Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis

Fertil Steril. 2009 Jan;91(1):32-9. doi: 10.1016/j.fertnstert.2007.11.020. Epub 2008 Mar 25.


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.

Publication types

  • Research Support, N.I.H., Intramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Continental Population Groups
  • Cross-Sectional Studies
  • Endometriosis / complications
  • Endometriosis / diagnosis*
  • Endometriosis / epidemiology
  • Endometriosis / surgery*
  • Female
  • Gynecologic Surgical Procedures / adverse effects*
  • Health Surveys
  • Humans
  • Incidence
  • Infertility, Female / epidemiology
  • Infertility, Female / etiology
  • Middle Aged
  • Pain, Postoperative / epidemiology
  • Pelvic Pain / epidemiology
  • Pelvic Pain / etiology
  • Surveys and Questionnaires