The lived experiences of reproductive-aged women with polycystic ovary syndrome: a qualitative study.
- 1Department of Public Health, College of Life Sciences, Brigham Young University, 4103 LSB, Provo, UT, 84602, USA. [email protected].
- 2Department of Public Health, College of Life Sciences, Brigham Young University, 4103 LSB, Provo, UT, 84602, USA.
Abstract
Background
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.Methods
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.Results
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.Conclusions
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.
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BibTeX
@article{ward2026lived,
title = {{The lived experiences of reproductive-aged women with polycystic ovary syndrome: a qualitative study.}},
author = {Kaitlyn J Ward and A K Benzley and K L King Stone and E S Wardell and J A Hughes and B M Magnusson},
journal = {BMC women's health},
year = {2026},
month = jul,
doi = {10.1186/s12905-026-04681-y},
url = {https://europepmc.org/article/MED/42897597},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - The lived experiences of reproductive-aged women with polycystic ovary syndrome: a qualitative study.
AU - Kaitlyn J Ward
AU - A K Benzley
AU - K L King Stone
AU - E S Wardell
AU - J A Hughes
AU - B M Magnusson
PY - 2026
DA - 2026/07/01
JO - BMC women's health
DO - 10.1186/s12905-026-04681-y
UR - https://europepmc.org/article/MED/42897597
AB - Background 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.Methods 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.Results 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.Conclusions 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.
SN - 1472-6874
ER -