Page 169 - Diagnostic delay of endometriosis

Endometriosis is one of the most common benign gynaecologic conditions, with an estimated prevalence of 2-10% in women of reproductive age. It is defined as the presence of endometrial like tissue outside the uterus, which can cause chronic pelvic pain and subfertility. There are three types of endometriosis: peritoneal endometriosis, ovarian endometrioma and deep endometriosis. The clinical appearance of the condition is highly variable, which poses difficulties for clinicians to diagnose the condition in a timely matter. The aim of the thesis is to study all relevant determinants of the diagnostic delay of endometriosis in a multidimensional approach.
Chapter 1 describes the current theories on the pathogenesis of endometriosis, the clinical aspects of reaching a diagnosis and an overview of the literature regarding diagnostic delay of endometriosis, serving as an introduction to the studies presented in this thesis.
In chapter 2, the duration of the diagnostic delay of endometriosis in The Netherlands is determined by interviewing 93 women with confirmed endometriosis treated in a hospital with expertise in endometriosis. Median time between onset of symptoms and diagnosis was 89 months or 7.4 years. Diagnostic delay was shorter for women consulting their general practitioner because of subfertility as compared to women with pain or other pelvic symptoms (median delay of 21 versus 100 months, p=0.024). Median age of onset of symptoms was 20 years while median age at diagnosis was 31 years. The diagnostic delay consisted of three elements: the interval between onset of symptoms and seeking medical help, also referred to as the patient’s delay, the interval between first consultation in primary care and referral to a gynaecologist (the general practitioner’s delay), and the time between first specialist consultation and diagnosis (the gynaecologist’s delay). The median patient’s delay was 7 months, the general practitioner’s delay 35 months and the gynaecologist’s delay 5 months. The patients’ perspective in the diagnostic delay is further elucidated in the qualitative study presented in chapter 3. The aim of this study was to identify strengths and weaknesses in the current diagnostic process of endometriosis from the patients’ point of view. In this study, 23 women with endometriosis reflected on their own experiences in the diagnostic process in six focus group sessions. Three main themes emerged: 1) knowledge about normal menstruation and endometriosis in both the general population and medical professionals, 2) being believed and acknowledged by medical professionals, and 3) collaboration between health care providers including fast referral to a gynaecologist.
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