The DOI matches its Crossref record; 6 of the 6 references it cites were found in a registry or an index.
Focus group study of endometriosis: Struggle, loss and the medical merry‐go‐round
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.
Overview
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
In the citing paper
“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]
In the citing paper
“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]
In the citing paper
“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]
Citations
Cites
Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR)
American Psychiatric Association (2000) · doi:10.1176/appi.books.9780890423349 · Cited by 11,069
(1971) · Cited by 1,778
Grace, V. M. (1995) · Health Care For Women International · doi:10.1080/07399339509516206 · Cited by 54
Ballweg, M. L. (1997) · Obstetrics and Gynecology Clinics of North America · doi:10.1016/s0889-8545(05)70312-0 · Cited by 36
Zreik, T. G., & Olive, D. L. (1997) · Obstetrics and Gynecology Clinics of North America · doi:10.1016/s0889-8545(05)70303-x · Cited by 12
Redwine, D. B. (2001) · The Journal of the American Association of Gynecologic Laparoscopists · doi:10.1016/s1074-3804(05)60603-2 · Cited by 8
Research works printed but not linked: 4
- Endometriosis Association (Vic)., 2000, What Is Endometriosis?
- Carlton D, 1996, Awareness of endometriosis, Practice Nurse, 12, 514
- Montague M, 1997, Report to the Department of Health and Family Services General Practice Evaluation Program 1997, 358
- Garner C, 1996, Coping with endometriosis, Office Nurse, 9, 14
Cited by
Sorted by citations
Items 101–180 of 180
(2012) · Redalyc (Universidad Autónoma del Estado de México) · Cited by 13
on behalf of the PRE-EMPT team, Denny, E., Weckesser, A., Jones, G. L., Bıbıla, S., DANIELS, J. P., & Bhattacharya, S. (2018) · Pilot and Feasibility Studies · doi:10.1186/s40814-018-0358-5 · Cited by 13
Hormonal Contraceptive Use and Affective Disorders: An Updated Review
Mengelkoch, S., Afshar, K., & Slavich, G. M. (2025) · Open Access Journal of Contraception · doi:10.2147/oajc.s431365 · Cited by 12
Alshehre, S. M., Duffy, S., Jones, G. L., Ledger, W. J., & Metwally, M. (2020) · Reproductive Biology and Endocrinology · doi:10.1186/s12958-020-00586-z · Cited by 12
Understanding sexual pain in endometriosis
Aerts, L., Grangier, L., Dällenbach, P., Wenger, J., Streuli, I., Bianchi‐Demicheli, F., & Pluchino, N. (2019) · Minerva Obstetrics and Gynecology · doi:10.23736/s0026-4784.19.04379-x · Cited by 11
Wimberger, P., Grübling, N., Riehn, A., Furch, M., Klengel, J., & Goeckenjan, M. (2014) · Geburtshilfe und Frauenheilkunde · doi:10.1055/s-0034-1383168 · Cited by 11
Endometriosis: Overview and Recommendations for Primary Care Nurse Practitioners
Altman, G. B., & Wolcyzk, M. (2010) · The Journal for Nurse Practitioners · doi:10.1016/j.nurpra.2009.07.022 · Cited by 10
Cho, Y. H., & Chun, N. (2015) · Korean journal of women health nursing/Yeoseong geon'gang ganho hag'hoeji/Yeoseong geon-gang ganho hakoeji · doi:10.4069/kjwhn.2015.21.4.321 · Cited by 10
From womanhood to endometriosis : findings from focus groups with women from different ethnic groups
Denny, E., Culley, L. A., Papadopoulos, I., & Apenteng, P. N. (2011) · Warwick Research Archive Portal (University of Warwick) · doi:10.82444/warw.33812287 · Cited by 9
Exploring the Experiences of Living With the Post‐COVID Syndrome: A Qualitative Study
Kalfas, M., Jolley, C. J., Hart, N., Rafferty, G. F., Duncan, E. L., Nicholson, T. R., Ashworth, M. J., Brewin, D., Barrett, B. M., Witard, O. C., et al. (2024) · Health Expectations · doi:10.1111/hex.14108 · Cited by 9
