059 Health Care Experiences of Women with Symptoms of Persistent Genital Arousal

Abstract

Persistent genital arousal disorder (PGAD)1 is characterized by symptoms of physiological sexual arousal (vasocongestion, sensitivity of the genitals and nipples) that are described as unwanted and sometimes painful. PGAD is associated with distress, worry, depression, and stress2. There is limited systematic research on PGAD, including the health care experiences of this population3. The aim of this study was to gather information about women’s health care experiences pertaining to their persistent genital arousal (PGA) symptoms. Women experiencing symptoms of PGA for three months or longer (N = 111) completed a comprehensive online survey between October 2015 and April 2016. The survey utilized a mixed-methods approach. Women provided information on the number of health care providers (HCPs) seen, the helpfulness of providers, their comfort level discussing PGA symptoms with their primary HCP and specialists, and answered open-ended questions regarding their treatment experiences. The majority of women had seen 3-5 (n = 40, 29.2%) or 6+ (n = 34, 24.8%) HCPs regarding their PGA symptoms. The majority was ‘very’ or ‘somewhat’ uncomfortable discussing their symptoms with their primary HCP (n = 70, 64.2%) as well as with a specialist (n = 61, 56.5%). Most women sought medical attention for their symptoms <6 months after their symptom onset (n = 58, 53.2%), although 11.9% (n = 13) waited 10+ years. Common themes in the open-ended responses included: 1) HCPs lacking knowledge/familiarity with PGAD; 2) HCPs expressing discomfort or unwelcomed humor after patient disclosure of PGA symptoms; and 3) the desire for compassion and understanding from HCPs despite unfamiliarity with PGAD.