Circuit Breaking: Pathways of Treatment Seeking for Women With Endometriosis in Australia

Abstract

Pain resulting from endometriosis is experienced as both a chronic, ongoing condition and an acute episode at time of menstruation, often occurring in association with diarrhea, vomiting, nausea, heavy bleeding, and other reactions. Women expect pain with menstruation, however, and even if they experience major disruptions as a result, they find it difficult to distinguish normal from pathological discomfort. Drawing on qualitative research conducted from 2004 to 2006, we describe the “circuit breakers” that lead Australian women to seek medical advice. These include outside intercession, major disruptions to everyday life, changes in embodied experience, and difficulties in conception and pregnancy. Women's ideas of menstrual pain as “normal” are shared by doctors, resulting in further delays before a definitive diagnosis of endometriosis is made. During this time, women move between doctors and in and out of medical care, which they described through particular narrative styles to highlight the complexity of help seeking. We explore the ways in which ideas of gender, informed by women's embodiment but also the quality of their reporting of symptoms, influence their interactions with health professionals.

“Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health

“…Most of our participants recounted difficulties with doctors, friends, and families who normalized or even trivialized their pain. Several studies underlined how dangerous it may be to underestimate period pain complaints (Manderson et al 2008). Our findings confirm that normalization of pain can lead to diagnostic delays, which represent a major source of distress for women.…”

The Patient-Centeredness of Endometriosis Care and Targets for Improvement: A Systematic Review

“…For each target, 1 qualitative interview study documented their value, but there was no agreement regarding their service quality assessment among these qualitative studies and 1 quantitative survey. Some patients had an unmet need for information from several sources [47], sufficient information [45,48] and staff skilled to discuss pain (table 3) [37,43]. ‘So when I saw the consultants they would basically say “So, you've got pain?”.…”

“…However, 3 qualitative studies demonstrated that patients valued their partners and mothers who empowered them to seek help [43,45,46] and supported them [37,46]. …”

“…A timely diagnosis is a primary patient-centered improvement target for endometriosis care (table 3), as 5 qualitative studies agreed on its importance [40,41,43,44,45] and 9 qualitative studies agreed on a problematic service quality [37,38,40,41,42,43,44,45,46]. ‘I think the biggest problem initially was getting a diagnosis which took years' [44].…”

“…Patients have an unmet wish for being respected by GPs, gynecologists and hospital consultants [37,38,40,41,42,43,44,46], shared decision-making [45], being treated like a person [37] and being believed by GPs and hospital consultants [37,40,41,43,44,45,46]. ‘When they gave me my endo-diagnosis, I was fuming that I hadn't been believed and that I hadn't been taken seriously…' [43].…”