PCOS stands for polycystic ovary syndrome. It is a medical condition that one in eight women are likely to suffer from, and there has been close to no research in the United States done on it.
Briana Magnusson is a professor at BYU and focuses on sexual and reproductive health. She is the associate chair for the Public Health Department and has been an associate professor at Brigham Young University for the last eight years.
Briana Magnusson began looking at PCOS after having a student bring it to her in a research group. It was to Magnusson's surprise that she saw a lack of U.S. based research on the topic.
Briana Magnusson wanted to be able to have research be conducted to help more fully understand PCOS and how physicians and workers in the medical field are able to help women deal with PCOS and not to dismiss their emotions dealing with such a disease.
One of the largest problems with dealing with PCOS as a topic is the lack of understanding and knowledge on the subject in the overall common collective. Usually, the term is referred only to women who are dealing with fertility issues.
Magnusson explains, “Women with PCOS primarily receive care around fertility and conception, but it is a chronic health condition that affects every part of your body.”
Women with PCOS can see the effects of it affect metabolism, sex hormones, insulin sensitivity, reproductive concerns, and an excess of androgens.
PCOS is commonly misinterpreted as a disease that is only related to fertility and a woman’s ability to become pregnant and to have children. While absolutely true and an incredibly real side effect, fertility isn’t the only detriment for women with PCOS, as Magnusson explains.
“Women with PCOS are more likely to die by suicide, they have more severe depression. So it’s really affecting every part of their life.”
PCOS is a condition that affects every part of a woman’s life, and one that women are active to share their experiences about.
Magnusson said on the subject, “Our intention was to interview between 30 and 40 women, and the first day we posted the advertisement we had over 900 responses to our survey. So that just tells me women are hungry to be heard.”
Magnusson and her team, for their ongoing research, have been participating in and conducting qualitative research on 39 separate subjects who have been living with PCOS. The study is currently ongoing and is set to be published later this year.
The research’s goal is to find the commonalities between the different experiences between these women and hoping to understand them.
One of the newest aspects of this research is how, for Magnusson, this is the first time that she has worked with qualitative research instead of quantitative.
She explained the difference with, “I’m an epidemiologist by training, so my historical research is all quantitative. It’s the numbers, and I think what has been really rewarding about doing this qualitative research is having a sort of a conversation with these women.”
For Magnusson, it remains a depth to the questions the team has been asking and allows for a more complex understanding of the condition they are trying to grasp universal commonalities in.
What that has led to is a stronger understanding of women suffering from PCOS and how they want to be seen.
One of the largest issues that women with PCOS face is lack of correct diagnoses, alongside family and friends and health care providers not fully understanding the condition.
One in eight women will suffer from the condition of PCOS, yet there isn’t as much knowledge in the medical field on the condition. There isn’t a cure for the condition, which causes a struggle for diagnosis and then action physicians can take to help patients.
Magnusson earlier this year wrote about the topic of a lack of knowledge in the census. Her research paper Knowledge about polycystic ovary syndrome (PCOS), body image and depression by PCOS status among a sample of US females.
She said, “In 2018 a study of physicians-in-training suggested that newly trained physicians may have better but still inadequate knowledge about PCOS diagnosis, with 55% of surveyed physicians-in-training able to identify the Rotterdam criteria.”
With the lack of full knowledge on PCOS compared to other chronic illnesses, there can be a lack of effective care from physicians. Magnusson explains, “It takes on average two to three years from an initial healthcare interaction to get a diagnosis.”
Women struggle to receive quality healthcare provisions and many don’t receive a diagnosis of their illness at all, with seventy percent of all Women with PCOS going undiagnosed.
What Magnusson and her team hope to show is the struggle that women with PCOS have to deal with to help gain help with managing their illness.
Magnusson said, “I think that women need validation from both their like family, friends, and healthcare providers validation…this is actually happening to your body... They want to have an informed and educated conversation with their provider about how to manage the parts of this condition that are most bothersome to them.”
Magnusson wants two aspects of her and her team’s research to be applied at the end of the day for women living with PCOS.
“I want women with PCOS to hear that they’re not alone, to have a validation of their experience. And I hope that medical providers will stop trying to fix it and learn to just sit in the discomfort of not being able to fix it. They just want to be heard, and they want to be offered what does exist.”
Magnusson’s research will be published later this year and will be a step forward in recertifying the gap in the literature.