Endometriosis UK

Periods/cycle after bilateral oophorectomy

Hi, I've not posted here for a very long time - so long that the boards look totally alien and I can't work out if I'm meant to put this post in a certain place. Sorry if it's wrong!

I have a long history of Endo and, due to repeated chocolate cysts growing on my ovaries, I have ended up having a bilateral oophorectomy. I'm only 31 (can I still say "only"?) and have no children but my ovaries were covered in scar tissue and as the cyst grew, it was unable to grow outward so grew inwards, crushing my ovary as it did so.

Ive seen my Gynae once, and said I was surprised I was still having a regular bleed, at which point he put his head in his hands and said "oh, dear me". He said that there's two options - either the HRT is causing me to cycle, or there's still ovary left behind.

I have therefore stopped taking the HRT and he said to see if I get hot flushes, then get my blood work done before going and seeing him again. I only had a few, minimal hot flushes around the time I would have usually ovulated, had I still had ovaries, and I have started bleeding again, about 3 days after I would have expected to in a normal "cycle". Ive now had three "periods" whilst on HRT and one since stopping, all spaced out as though in a normal cycle. This one, in particular is insanely painful requiring the full drug arsenal and tens machine.

So, does anyone have any information about this and what might or should happen? I still want to try to have donor egg IVf so a hyst is out. Is there anything else I can do to stop this pain or am I basically screwed?

Endo has ruined my adult life. I was 19 when I was diagnosed and im now 31, and I feel like I've spent the last 12 years fighting against it. I am so tired of it.

Thanks for reading.



1 Reply

I had my right ovary removed last year. Then i had a hysterectomy this year........and right ovary removal again. Yes, again. It turns out you can develop Ovarian Remnant Syndrome. If enough of the ovary cells were left behind, they can rebuild themselves. It explains why I had NO relief from the pain last year. I even told my bff's that it was like it was never taken out, like surgery never happened. Now I can tell that it is gone, because I am having SEVERE breast pains. I 'think' i got my cycle last week, and had to call off work for 2 days and have 4 days of SEVERE pain.


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