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EDMONTON — Taboos around menopause, periods and conditions like endometriosis can limit access to knowledge and care, says a report by the Alberta Women's Health Foundation. 

The report, "Surveying the Silence: Exploring the Taboos in Women's Health," canvassed more than 2,200 Albertans who identify as women to understand their top health issues, concerns and experiences.

"Taboos are social customs restricting discussion on specific topics," Sharlene Rutherford, president and CEO of the foundation, said at a news conference Wednesday. "They create a culture of silence, it limits access to knowledge and care, and taboos can harm an individual's health, an individual's mental health and their well-being.

"Taboos perpetuate discrimination, they perpetuate negative stereotypes, they can be isolating and they can contribute to inequities."

The survey respondents each reported an average of five pelvic health issues, including painful periods, pelvic floor dysfunction, fibroids and regular yeast infections.

About two-thirds found it difficult to talk to their primary health-care providers about their concerns and only a quarter felt "very knowledgeable" about their gynecological and reproductive health.

The survey also found delays in treatment were common, with 85 per cent of women who had a more complicated diagnosis, such as endometriosis, reporting a wait for care.

Kristina Jarvis, 40, said she was diagnosed with polycystic ovary syndrome — a condition in which a woman has increased levels of male hormones — at the age of 29.

"The first symptom ... was actually hair loss around the age of 14 or 15," she said. "My mom suggested it was probably due to stress."

Jarvis said she then started having irregular periods and a doctor also suggested it could be stress.

She had hormone tests in her late 20s that led to the diagnosis, but she was told she didn't need to worry about treatment until she wanted to get pregnant.

"I took the doctor at face value," said Jarvis.

It wasn't until she was 33 or 34 that she learned there could be other side-effects, including high blood pressure, insulin resistance and a higher chance of cancer.

"There is a disturbing lack of knowledge and care from many, but not all (general practitioners) and doctors," she said.

"Doctors are definitely the experts, but we also need to be able to push back a bit when we think there is something to be looked at. We also need doctors to be able to hear our stories."

A patient going through perimenopause told the survey it adds "worry and stress because you don't know what to expect and if strange new symptoms are indicative of something serious." 

Another woman, who experiences painful periods, said people often think she's being dramatic when she needs to stay in bed.

Dr. Jane Schulz, chair of the department of obstetrics and gynecology at the University of Alberta's faculty of medicine, said the survey responses resonated with her.

"It certainly is a taboo topic," said Schulz, also a urogynecologist at the Lois Hole Hospital for Women in Edmonton. "I am really excited with the release of this publication in terms of breaking barriers and stigma of women's health."

Keeping women's health issues taboo, said the report, plays a role in the disparity of care and lack of research on the topics.

"This report provides critical insight," said Dr. Sandra Davidge, executive director of the Women and Children's Health Research Institute. 

"Research with a specific focus on women's health has been neglected far too long. Right now, less than 10 per cent of federal funding from Canadian health research funding is dedicated to women's health."

Davidge said, however, that funding from the Alberta Women's Health Foundation has led to important research for women.

As an example, she said menopause affects 50 per cent of the population — women — but noted there's a gap in both care and research in the area. 

Some researchers, she said, are working to overcome the stigma associated with menopause by supporting women who have severe symptoms.

This report by The Canadian Press was first published Feb. 1, 2023.

— By Colette Derworiz in Calgary

The Canadian Press