Endometriosis UK
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Next steps?

Hi Everyone

This is my first post on here although I've been 'stalking' the forums for a while now. I just needed some advice. I will try and give a brief history;

Periods started at 15. Always very painful, sickness, bowel problems, dizziness etc during period. I went on the pill aged 16 for symptom management and have been taking different contraceptives since. Now 24 yo I had the implant taken out earlier this year and currently on no contraception.

Been suffering with very painful periods as well as all the original symptoms. As well as this I get a horrible pain with intercourse and pain for 7-10 days mid-month (probably ovulation pain?) for which I rely on pain relief.

Obviously usual story, no doctors have taken me seriously and one recently said "probably PCOS - just go back on the pill". I got a second opinion and that doctor told me that such severe pain isn't a symptom of PCOS and he wanted to investigate further. I went for an internal ultrasound (transvaginal?) about 2 months ago and was told I had around 20 cysts on each ovary, a retroverted uterus and a hormone imbalance. She also said there was an 8mm blood filled cyst which she wanted to reinvestigate in a few weeks.

Went for the follow up scan yesterday and she told me the blood cyst has gone meaning it was just a functional cyst from where I've ovulated. The other cysts are still there.

Basically she has diagnosed PCOS but said she can't see any explanation for the pain and has referred me back to my GP to see what he wants to do next. This GP originally suggested a possibility of Endo and personally I feel almost certain it is, but I wanted to know if anyone else has had a similar experience? Is it just PCOS and I should just accept the diagnosis? Or should I continue investigating the pain? Anybody out there with PCOS know if pain is a symptom?

Sorry for the long story I'm just a bit unsure of what to do next. I feel like they've just found a problem and that's that but I'm sure there's more to it? I really appreciate if anyone managed to get through this without falling asleep!

Any feedback is so appreciated!

S x

2 Replies

I personally would ask your GP for a referral to a different gyne , an endo specialist if you have one local to .

I thought symptoms for PCOS , were irregular periods , hair growth ,weight gain none of which you have mentioned .

Generally for PCOS they treat it with the pill , which I guess you could start taking so by the time the next gyne app comes through you can go in and say , been on the pill and my symptoms are still there , ask you doctor to outline in the referral its for endometriosis .

You know you may not have it but I am a firm believer we know our own bodies so if you feel you have the symptoms and your life is quite frankly shit with pain then get back to gne don't just take what they said on the chin and give up they are not the ones living with it xx


Thank you for your reply :)

I do have irregular periods sometimes but usually between 4-6 weeks apart so nothing too abnormal I don't think. Other symptoms definitely not - even the GP said I don't really fit the criteria for PCOS being a 'healthy' weight, no acne, no excess hair etc. as well as having the pain which isn't a usual symptom.

Although there's no denying how many cysts there were so it must be PCOS surely? I'm just a bit confused I feel like there's conflicting opinions!

S x


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