Younger women with endometriosis struggle with dyspareunia, quality of life

May 6, 2020

Adolescent and young adult women with endometriosis are twice as likely to experience dyspareunia as those without endometriosis, according to a study in the Journal of Adolescent Health.

Adolescent and young adult women with endometriosis are twice as likely to experience dyspareunia as those without endometriosis, according to a study in the Journal of Adolescent Health. In addition, all subscale scores on the Short Form-36 (SF-36) quality-of-life (QOL) survey were significantly lower among patients with dyspareunia (with or without endometriosis) than those without dyspareunia.

All 438 study patients were from the longitudinal cohort Women’s Health Study: From Adolescence to Adulthood (aged 18 to 25 at enrollment). The investigation was inspired by first author Madeline Schneider, a first-year medical student at the Geisel School of Medicine at Dartmouth who was a research assistant for the study.

“While reading through responses to the baseline Women’s Health Study questionnaires, which are completed by all study participants, Madeline noticed a trend that young women who reported dyspareunia also seemed to have low SF-36 QOL scores and reported positive responses to other items indicating stress/emotional burden,” said principal investigator Amy DiVasta, MD, an associate professor of pediatrics at Harvard Medical School and Boston Children’s Hospital Division of Adolescent Medicine.

Participants in the study were recruited from two major hospitals in the greater Boston area and the surrounding communities. In total, there were 151 patients with endometriosis and 287 patients without known endometriosis. The majority of young women with endometriosis were enrolled in school, while most of those without endometriosis reported being employed.

Dyspareunia was defined as answering "yes" to having had pain during or within 24 hours after sexual intercourse. In the sexually active cohort, 119 women with endometriosis and 115 without known endometriosis reported pain with sexual intercourse. Overall, 79% of study patients with endometriosis experienced dyspareunia, compared to only 40% without endometriosis (P < 0.0001).

And for six SF-36 subscale scores, the negative impact was significantly greater in young women with endometriosis than those without, and mean scores were all less than the normative score, indicating impairment in health-related QOL. In particular, women with both endometriosis and dyspareunia scored significantly lower on the subscales for emotional role functioning and vitality.

“To an extent, these findings are both surprising and unsurprising,” Dr. DiVasta told Contemporary OB/GYN. “We have seen that adolescents with endometriosis already experience tremendous burden due to pain from their disease, and from the toll that it takes on their ability to participate in school and social functions. As a result, it is surprising that one particular experience dyspareunia could have such a profound impact on their quality of life, when other areas may also be similarly impacted.”

Conversely, given that QOL in young women without endometriosis who experience dyspareunia “may be diminished in comparison to their peers without dyspareunia is not surprising,” Dr. DiVasta said.

Study results underscore how important experiences around sexuality and intercourse, especially those that occur at an early age, may be for identity, social functioning, and mental health in young women, according to Dr. DiVasta.

To enhance the quality of life in this patient population of those with and without endometriosis, Dr. DiVasta recommends that practitioners ask their patients not only whether they are having sexual experiences, but whether those experiences are accompanied by dyspareunia.

“This will allow clinicians the opportunity to provide appropriate education and counseling if needed, which may improve quality of life for these patients,” she said.

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Dr. DiVasta reports no relevant financial disclosures.