Misdiagnosed with PCOS at 28. Turns out likely POI all along.
New acct but not new to Reddit - just separating the threads a little.
TLDR: 41 yo. Likely had POI since ~28, misdiagnosed as PCOS with no real follow-up or investigation. Now 41, learning that all along it was probably POI. Just got my AMH back. Undetectable. Not sure what I’m looking for besides maybe folks who also get it.
Full story:
In 2013 I started with a new PCP. I was super busy and fell out of the habit of going to docs every year since graduating college. My cycle wasn’t regular when I was a teen - I figured it was at least partly because I did gymnastics - but in my early-mid 20’s it had gotten fairly regular. Now it wasn’t and I brought that up to the doc.
She did the tests you’d expect. Results came back: FSH 155.8, LH 64.6, DHEA 599.2, Testosterone 54, TSH 0.77. She concluded it must be PCOS based on elevated testosterone and DHEA, blaming elevated FSH and LH on it too even though FSH that high is not PCOS. Noted in her notes numerous times that I didn’t have classic PCOS signs - was on the lower end of healthy weight, no excess hair in the typical places, etc.
Sent me to have a transvaginal ultrasound to check. Radiologist saw no signs of PCOS on the right ovary and couldn’t visualize the left. Said “further evaluation is suggested clinically”. Doc prescribed birth control (with no explanation as to what the purpose of it was to do besides to make my period regular) and sent me to a fancy breast cancer treatment center for them to confirm it was safe for me to take hormonal birth control with strong family history of breast cancer. They side eyed me a bit because I did not belong in a cancer treatment center. Something felt off.
No referral to an endocrinologist. No referral to reproductive specialists to discuss the possibility of freezing eggs. At that point in my life I trusted docs strongly, so if she said that’s what it was then she must be right.
The next part is on me - for lots of life reasons, I didn’t get back into good habits of seeing a doc yearly. Detail doesn’t really matter. I wasn’t regularly having sex and didn’t mind not having to deal with a period so I never did take the birth control. I thought it was just to prevent pregnancies and give me regular periods, neither of which seemed critical.
In 2021, I’m 36. No cycles pretty much since 2013/2014. I finally got myself back to a doc, who is in the same system as my previous one. Was hoping to switch to her as a new PCP, but she told me during our first appt that she was moving and this was her last week in my city and in the larger system. She gave me a work up including relatively basic bloodwork. FSH 104. She leaves me a voicemail (since she’s no longer in the system) telling me that my blood test is in post-menopausal range. I shut down a bit - we were all dealing with Covid still - and didn’t deal with it for a while.
Now, 2026. I’m 41. I finally have a new doc. Am on the “let’s figure out what’s been going on” train. She is fantastic and thorough. Orders blood panel to check all the things, refers to endocrinologist before the tests are even back, and now they are coming in. FSH 99.9, LH 37.9, DHEA 349, testosterone 35. Blood sugar is in the good range, cholesterol is a bit elevated.
This morning I got my AMH back and it’s under .015. Undetectable.
I knew it was likely. But seeing it right there and irrefutable is hard. Really, really hard. I wasn’t on track to have kids - no life partner etc - but on some low level I hoped I’d have an option to freeze eggs, and it looks like that door is firmly shut.
So that’s where I am right now. Mourning the lost possibility without knowing if it was even there. Deeply angry at the doc in 2013 who waved away the test numbers that didn’t fit her hypothesis. Frustrated at my past self for not questioning the doc’s conclusion when something felt off, not running the numbers past the (many) docs in my family, and most importantly for not going back for regular checkups in that extended period.
Not sure what I’m looking for here beyond some friendly shoulders because I’m definitely crying. Maybe insight into what to expect next. I know HRT is probably happening soon to see if we can prevent any further damage from the lack of estrogen for all of those years. I’m low-key hoping it might help me lose some stubborn belly fat that I now realize may have been a side effect of all of this rather than just gaining weight in COVID.
But mostly I think just getting confirmation that I’m not alone in all of this.