PCOS: what is this little-known hormonal disease that affects one in ten women?

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Hair loss, back pain, infertility… The list of symptoms is as long as it is heterogeneous. The cause ? Polycystic ovary syndrome (PCOS), a hormonal disease that affects one in ten women worldwide. Thursday, September 1 is a day dedicated to awareness and prevention of this female disease, unknown and without treatment.

“The announcement was hyper violent”. In early May 2022, polycystic ovary syndrome (PCOS) was diagnosed in Lucie, a 23-year-old student. When she thought her back was blocked, her osteopath prescribed her a pelvic ultrasound suspecting a problem with the ovaries.

“I did not believe it at all, she says. But on examination, my gynecologist saw all the follicles in my ovaries, dirt I call that, and the announcement fell”.

Worldwide, one in ten women is affected by this disease. However, she remains very unknown to society and even to the scientific world: “I have the impression of being in the same situation as women who had endometriosis before we understood what it was” , sighs the student. Indeed, “PCOS is a syndrome whose origin is unknown to date, despite its prevalence”, explains Nour Mimouni, doctor in neurosciences at Inserm and specialist in PCOS.

Hair loss, infertility, back pain…

From a medical point of view, PCOS is the cause of a hormonal imbalance that has three major characteristics: “a presence of small follicles in the ovaries”, “an increase in testosterone levels”, “problems in the menstrual cycle. All these changes involve many symptoms, extremely heterogeneous and different depending on the woman.

“After my diagnosis, I realized that I had had certain symptoms for years, although I attributed them to puberty,” explains Lucie. For example: “hair loss”, “weight change”, “acne”.

Also, one of the most debilitating symptoms for some women: infertility. According to the Esp’OPK association, 75% of the women concerned have cases of infertility. But Nour Mimouni wants to be reassuring. “Many patients have a clinical picture that does not lead to infertility”. For Lucie, who does not want children, the problem is elsewhere: “I will have this disease all my life so I need to have answers other than knowing if I will be able to have children”.

​Complex syndrome, no treatment

PCOS being a complex syndrome, with multiple symptoms, research is difficult to advance. “In 2003, there was a worldwide scientific consensus to have a complete clinical and biological diagnosis”, explains the researcher.

For a long time, scientists believed that it was a disease that only affected the ovaries, but thanks to a French study, they now know that there is a hormonal imbalance which “is also accompanied by a disturbance at the level of the brain”.

For now, no treatment has been found, “but research is underway” according to Nour Mimouni. The only solution currently: treat the symptoms. “For my back pain, my midwife put me back on the pill, but we don’t know if it will work,” says Lucie.

This Thursday, September 1, several associations, supported by Inserm, are meeting in Paris to raise awareness of PCOS and raise donations for research.

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