Quality of Life in Adolescent and Young Adult Women With Dyspareunia and Endometriosis

Abstract

PurposeThe purpose of this study is to quantify the prevalence of dyspareunia and its impact on quality of life (QOL) in adolescent and young adult women (AYA) diagnosed with endometriosis. MethodsEligible participants from the Women’s Health Study: From Adolescence to Adulthood, a longitudinal cohort study, were AYA 18–25 years who reported having had sexual intercourse. We included n = 151 AYA with a surgical diagnosis of endometriosis and n = 287 without known endometriosis. Participants completed a questionnaire including the Short Form-36 (SF-36) QOL survey, on which lower scores indicate impairment. Dyspareunia was defined as answering “yes” to having had pain during/within 24 hours following sexual intercourse. Normative-based scores for SF-36 subscales were calculated and compared between groups using linear regression adjusted for age, body mass index, educational level, and race. ResultsParticipants with endometriosis experienced dyspareunia twice as often (79%) than AYA without endometriosis (40%, p < .0001). In participants with and without endometriosis, all SF-36 subscale scores were significantly lower in AYA with dyspareunia than without. For six subscales, the negative impact was significantly stronger in AYA with endometriosis than those without, and mean scores were all less than the normative score, indicating impairment. ConclusionsMore than three quarters of AYA with endometriosis and two thirds without experience dyspareunia that negatively impacts both physical and mental health QOL scores. This impairment is stronger in those with endometriosis. Given the importance of relationships and peer engagement for identity formation during adolescence, dyspareunia could be particularly impactful. Clinicians should ask patients not only about contraception and prevention of sexually transmitted infections, but inquire about how dyspareunia may impact mental and physical well-being.