Endurance and contest: women's narratives of endometriosis
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Abstract
Endometriosis is an often painful medical condition in which, in response to hormones associated with the menstrual cycle, the uterine lining grows in the peritoneum and other organs, bleeding into the surrounding organs and tissues. Diagnosis is not always straightforward, and women and health professionals alike may have difficulties recognizing period pain as a sign of anomaly, considering it instead as an inevitable part of menstruation. This article describes the illness narratives of Australian women with endometriosis, drawing on data collected during a study conducted in Victoria in 2004-5. Thirty women (aged 20-78 years) from various socio-demographic backgrounds participated in in-depth interviews. We explore the influence of socio-demographic background and social and family norms on women's illness narratives of endurance and contest. Narratives of endurance are characterized by the normalization of period pain by young women, their families and health professionals, and, with diagnosis, long-term exposure to biomedical treatments. In contrast, narratives of contest are dominated by how women's subjective experience is challenged by doctors, their requirements for a patient-centered approach, and their desire to have access to complementary treatments.
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References (46)
- Chronic Pelvic Pain: Prevalence, Health-Related Quality of Life, and Economic Correlates via openalex
- Delay in the diagnosis of endometriosis: a survey of women from the USA and the UK via openalex
- Diagnostic delay in women with pain and endometriosis via openalex
- Educational achievement and pain disability among women with chronic pelvic pain via openalex
- Endometriosis, an unknown entity: the consumer's perspective via openalex
- Endometriosis: epidemiology and aetiological factors via openalex
- Factors Influencing Outcome in Consultations for Chronic Pelvic Pain via openalex
- Focus group study of endometriosis: Struggle, loss and the medical merry‐go‐round via openalex
- Impact of endometriosis on women's health: comparative historical data show that the earlier the onset, the more severe the disease via openalex
- Incidence of Laparoscopically Confirmed Endometriosis by Demographic, Anthropometric, and Lifestyle Factors via openalex
- Learning to take charge: women's experiences of living with endometriosis via openalex
- Putting Pain to Paper: Endometriosis and the Documentation of Suffering via openalex
- Quality of sex life in women with endometriosis and deep dyspareunia via openalex
- The impact of endometriosis upon quality of life: a qualitative analysis via openalex
- Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women via openalex
- W2066687321 via openalex
- W2068464249 via openalex
- W2074105108 via openalex
- W2087682727 via openalex
- W56896545 via openalex
- W2091146519 via openalex
- W2102371506 via openalex
- W2118212054 via openalex
- W2126242742 via openalex
- W2129660502 via openalex
- W2167477996 via openalex
- W2171380100 via openalex
- W2184249874 via openalex
- W2328062713 via openalex
- W2329223578 via openalex
- W4233717222 via openalex
- W2088173492 via openalex
- W115394847 via openalex
- W1971902637 via openalex
- W1972112636 via openalex
- W1975607276 via openalex
- W1988145763 via openalex
- W1990163537 via openalex
- W1999996730 via openalex
- W2000117884 via openalex
- W2014771677 via openalex
- W2023803373 via openalex
- W2030490936 via openalex
- W2047459152 via openalex
- W2052784041 via openalex
- W2056209597 via openalex
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- Current usage of qualitative research in female pelvic pain: a systematic review 2019
- Biopsychosocial predictors of symptoms of depression in a sample of South African women diagnosed with endometriosis 2019
- Quando os olhos não veem o que as mulheres sentem: a dor nas narrativas de mulheres com endometriose 2018
- Republication de : Attentes des femmes atteintes d’endométriose : Quelle information apporter ? RPC Endométriose CNGOF-HAS 2018
- Attentes des femmes atteintes d’endométriose : quelle information apporter ? RPC Endométriose CNGOF-HAS 2018
- How do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York City 2018
- Living with painful endometriosis – A struggle for coherence. A qualitative study 2018
- A experiência de adoecimento de mulheres com endometriose: narrativas sobre violência institucional 2017
- Therapeutic Affordances of Online Support Group Use in Women With Endometriosis 2016
- Temperament, Beliefs About Pain Control, and Pain Intensity in Endometriosis Patients 2016
- A Qualitative Study on the Practice of Yoga for Women with Pain-Associated Endometriosis 2016
- Protean Symptoms and Reductive Diagnosis 2016
- Perception and Experiences of Patients with Endometriosis about Pain: A Qualitative Study 2015
- Att leva med endometrios 2015
- Patients’ and physicians’ descriptions of occurrence and diagnosis of endometriosis: a qualitative study from Iran 2014
- Women's experiences of endometriosis: a systematic review and synthesis of qualitative research 2014
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