‘It just stops me from living’: A qualitative study of losses experienced by women with self‐reported endometriosis

Brianna L. Peterson, Brianna Peterson, Antonina Mikocka-Walus, Antonina Mikocka‐Walus, Subhadra Evans
Journal of advanced nursing · 2023 · vol. 79(10) , pp. 3888–3898 · doi:10.1111/jan.15745 · PMID:37341349 · W4381469508
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study of Australian women with endometriosis identified losses in liberty, bodily autonomy, and social connection due to pain, often unacknowledged by others.

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Abstract

AIMS: To understand the experience of loss in Australian women with endometriosis. DESIGN: A total of 532 participants completed an online survey containing three open-ended questions relating to pelvic pain and activity loss due to endometriosis. Participants were Australian women aged between 18 and 50 years (M = 30.8, SD = 7.1) with a self-reported diagnosis of endometriosis. An inductive, qualitative approach, with template analysis was used to identify and organize themes. A pragmatic feminist perspective was used to interpret the findings. RESULTS: Three main themes were identified: the loss of liberty: 'I'm trapped in the house'; the loss of bodily autonomy: 'I can barely move/breathe/talk' and loss of connection: 'It stops me from being social'. Pain emerged as the greatest concern for participants, preventing them from the physical functioning required to participate in many of life's activities. CONCLUSIONS: The losses women with endometriosis experience are wide-reaching, restricting control and choice across multiple life domains. Losses were often unacknowledged by loved ones and healthcare providers, further impacting the physical, emotional and mental health of participants. PATIENT OR PUBLIC CONTRIBUTION: People with endometriosis were involved in the design of the study, including identifying topics of interest.

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Condition tags

mesh:D004715endometriosis

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Adolescent Adolescent

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 (66)

Cited by (15)

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