Endometriosis UK
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Pain still

Hi wonder if anyone can help me please? I have severe endometriosis had it since 1991, I have had a full hysterectomy 4 years ago, and in November 2015 had both my ovaries removed and my bowel shaved:-(

Since then I'm still bloated still have a lot of pain, and now I'm having bad pains during intercourse😰Is this pain always going to be with me?Andrea

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Hi Andrea

Unfortunately a hysterectomy and BSO won't 'cure' any endo that is present at the time of surgery unless it is fully removed (excised) at the same time, in which case it is the excision that has treated it and not the hysterectomy. Since your ovaries were left the first time these will have continued to feed the endo just the same as before. The pathogenesis of endo is unknown but the experts do think that pelvic (peritoneal) endo is caused by menstrual blood escaping at the time of a period so if this is the case then removal of the uterus may prevent new endo from forming but will have no effect on existing endo.

Were you treated in general gynaecology on both occasions because if it was known last year that you had endo involving your bowel in association with symptoms such as pain with sex then you should have been seen in a specialist endo centre where the surgeons have undertaken advanced excision training to fully excise your endo.

Did you have an MRI prior to surgery to locate any deep nodules of endo since these typically cause pain with sex?

Also and importantly have you been put on oestrogen replacement since having your ovaries removed and if so what brand and dose and have you had an oestradiol (oestrogen) blood test since to check your levels? It is very important that levels are kept to a level low enough that would not be considered sufficient to stimulate any endo that may have been missed even after thorough excision but high enough to give you the benefits of oestrogen such as preventing osteoporosis later in life. But in a case where advanced endo has been left then it can produce oestrogen within its own cells to feed itself anyway.

The upshot of this is that it sounds like you still have endo affecting your bowel and need referring to a specialist endo centre to have it thoroughly excised. Click on my name and look at my post on how to find a specialist centre.


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