Experiences of disempowerment amongst endometriosis patients: Toward comprehensive care to address the psychosocial impact of chronic illness

Hannah Paige Valihora

doi:10.1177/13591053251331279

Experiences of disempowerment amongst endometriosis patients: Toward comprehensive care to address the psychosocial impact of chronic illness

Hannah Paige Valihora

Journal of health psychology · 2025 · vol. 30(14) , pp. 4298–4313 · doi:10.1177/13591053251331279 · PMID:40257283 · PMC12678643 · W4409625842

article OA: gold CC0

📄 Open PDF View on OpenAlex View on PubMed View at publisher

⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This qualitative study explored how Canadian endometriosis patients experience healthcare, identifying psychosocial burdens and advocating for a comprehensive care model that better addresses the illness experience.

One-sentence paraphrase of the abstract; not a substitute for reading it. No clinical advice. How this works

Abstract

Endometriosis is a devastating chronic condition with significant physical and social implications. This research focused on two questions: 1) how do endometriosis patients experience healthcare in Canada, and 2) how can the healthcare encounter effectively address the psychosocial burden of disease that patients bear? This study examines the psychosocial implications of endometriosis diagnosis and treatment. Data was obtained through semi-structured interviews with nine people diagnosed with endometriosis. Interview questions centering patient perceptions of care were thematically analyzed utilizing reflexive thematic analysis. Analyzing participant narratives and drawing upon Kleinman's concepts of illness experiences and slow medicine, this article underlines the urgency of moving toward a deeper ethics of care for endometriosis patients, wherein the patient is understood and advocated for within the Canadian healthcare system. Drawing upon participant experiences, the present research calls for the widespread availability of a comprehensive healthcare model for the treatment of endometriosis.

My notes (saved in your browser only)

Condition tags

endometriosis

MeSH descriptors

Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis Endometriosis 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.

References (47)

A qualitative investigation into the role of illness perceptions in endometriosis-related quality of life via openalex
Clinical diagnosis of endometriosis: a call to action via openalex
Clinical Outcome After Radical Excision of Moderate—Severe Endometriosis With or Without Bowel Resection and Reanastomosis via openalex
Clinicians’ perceptions of women's experiences of endometriosis and of psychosocial care for endometriosis via openalex
Does Endometriosis Disturb Mental Health and Quality of Life? A Systematic Review and Meta-Analysis via openalex
Endometriosis-associated dyspareunia: the impact on women's lives via openalex
Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research via openalex
Endometriosis: pathogenesis and treatment via openalex
Endurance and contest: women's narratives of endometriosis via openalex
Exploring disempowerment in women’s accounts of endometriosis experiences via openalex
Healthcare Providers’ Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust via openalex
Hysterics and Heresy: Using Dialogism to Explore the Problematics of Endometriosis Diagnosis via openalex
Impact of endometriosis on quality of life: A pilot study via openalex
Impact of endometriosis on women’s lives: a qualitative study via openalex
Inflammation and endometriosis via openalex
Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The "Evil Twins" syndrome. via openalex
Learning to cope with the reality of endometriosis: A mixed‐methods analysis of psychological therapy in women with endometriosis via openalex
Predictors of Psychological Outcomes and the Effectiveness and Experience of Psychological Interventions for Adult Women with Chronic Pelvic Pain: A Scoping Review via openalex
Research on central sensitization of endometriosis-associated pain: a systematic review of the literature via openalex
Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis via openalex
Pain‐focused psychological interventions in women with endometriosis: A systematic review via openalex
Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis via openalex
Patients' and relatives' perspectives on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis: findings from a national survey via openalex
Prevalence, Symptomatic Burden, and Diagnosis of Endometriosis in Canada: Cross-Sectional Survey of 30 000 Women via openalex
Psychological and mind-body interventions for endometriosis: A systematic review via openalex
Psychological interventions improve quality of life despite persistent pain in endometriosis: results of a 3-armed randomized controlled trial via openalex
Quality of life of patients with bilateral oophorectomy before the age of 45 for the treatment of endometriosis via openalex
Satisfaction with medical support in women with endometriosis via openalex
The burden of endometriosis in China from 1990 to 2019 via openalex
The development of a comprehensive multidisciplinary endometriosis and chronic pelvic pain center via openalex
The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay via openalex
The impact of endometriosis on depressive and anxiety symptoms and quality of life: a systematic review via openalex
“The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity via openalex
The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis via openalex
The relationship between interstitial cystitis and endometriosis in patients with chronic pelvic pain. via openalex
Tubal Endometriosis: From Bench to Bedside, A Scoping Review via openalex
Wandering Wombs and “Female Troubles”: The Hysterical Origins, Symptoms, and Treatments of Endometriosis via openalex
W2102818977 via openalex
W2047538252 via openalex
W1983212053 via openalex
W2896694652 via openalex
W2761276004 via openalex
W3048560297 via openalex
W3090973154 via openalex
W4240070191 via openalex
W2163315477 via openalex
W1979290264 via openalex

