Endometriosis UK
35,389 members31,486 posts

Inactive Endometriosis

Hello everyone,

I've just had a full hysterectomy because of fibroids and extensive endo and was told by my surgeon that the endo was 'inactive'....therefore although she seperated the adhesions she didn't excuse them.....I've had brain fog till today but suddenly I'm thinking oh no what if it becomes active? I wasn't told anything else neither was anything explained to me and I'm so frightened and scared now.....I was rushed into hospital in July because my endo flared up and it was the worst month of my life....I lost a stone in a week and continued to lose weight for the rest of the month whilst doing my best to manage the pain. I couldn't go through that again. Can anyone tell me if inactive endometriosis is even a thing? Can it really be jnactive and stay inactive,

Hami xxx

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Was your surgery in a BSGE centre? X

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Yes it was Janine by the surgeon who is the endo specialist and who runs an endo clinic every week, hx

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I would talk to 'Endo Uk' link above. their trained advisors will be able to help you more. I don't remember posters on here ever making a distinction about active and inactive Endo.

Sorry not to help more, do try 'Endo UK' - or write to the specilists secretary asking for more of an explanation - you should get notes / follow-up from the op.

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