OBJECTIVES: Endometriosis is characterized by tissue resembling endometrium outside the uterus, affecting ~10% of reproductive age women, and currently has no cure. Symptoms include: chronic pelvic pain; pain from periods, intercourse, bowel movements, urination; fatigue; depression/anxiety; nausea. Endometriosis may also cause infertility. This review explores the burden of endometriosis from a global and societal perspective.

METHODS: A search was conducted in April 2023 using Embase.com, restricted to studies published since 2017 to capture current data. Primary studies reporting population or average patient burden of endometriosis as monetary values, health care resource quantities or lost work time, were included.

RESULTS: Twenty-seven studies were identified, including: 20 retrospective analyses of United States (US), Hungarian and Brazilian databases; five patient surveys in Australia, Canada, Sweden, and an international trial; two prospective hospital cost studies in Canada and Finland. Generally, studies used diagnosis codes to identify endometriosis-related healthcare use. Two studies compared total costs in women with or without endometriosis. Only six studies reported a total population burden: others reported mean costs per patient or hospital admission.

The highest costs were reported in US hospital studies, which are less generalizable since many patients require no inpatient care. In other studies, the relative contribution of outpatient to total costs varied, although pharmaceutical costs were consistently minor. Direct costs increased with disease/pain severity, symptoms, diagnostic delay, opioid use, and surgical complexity. Seven studies reported indirect costs, suggesting these comprise at least half of the total burden, although most only considered absenteeism.

Study limitations were common to retrospective studies (biases) and hospital studies (narrow perspective/generalizability, use of charges). Most studies did not consider costs beyond one year post-diagnosis.

CONCLUSIONS: Despite challenges in comparing studies across countries with different healthcare systems, costs, and standards, a substantial cost burden is clearly imposed by endometriosis in healthcare and lost productivity.