Anyone with endo and severe chronic fatig... - Endometriosis UK

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Anyone with endo and severe chronic fatigue/me?

Hannah77 profile image
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I've had Fibromyalgia since I was 18 (triggered by massive stresses in the family) but was doing ok with it - went to Uni, worked, reveled etc

in 2008 I came off the pill at the age of 30 and 6 months later had my first bout of fatigue so bad I had to take time off from work. My period pains got worse and worse and so did my fatigue. I collapsed with severe me 18 months ago and am housebound and extremely limited. I was diagnosed with endo (from symptims) a few months ago and currently the pain is throughout the cycle. Any others with these two conditions? I'm afraid to have general anaesthesia due to drug sensitivities and risks associated with ME patients. I'm also hesitant going on a pill although previously had no problem with it but now seem.to react to everything. Feel really cornered and would appreciate any advice? Any experiences on having surgery with cfs/me?m

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Hannah77
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busylizzy1 profile image
busylizzy1

Hello

I too have FM and endo and have done for the pasr 15 years. I have mulitiple allergies/drug sensitivities but have had 14 surgeries ( not all endo related) and have never had any probs. I have had episodes when the pain and fatigue put me to bed for days on end but i read a really good book by Pam Wright on living with Fm and had some life coaching with her and as a result I am much kinder to myself and have removed the words "should" and "must" from my vocab and now do what I can, when I can on my own terms. My friends and family refer to the 'old' and the 'new' me as my attitude has changed so much. If I am having a bad day I just accept it and don't allow myself to feel guilty as the stress of those thoughts just made me worse and on better days i pace myself and always make sure to reward myself with something I want to do everyday. I have been on Zolades for the past 4 years without HRT as that's the only way my Endo symptoms are controlled. The hot flushes are a pain but without it I would loose at least ten days a month to the pain and vomiting.

Hope this helps

Liz

Impatient profile image
Impatient

Most of the ladies who have endo problems also have chronic fatigue at the same time. suffering chronic tiredness is symptomatic of endo, so I wouldn't let that be of any extra concern when having the surgery.

I have had worsening CFS over many years, having been a normal healthy high energy little soul to now spending very few hours awake each day. I'm shattered all the time, doesn't matter how much or the quality of sleep that I have, I am always so tired.

Surgery for endo didn't improve the situation or make it worse that I noticed.

I do manage to work a couple of hours each week day, then come home exhausted and sleep for a few hours then I am up for 2-3 hours in the evening then sleep again.

I certainly could not manage to do a full time job safely. I know my limits.

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