Relationship between onset of symptoms and diagnostic delay in women with endometriosis

Bettina Brandes, Iris Brandes, V Eisenberg, C. Weil, G. Chodick, V Shalev, D 'hooghe, T Fazleabas, A, S Abbas, P Ihle, I Kster, I Schubert, M Morotti, K Vincent, C. Becker, H Rowe, J Quinlivan, S Kundu, J Wildgrube, C Schippert, P Hillemanns, G Lamvu, O Antunez-Flores, M Orady, B Schneider, E Surrey, A Soliman, H Trenz, C Blauer-Peterson, A Sluis, I Brandes, S Simoens, G Dunselman, C Dirksen, J Prast, P. Oppelt, A Shamiyeh, O Shebl, D Haas, K. Ballard, K Lowton, J Wright, G Hudelist, N Fritzer, A. THOMAS, R Hadfield, H Mardon, D. Barlow, S Kennedy, R Garry, Ahj Staal, M Van Der Zanden, Mwj Arens, D.D.M. Braat, W.L.M. Nelen, L Kiesel, M Sourouni, E Denny, H Riazi, N Tehranian, S Ziaei, E Mohammadi, E Hajizadeh, A Montazeri, Dam Teunissen, I Van Der Woord, Wldm Nelen, A. Nap, M Arruda, A Sachedina, Todd Dysmenorrhea, Iris Ph, Brandes, S Matsuzaki, M Canis, J.-L. Pouly, B. Rabischong, R. Botchorishvili, G. Mage, D Jackisch, M Mueller, K Schweppe, A. Ebert, Paw Rogers, G Adamson, Al-Jefout, M, K Seear, Adams Hillard, P, M Carneiro, B Farace, Ribeiro Lsdc, M Hirsch, S. Aggarwal, C Barker, C Davis, Jmn Duffy, N Shadbolt, M Parker, L Orthia, S Wilson, S Mogan, K Kaur
In: Archives of Clinical Obstetrics and Gynecology Research · 2021 · vol. 1(1) · doi:10.33425/2768-0304.1001 · W4214671837
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⚙ AI-generated summary by gemini-2.5-flash-lite, 2026-06-07 ⓘ

This qualitative study analyzed 90 women's experiences to reveal that a lack of knowledge, normalization by social circles, delayed healthcare seeking, and physician ignorance contribute to diagnostic delays in endometriosis.

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Abstract

Introduction: Endometriosis, one of the most common benign gynaecological diseases, is characterized by a reduced quality of life due to various physical and psychological stresses. Late diagnosis is associated with disease progression and higher healthcare costs. The aim of this qualitative study was to gain further insights into the causes of the delay in diagnosis in women with endometriosis. Methods: Data basis are the statements of 90 women with diagnosed endometriosis from a qualitative study on the experience with health care in Germany. Following Kuckartz, structuredthematic content analysis was used to evaluate data. By comparing women with early and late onset of symptoms, possible causes for diagnostic delay were to be identified. Results: Women who experience an early onset of symptoms, often associated with menarche, are predominantly not able to recognize the pathological condition of the symptoms. Lack of knowledge and experience regarding a normal menstrual cycle, intensive influence of family members and friends who tend to "normalize", "belittle" and describe the symptoms as fateful, late use of healthcare services as well as ignorance and misjudgement on the part of physicians result in a delayed diagnostic process. Conclusion: The results of the present analysis confirm the findings of other studies indicating that misjudgment and ignorance of the signs and symptoms are the most important reasons for the delayed diagnosis of endometriosis. However, it will not be sufficient to bring about improvement exclusively at the level of the treating physician. Further measures should be taken to improve the level of knowledge of the general population. Thus, it is necessary to develop comprehensive and target group-specific information offerings to provide young girls with comprehensive and appropriate information as early as puberty.

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Condition tags

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 (35)

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