The Impact of Endometriosis on Quality of Life in Adolescents

J Adolesc Health. 2018 Dec;63(6):766-772. doi: 10.1016/j.jadohealth.2018.06.027.


Purpose: While endometriosis is recognized to have a high patient burden for adults, the level of morbidity it causes for adolescents has been understudied, and may be minimized by clinicians. The purpose of this study was to determine whether endometriosis has a significant impact on quality of life (QOL) for adolescents and young adults.

Methods: Five hundred and sixty-seven participants (360 cases and 207 controls) aged <25 years old who are enrolled in the Women's Health Study: From Adolescence to Adulthood longitudinal study were included in this analysis. Participants were enrolled from medical clinics and the communities surrounding Boston, MA. Participants completed an expanded World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project standard clinical questionnaire that included the Short Form-36 (SF-36), a widely used measure of health-related QOL. We calculated SF-36 physical component summary and mental component summary scores, as well as eight subscale scores. On the SF-36, lower scores reflect greater impairment.

Results: Adolescents with endometriosis had significantly lower physical component summary (mean [standard deviation]: 43.4 [11.1] vs. 53.8 [7.6], p < .0001) and mental component summary (43.3 [12.3] vs. 46.3 [10.8], p = .008) scores compared to controls, as well as lower scores on all eight subscales. More cases than controls reported mental health diagnoses, pain medication use, and avoidance of exercise during menstruation. Among cases, earlier age at menarche, more severe pelvic pain, and longer duration of diagnostic delay were associated with poorer QOL.

Conclusions: Endometriosis is associated with significantly worse reports of QOL for adolescents and young women with endometriosis compared to unaffected peers. Earlier menarche was associated with poorer physical health-related QOL among cases, whereas severe pelvic pain was associated with both poorer physical and mental health-related QOL among cases. Impairment in QOL is not limited to adults with endometriosis, but affects younger patients as well.

Trial registration: NCT00474851.

Keywords: Adolescent; Endometriosis; Health-related quality of life; Pelvic pain; WERF EPHect; Young adult.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Boston
  • Child
  • Delayed Diagnosis
  • Endometriosis / diagnosis*
  • Endometriosis / surgery
  • Female
  • Humans
  • Longitudinal Studies
  • Mood Disorders / drug therapy
  • Pelvic Pain
  • Quality of Life / psychology*
  • Surveys and Questionnaires
  • Young Adult

Associated data