ME/CFS and endometriosis

[Tulip]

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 Has anyone had the operation for endo and how did you go with it?.

 

[justy]

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

 

[wciarci]

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

Wendy

 

[ukxmrv]

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.

XMRV+