Is it 'normal' to feel this tired?! - Endometriosis UK

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Is it 'normal' to feel this tired?!

Smor profile image
Smor
4 Replies

Hi everyone, this is my first time ever reaching out on a forum like this but I could really do with some insight. I was diagnosed with endometriosis 8 years ago, I had a lap and they 'lazered it out', so to speak! They warned me it would return, told me how the pill can help. The problem is the pill makes me really hormonal and I really didn't feel in control so stupidly perhaps, I stopped. For the past 2/3 years I have felt my periods become more painful, intimacy is a no-go and the bloating has returned. I am sure it's back.

This time around, I have not had a significant amount of bleeding but I am so exhausted. I don't remember this tiredness last time, perhaps because I had a different lifestyle (I was a student so had a lot less on my plate.)

I suppose my question is, is this a normal experience in endometriosis and how do people manage it day to day? It takes most of my energy just to go to work, I hate letting people down so I really push myself to get there. Problem is my weekends and evenings suffer. Do you all prioritise your work over your health needs too?

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Smor
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4 Replies
Starry profile image
Starry

Fatigue was my main symptom. I started sleeping weekend afternoons. Then bladder issues led to discovery of RV Endo nodule. I developed worse chronic fatigue after my diagnostic lap. Hormone treatment ( coil then zoladex) just made me worse. 3 weeks before my Endo excision I went off sick with chronic fatigue.

I am hoping that the excision will improve it over time but I'm only a month post op and still off sick at the moment.

I read that hormones only really have a delaying effect on recurrence of about a year anyway and some Endo types are hormone resistant.

ncbi.nlm.nih.gov/pmc/articl...

Apparently the fatigue is associated with the auto immune connection.

SarahB83 profile image
SarahB83 in reply to Starry

Hormones didn't work for me either, it just returned so quick and now it has caused loads of other issues to. Fatigue is a main symptom as the pain itself can cause it not just the endo. Pain takes a lot of energy.

cmbxm profile image
cmbxm

I'm really struggling with fatigue at the moment, work wipes me out and it takes the whole weekend to recover and I feel like I'm stuck in a rather unhealthy cycle, still trying to figure out how to fit friends and family in but right now my priorities are work, sleep, my health, family and then friends and other responsibilities which isn't a healthyway to live but what I have to deal with at the moment 😩😫 just wondering if your fatigue got better after your lap? because I'm due for mine in a couple of weeks and I'm hoping it helps with the fatigue!

SarahB83 profile image
SarahB83

I put my work over social all the time, I don't go out anymore as it is too painful. It definitely sounds like it is back. The best advice I can give is search online for the best endo consultant in your region and request a referral, if you don;t get them first time round go for a second opinion and a third if necessary. I see the best in my region and he sees ladies who live a four drive away and I have travelled 300 miles to see someone he recommended for additional help (but they were not as good as he is). If you have to travel travel you need someone who has a specific interest in it otherwise they fob you off. I have had 17 laproscopies now, due to my age he won't do a hysterectomy and becasue of the various treatments I have had he thinks it may not work. Defifnitely go to your gp and ask to be referred. Good luck.

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