Endometriosis and PCOS: Okay so long story... - Endometriosis UK

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Endometriosis and PCOS

MikkieG profile image
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Okay so long story short, when I was 18 I had my first ultrasound and they discovered I had a large complex cyst on my ovary. They operated because of the size and that was when I was diagnosed with endo. I had to request a doctors letter for my workplace because it has unfortunately come back and whilst I was reading it I discovered that my surgeon had written that my ovaries were poly cystic in appearance... does this mean I have PCOS? And why did he not tell me this? I've had cysts on my ovaries every time I've had an ultrasound and no one mentioned this to me?

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MikkieG profile image
MikkieG
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Mabes profile image
Mabes

You can have polycystic ovaries without having PCOS (the syndrome). PCOS refers to a collection of symptoms and supporting blood work (LH higher than FSH - ratio should be 1:1. Potentially insulin resistance. Plus high levels of testosterone/androgens), plus sometimes an ultrasound that shows the cysts.

Have a look at the symptoms (SoulCysters is a good forum for PCOS) and if they to fit, you could ask for definitive testing to rule it in or out.

I was misdiagnosed with PCOS for 10 years on the basis of polycystic ovaries via ultrasound and some symptoms, but no blood work done. I actually had autoimmune thyroid disease and endometriosis! The two together caused my PCOS type symptoms and the 'string of pearls' polycystic ovaries I had were not actually because of PCOS. I believe I managed to get rid of the cysts by following plant based diet, although I still suffer with ovarian cysts... Just not the polycystic ones. I had definitive testing twice to rule PCOS out - via endocrinology departments at 2 hospitals.

Whenwillthisendo profile image
Whenwillthisendo

I would also like to know the answer to this question! xxx

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