Premenstrual dysphoric disorder (PMDD) is a disabling disorder that impacts 1.8 percent to 5.8 percent of menstruating women for 1-2 weeks each month. Many affected women turn to social media platforms for the information and the support they feel that they do not get from other sources. We sought to better understand the most strongly expressed unmet needs of women with PMDD by analyzing their posts and comments on one of the largest social media platforms (Reddit), which has been providing important insights into other medical problems. We searched Reddit using the subreddit title "r/PMDD" for posts from January 2020 through November 2021. To identify the most prevalent issues, we included all written posts with a submission score of at least 5 and at least three comments. Two authors classified each post; inconsistencies were resolved by a third reviewer. Over 800 posts were reviewed; 250 met study criteria; additionally, over 875 comments were evaluated. Four main themes emerged from the analysis: emotional responses to PMDD; unanswered questions women had about the diagnosis and treatment of PMDD; the impact that PMDD had on personal relationships, and, finally, the recommendations women made to others based on their own experience, accurate or not. These themes are detailed in this article to provide insights into what many women with PMDD experience and what their frustrations and misunderstandings are about the condition so that clinicians may better help address women's unspoken questions and correct their possible misinformation.
Keywords: PMDD; Reddit; premenstrual dysphoric disorder; social media; thematic evaluation.