Diagnostic delay in endometriosis: is there any progress?

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 conducted in 11 hospitals in the Netherlands between 2021 and 2023. A total of 9551 medical charts were screened and 2289 patients, who had a confirmed diagnosis of endometriosis between 2018 and 2020 by ultrasound, MRI or surgery, 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 836 participants returned the questionnaire (response rate 36.6%). The total median diagnostic delay was seven years (interquartile range (IR) 2-15 years). The median patient delay was one year (IR 0-2 years), the median general practitioner delay was also one year (IR 0-9 years) and the median gynaecologist delay was less than one year (IR 0-1 year). The longest diagnostic delays were found in patients who presented themselves with dysmenorrhea or bleeding problems. Diagnostic delay was statistically significantly shorter in patients presenting with pelvic pain, infertility or abdominal wall mass (p<0.05). In patients with abdominal wall endometriosis, diagnostic delay was statistically significantly shorter as compared to combined peritoneal and deep endometriosis (p<0.05). Conclusions The total diagnostic delay from onset of symptoms until confirmed diagnosis of endometriosis among patients in large general and university hospitals in the Netherlands is seven years.