Medical gas-lighting, diagnostic odyssey and self-advocacy among women with premenstrual dysphoric disorder from nine countries

Abstract

Premenstrual Dysphoric Disorder (PMDD) is a cyclical condition similar to premenstrual syndrome (PMS), with symptoms arising in the late luteal phase. Studies highlight barriers to care, including misdiagnosis, missed diagnosis, and limited practitioner knowledge. Most qualitative research has focussed on the USA, UK, and Australia. This study explored the healthcare experiences of 27 women from nine countries diagnosed with PMDD using a phenomenological approach. Semi-structured interviews were analysed thematically in ATLAS.ti, generating four themes: (1) medical gas-lighting and the importance of diagnosis, (2) diagnostic odyssey, (3) access to healthcare, and (4) self-advocacy. Findings reveal that negative healthcare experiences often delay diagnosis and care-seeking while fostering mistrust in healthcare systems. Experiences were similar across countries, regardless of healthcare structures. While diagnosis can be validating, its benefits may depend on available resources. Greater awareness of PMDD among healthcare providers is essential for improving patient care.