Has anybody had a misdiagnosis (?) of PCO... - Endometriosis UK

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Has anybody had a misdiagnosis (?) of PCOS instead of endometriosis?

ggno profile image
ggno
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So I just got back from my ultrasound scan (I had both one over my pelvis and an internal one too), and the nurse said I have polycystic ovarian syndrome.

I appreciate and accept this as a diagnosis as she seemed pretty sure about it, but I really believe there's something a lot bigger perhaps bigger than my PCOS. For example, I asked her if PCOS can trigger bowel symptoms such as the ones I've been having (e.g. bleeding when I have a bowel movement) etc. and she actually said no, that there must be something else going on. For this reason I am still absolutely convinced that I have endometriosis.

Not only do I have every single symptom of endometriosis, but the symptoms of PCOS that I have read up online just really don't seem to match me at all. A friend of mine has PCOS and has totally different symptoms to me, for example excessive hair growth, acne and general hormone imbalances. For me, I've never had a single problem with my skin, and have never suffered with much hair at all. I just don't seem to be able to relate to any of the symptoms.

Is it possible that she just diagnosed me with that because she saw normal/healthy cysts on my ovaries? I'm so confused.

I have a doctors appointment on Monday and gynaecologist appointment on Wednesday, so I'm still going to try to push for a laparoscopy. I'm just not happy with PCOS as a diagnosis, as it doesn't seem to explain anything for me. My friend is barely affected by hers, yet whatever is wrong with me affects every aspect of my life, and I'm constantly in pain :(

Has anybody now diagnosed with endo, had this diagnosis of PCOS before which just doesn't seem to make sense? I have heard that endometriosis can very rarely be spotted on an ultrasound.

Feeling really lost and misunderstood right now :(

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Nikkilouise profile image
Nikkilouise

I was diagnosed with pcos three years ago now and they just said all the pain was down to that. But I had bleeding etc. I have now been diagnosed with endo, but I've defo got pcos too. So she may be correct you probably do have pcos but it doesn't mean you don't have endo aswell. Push for a laparoscopy, scans don't show endo up!

Cdiddi93 profile image
Cdiddi93

I thought I'd join your discussion. That's interesting.

I was diagnosed with Pcos aged 19.

I started at 12 and they were regular up until 17 when for 2-3 months they went odd. 2 bleeds one month, but from 15-16 they were heavy and painful often.

I suffered traumatic stress from 11-14. At 19 I was going through life stress.

I'm 24 now. And from being 20, they have been every month. When expected, and I have tracked my ovulation the last 2 years and from what I can gather I ovulate every month. Sometimes I've not checked but I'm going to investigate further. Currently actually.

So diagnosed at 19. Not missed a period since 20. Maybe 1.

I changed my lifestyle, exercise, eat healthy. Maybe its due to that. But I have it and I ovualte. I've never TTC so whether or not I have follicle issues I'm unsure. So yes there is possibility of miss diagnosis , or indeterminable possibly. I expected 3-4 a year but nope 12. Regular and ovulate. You can get investigated further.

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