Page 17 - Diagnostic delay of endometriosis

eventual diagnosis. Delay in the diagnosis of endometriosis is a significant barrier in the management of this condition, leading to years of suboptimal treatment and possible disease progression.43, 44 This is an unfavourable situation, given the impact on physical, emotional and social wellbeing for individual women and the economic burden to society.
Studies addressing the length of the diagnostic delay of endometriosis have reported delays up to eleven years.7, 26, 44-48 The first scientific study directed at the diagnostic delay was presented by Hadfield and co-workers in 1996.46 They confirmed prior non-published observations from endometriosis self- help groups in a population of patients from the USA and UK, and identified a diagnostic delay of 11.73 and 7.96 years respectively. Nnoaham and co- workers performed a study in 16 hospitals in ten countries throughout the world and found an average diagnostic delay of 6.7 years (range 3.3-10.7 years). The delay was longer in centres with predominantly state-funded health care compared with self- or insurance funded health care. They stated that the delay was mainly due to late referral from primary care physician to gynaecologist. Affected women reported on average seven primary care consultations before specialist referral was effectuated.7 A study by Arruda and co-workers identified a young age at onset of symptoms and pelvic pain as presenting symptoms as compared with infertility as relevant factors negatively affecting diagnostic delay.26 This association was seen in other studies as well.44, 49 In addition, Hudelist and co-workers found that 74% of patients received at least one false diagnosis prior to surgical confirmation of endometriosis. In this study, misdiagnosis, mothers considering menstruation as a negative event and normalization of dysmenorrhea by patients significantly prolonged the diagnostic delay.48 Ballard and co-workers performed a qualitative study in women with endometriosis and identified factors contributing to the diagnostic delay of endometriosis on both the individual patient and medical level.45 Potential causes of delay at women’s personal level included difficulties in distinguishing between “normal” and “abnormal” menstrual experiences and delayed disclosure of symptoms to family and friends because of embarrassment. Three key factors contributing to the delay at the medical level were identified: normalization of pain by family doctors, intermittent use of contraceptives causing hormonal suppression of symptoms and the use of non-discriminatory investigations. Furthermore, the importance of receiving a diagnosis as explanation for their often disabling symptoms was stressed by the participating women, since this provided them with a language in which to discuss their condition, offered possibilities for
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