Women's Self-Management of Dyspareunia Associated With Endometriosis: A Qualitative Study

Howard AF, A. Fuchsia Howard, Noga H, Heather Noga, Kelly MT, Mary T. Kelly, Gholamian B, Bita Gholamian, Lett S, Sarah Lett, Jessica Sutherland, Paul J. Yong
The journal of pain · 2024 · vol. 25(8) , pp. 104492 · doi:10.1016/j.jpain.2024.02.006 · PMID:38341015 · W4391691589
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This qualitative study explored how 20 women with endometriosis developed self-management strategies over time to navigate painful sex, encompassing four distinct phases from normalization to active navigation.

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Abstract

Given the limitations of medical treatment for endometriosis, self-management is a critical component of symptom management, and providing patients with information and education is a necessary complement to medical interventions. Though 50 to 70% of people with endometriosis experience dyspareunia (painful sex), there is limited knowledge of self-management specific to painful sex. A comprehensive understanding of the self-management strategies used is foundational to developing supportive care interventions that help ease pain and related psychosocial sequelae. The objective was to describe people's experiences of navigating endometriosis-associated painful sex and developing self-management strategies. We analyzed interview data from 20 women using constant comparative and thematic analysis techniques, guided by qualitative interpretive description methodology. Participants (age range 18-44 years) all identified as women and were predominately Caucasian (90%) and heterosexual (80%). Throughout their lives, the women appeared to gradually develop self-management strategies while navigating painful sexual experiences. This complex journey encompassed four phases: 1) viewing painful sex as normal, 2) experiencing evolving thoughts and emotions, 3) coming to understand painful sex and seeking help, and 4) learning strategies to navigate painful sex, these include preparing mentally and physically for sex and communicating with intimate partner(s). Women in this study developed self-management strategies over time through engagement with others who understood their challenges. Future research is warranted regarding initiatives to counter the normalization of painful sex, develop and disseminate patient-facing information, provide education specific to dyspareunia, improve access to multidisciplinary care, facilitate social connections and support, and enhance communication with intimate partners. PERSPECTIVE: In this paper, we report on the experiences of women with endometriosis-associated painful sex and their self-management strategies. Clinicians may be interested in a qualitative exploration of endometriosis-associated painful sex as they seek to further understand their patient's experiences and what strategies can be implemented to alleviate dyspareunia. DATA AVAILABILITY: The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.

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Condition tags

dyspareuniaendometriosis

MeSH descriptors

Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia Dyspareunia

Funding

funders
[{'doi': '10.13039/501100000024', 'name': 'Canadian Institutes of Health Research', 'awards': []}]

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 (100)

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