Pathway to Endometriosis Diagnosis in South Australia: A Qualitative Study

Endometriosis is a significant and prevalent health issue. Delayed diagnosis is common and the associated delay to treatment is associated with high socioeconomic and personal costs including chronic pain, infertility and reduced quality of life. There is a lack of studies documenting endometriosis pathways in Australia.

To explore lived experiences of individuals with endometriosis in South Australia and identify perceived barriers to timely diagnosis.

Semi-structured interviews were conducted with 50 participants aged over 18 years living in South Australia with a surgical diagnosis of endometriosis and data was analysed using reflexive thematic analysis.

Participants reported significant delays between the onset of symptoms and their diagnosis. Barriers were identified at personal and systemic levels. Personal barriers include societal and self-normalisation of symptoms and stigma associated with discussing menstrual health. Systemic hurdles include symptom dismissal and insufficient endometriosis education within healthcare and community settings. These barriers significantly hinder equitable and empathetic healthcare access. Diagnosis delivery is a key point in the endometriosis care pathway and must be conducted thoroughly and empathetically by health professionals with a patient-centred focus.

This study highlights the need to improve care pathways for the timely recognition and management of persistent pelvic pain. In patients presenting with chronic pelvic pain, endometriosis should be considered as part of the differential diagnosis. Results call for multi-faceted improvements in technology, advocacy, and education for students and health practitioners to improve timely diagnosis and patient-centred outcomes. We suggest re-orientating the healthcare system to centre the individual as the expert in their own journey, fostering a more patient-centred approach.