Unqualified Influencers Exploit Women with PCOS Through False Cures and Misinformation

For 12 years, Sophie endured painful periods, weight gain, depression, and fatigue. Despite being diagnosed with polycystic ovary syndrome (PCOS), a hormonal condition affecting approximately one in 10 women globally, she struggled to find effective medical help.

Feeling desperate, Sophie turned to social media where she discovered Kourtney Simmang, an Instagram influencer who promised to treat the “root cause” of PCOS—despite researchers having not identified one. Simmang’s program came with a hefty price tag: $3,600 for laboratory tests, a dietary and supplement plan, and coaching services. Sophie invested in the program, paying hundreds of additional dollars for supplements through Simmang’s affiliate links.

Dr. Jen Gunter, a gynecologist and women’s health educator, criticized Simmang’s approach, stating she wasn’t qualified to order the tests she was selling and that they had limited clinical value. After nearly a year following Simmang’s regimen without improvement, Sophie abandoned the program.

“I left the programme with a worse relationship to my body and food, feeling that I didn’t have the capacity to improve my PCOS,” Sophie said. Simmang did not respond to requests for comment.

The BBC World Service recently tracked the most-watched videos with a “PCOS” hashtag on TikTok and Instagram during September and found that half contained false information. This investigation revealed a troubling pattern: medically unqualified influencers—many with over a million followers—are exploiting the lack of straightforward medical solutions for PCOS by positioning themselves as experts and marketing fake cures.

Many of these self-proclaimed experts describe themselves as “nutritionists” or “hormone coaches,” credentials that can be obtained through brief online courses. Their common false claims include assertions that PCOS can be cured with dietary supplements or specific diets like keto, that birth control pills cause or worsen PCOS, and that mainstream medications only suppress symptoms without addressing the supposed “root cause.”

Medical experts refute these claims. Highly restricted calorie diets show no positive effect on PCOS symptoms, and the keto diet may actually exacerbate the condition. Birth control pills do not cause PCOS and help many women manage their symptoms, though they aren’t effective for everyone. Most importantly, there is no known root cause for PCOS, and consequently, no cure.

According to the World Health Organization, up to 70% of women with PCOS worldwide remain undiagnosed. Even when diagnosed, many struggle to find treatments that work effectively for their symptoms.

“Whenever there’s a gap in medicine, predators take advantage,” Dr. Gunter explained.

The BBC spoke with 14 women across six countries—Kenya, Nigeria, Brazil, the United Kingdom, the United States, and Australia—who tried products promoted by various influencers. Nearly all mentioned Tallene Hacatoryan, who has amassed more than two million followers across TikTok and Instagram.

Hacatoryan, a registered dietician, sells supplements for $219 and access to her weight loss app for $29 monthly. She often warns against pharmaceutical treatments like birth control pills or metformin—both proven helpful for many PCOS patients—while encouraging followers to heal “naturally” with her supplements. Her content emphasizes weight concerns and what she calls “PCOS belly,” referring to abdominal fat.

Amy from Northern Ireland followed some of Hacatoryan’s advice after struggling to get adequate help through her general practitioner. “PCOS belly was exactly where my insecurities were,” she said.

Hacatoryan recommends reducing gluten and dairy consumption, though there’s no evidence these dietary changes specifically benefit PCOS patients. For Amy, the restrictive diet was difficult to maintain, leading to feelings of failure.

“Looking back, I wasn’t as heavy then, but these people would make me feel worse, and you’d want to do more diets, or buy more supplements,” Amy recalled.

Dr. Gunter warned that such influencer diet plans could “absolutely create an eating disorder.”

In response to the BBC’s reporting, Hacatoryan stated that her supplements meet high safety and quality standards. She said she doesn’t discourage pharmaceutical use but provides “evidence-based information about their potential benefits and side effects.” She added that her approach emphasizes self-compassion and body positivity, claiming it has “positively impacted thousands of women.”

In Nigeria, medical student Medlyn is working to reduce stigma surrounding PCOS after her own unsuccessful attempts with various diets and supplements. She now encourages other women to consult doctors and embrace evidence-based treatments.

“When you’re diagnosed with PCOS it comes with so much stigma. People think you’re lazy, you don’t look after yourself, that we can’t get pregnant,” she explained. “So nobody wants to date you, nobody wants to marry you.”

Sasha Ottey from the US-based charity PCOS Challenge offered reassurance: “Women with PCOS have the same number of children as those without. You just might need a bit of help getting there.”

For women not receiving adequate care from general practitioners, Dr. Gunter recommends seeking specialists. “Some women need a trusted endocrinologist or a trusted obstetrics and gynecology specialist for that next level of management.”

Meanwhile, Sophie continues working with her doctors to find an effective treatment for her condition.