Background: Many women seek medical help for what is broadly defined as 'chronic pelvic pain',
with a prevalence rate of 24% in Primary Care (1). A frequent cause of this pain is
endometriosis, with a 10% prevalence rate in women of reproductive age (2). The diagnostic
delay for this condition is reported to be between 6–9 years (3). Little is known,
however, about why the diagnosis of this condition takes so long and how this affects
women's experiences of the condition. Aims: To investigate the reasons for a delayed diagnosis of endometriosis and examine the
impact of this on women's experiences. Method: A qualitative study, using semi-structured interviews. Thirty-two women were recruited
from a pelvic pain clinic waiting list. Interviews were taped, transcribed and the
data analysed using an interpretive approach. Six months following interview, follow-up
data were obtained from hospital medical records to determine the final diagnosis.
Twenty-six women were diagnosed as having endometriosis and were therefore included
in the analysis. Results: The large majority of women (80%) reported a diagnostic delay of their pelvic pain,
with just under half of the sample experiencing symptoms for over ten years before
they were diagnosed with endometriosis. This lack of diagnosis not only generated
anxiety about possible causes for symptoms, but for many women, it affected their
self-image and often led to a breakdown in social support networks. The delayed diagnosis
occurred at both an individual and a medical level. Individually, women tended to
normalise their symptoms, perceiving themselves as 'unlucky'. At a medical level,
women reported experiencing a delayed diagnosis for three key reasons; 1) normalisation
of pain by the family doctor; 2) intermittent hormonal suppression of symptoms; and
3) false-negative investigations, particularly trans-vaginal ultrasound. Conclusions: Diagnostic delays in endometriosis occur at an individual and medical level, each
having a potentially detrimental effect on women's experiences. Improved recognition
of the symptoms of endometriosis, by women as well as family doctors, is likely to
reduce the diagnostic delay, and in turn, decrease anxiety and breakdown of social
support. The value of trans-vaginal ultrasound for the diagnosis of endometriosis
needs to be examined further in order to reduce the negative impact of false-negative
results on women's experiences of endometriosis.
References:
1) Zondervan KT, Yudkin PL, Vessey MP, Jenkinson CP, Dawes MG, Barlow DH, Kennedy
SH. The community prevalence of chronic pelvic pain in women and associated illness
behaviour. British Journal Of General Practice 2001;51(468):541–7.
2) Vigano, P., Parazzini, F., Somigliana, E & Vercellini, P. (2004) Endometriosis:
epidemiology and aetiological factors. Best Practice and Research: Clinical Obstetrics
and Gynaecology. 18;2:177–2003
3) Dmowski WP, Lesniewicz R, Rana N, Pepping P, Noursalehi M. Changing trends in
the diagnosis of endometriosis: a comparative study of women with pelvic endometriosis
presenting with chronic pelvic pain or infertility. Fertility Sterility. 1997 Feb;67(2):238–43.