Endometriosis in Adolescence: A Narrative Review of the Psychological and Clinical Implications
Panvino, F., Paparella, R., Pisani, F., Tarani, F., Ferraguti, G., Fiore, M., Ardizzone, I., & Tarani, L. (2025) · Diagnostics · doi:10.3390/diagnostics15050548 · Cited by 12
Brania, N., Adler, H., Richardson, E., Ng, C. H. M., O’Hara, R. L., Pirotta, S., Schubert, R., Parker, L. T., & Niekerk, L. M. V. (2025) · Women s Reproductive Health · doi:10.1080/23293691.2025.2525429 · Cited by 10
Hanly, C., Leonardi, M., Eathorne, A., & Armour, M. (2023) · Acta Obstetricia Et Gynecologica Scandinavica · doi:10.1111/aogs.14488 · Cited by 31
Denouël, A., Fauconnier, A., & Torre, A. (2018) · Gynécologie Obstétrique Fertilité & Sénologie · doi:10.1016/j.gofs.2018.02.005 · Cited by 8
Naturopathy utilisation by Australian women with diagnosed endometriosis: A cross-sectional survey
Redmond, R., Steel, A., Wardle, J., & Adams, J. (2022) · Complementary Therapies in Clinical Practice · doi:10.1016/j.ctcp.2022.101539 · Cited by 8
Spigolon, D. N., & Moro, C. M. C. (2012) · Revista gaúcha de enfermagem · doi:10.1590/s1983-14472012000400003 · Cited by 7
Roomaney, R., & Mitchell, H. (2022) · Women & Health · doi:10.1080/03630242.2022.2144985 · Cited by 8
Health-related decision-making experiences of people with endometriosis: a qualitative analysis
Fallon, L., Lau, A. Y. S., Ciccia, D., Duckworth, T. J., Pereira, C., Kopp, E., Perica, V., & Sherman, K. A. (2025) · Psychology and Health · doi:10.1080/08870446.2025.2502866 · Cited by 8
Harris, S., Tata, L. J., Qureshi, N., Read, K. A., & Bains, M. (2025) · Women s Reproductive Health · doi:10.1080/23293691.2025.2545308 · Cited by 7
Vulvodynia attitudes in a sample of Canadian post-graduate medical trainees
Boyer, S. C., Chamberlain, S. M., & Pukall, C. F. (2017) · The Canadian Journal of Human Sexuality · doi:10.3138/cjhs.2017-0019 · Cited by 7
“So It’s Like a Painful Period?” Living with Endometriosis: My Journey
Walkden, S. M. (2023) · Health Communication · doi:10.1080/10410236.2023.2296189 · Cited by 7
Contributing to health reform : urban Aboriginal women speak out
Kurtz, D. (2011) · Cited by 6
Endometriosis Communities on Reddit: Quantitative Analysis
Bologna, F., Thalken, R., Pepin, K. J., & Wilkens, M. J. (2025) · Journal of Medical Internet Research · doi:10.2196/57987 · Cited by 8
Deevey, S. (2005) · Medical Reference Services Quarterly · doi:10.1300/j115v24n01_06 · Cited by 6
How do health problems affect the quality and everyday life of patients with endometriomas?
Chmaj-Wierzchowska, K., Wojciechowska, M., Parda, I., Plagens-Rotman, K., Rzymski, P., & Wilczak, M. (2020) · Clinical and Experimental Obstetrics & Gynecology · doi:10.31083/j.ceog.2020.04.5258 · Cited by 5
Endometriosis diagnosis buffers reciprocal effects of emotional distress on pain experience
Gevaudan, L., Broc, G., Chauchard, É., Porro, B., & Borgne, M. L. (2022) · Scandinavian Journal of Pain · doi:10.1515/sjpain-2022-0021 · Cited by 6
Mosterd, D., Niekerk, L. M. V., Mikocka‐Walus, A. A., Leonardi, M., Stanley, K., & Evans, S. (2026) · Women s Reproductive Health · doi:10.1080/23293691.2025.2602849 · Cited by 4
Pepin, K. J., Bologna, F., Thalken, R., & Wilkens, M. J. (2024) · Journal of Minimally Invasive Gynecology · doi:10.1016/j.jmig.2024.08.001 · Cited by 4
The Experience of Living with Endometriosis
Denny, E. (2011) · Springer eBooks · doi:10.1007/978-88-470-1866-2_4 · Cited by 4
Mendes, N. B., & Figueiredo, B. (2012) · Psicologia Saúde & Doenças · doi:10.15309/12psd130104 · Cited by 14
