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Introduction Dyspareunia can be a debilitating symptom of endometriosis. We performed this study to examine women’s experiences with painful sexual intercourse, the impact of dyspareunia on patients’ lives, and perceptions of interactions with healthcare practitioners. Methods An anonymous 24-question online survey was provided through the social media network MyEndometriosisTeam.com and was available internationally to women aged 19–55 years who were self-identified as having endometriosis and had painful sexual intercourse within the past 2 years. Results From June 13 to August 20, 2018, 860 women responded and 638 women completed the survey (United States, n = 361; other countries, n = 277; 74% survey completion rate). Respondents reported high pain levels (mean score, 7.4 ± 1.86; severity scale of 0 [no pain] to 10 [worst imaginable pain]), with 50% reporting severe pain [score of 8 to 10]). Nearly half (47%) reported pain lasting ≥24 hours after intercourse with the pain often leading to avoiding (34%) or stopping (29%) intercourse. Pain impacted patients’ lives, causing depression (61%), anxiety (61%), low self-esteem (55%), and relationship strain. Many women feared to seek help (10%). Of those women who approached practitioners, many (36%) did not receive effective treatments. Discussion Women with dyspareunia related to endometriosis experience severe pain that can negatively impact patients’ lives. Dyspareunia may be a challenging topic for discussion for both patient and practitioner, leading to a suboptimal treatment approach and management. Results suggest that practitioners need improved education and training regarding dyspareunia to evaluate and treat patients’ sexual pain caused by endometriosis. |
