522
Circuit Breaking: Pathways of
Treatment Seeking for Women With
Endometriosis in Australia
Lenore Manderson
Narelle Warren
Milica Markovic
Monash University, Caufield East, Victoria, Australia
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 med-
ical 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.
Keywords: chronic illness; pain; women’s health; decision making; grounded theory; health care professionals
C
ontemporary social beliefs influence both medical
practice and patients’ interpretations of symptoms
and illness. These beliefs often explain diagnostic
delays associated with patients’ and health profession-
als’ non-recognition and/or dismissal of warning signs
and symptoms, supplementing the structural and cir-
cumstantial factors that shape access to health care.
Although much contemporary research focuses on
patterns of treatment seeking, self-care, diagnosis, and
treatment in relation to infectious disease and child
health, researchers have also drawn attention to the delays
that occur in cases of chronic—particularly contested—
health conditions (Clarke & James, 2003; Dumit, 2006;
Glenton, 2003; Lipson, 2001; Markovic, Manderson, &
Quinn, 2004; Nettleton, 2006).
Endometriosis, the focus of this article, is a con-
dition of unknown etiology in which uterine lining
(endometrial tissue) grows outside of the uterus, most
commonly in the pelvic and abdominal cavities
(Farquhar, 2007; Henderson & Wood, 2000; Jackson &
Telner, 2006). Although the prevalence of endometrio-
sis in Australia is unknown, estimates suggest that
approximately 10% of women experience the condition
(Henderson & Wood, 2000). Diagnosis of endometrio-
sis occurs through visual diagnosis, determined during
laparoscopy (Farquhar, 2007; Pugsley & Ballard, 2007).
In many cases, although not all, the condition is resolved
by menopause (Jackson & Telner, 2006), but women
who experience extended periods of pain are rarely
happy to delay treatment until this time. Even so, treat-
ment-seeking and diagnostic delays are common (Cox,
Henderson, Anderson, Cagliarini, & Ski, 2003; Cox,
Ski, Wood, & Sheahan, 2003; Grace, 1995a, 1995b).
Women who are eventually diagnosed with
endometriosis frequently experience delays of between
6.7 years and 11.7 years from the onset of their symp-
toms to diagnosis (European data as described by
Husby, Haugen, & Moen, 2003; Pugsley & Ballard,
2007). In Australia, women experience an average delay
Qualitative Health Research
Volume 18 Number 4
April 2008 522-534
© 2008 Sage Publications
10.1177/1049732308315432
http://qhr.sagepub.com
hosted at
http://online.sagepub.com
Authors’ Note: Correspondence concerning this article should be
sent to: Lenore Manderson, School of Psychology, Psychiatry
and Psychosocial Sciences, Monash University, Level 4, Building
F, 900 Dandenong Road, Caufield East, Victoria 3145, Australia.
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