Influencers selling fake cures for polycystic ovary syndrome

Up to 70% of women with PCOS worldwide have not been diagnosed, according to the World Health Organization (WHO), and even when diagnosed, women struggle to find treatments that work.

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

The main false or misleading claims shared by these influencers include:

There is no evidence that highly restricted calorie diets have any positive effect, and the keto diet may make symptoms worse. Birth control pills do not cause PCOS and in fact help many women, though they don’t work for everyone. There is no known root cause for PCOS and there is no cure.

A spokesperson for TikTok said the company does not allow misleading or false content on the platform that may cause significant harm.

A spokesperson for Meta said user content on women’s health is allowed on the platform with “no restrictions”. The company said it consulted with third parties to debunk health misinformation.

In Nigeria, Medlyn, a medical student, is trying to tackle some of the shame surrounding PCOS. After trying diets and supplements to no avail, she now encourages other women to consult with their doctors and embrace evidence-based treatment.

“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 said. “So nobody wants to date you, nobody wants to marry you.”

But she is now embracing some of her PCOS features. “It’s been a hard journey to accept my PCOS, my hair, my weight,” she said. “These things make me different.”

Sasha Ottey of the US-based charity PCOS Challenge said medical treatment usually enables people with the condition to get pregnant.

“Women with PCOS have the same number of children as those without,” she said. “You just might need a bit of help getting there.”

Dr Gunter said that women who aren’t getting help from a general practitioner should ask to see a specialist.

“Some women need a trusted endocrinologist or a trusted obstetrics and gynaecology specialist for that next level of management.”

Sophie and her doctors are still trying out possible treatments, looking for one that works for her.