It doesn’t involve scary cysts
PCOS occurs when a woman has a lot of resting follicles (fluid collections that hold eggs), but doesn’t actually ovulate. A bit of basic reproductive biology: In a typical menstrual cycle, one of those follicles releases an egg from the ovary during ovulation, but this doesn’t happen with polycystic ovaries. "Most women have 10 to 15 total resting follicles on ultrasound, but women with polycystic ovary syndrome may have 10 to 20 on both ovaries—20 to 40 or more total," says Lora Shahine, MD, a reproductive endocrinologist at Pacific NW Fertility. But, she says, "polycystic ovary syndrome" is a bit of a misnomer. "Cyst just means fluid collection and it’s normal to have follicles in our ovaries—it’s the number of follicles that are higher in these patients," she says. "Cyst has such a bad association with patients—it tends to equal disease or badness, but we have ‘cysts’ every cycle. I wish we’d change the name from polycystic ovary syndrome to polyfollicular syndrome or polyegg syndrome!" Check the silent signs you have polycystic ovary syndrome.
It isn’t easily diagnosed
Polycystic ovary syndrome is very common. According to the U.S. Department of Health and Human Services, it affects one in 10 women of childbearing age. Although there are certain PCOS symptoms, the diagnosis isn’t simple. "There is no specific blood test or symptom that clearly diagnoses it—it’s a collection of signs and symptoms and every woman is different," Dr. Shahine says. "Providers can differ in their definition, and some expert groups have made alterations in the diagnostic criteria, but most providers use the Rotterdam criteria from a 2003 meeting of experts." These criteria include two out of three symptoms: irregular menstrual cycles from irregular ovulation, excess androgen activity, and polycystic ovaries. Androgens are male hormones, so women with the syndrome have "either physical signs of extra androgens, like acne or extra hair growth, or lab values like high testosterone," Dr. Shahine says. Especially if a woman isn’t trying to get pregnant, "It’s not on people’s radar—patients or providers," Dr. Shahine says. You might see a dermatologist for acne, but not think to talk to your gynecologist about it; or you might think your extra hair is just because you’re Italian (here are other reasons you’re hairier than you want to be). According to a recent study, over a third of women reported going more than two years and seeing three or more health professionals before being diagnosed. "This is why increasing awareness is so important," Dr. Shahine says. Could you have a hormone imbalance?
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