in FMS/CFS.
  12. janiemac

    janiemac New Member

    I can tell you there is a definite connection. After years of pain and misery I finally decided to do the hysterectomy. It took 2 1/2 hours longer to clean up the mess inside, but I do feel better. My fibro has not flared nearly as badly as I feared and I have started on some hormone therapy which I believe may have helped. I think there is a real connection between our hormones and CFIDS. I am still doing the slow walk of recovery but there IS a difference ! Good luck.
  13. josie6

    josie6 New Member

    I had suffered for years with severe endometriosis. I even had a blood filled cyst removed which is when they originally found the endo. I also had laser surgery about 5 years later by a different doctor and he told me that the endometriosis had my fallopian tubes so twisted up that the surgery took longer than expected.

    The only way you will get endometriosis back after a hysterectomy is if they don't remove everything. You have to have a total hysterectomy (uterus, ovaries, fallopian tubes, cervix) so that the endo doesn't come back.

    I have not had any endometriosis since my hysterectomy but had the first signs of fibro before the hysterectomy (ringing in my ears which I still have).

    I was told by a doctor that endometriosis and fibromyalgia are both auto-immune diseases and that if you have one, your chances are higher for getting another one than someone who doesn't. I also have hypothyroidism which is also an auto-immune disease.

    Good luck