“The more we talk about it, the less invisible we feel”: Polycystic Ovary Syndrome, a little-known hormonal disorder that is poisoning lives

Le syndrome des ovaires polykystiques concerne 1 femme sur 7 dans le monde (Illustration). Envato Elements – @gpointstudio

Alizée is a dancer and lives in Hérault, where Corinne, an editor, spends half of her time when she is in Montpellier. They do not know each other but they share one thing: a daily life marred by a pathology, polycystic ovary syndrome. Affecting one in seven women in the world, it results from a hormonal imbalance leading to many symptoms: hirsutism, acne, menstrual disorders… Through their years of diagnostic wandering and the impact of PCOS on their lives, they testify.

“The endocrinologist simply told me, 'You have polycystic ovarian syndrome. You'll just have trouble having children.'” At 33, Corinne learned that she had PCOS, a hormonal condition, the leading cause of female infertility, with multiple and variable symptoms. The diagnosis was made abruptly, after twenty years of medical wandering, marked by a lack of understanding of the causes of her ailments and the consultation of around twenty health professionals who focused on her weight gain, the first of her symptoms. Today, at 42, the freelance writer who divides her time between Montpellier and the Paris region, confides in her “disabling” syndrome, which has “totally changed the life path” that she had imagined.

It was during a lunch that a friend of her mother, a gynecologist, told her that her symptoms reminded her of PCOS. She had “never heard of it”.The diagnosis was made after three days at the Montpellier University Hospital. According to her endocrinologist, there was nothing to be done. She did not mention the symptoms surrounding her pathology, nor the fact that her tests revealed insulin resistance, which she would discover two years later.

Alizée, a 21-year-old professional dancer from Hérault, also has PCOS. She found out at the age of 19, the diagnosis refuting three years during which doctors had been talking about endometriosis.

Having irregular and painful periods, she had already consulted specialists before, including an endocrinologist. “The worst medical appointment of my life. She told me 'you're anorexic, a former bulimic, so I can't do anything for you anyway. As long as you don't eat, you won't get your period'”, she confides, specifying that she was cured at that time of the eating disorders (ED) she suffered from when she was younger.

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A syndrome that goes beyond infertility

From her adolescence, Corinne gained weight “for no reason”, suffered from irregular periods, insomnia, chronic fatigue, which today prevents her from working full time, excessive hairiness, has a depressive background… Thanks to the team of health professionals who support her today, she has managed to stabilize her weight and work on her mental health. It is for “the diseases that resulted” from her PCOS that she is being followed, the obesity and diabetes that she developed afterwards.

When we talk about PCOS we only talk about infertility while it is a grain of sand in what it represents. We are totally invisible and we are 1 in 7 women

At 19, Alizée, no longer able to stand her random periods and her acne, one of her main symptoms, decided to go see a GP who prescribed her a pill and an ultrasound. “It was no longer possible. When I do cabaret I wear fishnet tights and panties. I put in dry tampons because my period has already started in the middle of a show.”

A gynecologist at the Montpellier University Hospital finally made the diagnosis, surprised that it had never been mentioned given her symptoms. Especially since Alizée's mother also has PCOS. “I knew the general outline but nothing more, her mother never really talked about it, I told myself I'm going to take the pill like that, we don't talk about it anymore and it's going to be difficult to have children. Now I realize how much it's not just that and how it impacts me on a daily basis,” she says, confiding that she is tired all the time. “But my reflex is not to tell myself that it's my PCOS, because we've looked elsewhere so much.”

“It has completely turned my professional and private life upside down”

“We've always put everything on my lifestyle. I skip two meals out of three, I don't sleep due to lack of time, it feeds my PCOS, I know it. This summer I had problems with the pill. I could never take it at the same time because I was on tour. It's starting to affect my morale,” she says, adding that she had suicidal thoughts. “Several doctors told me that the solution was to stop what I'm doing. That's unthinkable for me. I need help, not to be judged.”

In 2014, Corinne decided to stop taking the pill that she had been taking for years. “It was horrible. I didn't understand it right away, but it masked my symptoms well. I gained a lot of weight, my body hair and fatigue were exacerbated, and I didn't have my periods for a year or two. Then they became hemorrhagic, with pain that made me cry. Sometimes I have them for several months in a row. It completely turned my professional life upside down and private.”

“Others should not go through what I went through.” At 40, after a difficult period marked by the impossibility of having children, Corinne finds meaning in her life in this mission. Thanks to the Asso'SOPK association, she dared to confide. “Before, I was ashamed to talk about my pathology. But the more we talk about it, the less invisible we feel.”

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