Patients with endometriosis in the vagina, bowel, or bladder experience a prolonged diagnostic delay: an observational study

STUDY QUESTION Do the diagnostic delay and symptoms differ between endometriosis patients with advanced disease, defined as endometriosis involving the vagina, intestine, rectovaginal septum, or bladder (eVIRB), compared to patients without endometriosis in these locations (non-eVIRB)? SUMMARY ANSWER Patients with advanced endometriosis had a significantly longer diagnostic delay, an earlier onset of symptoms, and more intense pain during menstruation. WHAT IS KNOWN ALREADY Endometriosis patients often experience years of symptoms before diagnosis. Whether there is an association between the length of this diagnostic delay and advanced disease remains unclear. Confirming such an association would underscore the importance of early diagnosis to ensure appropriate treatment, which may reduce the risk of irreversible organ damage and high-risk surgery for patients. STUDY DESIGN, SIZE, DURATION This is an observational cohort study of 129 patients undergoing endometriosis surgery conducted over a 3-year period. The first patient was operated on in November 2019. All patients reported retrospective questionnaire data, and surgeons described surgical findings. PARTICIPANTS/MATERIALS, SETTING, METHODS The patients were operated on for predominantly moderate to severe endometriosis at a Tertiary Endometriosis Centre in Denmark. The diagnostic delay was calculated from questionnaire data and related to intraoperative findings. Selected symptoms were compared. MAIN RESULTS AND THE ROLE OF CHANCE The median diagnostic delay was 5 years. However, the patients with eVIRB (n = 75) experienced a significantly longer median diagnostic delay of 9 years compared to non-eVIRB patients (n = 54), who had a median delay of only 2 years (P = 0.005). The odds ratio of having eVIRB was 5-fold (95% CI 2.18-11.61, P < 0.001) increased if the diagnostic delay exceeded 5 years, and they reported a significantly earlier onset of endometriosis symptoms. Both groups reported numerous pain symptoms, with a significant difference observed only in responses regarding severe period cramps requiring bed rest and use of painkillers. The eVIRB group had used hormones significantly longer and had taken painkillers more regularly due to pelvic pain. LIMITATIONS, REASONS FOR CAUTION The retrospective data may be affected by recall bias. This study describes associations between a prolonged diagnostic delay and advanced disease, not causality. WIDER IMPLICATIONS OF THE FINDINGS This study is the first to describe an association between advanced endometriosis and a prolonged diagnostic delay after adjusting for total years of hormonal use and age at surgery. Future research should concentrate on strategies to achieve earlier diagnosis for patients presenting with this advanced form of the disease, given the potential for severe complications. STUDY FUNDING/COMPETING INTEREST(S) Ferring Pharmaceuticals (MiHSN01) and partial funding from The European Union's Horizon 2020 research and innovation programme (No. 101017562). None of the funders was involved in the study design, data collection, analysis, writing of this paper, or the decision to submit it for publication. H.S.N. reports speakers' fees from Ferring Pharmaceuticals, Merck Denmark A/S, IBSA Nordic, AstraZeneca, Cook Medical, Gedeon Richter, and Novo Nordisk outside the submitted work. No other conflicts are reported. TRIAL REGISTRATION NUMBER N/A.