Real world data on symptomology and diagnostic approaches of 27,840 women living with endometriosis

Kerstin Becker, Klaas Heinemann, Bruno Imthurn, Lena Marions, Sabine Moehner, Christoph Gerlinger, Marco Serrani, Thomas Faustmann
Scientific reports · 2021 · vol. 11(1) , pp. 20404 · doi:10.1038/s41598-021-99681-3 · PMID:34650132 · PMC8516876 · W3205945027
article OA: gold CC0 ⤵ 28 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This study analyzed real-world data from 27,840 women across Europe, revealing that most experienced pain symptoms, with diagnosis often based on symptoms, and significant impacts on mood.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This paper reports baseline real-world data from VIPOS, a large non-interventional observational study enrolling 27,840 women with endometriosis across six European countries via gynecologist networks or specialized centers, capturing symptoms, diagnostic pathways, and concurrent treatment types. Overall, 87.8% of diagnoses were reported as based on clinical symptoms rather than surgical confirmation, and 69.6% of women reported receiving diagnosis within one year of first symptoms; most women (about 82.8–82.9%) reported at least one of the three pain-symptom triad, with painful periods (61.8–61.9%) and heavy/irregular bleeding (50.8%) among the most common, and 55.6% reporting feelings of being “down,” depressed, or hopeless. A key limitation explicitly implied by the design is that diagnosis and outcomes are based on questionnaire and routine-care reporting rather than standardized diagnostic confirmation or uniform follow-up reporting within this baseline-focused report. This paper is centrally about endometriosis — it characterizes symptomology and diagnostic approaches in a real-world cohort of women with endometriosis.

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Abstract

Endometriosis is a chronic disease that requires a suitable, lifelong treatment. To our knowledge, the Visanne Post-approval Observational Study (VIPOS) is to date the largest real-world, non-interventional study investigating hormonal management of endometriosis. We describe women's experiences of endometriosis in the real world by considering their symptoms and the diagnostic process in their healthcare setting. Overall, 27,840 women were enrolled from six European countries via networks of gynecologists or specialized centers. Of these, 87.8% of women were diagnosed based on clinical symptoms; the greatest and lowest proportions of women were in Russia (94.1%) and Germany (61.9%), respectively. Most women (82.8%) experienced at least one of the triad of endometriosis-associated pain symptoms: pelvic pain, pain after/during sexual intercourse, and painful menstrual periods. The most frequently reported endometriosis-associated symptoms were painful periods (61.8%), heavy/irregular bleeding (50.8%), and pelvic pain (37.2%). Women reported that endometriosis impacted their mood; 55.6% reported feeling "down", depressed, or hopeless, and 53.2% reported feeling like a failure or having let down family/friends. VIPOS broadens our understanding of endometriosis based on real-world data by exploring the heterogeneity of symptoms women with endometriosis experience and the differences in diagnostic approaches between European countries.Trial registration: ClinicalTrials.gov, NCT01266421; registered 24 December 2010. Registered in the European Union electronic Register of Post-Authorisation Studies as number 1613.

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Condition tags

endometriosischronic_pelvic_pain

MeSH descriptors

Endometriosis Adult Depression Depression Endometriosis Endometriosis Endometriosis Female Humans Menstruation Disturbances Menstruation Disturbances Pelvic Pain Pelvic Pain Uterine Hemorrhage Uterine Hemorrhage

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Cited by (28)

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europepmc
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License: CC0 · commercial use OK