Endometriosis: patients face a wall of misunderstanding

Endometriosis is a debilitating and painful gynecological disease due to abnormal development of the uterine lining. It affects 180 million women worldwide, more than one in ten in France. Paradoxically, this disease is little known or even taboo in our society. How to explain it? The answers of Dr. Chrysoula Zacharopoulou, gynecologist surgeon and specialist of endometriosis at the Tenon Hospital in the Department of Gynecology, Obstetrics and Reproductive Medicine, who prefaced Tabua Disease of Marie-Anne Mormina.

Interview by Laurine Thiodet

Why is this disease still poorly known to doctors?

Dr. Chrysoula Zacharopoulou: Endometriosis affects 180 million women worldwide - so it's not a rare disease! - but there is no solid epidemiological study either in France or in the world. It therefore remains a relatively "enigmatic" disease for both patients and physicians who should be more aware of it.

Its exact causes are not really known, but some risk factors have been identified. It appears to develop more frequently in:

- Women with early early menses, short and irregular cycles, heavy menstrual periods,

- Women with a family history of first degree (mother or mother) sister with endometriosis). The risk is about six times higher for the sisters of the patients affected.

Why are women diagnosed so long after their first consultation?

Dr. Chrysoula Zacharopoulou: Between the appearance of the first symptoms and the moment of diagnosis, it takes on average seven long years!

Patients are slow to consult because they do not immediately understand that the symptoms they feel are abnormal. They consider these rules-related pains to be normal, even if they sometimes suffer so much that they can not go to work or their daily habits are altered. This inability to make a clear distinction between "normal" and "abnormal" menstruation is the primary cause of this delay in diagnosis.

Then there is the embarrassment of talking openly to their loved ones or doctors about such an intimate subject. The fear of being misunderstood, considered hypochondriacal or "hysterical" often leads them to suffer in silence and to wait before consulting.

At the same time, when they start talking about it, they are sometimes faced with doctors who tend to minimize their symptoms or consider them as depressed women, exaggerating their pain.GPs usually prescribe a pill that will eventually hide the symptoms of the disease without a diagnosis has been established. And when examinations are requested, endometriosis is often not diagnosed because radiologists are not always trained or accustomed to this disease.

What is the impact of endometriosis on women's lives?

Dr. Chrysoula Zacharopoulou: This disease greatly affects the quality of life of patients with a major psychological, familial and socio-economic impact.

Many of them still face a wall of incomprehension in their professional environment. Sometimes they lose their jobs because this illness leads to repeated absences, creating a climate of prejudices between colleagues. As for their hierarchy, she does not understand, often by simple ignorance, what lives a woman with endometriosis.

This misunderstanding is not limited to the professional environment but is also found within the couple and in the circle of loved ones. Women who suffer from endometriosis are, because of their pain, constantly penalized in their daily activities and have more difficulties to create a social bond.

Their life as a couple is often imbued with a feeling of guilt for not being able to live a physical relationship in harmony with their partner, not being able to share pleasure.

There is also the inability for some women to conceive a child. For those who have had little or no relationship, there is often the fear of being rejected. Many men, when faced with a woman who feels pain at the time of intercourse, are outraged in their pride and have an attitude of rejection because they do not know how to handle the situation. And this all the more at the beginning of the relationship.

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