Irregular cycles, acne, excessive hairiness, overweight, hair loss: symptoms often described as “trivial” when they appear in adolescence. And yet, they might hide a much more complex and difficult to diagnose disease. Unknown to the general public, polycystic ovary syndrome, better known by the acronym PCOS, is the most common hormonal pathology in women of childbearing age. One in 10 women would be affected, 50% of them unknowingly. It is also the leading cause of female infertility according to Inserm.
Diagnosed at 15, Ophelia did not really assess the risks. “I didn’t even think regarding it, I didn’t get followed more than that, she apologizes. Except that 10 years later, the balance showed “25 kilos more” and the symptoms were “increasingly present” in his daily life. “I really understood when I wanted to have children.“At 22, she started a PMA (medically assisted procreation) program which she quickly abandoned. “At that age, we are really not equipped to live that.“Far from any denial, she talks regarding her future. That is sure “the impossibility of having children because of this illness. Mentally, I am preparing for it.”
Beyond the symptoms, polycystic ovary syndrome has an impact on personal life. “Mental health is impacted. Undoubtedly one of the consequences of the hormonal variations caused by this disease. The rate of depression is seven times higher in these patients than in the general population. Also the suicide rate laments Ophelia.
If the exact origins are little known, PCOS would be multifactorial. “This disorder is due to a hormonal imbalance in the pituitary and ovaries”, says Dr. Virginie Castera, head of the endocrinology department at Saint-Joseph hospital.
The definition of this endocrine disease is the association of signs of hyperandrogenism, that is to say, excess of male hormones, clinical or biological which is characterized by excessive hairiness, acne, sometimes a castling voice, male-pattern hair loss. The other diagnostic criteria are the observation of excess follicles (cysts) on the ovaries and the absence of menstruation or very spaced menses.
“It reveals itself at puberty before evolving towards the age of 50”
“It is a progressive disease during life. It is determined in utero. We are born with PCOS. It is revealed at puberty before evolving around the age of 50warns the specialist. In the absence of follow-up it can lead to an aggravation. This disease is a breeding ground for the development of a metabolic syndrome, such as diabetes, hypertension and lipid disorders. It is associated in 80% of cases with weight problems.
Against the symptoms of polycystic ovary syndrome, a multidisciplinary approach is recommended. “In first intention, we often put patients on the contraceptive pill in order to regulate the menstrual cycle, to reduce the level of androgen hormones and to reduce the associated symptoms. Among other measures, dietary and dermatological management. For example, laser sessions for hair growth can be suggested. In some cases, the implementation of diabetes treatment is considered. Women who wish can also benefit from appointments with a psychologist.”
Now 31 years old, Ophélie continues her fight: to make this disease known and recognized. In 2021, she created an association “Asso’SOPK”. It organizes conferences and works with healthcare establishments with the aim of setting up dedicated pathways. The latest, the day hospital reserved for women with SPOK that has just opened the Saint-Joseph hospital in Marseille. “The multidisciplinary consultations take place in the morning and discussion groups are organized in the followingnoon”, says Dr Castera, head of this unit.
“In this disease, there is a slightly shameful side. Women sometimes prefer to remain wandering. They must know that there are solutions. Talking regarding it is already a step towards improvement.” This is, in any case, the message that the two women will deliver on April 5, during a conference.
See you April 5
As part of the recent opening of the PCOS center, the Asso-Sopk association and the Saint-Joseph hospital in Marseille are organizing an information meeting. It is accessible to all and is led by Vanessa Lubin, endocrinologist coordinator of the project and member of the scientific committee of the association.
April 5 from 2 p.m. in the Robert de Vernejoul Auditorium of Saint Joseph Hospital. Registration on 04 91 80 67 24.
