Experiences of Diagnostic Delay and Fertility Anxiety Among Women with Endometriosis: A Qualitative Study

Selinay Aktaş Demir, Rüveyda Ölmez Yalazı
In: Journal of Clinical Medicine · 2026 · vol. 15(21) , pp. 8510 · doi:10.3390/jcm15218510 · W7225266917
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This qualitative study of 18 women with endometriosis identified that prolonged diagnostic delays and fertility anxiety were intertwined with social expectations, dismissive healthcare experiences, and the normalization of severe pain.

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Abstract

Background/Objectives: Endometriosis often follows a prolonged diagnostic pathway and raises uncertainty about fertility. This study explored how women experienced diagnostic delay, fertility anxiety, healthcare encounters, and coping. Methods: In a qualitative descriptive study, 18 women were recruited from the gynecology outpatient clinic of a private hospital in Istanbul, Türkiye. All reported a previous physician diagnosis of endometriosis and an interval of at least two years between symptom onset and diagnosis. Individual semi-structured interviews were audio-recorded, transcribed, and analyzed with a collaboratively developed thematic codebook. Results: Participants’ mean age was 30.3 ± 4.8 years, and their mean self-reported diagnostic interval was 7.9 ± 3.6 years. Five themes addressed experiences of diagnostic delay; the meaning and consequences of diagnosis; fertility anxiety and reproductive decisions; healthcare experiences and expectations; and social support and coping. Women described the normalization of severe pain, dismissive or fragmented care, and the need to persist in seeking answers. Diagnosis validated symptoms but also brought the perceived costs of lost time into focus. Some participants described concerns about future fertility before attempting conception, while others discussed anxiety during pregnancy attempts; these concerns shaped treatment choices, relationships, and future plans. Participants described anxiety about ovarian reserve, unsuccessful fertility treatment, and pressure around marriage or motherhood; they sought clearer explanations and continuity of care. Conclusions: In this sample, diagnostic delay and fertility anxiety were intertwined with social expectations and healthcare experiences. Timely recognition of disabling symptoms, individualized fertility information, validating communication, and coordinated care may address needs across the endometriosis pathway.

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