Abstract

There is paucity of data concerning post-orgasmic illness syndrome (POIS), a rare disorder with debilitating physical and psychological sequela. Given the rarity, and the sensitive and potentially embarrassing symptoms of POIS, this disease remains underdiagnosed and understudied. We sought to characterize the epidemiology of this disease in the hopes of creating a framework for designing a disease-specific questionnaire and helping guide therapeutic investigation. To gather data about the symptomatology, disease course, comorbid conditions, precipitating factors, associated behavioral changes, prevalent treatments and basic demographic data within an online community of patients suffering from POIS. An encrypted survey instrument was designed to be administered to the only known online community for patients suffering from POIS. The survey characterizes the condition using the five diagnostic criteria described previously. The survey questions also allow stratification of the cases into one or more of the seven symptom clusters described in the same study. Respondents were queried on disease course, comorbid conditions, behaviors and demographics.

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