Diagnostic delay in endometriosis: is there any progress?

Abstract

Research question: What is the current time to diagnosis among patients with endometriosis in the Netherlands, and what factors influence this time? Design: A retrospective questionnaire study was conducted in 11 hospitals in the Netherlands between 2021 and 2023. A total of 9551 medical charts were screened, and 2289 patients with a confirmed diagnosis (ultrasound, magnetic resonance imaging or surgery) of endometriosis between 2018 and 2020 were included. Information about demographics, type of endometriosis, time to diagnosis, leading symptoms and referral was collected, and supplemented with information from the electronic health record. Results: A total of 837 participants returned the questionnaire (response rate 36.6%). The total median diagnostic delay was 7 years (IQR 2–15 years). The median patient delay was 1 year (IQR 0–2 years), the median general practitioner delay was 1 year (IQR 0–9 years), and the median gynaecologist delay was <1 year (IQR 0–1 year). The longest diagnostic delays were found in patients who presented with dysmenorrhoea or bleeding problems. Diagnostic delay was significantly shorter in patients presenting with pelvic pain, infertility or an abdominal wall mass (P < 0.001). In patients with abdominal wall endometriosis, the diagnostic delay was significantly shorter compared with patients with combined peritoneal and deep endometriosis (P < 0.001). Conclusions: The total diagnostic delay from symptom onset until confirmed diagnosis of endometriosis among patients in large general and university hospitals in the Netherlands is 7 years.