Kaleigh King Stone, Anna Benzley, and Kaity Ward have completed the first qualitative study on the lived experiences of women with polycystic ovary syndrome (PCOS) in the United States.
Presented at the Life Sciences Research Conference on October 25th, the study won first place in the Public Health Department.
Polycystic ovary syndrome (PCOS) is a common condition that affects hormones and causes irregular menstrual periods, excess hair growth, acne, and infertility. This hormone imbalance occurs when the ovaries create excess hormones. PCOS is very common and affects an estimated 15% of women. Despite the prevalence of this disorder, qualitative research on its impact on women’s lives is limited.
“The research came about because there was just a lack of qualitative research on women’s experiences with PCOS and how it impacts their lives,” King Stone said. This journey all began two years ago when Ward was diagnosed with PCOS and noticed a significant gap in research. She shared her own story in a Facebook group asking others to participate. Within hours, over 400 women had responded, eager to share their experiences.
Under the guidance of Brianna Magnusson, a reproductive health researcher, Ward created a literature review of existing PCOS studies. Globally, only four other countries have conducted qualitative studies on PCOS, with the United States notably absent from that list.
“It’s exciting to take something so personal to me to get the help that I need, bringing friends along the way to help with the research,” Ward said. King Stone and Benzley joined the project, and over 1,000 women volunteered to participate through Facebook groups.
The research identified several themes in the experiences of women with PCOS, including gaslighting, blame, social support, and mental health. “There were lots of things that came up through our qualitative research, and we just tried to pick the ones that stood out the most and told the story of what it’s like to live with PCOS,” said King Stone.
A significant finding was the prevalence of gaslighting, particularly in medical settings. Many women reported being dismissed by doctors, who questioned or minimized their symptoms, although it’s uncertain if this is due to gaslighting or a lack of provider education.
“I don’t truly believe that doctors want to give patients a poor experience. But the way they treat these women has a real impact on their lives,” King Stone said. “It’s not just physical health that’s affected – mental health is impacted too.”
“This is something that, to my knowledge, hadn't been documented before our research,” Ward said of the gaslighting findings. In addition to doctor gaslighting, participants also reported gaslighting from partners and even self-gaslighting.
Many participants expressed fears of being judged, and the researchers hope the study will help women with PCOS feel heard and understood. “There’s a lot more going on under the surface that other people don’t understand,” said Benzley.
The team plans to continue their research by looking at how PCOS is affected during Menopause. This would be another cutting-edge topic, making them the first to perform a qualitative analysis in the United States. They also hope to investigate perceptions of the effectiveness of Western and Eastern treatments for PCOS.
“Don’t be afraid to be the person to take the first step in research,” Ward said. The study carried out by these groundbreaking researchers all started because of Ward’s curiosity and questions. Through determination and teamwork, trailblazing research on PCOS was created to help other women through the disorder.
