Shedding light on endometriosis: Patient and provider perspectives on a challenging disease

Madalene Zale, Emily Lambert, Marianna LaNoue, Amy Leader
In: Journal of Endometriosis and Pelvic Pain Disorders · 2020 · vol. 12(2) , pp. 69–76 · doi:10.1177/2284026520905239 · W3006844453
article OA: green CC0 ⤵ 18 in-corpus citations
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

This study surveyed providers and interviewed providers and patients to reveal that many healthcare providers underestimate endometriosis prevalence, while both groups highlight challenges in diagnosis, treatment, and the disease's impact on well-being.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-08 ⓘ

This mixed-methods study examined health care provider perceptions and patient experiences with endometriosis in the United States using a provider survey (n=53) and interviews with a subset of providers (4) and women diagnosed with endometriosis (12). The authors report that only 6 of 53 providers (11%) correctly identified endometriosis prevalence, and that provider themes included limited training, diagnostic difficulty, referral complexity, challenging patient-provider dynamics, and the perceived value of multidisciplinary collaboration. Patient themes included psychological impact, problems navigating the healthcare system, the need for self-advocacy, effects on quality of life, and limited treatment options. A key limitation noted by the study design is the small interview samples relative to the survey, which may restrict how broadly the qualitative themes can be generalized. This paper is centrally about endometriosis — it focuses on patient and provider perspectives on challenges in living with and caring for the disease.

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Abstract

Background: Endometriosis is a serious yet understudied medical condition impacting millions of women worldwide. Methods: This mixed-methods study aimed to understand healthcare provider perceptions and patient experiences with endometriosis in the United States. Providers were surveyed to assess their understanding of disease prevalence. A subset of providers also participated in short, open-ended interviews about treating patients who have or are suspected to have endometriosis. Interviews were also conducted with women diagnosed with endometriosis to understand their experiences with the disease. Means and frequencies were calculated for survey data; interviews were transcribed and separately analyzed by two coders using an iterative coding process until agreement was reached. Results: Fifty-three providers completed surveys. Of the 53 providers, 6 (11%) accurately identified the prevalence of endometriosis. Four providers and 12 patients completed interviews. Emergent themes among providers included limited training, difficulty of diagnosis, complexity of the referral process, a challenging patient–provider dynamic, and the importance of multidisciplinary collaboration. Emergent themes from patients included the psychological impact of the disease, difficulties interacting with the healthcare system, self-advocacy, quality of life, and limited treatment options. Conclusion: Providers are frequently unfamiliar with the far-reaching scope of endometriosis and cite many challenges caring for patients with the disease. Patients equally find the disease challenging to live with as it encroaches on physical, mental, and emotional well-being.

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Condition tags

endometriosis

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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.

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last seen: 2026-06-10T17:14:06.276822+00:00
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