Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis
Received 9 September 2007; received in revised form 8 November 2007; accepted 9 November 2007. published online 25 March 2008.
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.
aReproductive Biology and Medicine Branch, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland
bDepartment of Epidemiology and Biostatistics, School of Public Health and Health Services, The George Washington University, Washington, District of Columbia
cEndometriosis Association International Headquarters, Milwaukee, Wisconsin
dBiostatistics and Clinical Epidemiology Service, Clinical Center, National Institutes of Health, Bethesda, Maryland
Reprint requests: Ninet Sinaii, Ph.D., Biostatistics and Clinical Epidemiology Service, Clinical Center, National Institutes of Health, 10 Center Drive, Building 10, Room 2N-228, Bethesda, MD 20892-1871 (FAX: 301-496-0457).
The 1998 Endometriosis Association Survey was supported by an unrestricted educational grant from Zeneca Pharmaceuticals. The research for this study was supported by the Intramural Program of the National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Maryland, and the Endometriosis Association International Headquarters, Milwaukee, Wisconsin.
ABSTRACT