Endometriosis: why despite campaigns, patients still wait 7 years before the correct diagnosis?

in collaboration with

Céline Ferrara (Operations Director at Endomind France)

On May 27, the ministry launched an endometriosis awareness campaign in healthcare settings (pharmacies and parapharmacies, shopping centers, local shops, etc.). But is it still useful to raise awareness about this widely publicized disease? Why, despite the various campaigns, does the care pathway seem so problematic for patients?

Endometriosis: a difficult diagnosis

A chronic inflammatory disease that affects women of childbearing age, endometriosis is a pathology characterized by the development, outside the uterus, of tissue similar to the uterine lining. These tissues generate significant pain and sometimes colonize other organs such as the ovaries, bladder, vagina or rectum. Sometimes even ligaments or nerves.

The symptoms therefore vary from one woman to another, which makes its diagnosis difficult. “It is customary to say that there are as many cases of endometriosis as there are women affected by the disease. confirms Céline Ferrara, director of operations at the Endomind association.

Disabling symptoms in everyday life

Among the symptoms that characterize endometriosis, there is significant pain during periods, but sometimes also outside periods. Other signs are deep pain during sexual intercourse, urinary problems, pain during defecation, infertility… In endometriosis, there is also no correlation between the importance of the symptoms and the extent lesions, which also makes diagnosis of the disease difficult.

This difficult diagnosis could therefore partly explain the diagnostic wandering of patients but not only… “Another problem: for some health professionals, having pain outside of cycles automatically excludes endometriosis, although this is not the case. recalls Céline Ferrara.

A trivialization of period-related pain

“Pain is also still too often trivialized in families: some women are convinced that pain is normal, during periods. There is also a taboo that persists around the menstrual cycle and patients do not always know when the pain is pathological and it is necessary to consult” admits Céline Ferrara.

However, “itThey are women who are disabled by illness in their everyday lives, at work…” recalls the operations director of Endomind.

Diagnostic wandering lasts seven years, on average

“VSsome women are put under pill to calm their pain, they only realize that they have endometriosis when they want to have children. During this time, the disease had time to progress and worsen. adds Céline Ferrara.

All these reasons explain the duration of diagnostic wandering to which these women are victims, which lasts approximately seven to ten years.

Better inform patients and better train doctors

The campaign therefore aims to break down these barriers around the disease among patients, but also among healthcare professionals. It aims to encourage them to learn more about the disease and to join dedicated regional networks, responsible for caring for patients suspected of being affected by endometriosis.

The objective is to improve the training of all health professionals and not to rely on a few experts. “The idea of ​​setting up expert centers is no longer relevant.” explains Endomind’s operations director. “Setting up five large centers specializing in endometriosis throughout the country risked not only creating significant treatment delays, but also a diversion of the patients concerned, who number between two and four million.

By creating regional sectors with peer training for health professionals, it will be more effective to care for more women, according to Céline Ferrara. “The creation of a territorial network of trained and qualified professionals is one of the aims of the endometriosis strategy dating from 2021. By implementing this type of care, women will have a greater chance of being diagnosed before their condition does not worsen because not all require treatment by an endometriosis specialist: consultation with an endometriosis specialist. gynecologist trained city staff, who will take care of the illness, may be enough” she concludes.

Slide: 10 misconceptions about endometriosis