What is PCOS, the leading cause of female infertility? – She

A few years ago, the world seemed to discover endometriosis, an endometrial disease that would affect 1.5 to 2.5 million women in France, causing disabling pain and fertility problems. Another female disease, also unknown despite the number of people affected, is beginning to make people talk about it: polycystic ovary syndrome (PCOS).

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But the lack of information and training of doctors on this subject often leaves patients alone with their diagnosis, when it is finally made. We asked Kelly Lescure, founder of the Esp’OPK association, to answer our questions.

SHE. Can you just explain to us what PCOS is?

Kelly Lescure. It is the most widespread endocrine pathology in the world. In France, it would affect one in seven women – in the United States, the latest studies speak of one in five women. This syndrome, whether or not we have it in us (we do not catch it as a disease, but we potentially develop it) causes a hormonal imbalance: the women who suffer from it have too many male hormones, which means that their ovaries produce more follicles than normal (15 to 20 per ovary, compared to 4 to 5 in a healthy woman), and these follicles fail to mature – which is what makes the ovaries look ‘polycystic’, even though they are not cysts, the name is misleading. This causes menstrual disorders and difficulty conceiving, but also other symptoms, including hyperandrogenism, which results in exacerbated acne, hyperpilosity, overweight, anxiety and depressive disorders. In the long term, there can be complications if the syndrome is not taken care of: diabetes, cholesterol, thyroid disorders, even cancers.

SHE. How do we explain that this syndrome, which affects so many women, is so little known?

Kelly Lescure. There are several explanations for this. The first is that it is difficult to diagnose PCOS, it is generally a long time before knowing that one has it since there is not a particular symptom but a spectrum of symptoms, which moreover are common to other pathologies. It is often when one begins to have a project of child that the diagnosis arrives, when one has difficulties in procreating and that one leans on the explanatory symptoms. Another reason is that young women who are now of childbearing age are part of the « pill generation », they took this contraception very early and for a very long time. However, hormonal contraception rebalances the system and hides the symptoms of PCOS (including acne, irregular cycles, mood disorders). Now, more and more young women are refusing the pill and are confronted with their symptoms at a younger age, so it is only just beginning to be talked about. And then, of course, the fact that it is a female pathology plays a big role – in this regard, the journey of victims of endometriosis has opened many doors for us.

SHE. If you have PCOS, does that mean you will never have children naturally?

Kelly Lescure. Doctors tend to dramatize the infertility side a lot, partly because, as I told you, it’s often when the desire for a child manifests itself that PCOS is detected. Indeed, there is a potential infertility that develops, in 75% of cases. It will be more or less heavy, but despite this, among these 75%, it is estimated that one in three women still gets pregnant spontaneously, even if it can take a little longer. And that leaves 25% of patients who become pregnant without having to ask questions! For the others, we now have the means to support the child project thanks to hormonal treatments, which often make it possible to avoid the need to resort to PMA.

Being pregnant under PCOS, however, requires more follow-up, because there is an increased risk, in early pregnancy, of miscarriages and pre-eclampsia. But overall, without any other pathology, it is far from impossible to get pregnant with PCOS! There is a very toxic discourse around this question, it is frightening and guilt-inducing when it is the best managed aspect of our pathology. It is important to emphasize that we should not focus on fertility (remember that this is not an ovarian disease but a hormonal pathology), but take care of the syndrome as a whole: in addition, it will necessarily help for the design.

SHE. How is it diagnosed?

Kelly Lescure. PCOS is often diagnosed by elimination, since the symptoms may indicate other disorders. But now, we rely on what are called the Rotterdam criteria: the presence of « polycystic » ovaries on ultrasound (15 to 20 follicles), clinical or biological hyperandrogenism (noted by a health professional, a blood and/or hormonal test) and irregular cycles (less than 21 days or more than 35). When at least 2 of these 3 criteria are met, PCOS can be diagnosed. But you have to be vigilant, especially with regard to the criterion concerning menstrual cycles: a punctual disorder is not alarming, and we do not retain this criterion in young girls who have just had their first period, it is normal that their cycle takes time to regulate.

SHE. The psychological symptoms of PCOS are also misunderstood. Can you tell us more?

Kelly Lescure. It is a hormonal pathology. So like a pregnant or menstruating woman, our hormones vary enormously, in a rather anarchic way… Hence mood swings, anxiety, anger, even depression. And then there is the whole psycho-social aspect of PCOS which is very heavy: the shame of hyperpilosity, acne, loss of libido, pain during intercourse, the difficulties in the life of a couple caused by mood swings… The suicide rate is 7 times higher in women with PCOS than in the average population. This should alert the public authorities, but unfortunately, too little is said about it.

SHE. Is it curable?

Kelly Lescure. At the moment, there is no treatment that can cure PCOS. On the other hand, it can be silenced, anticipating complications by avoiding developing diabetes or cancer, for example by triggering menstruation 4 or 5 times a year. We must keep in mind that it is multifactorial and it is a pathology that is not at all linear: when one is concerned, one is born with PCOS. It can declare itself or not, go into silence, fade, come back, in adolescence or much later… For some, it’s genetic, for others, it develops because of the environment: stress, emotional shocks, endocrine disruptors play a lot.

Several methods can be put in place by the patient suffering from PCOS. It is even possible, in some cases, not always, to reverse the process and live with a pathology that is not expressed. First, there is the drug route, which most of the time goes through the pill and which masks the visible effects of PCOS (in particular hyperpilosity, irregular cycles and acne). Other drugs, such as Androcure, can be prescribed – but be aware that there are serious side effects, and that a few years ago there was a controversy over brain tumors caused by Androcura.

And then there is the natural path, obviously more complicated and longer to put in place, which involves lots of small and big changes in daily life: eliminating endocrine disruptors from the house, food, cosmetics and clothes, favoring a certain type of diet, taking care of your psychological well-being by avoiding excessive stress factors… It is necessary, when you are diagnosed, to look into your diet. In any case, these are changes that will have to be kept for life. But I insist: all this must be done with competent health professionals, at the risk of aggravating the situation, or even developing other disorders, such as eating disorders. I see a lot of influencers saying they cure PCOS, but that’s not possible.

SHE. Do you think there is a problem with the management of PCOS, on the medical side and at the level of the public authorities?

Kelly Lescure. We’re starting to talk about it a little more, because we’re diagnosing it better than before – even though it’s estimated that 50% of women who suffer from it are still undiagnosed. There is also a « peak » of patients with PCOS, for reasons that are still unclear: the last decades have exposed us to a lot of endocrine disruptors, which has awakened many dormant syndromes, and the younger generations are taking more control of their health, young women are less afraid to stand up to a doctor who would tell them that their feelings are not valid, that the symptoms are “in the head”.

Where the shoe pinches is that PCOS is overlooked in gynecology programs, and doctors are only offered two solutions: the pill for women who have no desire for children, PMA for those who want it. But none of these solutions are permanent or really cure the symptoms. There is a lot of work in terms of prevention, information, whether among the public concerned, but also in the school and business world: PCOS has repercussions on daily life and can be disabling for work. , it is important to make employers aware of this. Finally, in terms of research, it is dramatic. Last year, less than 0.1% of research funding worldwide was for PCOS. That’s less than $500,000 worldwide.