Patient Perspectives on the Missed Opportunities and Barriers During the Diagnostic Journey: A Mixed Method Cross Sectional Study on Endometriosis in Australia

Kimia Sharifi Nasab, Kendall Foulds, Larissa Polkinghorne, Tracey Mclaren, Sophie Harris, Joanna Morris, Leo Ng, Emma Wise, Kevin Wernli
In: Women's Reproductive Health · 2026 · vol. 13(2) , pp. 521–538 · doi:10.1080/23293691.2025.2603690 · W7124464784
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This mixed-methods study explored Australian patients' experiences, identifying missed opportunities and barriers throughout their endometriosis diagnostic journeys.

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This mixed-methods cross-sectional study investigated patient-reported barriers and missed opportunities during the diagnostic journey for endometriosis among 95 Australian adults diagnosed via laparoscopy. The research revealed an average delay of 8.5 years from symptom onset to diagnosis, driven primarily by patient invalidation, poor clinical understanding of the condition, and a lack of early holistic care. Participants emphasized the necessity of self-advocacy in navigating these systemic failures within the healthcare system. This paper is centrally about endometriosis — specifically focusing on the psychosocial and systemic barriers encountered during the diagnostic process.

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Abstract Explore patient-reported barriers and missed opportunities across all domains of life during the endometriosis diagnostic process. A mixed methods crosssectional exploratory study using a co-designed online survey in people over 18 diagnosed with endometriosis via laparoscopy, residing in Australia. Quantitative data explored demographics, diagnosis, and care teams. Qualitative findings about missed opportunities and barriers were derived from free-text questions analyzed using deductive and inductive thematic analysis. Ninety-five participants completed the survey. The average time from symptom onset to diagnosis was 8.5 years. Findings highlighted patient invalidation and dismissal, poor understanding of endometriosis, missed opportunities for early holistic care, and self-advocacy. Acknowledgments We would like to acknowledge all participants for their participation in the study, and our allied health, general practitioner and gynaecology colleagues for supporting our study. We would also like to acknowledge Professor Anne Smith, Dr Nardia Klem, and Dr Beatriz Oliveira for their support and guidance. KW, JM, LN, and EW conceived the study. All authors were involved in the analysis and interpretation of data, drafting and revising the article, approved the final version and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Disclosure Statement All authors explicitly state that there are no conflicts of interest in connection with this study. Completed disclosure of interests form available to view online as supporting information. Ethics Statement Ethical approval for this project was obtained from the Curtin University Human Research Ethics Committee (HREC 2022-0412). Generative Artificial Intelligence (AI) Generative AI (ChatGPT-4o) was used on the 16.04.2025 to help brainstorm keywords from the abstract. Data Availability Statement The authors confirm that the data supporting the findings of this study are available within the article or its supplementary materials. Any additional data are available from the corresponding author, KS, upon reasonable request. Correction Statement This article has been corrected with minor changes. These changes do not impact the academic content of the article.

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Condition tags

endometriosis

Citation neighborhood

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.

References (27)

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