In my mid-20s, a gynecologist diagnosed me with polycystic ovary syndrome, or PCOS, a common hormonal condition for which there is no standard test; only a constellation of symptoms can trigger a diagnosis. I was told I could have trouble getting pregnant and was given very little additional information, though internet research suggested I might be at greater risk for diabetes and cardiovascular problems later in life. I always knew I wanted children. I was devastated.

PCOS can be diagnosed if you have two of three symptoms: hyperandrogenism (an excess of the androgen hormones, which are associated with acne, male-pattern hair growth, insulin resistance and weight gain), irregular periods and ovarian cysts. I did not have hyperandrogenism or any of the related physical symptoms, but my periods had never been regular, and an ultrasound revealed my ovaries to have so many cysts, they looked like the craters on the moon.

I started trying to get pregnant in my late 20s, earlier than all my peers, in part because I had been told it might be hard for me. It wasn’t. I got pregnant within two months with my older daughter and conceived the first month I started trying the next time around. That second pregnancy ended in a miscarriage, and I wanted to know if I needed to start trying again immediately. I had my new obstetrician refer me to a gynecologist who was an expert in PCOS, unlike the doctor who originally gave me the diagnosis. (I left her practice because she had been so dismissive of my questions and concerns.)

“You don’t have it,” the expert told me,PHL63 after running a battery of tests. Even though my periods never ran on a strict 28-day schedule, I did ovulate, and the cysts on my ovaries were unexplained but benign. The irregular periods could have been caused by stress or overexercising. Even if I did have it, women without hyperandrogenism do not seem to have the same risk profile for future disease as women who do have hyperandrogenism. I was both completely relieved and a little angry. I spent years worrying about my fertility — including tears and sleepless nights when I was first diagnosed — for no reason.

I got pregnant again with my younger daughter six months after that visit in 2015 and forgot about the whole thing for a decade, until last month, when I saw a BBC article about influencers selling fake cures for PCOS — like dietary supplements, for which there is no evidence.

Calls for school crackdowns have mounted with reports of cyberbullying among adolescents and studies indicating that smartphones, which offer round-the-clock distraction and social media access, have hindered academic instruction and the mental health of children.

“There is no one standard test for PCOS,” said Dr. Rhoda Cobin, a clinical professor of endocrinology at the Icahn School of Medicine at Mount Sinai. “It’s not like you can say, oh, if your blood sugar’s over 200, you have diabetes or whatever. So it’s a constellation of symptoms and signs and history.” This helps explain why the malady is such fertile ground for influencer nonsense. Every expert I spoke to said underdiagnosis of PCOS is still a problem, and lots of women are unnecessarily suffering because of it.

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