Design: Cross-sectional mixed-methods study design.

Setting: The electronic questionnaire was distributed to English-speaking, patient-led endometriosis support groups.

Patients or Participants: Members of three large online support groups for people with endometriosis: “r/Endo” and “r/Endometriosis” hosted on Reddit and Nancy’s Nook hosted on Facebook. Eligibility criteria included age 18 years of age or older, a proficiency in written and spoken English, and a self-reported history of endometriosis diagnosed by a healthcare provider.

Interventions: None.

Measurements and Main Results: Between February 2021 and June 2022, 1,565 women with endometriosis from 63 countries on 6 continents completed a survey composed of quantitative and qualitative questions. Questions included demographic characteristics, experiences with the endometriosis diagnostic process, and experiences with healthcare providers. Broken down by continent, participants reported length of time from symptom onset to endometriosis diagnosis ranging from 7.6-11.6 years, with a global average of 9.7 years (Figure 1, LINK). Women from Europe (77%), North America (76%), and South America (73%) pervasively reported experiencing dismissal from their physicians, while dismissal was less commonly described by participants from Asia (53%) and Africa (59%). When asked about sexism in healthcare, European (53%), North American (52%), and Oceanic (49%) participants reported experiencing sexism from their physicians, but this was less commonly reported by African (35%) and Asian (19%) participants.

Conclusion: Globally, women experience a considerable delay in being diagnosed with endometriosis. Women from around the world together engage with online support groups but report varying experiences with physicians depending on their geographical location.