In my mid-20s, a gynecologist recognized me with polycystic ovary syndrome, or PCOS, a typical hormonal situation for which there isn’t a normal check; solely a constellation of signs can set off a analysis. I used to be instructed I might have hassle getting pregnant and was given little or no extra data, although web analysis steered I could be at better threat for diabetes and cardiovascular issues later in life. I all the time knew I needed kids. I used to be devastated.
PCOS can be diagnosed in case you have two of three signs: hyperandrogenism (an extra of the androgen hormones, that are related to pimples, male-pattern hair development, insulin resistance and weight acquire), irregular intervals and ovarian cysts. I didn’t have hyperandrogenism or any of the associated bodily signs, however my intervals had by no means been common, and an ultrasound revealed my ovaries to have so many cysts, they appeared just like the craters on the moon.
I began attempting to get pregnant in my late 20s, sooner than all my friends, partially as a result of I had been instructed it could be arduous for me. It wasn’t. I obtained pregnant inside two months with my older daughter and conceived the primary month I began attempting the following time round. That second being pregnant resulted in a miscarriage, and I needed to know if I wanted to begin attempting once more instantly. I had my new obstetrician refer me to a gynecologist who was an knowledgeable in PCOS, not like the physician who initially gave me the analysis (I left her observe as a result of she had been so dismissive of my questions and considerations).
“You don’t have it,” the knowledgeable instructed me, after operating a battery of exams. Although my intervals by no means ran on a strict 28-day schedule, I did ovulate, and the cysts on my ovaries had been unexplained however benign. The irregular intervals might have been attributable to stress or overexercising. Even when I did have it, girls with out hyperandrogenism do not seem to have the same risk profile for future illness as girls who do have hyperandrogenism. I used to be each utterly relieved and a little bit offended. I spent years worrying about my fertility — together with tears and sleepless nights once I was first recognized — for no cause.
I obtained pregnant once more with my youthful daughter six months after that go to in 2015 and forgot about the entire thing for a decade, till final month, once I noticed a BBC article about influencers selling fake cures for PCOS — like dietary dietary supplements, for which there isn’t a proof.
“There isn’t a one normal check for PCOS,” mentioned Dr. Rhoda Cobin, a scientific professor of endocrinology on the Icahn Faculty of Drugs at Mount Sinai. “It’s not like you may say, oh, in case your blood sugar’s over 200, you will have diabetes or no matter. So it’s a constellation of signs and indicators and historical past.” This helps clarify why the illness is such fertile floor for influencer nonsense. Each knowledgeable I spoke to mentioned underdiagnosis of PCOS remains to be an issue, and many girls are unnecessarily struggling due to it.
However I used to be haunted by my very own expertise. It seems that overdiagnosis can be a problem, and an absence of high-quality proof on the syndrome is the foundation reason for each. In keeping with the most up-to-date international guidelines on PCOS, from 2023, whereas proof for analysis and administration of the situation has improved over time, it stays “usually low to average high quality. Considerably better analysis is now wanted on this uncared for, but widespread situation.”
A 2024 study of PCOS-related posts on TikTok, Instagram and Reddit confirmed {that a} “monetary battle of curiosity was current in 45 p.c of TikTok posts and 89 p.c of Instagram posts.” Influencers promoting weight-reduction plan plans — usually keto and carnivore-based schemes — to ameliorate PCOS signs are plentiful on social media. That’s even though “there isn’t a stable proof to recommend {that a} restrictive weight-reduction plan in the long run has any important impression on PCOS signs,” according to my colleague Alisha Haridasani Gupta.
Complicating issues additional, there was important controversy over what constitutes the syndrome. The diagnostic guidelines expanded in 2003 — just some years earlier than I used to be initially recognized — elevated the share of girls who could possibly be recognized with PCOS to twenty p.c from 5 p.c. “Together with extra girls in a diagnostic web shouldn’t be a value-free exercise,” Dr. Jane Wilcock and Dr. David Taylor wrote in a 2018 article for the British Journal of Basic Apply. “Every particular person will change from an individual with an issue to a affected person. We all know this adversely impacts folks.”
The rules have been tweaked through the years, and probably the most lately updated 2023 recommendations have added plenty of nuance again into the analysis, however confusion and disagreement nonetheless stay.
When there’s a hole in information on any girls’s well being difficulty, it leaves the door open for all method of scams. “As a result of conventional medication shouldn’t be assembly girls’s wants, they’re notably susceptible to those kinds of issues on-line,” mentioned Dr. Tessa Copp, a analysis fellow on the College of Sydney Faculty of Public Well being who research the overdiagnosis of PCOS. “And it type of stems again to the entire underrecognition, underappreciation and underfunding of girls’s well being extra broadly.”
Dr. Copp instructed me that in her analysis she has talked to many ladies whose relationships and fertility plans had been adversely affected by an incorrect PCOS analysis. As a result of they thought they’d have problem conceiving, some had infants earlier than they felt emotionally prepared, Dr. Copp mentioned, or took dangers with contraception that led to unintended pregnancies. On the similar time, when girls have extreme signs, having the analysis was “so validating and legitimizing and supplied them with a label to explain their expertise,” she mentioned.
However what else ought to girls, and their docs, know? Dr. Cobin instructed me {that a} PCOS analysis ought to be made rigorously, and particularly with some youngsters, docs ought to take a wait-and-see method. That’s as a result of plenty of the signs — irregular intervals, ovarian cysts, pimples and a rise in physique hair — could be a regular a part of feminine adolescence.
Irregular or missed intervals, for instance, can have a wide range of causes, together with excessive stress and disordered consuming. And there’s a vary of regular feminine hairiness, however as a result of girls are socialized to assume having nearly no physique hair is “female,” younger girls could also be nervous that there’s one thing incorrect with them when physique hair seems in new locations. “It’s completely crackers as a result of all you’re doing is you’re defining your norm as very slender one thing which someone on the web’s most likely given you,” Dr. Wilcock, who lately retired as a basic practitioner after 35 years of service, instructed me.
Whether or not or not you will have an official analysis within the close to time period, the person signs of PCOS may be handled, Dr. Cobin mentioned. Medication like tirzepatide and semaglutide can be utilized to deal with insulin resistance that’s associated to PCOS, contraception tablets can deal with the irregular intervals, and metformin can enhance ovulation for fertility issues.
Latest research have proven that women diagnosed with PCOS are simply as more likely to have kids as girls with out it, although they could take a bit longer to get pregnant and have fewer kids. Nonetheless, the concept that the syndrome is a fertility loss of life sentence is outdated. It’s a conclusion I got here to primarily based on a lack of awareness from my unique physician and an excessive amount of late-night net looking out in 2008. And it’s a worry that’s peddled by financially motivated, uncredentialed well being influencers in 2025. It doesn’t imply it’s true.
