Dismissal informs the priorities of endometriosis patients in New Zealand

Katherine Ellis, Deborah Munro, Rachael Wood
Frontiers in medicine · 2023 · vol. 10 , pp. 1185769 · doi:10.3389/fmed.2023.1185769 · PMID:37324132 · PMC10267318 · W4379010316
article OA: gold CC0 ⤵ 7 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

Endometriosis patients in New Zealand prioritize subsidized care and research, and experienced prolonged diagnostic delays often exacerbated by dismissive medical practitioners reinforcing self-doubt.

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

This study explored priorities and experiences of 50 New Zealand endometriosis patients who participated in anonymous, asynchronous online group discussions about symptom development, seeking diagnosis, and treatment. Using a mix of ranked quantitative poll data and inductive thematic analysis, patients’ top future change was increased subsidization of care (35.8%), followed by more research funding (23.7%) and better education and readily available information (20.4%). When asked to focus research on improving diagnosis versus treatment, responses were evenly split, and patients reported not knowing the difference between normal menstrual discomfort and pathological endometriotic pain; the paper also reports that patients who did not report dismissal had a shorter symptom-to-diagnosis delay (4.6 ± 3.4 years vs. 9.0 ± 5.2 years), while acknowledging that the cohort is recruited via social media and may not represent all patients in New Zealand. This paper is centrally about endometriosis — it analyzes New Zealand patient priorities, barriers (including practitioner dismissal), and their relationship to diagnostic delay.

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Abstract

Introduction: Endometriosis is a common condition with average delays to diagnosis in New Zealand of almost 9 years. Methods: In total, 50 endometriosis patients participated in anonymous, asynchronous, online group discussions about their priorities, and their experiences with the development of symptoms, seeking a diagnosis, and receiving appropriate treatment. Results: Higher subsidy of care was the top change endometriosis patients wanted, followed by more research funding. When asked to choose whether research should be focused on improving diagnosis or improving treatment methods, the results were evenly split. Within this cohort, patients highlighted that they did not know the difference between normal menstrual discomfort and pathological endometriotic pain. If, upon seeking help, medical practitioners classified their symptoms as "normal," these dismissals could instill doubt in patients, which made it more difficult for them to continue to seek a diagnosis and effective treatments. Patients who did not express dismissal had a significantly shorter delay from symptom onset to diagnosis of 4.6 ± 3.4 years vs. 9.0 ± 5.2 years. Conclusion: Doubt is a frequent experience for endometriosis patients in New Zealand, which was reinforced by some medical practitioners who were dismissive of their pain and thus prolonged the patient's delay to diagnosis.

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Condition tags

endometriosis

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