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.


METHODS
Cross-sectional study of self-reported survey data.


METHODS
Academic research.


METHODS
Four thousand three hundred thirty-four Endometriosis Association Survey respondents reporting surgical diagnosis of endometriosis.


METHODS
None.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Greene
Rebecca
R
Reproductive Biology and Medicine Branch, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland 20892-1871, USA.
Stratton
Pamela
P
Cleary
Sean D
SD
Ballweg
Mary Lou
ML
Sinaii
Ninet
N
D000293:Adolescent; D000328:Adult; D003430:Cross-Sectional Studies; D004715:Endometriosis / Q000150:complications / Q000175:diagnosis* / Q000453:epidemiology / Q000601:surgery*; D005260:Female; D013509:Gynecologic Surgical Procedures / Q000009:adverse effects*; D006306:Health Surveys; D006801:Humans; D015994:Incidence; D007247:Infertility, Female / Q000453:epidemiology / Q000209:etiology; D008875:Middle Aged; D010149:Postoperative Pain / Q000453:epidemiology; D017699:Pelvic Pain / Q000453:epidemiology / Q000209:etiology; D044469:Racial Groups; D011795:Surveys and Questionnaires