Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study

Ingrid J. Rowlands, J A Abbott, JA Abbott, Grant W. Montgomery, G W Montgomery, Richard Hockey, R Hockey, Peter A. W. Rogers, P Rogers, G D Mishra, GD Mishra
BJOG: An International Journal of Obstetrics & Gynaecology · 2020 · vol. 128(4) , pp. 657–665 · doi:10.1111/1471-0528.16447 · PMID:32757329 · W3047194969
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

This data linkage cohort study found a cumulative prevalence of 6.0% for clinically confirmed endometriosis and 11.4% for confirmed or suspected endometriosis by age 44 in Australian women.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-09 · read from full text ⓘ

This population-based cohort data linkage study examined the prevalence and incidence of endometriosis among 13,508 Australian women born 1973–1978, using self-reported survey data from 2000–2018 linked to three administrative health databases. Clinically confirmed cases were first estimated from national hospital data, and prevalence estimates were then expanded by combining hospital data with other administrative sources and the survey data to include clinically suspected diagnoses. Cumulative prevalence of clinically confirmed endometriosis was 6.0% by ages 40–44, increasing to 11.4% when suspected diagnoses were added, with incidence peaking at 6 per 1,000 person-years at ages 30–34. The study’s limitation is that case identification depended on administrative codes and “clinically suspected” status across multiple sources rather than direct, uniform clinical assessment. This paper is centrally about endometriosis — estimating national Australian prevalence and incidence using linked administrative and survey data.

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Abstract

OBJECTIVE: To estimate the prevalence and incidence of endometriosis among Australian women. DESIGN: Population-based cohort study linked to administrative health records. SETTING: Secondary analysis of seven surveys collected between 2000 and 2018 from a population-based cohort study. POPULATION: A total of 13 508 Australian women, born 1973-78, from a prospective cohort study of 14 247 women conducted between 1996 and 2018. METHODS: During 2000 and 2018, self-reported longitudinal survey data were linked to three administrative health databases to separately identify women with clinically confirmed or suspected endometriosis across the multiple data sources. MAIN OUTCOME MEASURES: Prevalence and incidence of clinically confirmed endometriosis in the cohort were first estimated using national hospital data. Data were then combined with other administrative health databases and the survey data to capture all clinically confirmed and suspected diagnoses of endometriosis. RESULTS: The cumulative prevalence of clinically confirmed endometriosis was 6.0% (95% CI 5.8-6.2%) by age 40-44 years. The cumulative prevalence increased to 11.4% (95% CI 11.1-11.7%) when adding diagnoses of clinically suspected endometriosis. Age-specific incidence estimates peaked to 6 per 1000 person-years at age 30-34 years. CONCLUSIONS: Among 13 508 Australian women followed for 20 years, one in nine women had clinically confirmed or suspected endometriosis by the age of 44, with most diagnosed during their early thirties. Endometriosis is a significant public health issue requiring increased surveillance, clinical awareness and management. Efforts to expand knowledge on the aetiology of the disease and optimal methods for disease management are crucial to women's health. TWEETABLE ABSTRACT: In a national study of 13 508 Australian women, one in nine women were diagnosed with endometriosis by age 44.
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Abstract Objective: To estimate the prevalence and incidence of endometriosis among Australian women. Design: Population-based cohort study linked to administrative health records. Setting: Secondary analysis of seven surveys collected between 2000 and 2018 from a population-based cohort study. Population: A total of 13 508 Australian women, born 1973–78, from a prospective cohort study of 14 247 women conducted between 1996 and 2018. Methods: During 2000 and 2018, self-reported longitudinal survey data were linked to three administrative health databases to separately identify women with clinically confirmed or suspected endometriosis across the multiple data sources. Main outcome measures: Prevalence and incidence of clinically confirmed endometriosis in the cohort were first estimated using national hospital data. Data were then combined with other administrative health databases and the survey data to capture all clinically confirmed and suspected diagnoses of endometriosis. Results: The cumulative prevalence of clinically confirmed endometriosis was 6.0% (95% CI 5.8–6.2%) by age 40–44 years. The cumulative prevalence increased to 11.4% (95% CI 11.1–11.7%) when adding diagnoses of clinically suspected endometriosis. Age-specific incidence estimates peaked to 6 per 1000 person-years at age 30–34 years. Conclusions: Among 13 508 Australian women followed for 20 years, one in nine women had clinically confirmed or suspected endometriosis by the age of 44, with most diagnosed during their early thirties. Endometriosis is a significant public health issue requiring increased surveillance, clinical awareness and management. Efforts to expand knowledge on the aetiology of the disease and optimal methods for disease management are crucial to women's health. Tweetable abstract: In a national study of 13 508 Australian women, one in nine women were diagnosed with endometriosis by age 44.

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Condition tags

endometriosis

MeSH descriptors

Endometriosis Adult Australia Australia Endometriosis Endometriosis Female Health Surveys Humans Incidence Longitudinal Studies Middle Aged Prevalence Prospective Studies Self Report

Citation neighborhood

Papers in the corpus that this work cites (lower rings, blue) and that cite this one (upper rings, green). Dot size scales with the paper's in-corpus citation count — bigger dot = more influential within the endo/adeno field. Click a dot to open that paper. [ expand to 2 hops ] — adds papers reached through this work's immediate citers/citees. Heavier; up to 60 extra dots.

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