Polycystic ovary syndrome, or PCOS, is an incredibly frustrating condition for the roughly 5 million American women who have it: Among other things, they may find it harder to lose weight, battle hair loss on their heads and hair growth elsewhere on their bodies, deal with irregular or disappearing periods, and struggle with fertility issues.
For a lot of women, though, the process of discovering that they have the condition may be just as frustrating as actually living with it. Because researchers still aren’t sure what causes PCOS, there’s no firm set of criteria for determining whether someone does or doesn’t have it. Often, a woman will receive a diagnosis if she’s showing at least two out of the following three symptoms: ovarian cysts, irregular periods, and higher levels of androgens, a class of hormones that includes testosterone, in the blood. Just as often, though, PCOS is “a diagnosis of exclusion,” meaning it’s a sort of catchall conclusion, a fallback for when everything else has been ruled out.
It’s not exactly surprising, then, that a new study found that many women with PCOS are unhappy with the health care they receive. The study, recently published in the Journal of the Endocrine Society, surveyed more than 300 women, some with PCOS and some without, about their attitudes toward their primary-care physicians; compared to the control group, the women with PCOS felt less supported by their doctors, argued with them more, and trusted their opinions less.
Even outside of the primary-care setting, the research on PCOS patients’ interactions with the health-care system is pretty bleak. A separate study, published in 2016 in the Journal of Clinical Endocrinology and Metabolism, surveyed more than a thousand women about their experience with PCOS; for around a third of them, it took more than two years to arrive at a diagnosis. Slightly less than half of the survey participants bounced around to at least three different doctors before getting diagnosed, and more than three-quarters said they were unhappy with the guidance they received afterward.
That last part isn’t entirely doctors’ fault: It’s hard to give advice when there’s just not a lot of information out there to base it on, and PCOS is still ill-understood by researchers and physicians as well as patients. Still, uncertainty rarely makes anything better, and for women already grappling with so much of it — about how to manage their health, their risk of diabetes and other PCOS-associated diseases, their reproductive futures — viewing the care they receive as another obstacle, rather than a source of support, only compounds the angst.
