Taboos around menopause, periods and conditions such as endometriosis can limit access to knowledge and care, says a report from the Alberta Women’s Health Foundation.
The report, “Surveying Silence: Exploring Taboos in Women’s Health,” surveyed more than 2,200 Albertans who identify as women to understand their health issues, concerns, and experiences.
“Taboos are social norms that restrict discussion about specific topics,” Charlene Rutherford, the foundation’s president and CEO, said at a news conference Wednesday. “They create a culture of silence, limit access to knowledge and care, and taboos can be detrimental to one’s health and one’s mental health and well-being.
“Taboos perpetuate discrimination, perpetuate negative stereotypes, can be isolating and can contribute to inequality.”
Survey participants reported an average of five pelvic health problems, including painful periods, pelvic floor dysfunction, fibroids and regular yeast infections.
About two-thirds found it difficult to talk to their primary care providers about their concerns and only a quarter felt “very knowledgeable” about their gynecological and reproductive health.
The survey also found that delays in treatment were common, with 85 percent of women who had a more complex diagnosis, such as endometriosis, reporting waiting to receive care.
An alarming lack of knowledge
Christina Jarvis, 40, said she developed PCOS – a condition in which a woman has increased levels of male hormones – at the age of 29.
“The first symptom…was actually hair loss at the age of 14 or 15,” she said. “My mom suggested it might have been due to stress.”
Jarvis said she then started having irregular periods and the doctor also suggested it could be stress.
She had hormonal 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 conceive.
“I took the doctor at face value,” Jarvis said.
I learned there were other side effects, including high blood pressure, insulin resistance and an increased chance of cancer, until I was 33 or 34.
“There is an alarming lack of knowledge and care from many, but not all (general practitioners) and physicians,” she said.
“Doctors are the experts for sure, but we also need to be able to step back a little bit when we think there’s something to look at. We also need doctors to be able to hear our stories.”
One patient going through perimenopause told the survey that it adds “anxiety and stress because you don’t know what to expect and whether strange new symptoms indicate something serious.”
Another woman, who had painful periods, said people often think it’s being dramatic when she needs to stay in bed.
The decisive insight
Dr. Jane Schulze, chair of obstetrics and gynecology at the University of Alberta Medical School, said the survey responses resonated.
“It’s definitely a taboo topic,” said Schulz, a urologist at Lewis Hall Hospital for Women in Edmonton. “I’m really excited to be making this publication in terms of breaking down barriers and stigma around women’s health.”
Keeping women’s health issues taboo plays a role in the disparity of care and lack of research on the topics, the report said.
“This report provides insight,” said Dr. Sandra Davidge, executive director of the Women’s and Children’s Health Research Institute.
“Research focused specifically on women’s health has been neglected for far too long. Currently, less than 10 percent of federal funding from Canadian health research funding is allocated to women’s health.”
Davidage said, however, that funding from the Alberta Foundation for Women’s Health has led to important research for women.
For example, she said menopause affects 50 percent of the population – women – but noted that there was a gap in both care and research in the area.
She said some researchers are working to overcome the stigma associated with menopause by supporting women with severe symptoms.
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