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Endometriosis UK
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anyone have CFS & endo?

afternoon ladies

I have been suffering with endo for a good few years now, had a lap earlier this uear to remove endo and cysts..long story short my fatigue and illnesses have been getting gradually worse this a week ago when I hit an all time low. I was so sensitive to light and sounds, my hands were cramping so I couldn't even hold a pen, headaches, and fatigue that didn't go even when I rested

anyone else have CFS? My doc seems to be really good but until diagnosis I cannot say, would love avice from anyone else suffering

7 Replies

Most of us suffer chronic fatigue- part and parcel of a long painful battle with endo and with the NHS. Not found any cure for it. Wish there was something that would solve the problem but so far no one has found a solution.


I have endo and cfs/ME also.I think the CFS is a result of long term struggle with inflammation from endo from the age of 19yrs and also a bad flu I had in 2000Looking back in my life I had a huge endo crisis at 19yrs of age and I think this was actually the start odf ME,as I have struggled on and off with fatigue since then and am now 48yrs!?.I also had Meningitis in 2008,which I am lucky to have survived,butthis had made my ME far more severe.I reckon any serious and chronic illness will give symptoms of fatigue.

Look up Action for Me and Me research Uk -both have great info and support.It may be you can identify specific symptoms -they certainly sound like CFS but as poster above says it could also just be the whole trauma of living with endo.


Blimey. I am sorry to hear you have been through do much.

I will look up the link

All the best


Feel free to privately email meClick on my user name and on my profile page there is a place to email privately - saves talking about ME on the endo forum! Think there is also an Me forum,but I don't go on them as find them to a bit depressing!


thank you will do


I have cfs/me stage 4 and endo. Have been battling with both since 1996, along with seasonal bouts of pneumonia, which reaks havoc on the immune system. It is a constant battle each day as you may go to bed feeling ok but then wake up the next morning feeling so bad you can't get out of the bed. My cfs/me consultant has been of no help and I am currently waiting to be changed to a different consultant. However my endo consultant has been a fantastic support, even gave me the private work office number to call directly if needed. From what you are saying it sure sounds like you too have cfs/me - my advice would be for you to push for urgent diagnosis so that you can get properly diagnosed and given the help that you need. xx


golly what a hard time you have had! I am defo going to keep pushing as I need to get on a good path to be able to work and keep the house going for my sonx


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