Endometriosis UK
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Irregular Period

Hi All,

I was disagnosed with stage 4 endo, almost 2 years ag when a scan to look for the cause of my IBS found a cyst. As my grandmother died of ovarian cancer, and I had a ca125 level of 165 I was referred to a consultant in London and surgery was performed in days, where an ovary was removed and stage 4 endo found. It seemed endo could account for most of my symptoms, heavy periods, pain and aching, insomnia anxiety etc, but everyone jumped to the wrong conclusion.

Six months after surgery another scan found a further cyst. I had a repeat scan, still there and then a scan 5 weeks ago with a sonographer, and he was really helpful. He said everything looked good, he was happy there was nothing sinister and that I had a pseudo cyst, a collection of small adhesions with some fluid and there was to be expected with endo at my stage and he was happy that all was ok. I saw my consultant straight after and he also said the scan was good and he was happy all was ok, that yes I had endo, that the only surgery option was now a complete hysterectomy, and as I had improved greatly from when he first saw me I was discharged. But he wanted to rerun blood tests to be sure, so a new ca125 and he4.

After a worrying two weeks of waiting for results my ca125 was 41 and he4 was normal so he said all was good and I could go back to him if things got bad, but whilst I was managing ok I just had to deal with it. Which I am ok with as after my surgery it was loads better and I had answers.

So my first period after seeing him was literally a day later and it was heavier even for me. But then the one now, is much lighter and prolonged. I had very light spotting just before, which again can be normal for me, lighter in the middle, and now back to the spotting where I think it's gone and it's back but only very very little bits.

Add to this I am 40, with one ovary and have had an awful last four weeks of stress, panic attacks, lack of sleep and family things and now this weird period, which I am stupidly stressing out about and I guess that's making it worse.

Everything I google says it's fine, normal with endo, normal for my age, that with only one ovary it could be the start of menopause, that stress is a big factor and to just leave it a while and see if periods just form some kind of normality again, but I wanted to ask people more likely to have been through similar if this was true.

I have nobody to talk to about this stuff. My mum had a hysterectomy so didn't go through menopause, and my anxiety means I don't really have friends I can discuss this sort of thing with and well google can tell you anything from call 999 to just chill out.

So bearing in mind I have just had all the blood tests and a scan and told all is ok, should I just relax and see how it goes? I'm sure I have had lighter and then heavy etc in the past but my stress is clouding things, and I know I get this light spotting before it really kicks in and sometimes that goes on for days, so I guess that's endo. Just looking for any reassurances. I'm terrified of doctors and the thought of going back after the last two years of being poked and prodded and tested for just about everything is just adding to the stress.

Thank you so much for reading :-)

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