Diagnostic Limbo Hurts: Pain and Mental‑Health Burden in Diagnosed, Suspected and Unaffected Menstruators

Abstract Background Endometriosis affects ~ 10% of women, yet diagnosis is delayed 7–10 years, exposing patients to prolonged pain, clinician dismissal, and worsening mental health. Comparative data across diagnostic stages are limited. Methods A cross-sectional, anonymous online survey (Feb–Apr 2025) recruited adults assigned female at birth who currently identify as female (≥ 18 y) via targeted social-media posts. Respondents self-classified as (i) surgically/clinically diagnosed with endometriosis, (ii) symptomatic but undiagnosed, or (iii) asymptomatic controls. Instruments comprised a 0–10 pelvic-pain scale, two-item Perceived Dismissal Scale, and PHQ-9 (α = 0.88). Group differences were tested with one-way ANOVA (Bonferroni) and χ²; Hedges g and Cramér V quantified effect sizes. Results Among 473 participants (diagnosed = 332; symptomatic-undiagnosed = 94; controls = 47), pain was highest in the symptomatic-undiagnosed group (7.8 ± 1.8) versus diagnosed (7.7 ± 1.9) and controls (4.5 ± 2.3); F(2,470) = 158, p < 0.001, g = 1.71. Depressive burden mirrored this pattern (PHQ-9 = 8.4 ± 5.0 vs 7.6 ± 4.9 and 5.3 ± 4.1); F(2,470) = 12.4, p < 0.001, g = 0.69. Perceived dismissal was reported by 92% of symptomatic-undiagnosed, 86.5% of diagnosed, and 10% of controls (χ²=255, p < 0.001, V = 0.74). Conclusions Individuals trapped in diagnostic limbo shoulder the heaviest pain and depressive load, underscoring the mental-health cost of delayed recognition. Integrating routine pelvic-pain and depression screening with trauma-informed communication in primary care may hasten diagnosis and reduce burden.