Brilz, A. R., & Gagnon, M. M. (2025) · Pain · doi:10.1097/j.pain.0000000000003534 · Cited by 3
Unheard Voices: Communicative (Dis)enfranchisement in Women’s Health Experiences in China
Chen, Y., & Turner, J. W. (2025) · Health Communication · doi:10.1080/10410236.2025.2566974 · Cited by 3
Arnstein, P. M. (2010) · Cited by 3
Sun, M. C., Sunnoo, K., & Vencatachellum, I. (2022) · International Journal of Africa Nursing Sciences · doi:10.1016/j.ijans.2022.100473 · Cited by 4
The Need for a Non-Invasive Technology for Endometriosis Detection and Care
Hine, A., Bowles, J., & Webber, T. (2023) · Studies in health technology and informatics · doi:10.3233/shti230073 · Cited by 3
Hunt, J. L. (2019) · Internet Journal of Allied Health Sciences and Practice · doi:10.46743/1540-580x/2019.1684 · Cited by 3
Negotiating serious illness : understanding young women's experiences through Photovoice
Burles, M. C. (2010) · University Library - University of Saskatchewan (University of Saskatchewan) · Cited by 3
Bucher, C. O., Martin, L., Santo, A. D., Pluchino, N., & Rio, L. M. (2025) · BMJ Open · doi:10.1136/bmjopen-2025-103140 · Cited by 2
Spain, J., Lattas, D., Powell, Z., & Davis, C. (2026) · Australian Social Work · doi:10.1080/0312407x.2025.2609823 · Cited by 2
Serum Chemokines and Quality of Life among Patients with Endometriomas and Teratomas
Wojciechowska, M., Chmaj-Wierzchowska, K., Wszołek, K., Bednarek, K., Jasielska, A., Parda, I., Rzymski, P., & Wilczak, M. (2022) · Clinical and Experimental Obstetrics & Gynecology · doi:10.31083/j.ceog4909207 · Cited by 2
UMA ANÁLISE QUALITATIVA DA CONVIVÊNCIA DA MULHER COM SUA ENDOMETRIOSE
da Matta, A. Z., & Müller, M. C. (2006) · Portuguese National Funding Agency for Science, Research and Technology (RCAAP Project by FCT) · Cited by 2
Covington, S. N., & Burns, L. H. (2001) · Cambridge University Press eBooks · doi:10.1017/cbo9780511547263.010 · Cited by 2
Heartsink patients and intractable conditions
Denny, E. (2009) · doi:10.1007/978-1-137-02125-0_13 · Cited by 2
Endometriosis Online Communities: A Quantitative AnalysisPreprint
Bologna, F., Thalken, R., Pepin, K. J., & Wilkens, M. J. (2024) · medRxiv · doi:10.1101/2024.02.27.24303445 · Cited by 2
Negotiating life choices : living with motor neurone disease
King, S. J. (2005) · Figshare · Cited by 2
Disclosing the invisible : experiences, outcomes and quality of endometriosis healthcare
Grundström, H. (2018) · Linköping University medical dissertations · doi:10.3384/diss.diva-151005 · Cited by 1
Enhancing and Personalising Endometriosis Care with Causal Machine Learning
Hine, A., Webber, T., & Bowles, J. (2024) · Lecture notes in networks and systems · doi:10.1007/978-3-031-74443-3_1 · Cited by 1
Dowding, C., Mikocka‐Walus, A. A., Skvarc, D., O’Shea, M., OLIVE, L. S., & Evans, S. (2025) · Counselling Psychology Quarterly · doi:10.1080/09515070.2025.2536559 · Cited by 1
Rysiak, E., Grajewska, A., Łońska, A., Tomaszewski, J., Kymona, K., & Rostkowska, J. (2025) · Diseases · doi:10.3390/diseases13090291 · Cited by 1
Read, K. A., Dewar-Haggart, R., Everitt, H., Morrison, L. G., Harris, S., & Bishop, F. L. (2026) · Women s Reproductive Health · doi:10.1080/23293691.2026.2680002 · Cited by 1
Freeman, E. C. (2009) · MacSphere (McMaster University) · doi:10.71548/13276 · Cited by 1
Falconer, L., Hendricks, E. L., & Harcourt, D. M. (2022) · Journal of Endometriosis and Pelvic Pain Disorders · doi:10.1177/22840265221139909 · Cited by 3
Leeners, B. (2011) · Wiley eBooks · doi:10.1002/9781444398519.ch52 · Cited by 1
