The clinical presentation, investigation, and management of women diagnosed with endometriosis in Australian general practices, 2011–2021: an open cohort study

Objective: To examine the presentation, investigation, and clinical management of women diagnosed with endometriosis in Australian general practices during 2011–2021. 

Study design: Open cohort study; analysis of MedicineInsight data. 

Setting, participants: Women aged 14–49 years who were active patients at Australian general practices participating in MedicineInsight and were diagnosed with endometriosis at these practices, 1 January 2011 – 31 December 2021. 

Main outcome measures: The number of women with first documented diagnoses of endometriosis in general practices and the annual age-standardised prevalence; documented symptoms prior to documented endometriosis diagnosis; time from initial symptoms to diagnosis; general practitioner requests for diagnostic investigations and prescribing of medications. 

Results: First diagnoses of endometriosis at their regular general practices were recorded for 19 786 women during 2011–2021; the annual age-standardised prevalence increased from 1.78 per 100 women in 2011 to 2.86 per 100 women in 2021. At least one symptom was documented prior to diagnosis for 13 202 women (66.7%), including 8073 (40.8%) with pelvic pain and 4371 (22.1%) with dysmenorrhea. The median time from first symptom documentation to first documented endometriosis diagnosis was 2.5 years (interquartile range, 0.9–5.6 years). The proportion of women for whom general practitioners requested pelvic ultrasound prior to diagnosis increased from 202 of 1068 of those diagnosed in 2011 (18.9%) to 1099 of 2259 women diagnosed in 2021 (48.6%). The proportions of women who received general practitioner prescriptions were larger during the five years after than the five years preceding endometriosis diagnoses for levonorgestrel intrauterine devices (odds ratio [OR], 1.50; 95% confidence interval [CI], 1.36–1.65) and non-contraceptive progestogens (OR, 1.65; 95% CI, 1.51–1.81), and smaller for oral contraceptive pills (OR, 0.47; 95% CI, 0.45–0.50). The proportions of women prescribed opioids (OR, 1.35; 95% CI, 1.29–1.42), tricyclic antidepressants (OR, 1.93; 95% CI, 1.77–2.11), and gabapentinoids (OR, 2.60; 95% CI, 2.30–2.91) were also larger after endometriosis diagnoses; the proportion for each medication type was highest one year after diagnosis, but then declined. 

Conclusion: Our findings provide unique insights into the presentation and management of endometriosis in Australian general practice and could inform interventions for improving the clinical management of this often debilitating condition.