What does PCOS stand for?
PCOS stands for Polycystic Ovary Syndrome. It is the most common endocrine syndrome in individuals assigned female at birth, with a global prevalence between 10-25%. The most recent estimates we have in Canada, which were from a 2008 study, suggests that this translates to 1.4 million Canadians who are living with and managing PCOS. However, these statistics are underestimates, as PCOS is largely misdiagnosed or underdiagnosed. As of 2022, there are no clear epidemiological studies in Canada that capture exact prevalence rates.
In addition, PCOS is a complicated syndrome. It’s a misnomer because it is not limited to just cysts on the ovaries. As an all-encompassing syndrome, its impacts fall into three clusters: reproduction, endocrine/metabolism, and mental health.
How do this and other misconceptions affect PCOS diagnosis experiences?
There are many misconceptions about PCOS that impact the length of time to diagnosis, which for many women is 4-5 years, and requires consultations with 2-3 providers at minimum. Misconceptions also impact the treatment options available for PCOS. In the past, the focus of PCOS treatment was mostly on the ovary—on reproduction and restoring regular cycles through oral contraceptives (birth control). Because of this overemphasis on the ovary, there was historically widespread neglect of the metabolic-related complications (like insulin-resistance and diabetes) and cardiovascular issues (heart disease).
Research is only beginning to understand how PCOS impacts crucial systems outside of reproduction and gynecology. There is no FDA approved treatment for PCOS. At the same time, there is also very little research on the psychosocial, mental health, and quality of life impact of PCOS, and of that research, the framing is quite negative, and paints a picture of PCOS as ruining the individual’s identity, body image, and relationships. In our lab, we challenge this framing and focus on how people can thrive with PCOS by amplifying the lived experiences of patients and individuals with PCOS in Canada to improve their health care experiences and their quality of life.
Have recent research developments helped understanding the different ways in which PCOS is expressed and experienced?
There is heterogeneity and variability in the expression of PCOS. No two people with PCOS look the same or have the same lived experiences. There are different phenotypic characteristics that impact the way that people live with and manage PCOS. There are some treatments that work for some people but do not work for others, and there are also different lived experiences based on ethnicity, age, gender, class, among other variables. It is important that people with PCOS are part of the conversation, and their input and lived experiences are valued and a part of health care delivery and policy. We need more patient-centered user-informed healthcare models to fully understand the complexity of PCOS and create real and sustained treatment and change together.
What are some key findings from your research on the diagnostic experiences of women with PCOS in Ontario?
Over the past 4 years, our lab (Health Experiences and Longevity Lab—HEAL Lab) has collected qualitative and quantitative data on the lived experience of PCOS, focusing mostly on health care experiences, but also on aspects of quality of life, and psychosocial well-being across the life span. We have completed 72 interviews to-date on living with and managing PCOS in Canada.
The key things we have found is that the diagnosis experiences are lengthy, exhausting, and frustrating, with many medical and allied providers unaware of what PCOS is. During medical consultations, patients feel dismissed, not taken seriously/not heard, and are told to “come back when you want to get pregnant” or to “lose weight” and then come back, and so they leave these appointments defeated, which leads to longer diagnosis time frames, and poor quality of care.
PCOS is also framed negatively—its described in research as “a thief to womanhood” or as “ruining your body”. However, despite this negative framing of PCOS in the media and in the research literature, we have found that (1) self-compassion and body acceptance comes with age and life experiences; (2) educating others including providers about PCOS is a major part of the diagnosis journey, and (3) participants lived experiences reveal various strategies of resistance, empowerment, advocacy, and forming community, which challenge the “passive patient” narrative, and has actually translated to improved physical and mental health outcomes.
What is one story that you remember from this recent research project you carried out?
Oftentimes, because of being dismissed over many years, people turn to online sources of support, and might connect with larger PCOS communities or create new ones to help others. We have learned too that people with PCOS will go to conferences and connect with advocacy organizations, to empower one another, and provide tips, strategies, and guidance to advocate and learn as much about PCOS as they can.
I remember a person said: “In my own little world, I advocate for PCOS. If I find something, I share it just in case there's anyone who doesn't know about it and might have symptoms.” That is typically what we see—community, and connection with the ultimate goal of education, informational supports, and advocacy to improve the lives of others with PCOS by sharing what they know/their lived experience, particularly to the next generation of young people who might have PCOS.
“Paying it forward” in this way has had a profound impact as illustrated by our data, and it is wonderful to see!
About the Expert:
Kendall Soucie, PhD, is an Assistant Professor in the Department of Psychology at the University of Windsor. She completed her PhD in Developmental Psychology at the Wayne State University in Michigan, USA. She completed her MA in Developmental Psychology at Wilfred Laurier University, and her BA in Psychology at the University of Windsor.