Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis

OBJECTIVE: To determine whether first physician seen and symptoms beginning in adolescence have an impact on the diagnostic experience of endometriosis. DESIGN: Cross-sectional study of self-reported survey data. SETTING: Academic research. PATIENT(S): Four thousand three hundred thirty-four Endometriosis Association Survey respondents reporting surgical diagnosis of endometriosis. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Specialty of first physician seen, timing of onset of symptoms, time to seeking medical care and to diagnosis, number of physicians seen, and satisfaction with care. RESULT(S): Almost all respondents reported pelvic pain. Fifty percent first saw a gynecologist and 45% saw a generalist for symptoms related to endometriosis. Two thirds reported symptoms beginning during adolescence; they waited longer to seek medical care than adults did. Those seeing a generalist first took longest to get diagnosed; those seeing a gynecologist first saw fewer physicians. Sometime before diagnosis, 63% were told nothing was wrong with them. CONCLUSION(S): Women and girls who reported seeing a gynecologist first for symptoms related to endometriosis were more likely to have a shorter time to diagnosis, to see fewer physicians, and to report a better experience overall with their physicians. The majority reported symptoms beginning during adolescence, also reporting a longer time and worse experience while obtaining a diagnosis.