Complementary and Alternative Medicine in Infertility Counseling
Gutmann, J. N., & Covington, S. N. (2001) · Cambridge University Press eBooks · doi:10.1017/cbo9780511547263.014 · Cited by 1
Penney, W. (2005) · FedUni ResearchOnline (Federation University Australia) · Cited by 1
LIFE CHOICES: LIVING WITH MOTOR NEURONE DISEASE
King, S. J. (2005)
Personal Accounts of Endometriosis: Online Narratives of Lives Shaped by Pain
Sabine, V. A. (2009)
THE EXPERIENCE OF INFERTILITY AND ENDOMETRIOSIS: SUGGESTIONS FOR HEALTH PROFESSIONAL
Vila, A. C. D., Vandenberghe, L., & Silveira, N. D. A. (2010) · Psicologia Saúde & Doenças · doi:10.15309/10psd110203 · Cited by 3
Protean Symptoms and Reductive Diagnosis
Wu, S.-M., Lee, H.-L., & Chiang, H. (2016) · International Journal of Gynecology & Clinical Practices · doi:10.15344/2394-4986/2016/114
Denouël, A., Fauconnier, A., & Torre, A. (2018) · Sages-Femmes · doi:10.1016/j.sagf.2018.06.005
Leeners, B. (2011) · Wiley eBooks · doi:10.1002/9781444398519.ch53
The Sexual Wellbeing of Men whose Partners Experience Painful Intercourse Due to Endometriosis
Keany, J. E. (2019) · The Sydney eScholarship Repository (The University of Sydney)
Ojha, A., & Kumar, D. (2022) · Mind and Society · doi:10.56011/mind-mri-112-202215
Directive clinique no 449 : Directive canadienne sur le diagnostic et les impacts de l’endométriose
Singh, S. S., Allaire, C., Al‐Nourhji, O., Bougie, O., Bridge-Cook, P., Duigenan, S., Kroft, J., Lemyre, M., Leonardi, M., Leyland, N. A., et al. (2024) · Journal of Obstetrics and Gynaecology Canada · doi:10.1016/j.jogc.2024.102451
Salazar, V. M. (2025) · Perifèria Revista d investigació i formació en Antropologia · doi:10.5565/rev/periferia.926
Unexpectedly high level of cancer antigen 125 (CA 125) in endometriosis: A case report
Kostrzanowski, M., Mandes, A., Ziółkowski, G., & Dabrowski, F. A. (2025) · Journal of Endometriosis and Pelvic Pain Disorders · doi:10.1177/22840265251363681
Williams, A. C. D. C., & McGrigor, H. (2024) · Figshare · doi:10.6084/m9.figshare.26669049
Williams, A. C. D. C., & McGrigor, H. (2024) · Figshare · doi:10.6084/m9.figshare.26669046
Identifying and characterizing clinical subgroups in individuals with endometriosis
Åkerblom, S., Jönsson, I. P., Ringqvist, Å., Nordengren, J., & Zhao, X. (2025) · Frontiers in Pain Research · doi:10.3389/fpain.2025.1610109 · Cited by 2
Rovito, M. (2026) · Springer eBooks · doi:10.1007/978-3-032-15681-5_8
Pencheri, M., Hansen, K. E., Nielsen, L. B., Dixon, S., Hinton, L., Prior, A., Forman, A., Marschall, H., Seyer‐Hansen, M., & Kirk, U. B. (2026) · European Journal of General Practice · doi:10.1080/13814788.2026.2648318
Planning Life Around Endo: The Impact of Endometriosis on Relationships
Noble, N., Winkelman, L., Jennings, S. L., & Grady, S. E. (2026) · The Family Journal · doi:10.1177/10664807261436789
Meagher, S., Frayne, J. S., Renshaw-Todd, J., & Ohan, J. L. (2026) · BMC Women s Health · doi:10.1186/s12905-026-04566-0
Shi, E., & Lee, P. (2026) · SSM - Qualitative Research in Health · doi:10.1016/j.ssmqr.2026.100803
Randhawa, A., Tufte‐Hewett, A., Jones, G. L., & Weckesser, A. (2026) · Women s Reproductive Health · doi:10.1080/23293691.2026.2697785
Metadata
- Authors
- Cox, H., Henderson, L., Andersen, N., Cagliarini, G., & Ski, C.
- Affiliations
- Deakin University (AU)
- Epworth Hospital (AU)
- Corresponding author
- Cox, Helen
- 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
- 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
- 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
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
