Five questions about polycystic ovary syndrome, a little-known disease that affects one in seven women

“A common disorder, the leading cause of female infertility”This is how Inserm defines PCOS, polycystic ovary syndrome, which affects “one in seven women” but which still remains largely unknown, “70% of them do not know that they suffer from it”according to Eva Lecoq, herself affected by this hormonal disease. “I was diagnosed at 21, even though I had symptoms since I was 14.”says the young woman, now 26 years old. In 2022, with her sister Solène, she co-founded Sova, a start-up dedicated to supporting women affected by PCOS, between freeing up speech and developing food supplements.

This project transformed Eva Lecoq’s life : “I went from somewhere where I didn’t have my period, where I gained a lot of weight for no reason, to today where I have my period every month and I have almost no symptoms anymore. So of course, the PCOS hasn’t disappeared, it’s still a little bit there, but I’m coping with it much better.” With her, on this Sunday, September 1st, World Polycystic Ovary Syndrome Awareness Day, franceinfo is shining a spotlight on this hormonal disease, less well-known than endometriosis but nevertheless the number one cause 1 of infertility in women.

Acne, excessive hair growth, infertility…What are the symptoms of PCOS?

PCOS is “a hormonal disorder that affects between 7 and 15% of the female populationsays Eva Lecoq, This represents two millions of women in France”. This is a disorder “with which one is born and dies, which therefore cannot be cured”. PCOS causes excess testosterone production which in turn, “will cause a number of symptoms and create a lot of discomfort”explains the young entrepreneur with full knowledge of the facts, while emphasizing that “PCOS will not express itself in the same way in every woman”.

Among the main symptoms there are: “the absence of periods or irregularity of menstrual cycles”, “symptoms of hyperandrogenism such as acne, hair loss or significant hair growth in so-called masculine areas” or even “rapid and unexplained weight gain, or on the contrary difficulty losing weight, sugar cravings, chronic fatigue, anxiety, depression, low self-esteem”One in two women with PCOS will develop type 2 diabetes before the age of 40 and this pathology is the leading cause of female infertility.

Is PCOS easily diagnosed?

Between therapeutic wandering and lack of information, PCOS is still too rarely detected, “70% of women affected are not diagnosed”recalls Eva Lecoq. However, “It’s not that complicated to diagnose” she assures. Despite everything, it took the young woman seven years to put a name to her ailments and her journey with this disease is revealing. PCOS appeared very early in Eva Lecoq, “From my first period, quite simply, I didn’t have a cycle, she says. I had my period every two years from the age of 14 to 18.”

“Of course, when you’re a teenager and you don’t have your period, you ask yourself questions about your fertility.”

Eva Lecoq, co-founder of Sova

to franceinfo

“I was prescribed the pill, without being told about PCOS, regrets Eva Lecoq. And I had other symptoms like weight gain, sugar cravings, so I had eating disorders for six years. Later, I decided to stop taking the pill and I started to really get interested in this subject, we were talking about it a little bit on the networks in 2019 and I went to see a gynecologist. I was the one who told him the name of the disease and then I was diagnosed, at 21 years old. And when I was diagnosed, they just told me ‘you shouldn’t gain weight, you should even lose ten kilos and stay on the pill.”

A therapeutic void in the face of PCOS?

Today, “The most prescribed first-line treatment is the contraceptive pillexplains Eva Lecoq, because there is no dedicated treatment designed for PCOS yet”By allowing for better hormonal balance, the pill can reduce symptoms. But it has side effects and is not suitable for all women. “We suffered from the lack of information, regrets Eva Lecoq, recalling her and her sister’s experience, In France, we only had two or three articles on Inserm available to us. or Health Passport which quickly explain the pathology, but no solution on how we can act on it.”

Faced with the lack of solutions offered to them and two years after Eva’s diagnosis, the two sisters launched Sova in 2021. “Two years of research, of tests on myself, I was convinced both by what having a lifestyle adapted to this pathology and taking food supplements alongside it brought me”, says the young woman. But the dietary supplement that was good for him came from the United States and was eventually stopped by the laboratory. “During a discussion with my sister, she said to me ‘but it’s crazy that there isn’t a complete range dedicated to these women in France when it works. Why wouldn’t we just do it? ?’ And then we couldn’t sleep anymore and we started.”says the young entrepreneur.

“This allows women to better understand their pathology and to know how to act on it on a daily basis through their lifestyle.”

Eva Lecoq, co-founder of Sova

to franceinfo

Sova’s mission is to improve the well-being of women affected by PCOS, through two main activities: freeing up speech and producing food supplements. “We do a lot of education, details Eva Lecoq, We have a blog, a podcast and we publish every day on social networks.” Sova is now over 60 000 followers on Instagram and as many on TikTok. The two sisters also offer solutions : “Food supplements for PCOS are not intended to cure the pathology, but to improve well-being, relieve, reduce symptoms and above all improve daily comfort”, explains Eva Lecoq.

Awareness still too timid?

“We has awakened consciences, Eva Lecoq rejoices. Patients are better equipped to go see their healthcare professional and talk to them about PCOS.” The sisters also attend gynecology conferences, where professionals come to thank them. “to give them a new weapon in their bag, because they didn’t have much apart from the pill. They have the will to really better take care of PCOS patients.” Sova also intends to expand into other European countries, which gives Éva Lecoq hope. “a European awareness”.

“We are helping in some way to make everyone feel compelled to take this subject seriously.”

Eva Lecoq, co-founder of Sova

to franceinfo

Despite a currently favourable context for women’s health, with in particular the strong media coverage of endometriosis recently, “There is still a long way to go”recalls Éva Lecoq, who is delighted about the existence of a world PCOS day: “That day is an opportunity for everyone, whether they are concerned or not, to say to themselves ‘I have to talk about it’, ‘it has to be known’.”

Are you concerned about PCOS?

If in doubt or if one or more symptoms of PCOS are present, do not hesitate to speak to a gynecologist, “by mentioning PCOS and requesting further tests”advises Eva Lecoq. Sova’s site is full of information, including a 60-page ebook free pages on the disease. For the entrepreneur, it is important to “Don’t panic. It’s a bit hard to learn that you have a chronic lifelong pathology that can cause infertility problems, it can be distressing. But the good news is that we can really do something about it.”

“Today I live comfortably, so there is really no point in losing hope.”

Éva Lecoq, co-founder of Sova

to franceinfo

“You have to be indulgent with yourself, adds Eva Lecoq, and above all tell yourself that you are not alone.” World PCOS Day, every September 1st, is an opportunity to discuss the subject with other women. Two million French women are affected, but not all of them know it.