How long did it take you to get diagnosed? Other possible diagnosis? Tell me your baby stories please.
When I was 17 I had an ultrasound that they said was a diagnostic ultrasound to evaluate my ovaries because they thought I had PCOS. In doing that ultrasound not only were they unable to find my left ovary, they confirmed the presence of multiple follicles in my right ovary that were not being released. I was never sent to see an endocrinologist, they never really did anything about it except throw medroxyprogesterone at me to try and regulate my cycles.
At 26, when I express interest in having children and they decided that they were going to continue medicating me for PCOS this might never actually confirming that I had it. They stopped the progesterone and started Metformin 500 ER, 2x daily. My body didn't absorb the metformin at all, in fact I'd frequently pass (shit out) whole metformin pills two hours later. They did a basic panel, testing FSH, LH, and all those other cool hormones, but they never tested testosterone or anything like that. Results came back within "normal for PCOS ranges."
I'm now 30 and I have just seen an endocrinologist for the first time because my blood work indicated that I was entering early menopause. She said in order to be officially diagnosed with PCOS you need to meet 2/3 criteria: cystic ovaries, high testosterone, and presence of physical symptoms. They did another ultrasound (they found my very tiny left ovary finally) and I have cystic ovaries for sure, but she thinks my matching physical symptoms are mimicking PCOS symptoms. We're doing all the blood work for all my hormones tomorrow.
After over 13 years of being treated for PCOS, she thinks it's possible that I may have been misdiagnosed and is now testing for thyroid problems, Cushing's disease, and a few other issues that can apparently mimic PCOS.
Until they can rule out other problems, they're still treating me for PCOS, now including an injection once a week. I'm not diabetic but apparently medication for diabetes are helpful with PCOS because of insulin resistance? I'm not sure I understand and I felt dumb asking questions and trying to get her to explain them like she would to a 5 year old because, while I'm not stupid, discussing my hormone problems and my inability to conceive (as I desperately want children) is a very emotionally charged conversation and my brain tends to focus on "But can I have babies?" instead of taking in all the information I can. Currently the answer "it's unlikely."
Has anyone had this much trouble getting diagnosed? Has anyone found out their PCOS diagnosis is wrong?
Better yet: tell me stories about finding out you're pregnant after years of hormonal imbalance, skipped periods and being told it will never happen because I really need some hope rn.
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