Endometriosis Diagnostic Delay and Its Correlates: Results from the ComPaRe-Endometriosis Cohort

Zélia Breton, Solène Gouesbet, Émilie Indersie, Marie Gabillet, Viet‐Thi Tran, Viet-Thi Tran, Nizar Aflak, Bruno Borghese, E. Petit, Erick Petit, Horace Roman, Anne-Charlotte Millepied, Margaux Nève De Mevergnies, Marina Kvaskoff
Journal of women's health (2002) · 2025 · vol. 35(2) , pp. 172–188 · doi:10.1177/15409996251380129 · PMID:40999898 · W4414554575
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This study identified factors associated with diagnostic delay for endometriosis and adenomyosis in a French e-cohort of nearly 7,000 women.

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Abstract

BACKGROUND: An average time to diagnosis of 7 years is commonly described for endometriosis; diagnostic delay for adenomyosis is unknown. This cross-sectional study aimed to describe diagnostic delay for endometriosis and adenomyosis and to investigate the factors associated with this delay. METHODS: Community of Patients for Research (ComPaRe)-Endometriosis is a prospective e-cohort of women with endometriosis and/or adenomyosis in France. About 6,949 participants were included. We used linear regression modeling to assess factors associated with diagnostic delay, after adjustment for age, education level, body mass index, number of comorbidities, and family history of the disease or of chronic pelvic pain (CPP). RESULTS: The average diagnostic delay was 10 years for endometriosis and 11 years for adenomyosis. Factors associated with a significantly longer diagnostic delay were year of diagnosis (+0.34 years, p < 0.0001), unemployment (+0.7 years, p = 0.01), number of comorbidities (+0.3 years, p < 0.0001), family history of the disease or of CPP (+1.1 years, p < 0.0001), severe dysmenorrhea before diagnosis (numeric-rating scale: +0.8 years, p < 0.0001), number of health professionals consulted before diagnosis (+0.3 years, p < 0.0001), and presence of multiple symptoms leading to first consultation (+1.6 years, p < 0.0001). In contrast, factors associated with a shorter delay were a financial position perceived as comfortable (-1.4 years, p < 0.0001), age at menarche (-0.6 years, p < 0.0001), and age at first symptoms (-0.8 years, p < 0.0001). CONCLUSIONS: This study highlights several factors associated with diagnostic delay among women with self-reported endometriosis and/or adenomyosis and provides new insights to improve care by informing both clinicians and patients. Attention to these profiles may improve disease management.

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Condition tags

dysmenorrheaendometriosischronic_pelvic_painadenomyosis

MeSH descriptors

Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis Adenomyosis

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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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