Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME/CFS and endometriosis

Discussion in 'Hormones' started by Tulip, Jan 17, 2011.

  1. Tulip

    Tulip Guest

    Does anyone have both? Did your endo start before the ME/CFS?. I know these two illnesses are thought to be related due to problems with the immune system, and ME/CFS often co exists with endo.

    I have had endo since I was 14 and developed ME/CFS at 18. I never realised that endo effected the immune system until I thoroughly researched it. I have found when my endo is really bad, so is the ME/CFS and I get massive pimple outbreaks (i'm in my 30's now). It all seems to go together, I really think the endo lead me to developing ME/CFS.

    I am waiting on an operation for the endo and really wonder how this is going to effect the ME/CFS :confused: Has anyone had the operation for endo and how did you go with it?.
  2. justy

    justy Donate Advocate Demonstrate

    Hi Tuliip, i was diagnosed with Endometriosis before having M.E, about 20 years ago, but had had the symptoms since before then. I was lucky that i still had children, possibly because i started young ans was told to have another baby as it would help the Endo (it did whilst i was pregnant and breastfeeding and then gradually it came back)

    I waqs offered testosterone treatment but for obvious reasons i didnt fancy it. Personally i wouldnt have surgery, but it depends on how bad the adhesions are and wether you have/want children i guess. I knnow that the regrowth rate after surgery is high though, and it wont cure it - but i guess you probably already know this.
    For me, strangely me Endo has been better since i had my relapse a couple of years ago. I take hormone modulating herbs and am 41 now so i dont know if this has all helped. The pain has definately lessened for me over the past few years.
    Good luck with the op, i hope it brings you some relief.xx
  3. wciarci

    wciarci Wenderella

    Hi Tuliip,

    Many of us here had endo first, you may want to search past posts, there may even have been a poll. I have always thought that researchers should culture endo tissue and lymph tissue to find XMRV, rather than the blood. My endo is finally cleared up, now that menopause has struck. I used to end up in the ER is incredible pain. Never could have children because of it. I understand that it is now classified as an autoimmune disease. I had surgery, lupron shots, everything. Nothing really helped for long. Perhaps supplements to even out the immune system and working on gut health helped the most. Good luck

  4. ukxmrv

    ukxmrv Senior Member

    Hi Tulip, I developed Endometriosis well after the ME, decades after. Fortunately for me it's not a big problem but I totally sympathise with anyone facing this as I realise how painful/awful it can get. I was lucky enough not to have clearcut gynae issues but multiple miscarriages as lots of investigations/operations. This preceded the Endo.


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