Stage 4 discovered but not sure what to do next?

Hi - my first post on this helpful forum ...

I had laparoscopic surgery six months ago to remove a painful, bleeding ovarian cyst which turned out to be an endometrioma. My gynaecologist found endometriosis all over the walls of my abdomen, on the uterus and ovaries. My ovaries are both stuck to my uterus as was the cyst, which meant she could only cut away some of the cyst walls, leaving a patch of cyst wall welded to the uterus.

I was shown photos of the endometriosis (looks like blobs of raspberry jam all over my insides) and told it was stage 4. This didn't surprise me as I had thought I probably had endo since I was a teenager. I've always had incredible pain related to periods to the point of having to curl up in a ball, but I am quite old (50) and in those days you were told it was normal so I have 'normalised' it over the years I suppose and never went to see anyone about it, which I now regret.

Now I am about to go to my follow-up appointment. I was given options of: drugs to bring on a false menopause (I don't seem to be nearing it - mother didn't have hers until she was 54) but I understand these only last for 6 months and can have bad side-effects. I could have a referral to an endo specialist, presumably if I wish to opt for surgical removal. The third option is to wait it out and hope the menopause arrives soon and ends the problem.

I have to be honest and say I am struggling with this - I'm not sure if it's possibly perimenopause (I have frequent periods with no hot flushes) or just ageing in general but I am finding the pain I used to be able to bear when younger is really wiping me out for most of the month. It's not even as intense as the pain I used to get but seems more exhausting - mostly lower back pain but also abdominal and some pains under the ribs which I think stem from the remains of the cyst bleeding and causing irritation perhaps to my diaphragm.

Should I ask for a referral? I'm not keen on more surgery, I know the NHS is strapped for cash and feel I may be discouraged because of my age, but the thought of possibly four more years of this is quite depressing!

Sorry for writing an essay and if anyone manages to read it all and reply with any advice then thankyou very much.

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  • I think it would be worthwhile having excision surgery. It should help with some of your symptoms and both times I've had excision I've recovered really well. Hopefully you could then have some medication to attempt to prevent reoccurrence. X

  • Hi Janine

    Thanks for replying. It sounds encouraging that you have had excision surgery twice and found it helped (and that you recovered well). I'm trying to get my head around it as I do find the whole thing quite scary (even though it's laparoscopic surgery I imagine it takes a long time to excise all the patches of endo so quite a major op in that way) and then there's the fear that it might not help after all.

    I get the feeling that my gynaecologist isn't too keen to refer me because she thinks I must be nearing the menopause by now (I'm not so convinced but who knows?) but she has at least mentioned it as an option.

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