Source provenance

europepmc: last seen: 2026-06-11T06:19:48.454388+00:00
openalex: last seen: 2026-06-10T17:14:06.276822+00:00
pmc: last seen: 2026-05-13T20:22:03.195721+00:00
pubmed: last seen: 2026-06-11T06:16:30.821809+00:00

License: CC0 · commercial use OK

[1] A qualitative investigation into the role of illness perceptions in endometriosis-related quality of life via openalex

[2] Clinical diagnosis of endometriosis: a call to action via openalex

[3] Clinical Outcome After Radical Excision of Moderate—Severe Endometriosis With or Without Bowel Resection and Reanastomosis via openalex

[4] Clinicians’ perceptions of women's experiences of endometriosis and of psychosocial care for endometriosis via openalex

[5] Does Endometriosis Disturb Mental Health and Quality of Life? A Systematic Review and Meta-Analysis via openalex

[6] Endometriosis-associated dyspareunia: the impact on women's lives via openalex

[7] Endometriosis in Canada: It Is Time for Collaboration to Advance Patient-Oriented, Evidence-Based Policy, Care, and Research via openalex

[8] Endometriosis: pathogenesis and treatment via openalex

[9] Endurance and contest: women's narratives of endometriosis via openalex

[10] Exploring disempowerment in women’s accounts of endometriosis experiences via openalex

[11] Healthcare Providers’ Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust via openalex

[12] Hysterics and Heresy: Using Dialogism to Explore the Problematics of Endometriosis Diagnosis via openalex

[13] Impact of endometriosis on quality of life: A pilot study via openalex

[14] Impact of endometriosis on women’s lives: a qualitative study via openalex

[15] Inflammation and endometriosis via openalex

[16] Interstitial cystitis and endometriosis in patients with chronic pelvic pain: The "Evil Twins" syndrome. via openalex

[17] Learning to cope with the reality of endometriosis: A mixed‐methods analysis of psychological therapy in women with endometriosis via openalex

[18] <p>Predictors of Psychological Outcomes and the Effectiveness and Experience of Psychological Interventions for Adult Women with Chronic Pelvic Pain: A Scoping Review</p> via openalex

[19] <p>Research on central sensitization of endometriosis-associated pain: a systematic review of the literature</p> via openalex

[20] <p>Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis</p> via openalex

[21] Pain‐focused psychological interventions in women with endometriosis: A systematic review via openalex

[22] Partners instead of patients: Women negotiating power and knowledge within medical encounters for endometriosis via openalex

[23] Patients' and relatives' perspectives on best possible care in the context of developing a multidisciplinary center for endometriosis and adenomyosis: findings from a national survey via openalex

[24] Prevalence, Symptomatic Burden, and Diagnosis of Endometriosis in Canada: Cross-Sectional Survey of 30 000 Women via openalex

[25] Psychological and mind-body interventions for endometriosis: A systematic review via openalex

[26] Psychological interventions improve quality of life despite persistent pain in endometriosis: results of a 3-armed randomized controlled trial via openalex

[27] Quality of life of patients with bilateral oophorectomy before the age of 45 for the treatment of endometriosis via openalex

[28] Satisfaction with medical support in women with endometriosis via openalex

[29] The burden of endometriosis in China from 1990 to 2019 via openalex

[30] The development of a comprehensive multidisciplinary endometriosis and chronic pelvic pain center via openalex

[31] The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay via openalex

[32] The impact of endometriosis on depressive and anxiety symptoms and quality of life: a systematic review via openalex

[33] “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity via openalex

[34] The Pain of Endo Existence: Toward a Feminist Disability Studies Reading of Endometriosis via openalex

[35] The relationship between interstitial cystitis and endometriosis in patients with chronic pelvic pain. via openalex

[36] Tubal Endometriosis: From Bench to Bedside, A Scoping Review via openalex

[37] Wandering Wombs and “Female Troubles”: The Hysterical Origins, Symptoms, and Treatments of Endometriosis via openalex

[38] W2102818977 via openalex

[39] W2047538252 via openalex

[40] W1983212053 via openalex

[41] W2896694652 via openalex

[42] W2761276004 via openalex

[43] W3048560297 via openalex

[44] W3090973154 via openalex

[45] W4240070191 via openalex

[46] W2163315477 via openalex

[47] W1979290264 via openalex