“We’re Just Walking Experiments”: Exploring Uncertainty Management of Endometriosis

Kelsey Lunsford, Amanda S. Bradshaw, Debbie Treise
In: Women's Reproductive Health · 2025 · vol. 13(2) , pp. 259–275 · doi:10.1080/23293691.2025.2503335 · W4410759247
article OA: closed CC0 ⤵ 1 in-corpus citation
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study explored how women with endometriosis manage uncertainty about their condition, focusing on their experiences and coping strategies.

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This qualitative study analyzed interviews from 14 participants to examine the types of uncertainty people experience in endometriosis and the strategies they use to manage uncertainty before and after diagnosis. The authors report that participants faced uncertainty across the diagnostic journey and responded with approaches such as avoidance, behavior change, and seeking information. A key limitation is that the study is based on a small interview sample and the data are available only on request due to participant privacy concerns. This paper is centrally about endometriosis — it focuses specifically on uncertainty management in relation to the diagnosis and lived experience of the condition.

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Abstract

Endometriosis is a chronic, often underdiagnosed condition that significantly impacts quality of life. This study analyzed 14 interviews to examine the types of uncertainty individuals face and how they manage it. Participants experienced uncertainty both before and after diagnosis, using strategies such as avoidance, behavior change, and information seeking. Findings emphasize the need to strengthen patient-provider relationships to improve care quality and support individuals in navigating endometriosis.

Acknowledgements

The authors would like to express their gratitude to the individuals who participated in this study and generously shared their experiences with endometriosis. Disclosure Statement No potential conflict of interest was reported by the author(s). Data Availability Statement The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due their containing information that could compromise the privacy of research participants. 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.

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