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Endometriosis UK
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Inactive endometriosis

Hi while my surgeon is performing hysterectomy and ovary removal alongside excision of pelvic endometriosis he has said the endo on my diaphragm is inactive/old and no need to remove. Am confused as thought all endo should be removed, can endo become inactive? Am probably perimenopausal/46.

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I’ve had everything taken out and I still have endo all over my scar tissue every time I have had repairs and I’ve had a few it’s just got worse for me. The hrt can feed it but I tried to live without hrt and couldn’t so everyone’s different - is it worthy getting second opinion - our bodies we need to know in depth what’s happening to them x

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Endo is very variable in appearance from subtle clear bubbles to red to black lesions to white patches. There is a theory ( developed by redwine inthink) that implants have a life cycle and white lesions are the end stage and are inactive. This article describes that thinking and related research , however I don't know if that is proven. Or if an inactive area can reactivate.

endocomprehensive.blogspot....

I would be asking lots of questions of your surgeon about how he knows it's inactive and the risk and benefit of leaving it even if seemingly inactive Vs risk and benefit of removing it given its location. If you are symptomatic in the areas he's found with " inactive" lesions that would influence things for example

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There is no such thing as inactive endo, yes it should where poss all be removed. Stage 4 endo feeds itself unfortunately so once removed more can form. Is this dr a bsge registered one at a specialist centre? If not p!z do not let him do surgery, get referred to a specialist, it will be worth it.

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Hi SEB88 , can you provide any links to the research evidence or quote the information source that makes you state there is no inactive phase, it would be very helpful to read up on that. Thanks ever so much.

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Hi, the links are all on a facebook group i am on with many other women so i cant post them. The lady who runs it is fantastic and i am much more aware now thanks to her.

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Which Facebook group? Actual published clinical research on pub med etc should be resharable as the Facebook group wouldn't hold copyright to it.

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I am not sure where the data has come from. I am only passing on knowledge that i have been told and seen by other more knowledge people. If you want that sort of research i am sure you can search for it as well.

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SEB88 I have searched and couldn't find anything, and it's very relevant to me. Please could you point me to the FB group that has it?

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