Endometriosis: I suffered from... - Endometriosis UK

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Endometriosis

claire1967 profile image
6 Replies

I suffered from endometriosis years ago and had total pelvic clearance. That was in 1999. Last week I was admitted to hospital with severe pain in right side. Surgical team transferred me to gynae ward. I had internal scan done and told I have very large cyst behind my bowel and 3 on my right side. I have been on HRT for years and had it changed twice, then recently I had it changed again to higher dose and it has flared up the deposits left behind on my bowel. I have now been referred back to endometriosis specialist for laparascopy. Such a let down I was told hysterectomy cured endo. I know I had an extremely severe case of endo originally but didn't know if HRT was too high can be enough to start even the smallest seed left behind to grow again. Very disappointed. Is anyone the same as me?

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claire1967 profile image
claire1967
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6 Replies
PPSN_JudyB profile image
PPSN_JudyB

In 1999 most people would have been told this, however more is known about recurrence now and a few studies have been published. However oestrogen is produced by the body in small amounts even without ovaries and HRT so it may have recurred anyway.

Where have you been referred to ?

claire1967 profile image
claire1967 in reply to PPSN_JudyB

Belfast city hospital northern Ireland

PPSN_JudyB profile image
PPSN_JudyB in reply to claire1967

Do you know who will be doing the surgery, their level of expertise and whether a bowel surgeon will be present during the surgery ? you may already have checked all this out.

Petunias profile image
Petunias

Unfortunately there are still gynaes out there who still recommend a hyst to stop endo. Unfortunately unless they properly excise the endo itself its never gone. Please make sure that your surgeon plans to perform excision surgery nit just burn it off as the endo will just regrow otherwise. Hope you get sorted properly soon xx

claire1967 profile image
claire1967 in reply to Petunias

Thanks very much for that info. Just can't wait to get it sorted out again as awful pain is back. X

Sazzle65 profile image
Sazzle65

Hi Claire

I had a hysterectomy 2 years ago and never thought the endometriosis would return but after reading your post I think it has.

I am getting a lot of pain on my right hand side, some days it's unbearable. I haven't been back to my doctor as it's safe to say she is less than useless. My consultant too wasn't brilliant, what should I do??

Sarah

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