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.

Key Words: Endometriosis, diagnosis, physician specialty, adolescence, pelvic pain, symptoms, health care