Not myself : Hi gals. It’s been a while... - Endometriosis UK

Endometriosis UK
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Not myself


Hi gals.

It’s been a while since I posted . I have endo, confirmed via lap in ‘16 stage 1. Then lap in July just gone, it had spread through out my pelvic area and gone to stage 4, and also diagnosed adenomyosis. I was in operation for 4 hours with the endometriosis being cut out. Nothing has changed really apart from the intense burning throughout my pelvis from the flairs has eased. Iv been refereed to digestive diseases because my bowel has stopped working, ( can only open bowels when I use suppositories)

I went back 4 months post op to be told I my best shot of pain free life is having a hysterectomy. So I’m down for that. But since the operation in July I have noticed my whole outlook on life, energy levels, mental state has really changed. I can barely do much without being knackered, all I want to do is sleep during the day as I’m up during the night either weeing or sweating and having to change my cloths. Can anyone Else sympathise? I can’t help feeling like I’m just a lazy cow !

7 Replies

Hi Holley I can say you are definitely NOT a lazy cow!! I suffer with extreme tiredness and fatigue which is down to havin fibromyalgia as well as Adenomyosis and possibly Endometriosis.

Have you been tested for iron deficiency? I always notice when I pull my eyelid down that the whites of my eyes are yellow and my tongue has a coating on it, yuck I know but I think we all know when something isn’t quite right in our bodies. I pee a lot during the night and day too.

That’s such a shame you have to go through with a hysterectomy! Can I ask how old you are?

That’s my fear to be told eventually I will need one x

PM if you want a chat x

I’m 32! I have a ten year old. I don’t like the idea my choice to have a child will be taken away but right now I can’t live like this. I’m constantly tired, constantly making excuses not to go somewhere or meet people or even cook dinner! I have degenerate disk disease, I’m deaf due to having a nasty disease when I was 6 in my ears that was eating towards my brain ( have a hearing aid actually screwed in to my skull called a baha) was recently diagnosed with hypomobilty in some joints. I’m on anti depressants. Even if I wanted another child right now I doubt I would be able to carry full term x

I totally relate to this. I was explaining to my boyfriend the other day the fatigue, all I could think of to explain it was that I wake up on half a charged battery every morning, never full and I have to choose what to use my half battery on.... work, housework, etc. I barely socialise anymore, as all I want to do when I’m not at work is be in my pj’s in bed. It’s hard to explain that fatigue isn’t merely the need for sleep. It makes me feel lazy too as I used to be so active and social. I’m sure it’s worse in the winter too as I feel achy and really demotivated.

Bastard Endo, I’ve had minimal relief since my surgery in May and like yourself the fatigue seems worse.

Big hugs xx

Thank you for replying. I don’t feel so alone x

It sounds like you are having an awful time.

Endo can make you feel pretty lousy.

Have you looked at your diet and eliminated any processed or high sugar foods .

Perhaps keep a food diary and look at ways to improve it each day with more fruit and veg.

My kind consultant has told me that a hysterectomy may not cure endo so I would gather more information before such drastic surgery.

I’m not having the hysterectomy for the endo I’m having it for the adenomyosis that’s the only cure for that x

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