Assessing the true prevalence of endometriosis: A narrative review of literature data

Carolin Harder, Harder C, Renata Voltolini Velho, Iris Brandes, Brandes I, Jalid Sehouli, Sehouli J, Sylvia Mechsner
International Journal of Gynecology & Obstetrics · 2024 · vol. 167(3) , pp. 883–900 · doi:10.1002/ijgo.15756 · PMID:39031100 · W4400830597
Review OA: bronze CC0 ⤵ 15 in-corpus citations
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This review synthesizes literature data and proposes a multi-layered prevalence model demonstrating that endometriosis affects significantly more women (up to 21%) than suggested by health insurance data (around 1%).

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Abstract

Endometriosis is a gynecologic condition often described as the "chameleon of gynecology" because of its elusive symptoms. The World Health Organization acknowledges its severe impact on quality of life due to pain, fatigue, depression, and infertility. There is limited literature on the prevalence of endometriosis, knowledge of which is essential for effective prevention, treatment strategies, and funding. We aim to structure and present the published data on endometriosis prevalence, synthesizing the discrepancy between health insurance and clinical data. PubMed, Cochrane CENTRAL, and LIVIVO were researched for peer-reviewed articles published between January 2000 and July 2023 on women of reproductive age. Health insurance companies argue that few women (~1%) are affected by endometriosis. Interestingly, the prevalence of clinical data studies (6.8%), population-based surveys/self-reported studies (6.6%), and symptomatic patient data (21%) revealed a different picture. Based on the data gathered, a multi-layered prevalence model has been proposed to illustrate the large discrepancy in the prevalence numbers, leading to the disease being underestimated and underfunded. This variability may be influenced by the heterogeneity in designs and the analyzed data, and clinical complexity. In summary, this narrative review reveals that the prevalence of endometriosis is higher than health insurance and other stakeholders might have previously assumed.

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Condition tags

endometriosisinfertility

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis

Citation neighborhood (2-hop)

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. Outer rings show 2-hop neighbours — papers reached through the immediate citers/citees. [ collapse to 1-hop ]

References (100)

Cited by (36)

Source provenance

europepmc
last seen: 2026-11-04T06:09:08.831786+00:00
openalex
last seen: 2026-06-10T17:14:06.276822+00:00
pubmed
last seen: 2026-11-04T06:06:39.267876+00:00
License: CC0 · commercial use OK