Sleep deprived...: Hi all, I'm new to this... - Endometriosis UK

Endometriosis UK

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Sleep deprived...

Brottonbabe profile image
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Hi all, I'm new to this community but have been using it for advice for a while. I wanted to discuss pain relief and how people have made others take endometriosis seriously.

June 2014 I was diagnosed with a cyst on my left ovary (5cm). I had a laparoscopy which confirmed I also had extensive active endometriosis in my pouch of Douglas (potentially in/on my bowel) and in/on my bladder. The consultant said she did not remove anything other than the cyst as I would be left with a stoma.

In March this year I miscarried (we have been TTC for 18 months now) and after I knew the cyst was back. I have seen a different consultant who has given me 3 options: injections to trick my body into thinking I'm in the menopause; an op to remove the endo at the core in a specialist hospital; or nothing. He said there's no point in removing the cyst again as it'll come back.

I have regular periods but the pain is so bad (mainly when I urinate or after a period when my cyst stops me sleeping) I often cry or nearly pass out with it. I have been given virtually any pain med I want... I hate taking them though as opiates make me slur my words and fall asleep pretty much straight away (they think I'm intolerant of morphine) and these new ones - acupan - give me immediate heartburn and again make me fall asleep.

This sounds like I sleep a lot however I have pain 3 out of 4 weeks of the month and would say most of those nights are with very little sleep. The only slight reprieve I have is when I turn a hot water really close to my ovary. In my job I can't have a hot water bottle with me all the time and people at work are getting frustrated with my "period pains". I can't seem to explain without sounding like a hypochondriac.

What have others done about pain? How do you get others to see you as a competent person despite being in so much pain it effects ability?

Sorry for the long post...!

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