Unheard, uninformed and vulnerable: a qualitative study of women who seek endometriosis care outside of biomedicine

Sophia Gerontakos, Amie Steel, Matthew Leach, Jon Wardle
In: Research Square · 2025 · doi:10.21203/rs.3.rs-6341834/v1 · W4409883593
preprint OA: green CC0 ⤵ 1 in-corpus citation
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⚙ AI-generated summary by claude@2026-06+body, 2026-06-08 ⓘ

This qualitative study explored the experiences of 11 Australian women with endometriosis who sought care outside biomedicine, revealing themes of feeling unheard, receiving poorly coordinated care, and financial vulnerability.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-09 ⓘ

This qualitative preprint studied Australian women aged over 18 years with diagnosed endometriosis who had experience consulting naturopaths, using two focus groups (n=11) recruited via QENDO and endometriosis-related social media; the focus here was “healthcare needs and experiences,” analyzed with reflexive thematic analysis. Participants reported three main experiences: feeling unheard, neglected, and disempowered (including having to persist long-term for diagnosis and being disbelieved or receiving unwanted, unsuitable treatments), receiving poorly coordinated and informed care due to lack of information/guidance and limited referral or collaboration, and experiencing financial vulnerability from health system failures with costs described as unfeasible. The authors note this is a preprint and not peer reviewed, with focus-group methods and a relatively small, female-only sample as key study constraints. This paper is centrally about endometriosis — it explores lived experiences of women seeking care outside formal biomedical pathways and highlights perceived unmet needs and system failures in endometriosis care.

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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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