Patient-Physician Interactions Regarding Dyspareunia With Endometriosis: Online Survey Results [33M

Abstract

INTRODUCTION: Dyspareunia is a challenging symptom of endometriosis-related pelvic pain, exacerbated by suboptimal communication between the patient and healthcare professional (HCP). Our aim was to describe patient-HCP communications regarding diagnosis and management of dyspareunia in endometriosis patients. METHODS: An IRB-approved 24-question online English-language survey was conducted among women 19 years or older who self-identified as having endometriosis and dyspareunia. Women were asked about their interactions with HCPs about dyspareunia. Participants were recruited via MyEndometriosisTeam (a social network for women with endometriosis); members were invited by e-mail. Other participants were solicited via invitations posted on MyEndometriosisTeam’s Facebook page. Invitation to participate included a link to an anonymous survey. RESULTS: Of the 32,865 invited participants, 357 US women completed the survey with an 11% open rate and 10.3% response rate. Most respondents (83%) were between 19 and 29 years old; 85% reported to have discussed painful sex with a gynecologist, while only 33% were told their condition might be dyspareunia. Among those who did not seek help, 34% indicated that they were too embarrassed, while 26% did not think anything could lessen the pain. 42% of women agreed that it would be easier to discuss painful sex if the HCP initiated the discussion. Women reported that HCPs most often recommend surgery (46%) and over-the-counter pain medication (36%) for dyspareunia, while 18% provide no advice. CONCLUSION: In this online survey, the majority of women reported suboptimal communication with HCPs when seeking help for dyspareunia, highlighting the need for better dialogue about dyspareunia between patients and physician.