BackgroundPremenstrual Dysphoric Disorder (PMDD) is a premenstrual condition that affects 3–8% of the US population, yet knowledge on treatment and consistent diagnostic testing is lacking. While research concerning the epidemiology and pharmaceutical treatments for this condition has increased, there is a lack of qualitative studies on the experiences of patients who live with this condition. The aim of this study was to explore the diagnostic and treatment experiences of PMDD patients in the U.S. healthcare system and identify barriers to diagnosis and treatment.MethodsThis study uses a feminist framework with qualitative phenomenological methods. We recruited participants who identified as having PMDD, regardless of official diagnosis, through online forums within the U.S. PMDD community. The study conducted 32 in depth interviews with participants on their experiences with PMDD diagnosis and treatment. Thematic analysis methods revealed key barriers within the diagnostic and care process including patient, provider, and societal barriers.ResultsThis study presents a PMDD Care Continuum that represents the timeline of participant experiences beginning from symptom onset towards official diagnosis, treatments, and ongoing management of the condition. Participant experiences demonstrated that much of the diagnostic and treatment processes were burdened on the patient, and that successful navigation within the healthcare system was dependent on high levels of self-advocacy.ConclusionsThis was the first study to describe the qualitative experiences of patients who identified as having PMDD in the U.S. Further research is needed to refine and operationalize diagnostic criteria and treatment guidelines for PMDD.Supplementary InformationThe online version contains supplementary material available at 10.1186/s12905-023-02334-y.