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Cited by 181Endometriosis Research and TreatmentGynecological conditions and treatmentsHealth Literacy and Information Accessibility

Focus group study of endometriosis: Struggle, loss and the medical merry‐go‐round

Cox, Helen, Henderson, Lorraine, Andersen, Natalie, Cagliarini, Glenda, Ski, Chantal·2003·International Journal of Nursing Practice
DOI 10.1046/j.1440-172x.2003.00396.x
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Abstract

Women with endometriosis experience a range of problems for which they may or may not be adequately supported. This paper reports on one aspect of a study conducted at the Epworth Hospital, Melbourne, to identify the information needs of women facing laparoscopy for endometriosis. A number of focus groups were conducted that provided women with a forum for communicating their experiences of endometriosis and laparoscopy. The findings include the experiences of 61 women who described the lack of support, the struggles and the losses involved in living with endometriosis. By far the worst experience that these women described was the encounter with health professionals and the ways in which their symptoms were trivialised and dismissed. There is a great deal for nurses to learn about the experience of living with endometriosis if they are to support women with this chronic illness in their search for well‐being.

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Crossref · 10.1046/j.1440-172x.2003.00396.x

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  • Qualitative studies indicate that endometriosis symptoms substantially affect patients' physical, emotional, and social wellbeing during their most productive years.

    “Qualitative studies have shown that endometriosis symptoms have a substantial impact on the physical, emotional, and social wellbeing of patients, who are affected during the most productive years of their lives (5-12).”

    From Patients’ report on how endometriosis affects health, work, and daily life (2010) · cites this paper as [8]

  • Patients with endometriosis endure symptoms for years without being diagnosed, confirming a worrisome trend and worldwide public health problem.

    “This study thus confirms a worrisome trend and worldwide public health problem: patients with endometriosis endure symptoms for years without being diagnosed (8-12, 27-29).”

    From Patients’ report on how endometriosis affects health, work, and daily life (2010) · cites this paper as [8]

  • This study supports previous findings that patients with endometriosis commonly endure painful symptoms and infertility, both of which could negatively affect quality of life and mental health at rates higher than healthy women or women with other gynecological disorders.

    “This study supports previous findings showing that patients with endometriosis commonly endure both painful symptoms and infertility, both of which could negatively affect the quality of life and mental health of the affected women at rates that are higher than those reported by healthy women or women with other gynecological disorders (6-12,35,36).”

    From Patients’ report on how endometriosis affects health, work, and daily life (2010) · cites this paper as [8]

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Authors
Cox, H., Henderson, L., Andersen, N., Cagliarini, G., & Ski, C.
Affiliations
  • Deakin University (AU)
  • Epworth Hospital (AU)
Corresponding author
Cox, Helen
ORCID
Venue
International Journal of Nursing Practice
Publisher
Wiley
Published
2003-02
Volume
9
Issue
1
Pages
2-9
ISSN
  • 1322-7114 (ISSN-L)
  • 1440-172X
DOI
10.1046/j.1440-172x.2003.00396.x
OpenAlex
W2030858367
Cited by
181
References
6
Citations by year
2026: 9 · 2025: 15 · 2024: 16 · 2023: 14 · 2022: 15 · 2021: 10 · 2020: 9 · 2019: 11 · 2018: 10 · 2017: 5 · 2016: 5 · 2015: 5 · 2014: 6 · 2013: 3 · 2012: 6
FWCI
1.84
Type
journal article
Language
en
Open access
closed
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor, 27 d)
Locations
  • International Journal of Nursing Practice (publishedVersion)
  • PubMed (publishedVersion)
Funders
Australian Government
Topics
  • Health Sciences › Medicine › Reproductive Medicine › Endometriosis Research and Treatment
  • Health Sciences › Medicine › Obstetrics and Gynecology › Gynecological conditions and treatments
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
Keywords
endometriosis, lived experience, patient support, information needs, laparoscopy, health professional-patient relationship, chronic disease, women's health, nursing support
MeSH terms
Adaptation, Psychological, Communication, Endometriosis, Female, Humans, Health Knowledge, Attitudes, Practice, Pain, Laparoscopy, Physician-Patient Relations, Focus Groups

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