Need advice from long-time endometriosis ... - Endometriosis UK

Endometriosis UK

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Need advice from long-time endometriosis patients

CameronsMom profile image
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Hello. I've had Endometriosis since age 16.. I'm 40 now. (25 years of this crap. I've tried everything possible!) The last laparoscopic surgery I had was about 15 years ago. The past 2 years I've gradually become more sick than ever. Increase in pain, increase on bleeding, sharp rectal pain where I just feel like I cannot move while it's happening! Most of all, I've had SEVERE FATIGUE. I am at a point where I sleep more than I'm awake! I am not living...I'm EXISTING. I literally cannot stay awake..Dr sent me for sleep study, no sleep issues medically. Dr says it's the endometriosis causing the severe fatigue. Sept 6th I will have a complete hysterectomy, no hormones tho, because I have a liver hemangioma from birth. And hormones are dangerous for my liver. Can anyone relate to this? I've never been so tired in my life, and I'm just not feeling like myself for a long time . No sex life for 4 years..don't even have interest in men anymore...lol. I'm from USA...Our docs don't see endometriosis as an important subject like in the UK. We are told to take pain meds or hormones...tried all that. I appreciate any advice you can give me, especially if u have been through something like this. Thank you and have a good day . God bless all of us who suffer with endo <3

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CameronsMom
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Starry profile image
Starry

Hey X I can relate a lot. I've had it all my life but was only diagnosed a year ago so have only had two surgeries.

I always had periodic episodes of chronic fatigue and never knew why. I thought I was a low energy person and began to secretly wonder if I had ME.

It worsened steadily over the last 18 months to 2 years like you. I was sleeping afternoons at the weekend just to survive work. it worsened again after my diagnostic lap in December and the on hormone treatments. 3 weeks before my excision surgery I finally gave in and went off sick with exhaustion.

I'm a month post op and hoping that being clear of my endo will improve my fatigue but it's too soon to tell.

Rosewein profile image
Rosewein

Have you tried Serrapeptase? It has been super helpful for me. i also do Gluten and Dairy free. maybe you should take something to support your liver? i do I read that endo suffers should to help clear the hormones.

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