ACCURATE DIAGNOSIS
Prof researches syndrome
In her early 20s, Kendall Soucie was losing her hair, she gained 60 to 70 pounds in four months and her skin turned greyish yellow in spots.
She knew something was wrong but was told by her doctor in Windsor to count calories and lose weight. It took four years before she was diagnosed in the United States. Three U.S. specialists examined her and quickly asked if she’d ever been tested for polycystic ovarian syndrome, the most common endocrine disorder for women of reproductive age.
“It’s a major health issue. It’s a health issue that’s been completely misdiagnosed and underdiagnosed,” said Soucie, now a 35-year-old University of Windsor assistant professor who’s starting a study on the syndrome.
“It’s a silent epidemic because we’re suffering alone.”
An ultrasound showed cysts lining her ovaries like a string of pearls, which is common but not always the case for women with polycystic ovarian syndrome. The condition, which affects one in 10 women, disrupts ovulation and makes it difficult for women with the syndrome to get pregnant.
Symptoms include infrequent, irregular, prolonged or abnormally heavy menstrual cycles and elevated levels of male hormones that could result in excess facial and body hair, severe acne and male-pattern baldness.
It grows worse over time and can lead to serious complications, including Type 2 diabetes or prediabetes, cardiovascular disease, an increased risk of uterine cancer, infertility, depression and eating disorders.
Sousie, who teaches psychology, is looking for about 60 women between the ages of 18 and 40 for a study on diagnostic experiences with polycystic ovarian syndrome. She wants to learn why it’s often missed by doctors and how to change that to help women.
“All these women who are coming forward now that want to participate in our study, it’s the same story whether it’s they didn’t have a period for two years or they couldn’t get pregnant or they gained a ton of weight. They go see their physician and they get dismissed over and over and over again.”
Overweight women — one of the symptoms is weight gain and obesity — may be too embarrassed to keep going to a doctor once their symptoms are dismissed, she said.
There may be as many as 1.4 million women in Canada struggling with the complex syndrome, Soucie said.
When Soucie taught about infertility, she would discuss the syndrome that is one of the leading causes of infertility. Time and time again she had students come up to her after class who also had trouble getting diagnosed. The average is five years but can take up to 16 years, Soucie said. One sobbing student said it was the first time someone could explain what was going on in her body.
If caught early — there were other signs for Soucie, such as dizziness and more frequent periods — she might not have gained the weight or had a myriad other health issues. Once diagnosed, Soucie was able to take one medication to lower the level of male hormones and hair issues, and another to deal with insulin resistance, which increases the risk of developing Type 2 diabetes.
Her research will ask women to talk about positive and negative experiences with the health-care system and about their symptoms before and after being diagnosed. She wants to know about how long it took to be diagnosed, how women were informed of their diagnosis and what information they were given on treatment.
Soucie hopes to create testimonial videos. She wants to use the research findings to raise awareness, to help educate doctors, to teach women to advocate for themselves and to push for women’s health education in high schools.
The questions will take about 90 minutes and women in the study will receive about $20 to participate.
If you have been diagnosed with polycystic ovarian syndrome and are willing to answer questions about your experience, contact Soucie at 519-253-3000, ext. 2222, ksoucie@uwindsor.ca or through her website at life memories lab. wordpress.com/kendallmsoucie.
It’s a major health issue. It’s a health issue that’s been completely misdiagnosed and under diagnosed.