“I know it's a reproductive disorder, but it's my entire body, my entire health [that is affected], and I can't control it.”
“The future is just really hard to [plan for] when you’re constantly having to think about the stuff you’re going through right now.”
“It makes my depression a lot worse. Gaining that much weight in a just a few years… It took a toll on my health.”
“I’ve never looked in the mirror and fully loved what I see.”
“I’m beyond exhausted.”
These quotes, taken verbatim from interviews with women suffering from polycystic ovary syndrome (PCOS), provide a raw and unfiltered look into the daily struggles that accompany living with this chronic disorder.
Collected by a team of public health students, including Kaity Ward (MS '26, PH), Anna Benzley (PH ’28), Kaleigh King Stone (PH ’25), Julia Hughes (PH ’24), and Elissa Wardell (PH ’26), these statements represent only a fraction of the PCOS experience, as the condition affects millions of women worldwide but often manifests in painfully unique ways—if it is diagnosed at all. The team’s qualitative research, the first of its kind conducted in the United States, offers an intimate look at the daily challenges and experiences of women with PCOS.
“This project has been really empowering,” shares King Stone. “Working on a women-led team focused entirely on a women-centered problem has been incredibly rewarding. There’s this strong sense of camaraderie, like we’re all in the same boat. We’ve been able to identify and empathize together.”
Each team member brings a deeply personal connection to the disorder, either through their own experience or by having navigated the medical dismissal and misdiagnosis so often endured by women with PCOS. Their shared empathy and passion for unbiased healthcare propelled them to address critical gaps in understanding the disorder’s physical, emotional, and societal impacts. As a result of their study, the researchers hope to bring the conversation to the forefront of the public consciousness, ultimately fostering increased research in the field and, hopefully, paving the way for the discovery of a cure for this currently irremediable condition.
Polycystic ovary syndrome (PCOS) is categorized into four phenotypes, the most common involving cysts forming on the ovaries. Symptoms include irregular menstrual cycles, excruciating periods, blood sugar imbalances (hyperglycemia or hypoglycemia), weight gain, and elevated androgen levels—which can cause male-pattern baldness and excessive body hair, particularly on the face. In the U.S., approximately 5 million women are affected by PCOS, while 8–13 percent of women globally have been diagnosed. However, up to 70 percent of cases are estimated to go undiagnosed.
“The symptoms are unpredictable, difficult to manage, and lack effective treatments or cures,” says Benzley. “Many women worry about fertility or developing comorbidities like diabetes or high cholesterol. These health concerns consume their thoughts and influence nearly every aspect of their lives.”
The team’s project aims to fill a research gap in the U.S., as only four countries have gathered the qualitative data necessary to understand the lived experiences of women with PCOS, and the U.S. is not one of them. Within hours of posting an online request for research participants, the team had over 1,000 applications representing a varying range of ethnic backgrounds and ages. Ultimately, thirty-nine women between the ages of eighteen and thirty-five were selected, and the interview process began.
The semi-structured format of the interviews allowed the participants to share freely, offering candid insights into their daily lives and the challenges they face. Unfortunately, patient invalidation by medical professionals was a recurrent theme.
“The bulk of [the female experience] with primary care providers is negative,” King Stone explains sadly. “We heard stories of women who’d approach their doctors and say, ‘I've been doing research on the internet, visiting chatgroups and forums, and I’ve found this condition—polycystic ovary syndrome—and I think this is what I have. Can I get some tests done?’ And there was one instance where this doctor told his patient, ‘PCOS isn't real.’”
Other research participants expressed frustration with their medical provider’s use of weight loss as a catch-all solution. Instead of exploring potential underlying conditions through diagnostic testing or further inquiry, some doctors would immediately attribute the symptoms to lifestyle factors, effectively placing the burden of responsibility back on the patient. This pervasive tendency not only delayed proper diagnosis but also left many women feeling unheard and invalidated. For Ward, the lead researcher directing the project, these stories resonated on a personal level.
“Two years ago, I was diagnosed with PCOS,” Ward shares, “I did what just about everyone does when they're diagnosed with a health issue that they know nothing about: I Googled it. On Google, it just said that it was a hormonal disorder that impacted the ovaries. And I was like, whoa—my experience has been that it impacts a lot more than that.”
Ward initially found her PCOS diagnosis overwhelming, but her experience as a service missionary for the Church of Jesus Christ of Latter-day Saints sparked a growing interest in public health. Reflecting on her journey, she credits divine guidance for aligning her personal struggles with her academic path.
“I definitely see the hand of God in my entire timeline,” Ward says with a smile. “Coming into public health and doing this research has been incredible. I feel like the silver lining of my PCOS diagnosis has been the opportunity to do this research.”
Looking ahead, Ward and her team plan to present their findings at several conferences, and will also focus on submitting their research to a journal for publication. Their groundbreaking work has already earned recognition, winning first place in the public health category at the BYU Life Sciences Research Conference. Their continued determination to advocate for women with PCOS reflects their empathy, collaboration, and determination in addressing critical gaps in healthcare.