Endometriosis: How advocacy, awareness and algorithms could shorten the long wait for diagnosis and treatment

Endometriosis affects an estimated 200 million people worldwide. Despite its prevalence, those living with the disease often wait an average of 7.5 years between start of symptoms and diagnosis. This delay is due to a variety of reasons, including medical dismissal, a low prioritization of the condition and its overall misrepresentation in research funding, policy and media.

Although often represented as a women’s reproductive disease, endometriosis also appears in people who have had hysterectomies, transgender men, genderfluid and non-binary people, pre-menstrual and post-menopausal people, and in rare cases, cisgender men.

Its symptoms commonly include pain with menstruation, as well as chronic pain, infertility, pain with sexual intercourse, fatigue and more. Despite this full-body impact on one’s quality of life, endometriosis is commonly associated with just having “bad periods.”

We are four authors from three countries looking at different aspects of endometriosis diagnosis, awareness and patient advocacy. This article emerges from a joint online presentation of our research looking at potential ways to improve awareness and patient care, and promote faster diagnosis.

Our methods include social scientific and qualitative research including interviews, surveys, focus groups, participant observations and collaborations with people living with endometriosis. We identified some clear changes that are needed to promote awareness of the disease, and subsequently reduce diagnostic timelines.