The search for a cause: women's experiences of pelvic pain prior to receiving a diagnosis of endometriosis

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.