Tackling Taboos: Polycystic Ovarian Syndrome
At the Alberta Women’s Health Foundation (AWHF), we are on a mission to support the advancement of care and research in women's health. Tackling taboos is part of this. We surveyed over 2,200 people in Alberta, mostly self-identified women, to explore the impact of taboos on women’s health, and to bring attention to medical conditions affecting women's lives in our province.
Polycystic Ovary Syndrome (PCOS) impacts the health and wellness of so many women, yet there is still a notable lack of resources and support for women suffering from the effects of PCOS—who often suffer in silence.
“It has had a huge impact. Loss of school and work due to pain, [and] because of late diagnosis [PCOS] caused infertility, miscarriages, and eventually a hysterectomy. I was told it was all in my head, not that bad, I was exaggerating, and it was because of my weight until I thought I was actually going insane.” - Survey respondent suffering from PCOS
Polycystic ovary syndrome (PCOS) is a condition in which a woman has increased levels of male hormones which presents with the following symptoms: menstrual irregularities, infertility, skin problems such as acne and increased hair growth, increased number of small cysts in the ovaries, and other hormonal related issues such as obesity. Polycystic ovary syndrome can also cause infertility, diabetes and/or metabolic syndrome, and distressing physical symptoms like hirsutism and alopecia.
It is estimated that PCOS affects 8-13% of women of reproductive age, so as many as 1.4 million Canadian women may be afflicted with PCOS. In our survey, 9% of self-identified women reported experiencing PCOS. Like many other women’s health issues, diagnostic delays and dismissal have affected many women with PCOS. In one study, over one-third of respondents waited for more than two years, and 41% saw three or more doctors before attaining a diagnosis.
The Alberta Women’s Health Foundation is committed to continuing conversations around PCOS and raising awareness about the condition. Read more in our report by clicking the link below.
Researchers Leading the Way:
The AWHF is proud to support over 160 researchers forging the way for women’s health advancement.
Dr. Donna Vine is one such researcher.
Dr. Donna Vine leads the PCOS Together research and community outreach program which aims to understand the health conditions and the healthcare needs of those living with PCOS. The program’s research focuses on cardiometabolic risk, diabetes and cardiovascular disease and working with patients to understand the health challenges they face and to improve their health and quality of life. Dr. Vine is a Professor in Human Nutrition at the University of Alberta, and a member of WCHRI and Alberta Diabetes Institute.
Comprehensive research by Dr. Donna Vine suggests that 34% of women took more than two years to get a diagnosis of PCOS, and 60% had to visit more than one healthcare provider before a final diagnosis. Three-quarters were not told about the long-term medical health risks linked to PCOS, such as cardiovascular diseases. Mental health impacts are often unaddressed in doctor’s visits, and many are just treated for their reproductive and fertility issues. In Alberta, many women reported considerable effects on their self-esteem and mental health, schoolwork and career because of pain, and many documented stories of dismissal and delayed diagnosis.
“We have learned those with PCOS suffer immense challenges in managing their disease and in the healthcare system—raising awareness and breaking the silence is a first step to improving their health and well-being.” – Dr. Donna Vine