Endometriosis, how the disease accentuates the gender-gap in social and working life

Endometriosis affects between 1.8 million and 3 million women in Italy and about 10% of the world's female population of childbearing age, yet considering the diagnostic delay - which even today can easily be as much as 8-10 years - one would be forgiven for describing it as a partly 'forgotten' disease. Certainly, a disease that can have a major impact on the 'gender gap' also in terms of social and working life, as well as intimacy.

We are talking about a chronic, inflammatory, oestrogen-dependent disease of uncertain genesis and often asymptomatic for years until it makes itself felt. The prevalence of endometriosis - a condition characterised by the growth of endometrial-like tissue outside the uterus - is estimated to be between 5% and 10% in the general female population of reproductive age, but may affect 30%-50% of women with infertility, 50% of those with chronic pelvic pain, and 65-75% of adolescents with pelvic pain symptoms. It may persist beyond the age of 40 and symptoms may continue even after menopause.

And yet, this is how we arrive at the threshold of World Endometriosis Day on 28 March: with some progress but with the awareness that there is a long way to go. The same estimate of the undeclared which - in the absence of a national registry on endometriosis - would bring the cases from the 1.8 million diagnoses certified by the Istituto Superiore di Sanità to as many as 3 million, considering the young and women still unaware, gives the pulse of a need for care that is still largely unsatisfied. Also in terms of the psychological burden, with high rates of anxiety, depression and stress, which contribute to a reduced quality of life and an impairment of sexuality and intimate relations.

The most recent and significant milestone in Italia was the inclusion of the disease in the new National Chronicity Plan, approved by the State-Regions Conference last autumn. A Plan that turns the spotlight on the Care Pact, called upon to involve patients and caregivers in the care process, including lifestyles and disease management. But for endometriosis in particular, it calls for the activation of regional reference centres - currently largely absent - dedicated to diagnosis and treatment, with the launch of multidisciplinary pathways in which gynaecologists are joined by nutritionists and psychologists. And this is the necessary step that all regions are called upon to take, also to support women affected by the disease in carrying out a normal social, emotional and working life.

The Plan also prescribes pressing the accelerator on communication, with the launch of campaigns aimed at improving the recognition of symptoms to significantly shorten the diagnostic delay. Hence the importance of initiatives run by the Third Sector, such as that of the Endometriosis Project Association (Ape-Odv), in the field for 20 years and promoter, among other things, of 'The Flowers of Awareness': on 28 and 29 March, Ape volunteers will meet citizens with pink gerberas and sunflower seeds in 40 Italian squares. The donations collected will then be used to train health professionals, who will be added to the 340 gynaecologists, radiologists and mental health professionals already 'educated' in the necessary multidisciplinary approach to the disease.