The lived experiences of reproductive-aged women with polycystic ovary syndrome: a qualitative study

PCOS is a complex health condition that affects up to 20% females of reproductive age worldwide, and approximately 5 million U.S. females of reproductive aged females. Despite the prevalence of the condition, research on the lived experiences of women with PCOS is limited, particularly in the United States. This study employed a phenomenological qualitative design to explore the lived experiences of individuals diagnosed with PCOS. We conducted semi-structured interviews via web conferencing with 39 females 18–45 years of age, residing in the U.S. with PCOS. Transcribed interviews were analyzed using the Framework Method. We identified ten primary themes in the data 1) Critical shift point, 2) Education, 3) Future Experience, 4) Gaslighting (or blame), 5) Medical Experience, 6) Present Emotional Experience, 7) Social Impacts, 8) Treatment, 9) Well-documented Physical Symptoms, and 10) Not Well-Documented Symptoms and an additional 37 sub-themes. Overall, the experiences of living with PCOS were generally negative, especially in relation to gaslighting or blame, medical experience, symptoms – both well documented and not well documented, present emotional experience, social impacts, and treatment. Additionally, many participants reported a critical shift point that led to them seeking a diagnosis and treatment for their condition, and a lack of education in relation to PCOS. Women with PCOS experience a wide-ranging physical, mental, and relational impacts. Awareness of the impact of PCOS is needed to reduce gaps in provider knowledge, social disconnect, fear of judgment, and mental health concerns. Further research is needed to understand the impact of PCOS on the lived experience of post-menopausal women, and to develop improved education for both providers and those in the social circle of women with PCOS. Polycystic Ovary Syndrome (PCOS) affects up to 20% of women worldwide and about 5 million women in the United States. Even though it is common, there is little information about what it is like to live with PCOS, especially in the United States. We conducted interviews with 39 women between the ages of 18 and 45 who had been diagnosed with PCOS. The women described how PCOS affects many parts of their lives. They talked about feeling frustrated by a lack of clear information about PCOS, both from healthcare providers and in general. Many shared concerns about their future health and ability to have children. Others discussed struggles with body image, mental health, and feeling judged by others. Participants also described negative experiences with healthcare providers and challenges in their relationships with partners and family members. In addition to well-known symptoms, some women reported less commonly discussed symptoms such as severe fatigue. Overall, our study shows that PCOS affects much more than physical health. It also influences emotional well-being, relationships, and daily life.