For 12 years, Sophie endured painful periods, weight gain, depression, and fatigue. Diagnosed with polycystic ovary syndrome (PCOS), a common hormonal condition affecting one in 10 women, Sophie struggled to find effective medical help.
Frustrated, she decided to take matters into her own hands when Kourtney Simmang appeared on her Instagram feed. Kourtney promised to address the “root cause” of PCOS, despite no scientific consensus on what that cause might be. She offered a $3,600 package including lab tests, diet plans, supplements, and coaching. Sophie, desperate for a solution, signed up and spent even more on supplements through Kourtney’s affiliate links.
However, after almost a year, Sophie saw no improvement. “I left the program with a worse relationship to my body and food,” she said, feeling disheartened that she couldn’t improve her PCOS.
Dr. Jen Gunter, a respected gynecologist and women’s health educator, pointed out that Kourtney lacked the necessary qualifications to administer the tests she was selling. The tests had limited clinical value and no proven effectiveness.
Sophie’s story is not unique. Medical influencers, many with millions of followers, have been exploiting the lack of simple, reliable treatments for PCOS. They often present themselves as experts—“hormone coaches” or “nutritionists”—with minimal or questionable credentials.
The BBC World Service examined the most-watched PCOS-related videos on TikTok and Instagram in September and found that half of them shared misleading or false information. Up to 70% of women with PCOS have not been diagnosed, according to the World Health Organization (WHO), and even diagnosed women often struggle to find treatments that work.
Dr. Gunter warned, “Whenever there’s a gap in medicine, predators take advantage.”
Among the common false claims pushed by influencers are that PCOS can be cured with dietary supplements or restrictive diets like keto, that birth control worsens PCOS, and that mainstream treatments only suppress symptoms rather than addressing the “root cause.” In reality, there is no cure for PCOS, and while birth control can help many women manage symptoms, it does not cause PCOS.
A spokesperson for TikTok confirmed that the platform does not permit harmful misinformation but emphasized that Meta (which owns Instagram) allows health content with no restrictions, even if it’s misleading.
PCOS is a chronic hormonal condition affecting 8-13% of women globally. It can cause symptoms like irregular periods, excessive hair growth, and weight gain. It’s also a leading cause of infertility, but many women can get pregnant with the right treatment.
Women from around the world, including the UK, US, and Brazil, have turned to influencers like Tallene Hacatoryan for help. Tallene, a registered dietician with over two million followers, sells supplements and an app for weight loss, promoting a “natural” approach to healing. She warns against pharmaceutical treatments like birth control or metformin, which have been proven to be helpful for many women with PCOS.
One woman, Amy from Northern Ireland, followed Tallene’s advice to cut out gluten and dairy, despite the lack of evidence supporting this approach. Amy found it difficult and ultimately felt worse. “These people would make me feel worse about myself, leading me to buy more supplements or try more diets,” she said.
Dr. Gunter raised concerns that such diets could contribute to eating disorders, as they often promote unhealthy relationships with food. Tallene, in response, claimed that her supplements meet safety standards and that she provides evidence-based information about pharmaceuticals’ pros and cons.
However, Dr. Gunter emphasized the vulnerability of women with PCOS who feel helpless without proper treatment. Misleading advice can delay access to real medical care, exacerbating health issues like type 2 diabetes.
In Nigeria, Medlyn, a medical student, is working to reduce the stigma around PCOS. After unsuccessful attempts with diets and supplements, she now encourages other women to consult doctors for evidence-based treatments.
Sasha Ottey, founder of the US-based charity PCOS Challenge, noted that most women with PCOS can get pregnant with the right medical treatment. Dr. Gunter urged women struggling with PCOS to seek care from specialists like endocrinologists or obstetricians.
Sophie and her doctors are still trying to find the right treatment for her condition, hoping for a solution that works.
Update (December 12, 2024): This article has been updated to include a response from Tallene Hacatoryan, received after publication. It has also been amended to remove a statement claiming Hacatoryan recommended the keto diet for PCOS treatment.
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