New program aims to break taboo by teaching high school students about endometriosis

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Endometriosis is a common condition that affects an estimated one in 10 females of reproductive age. But because few discuss the symptoms or regard the severe pain and nausea during menstruation as abnormal, many suffer for years before getting treatment.

Now, researchers at BC Women’s Hospital and Health Centre have launched an experimental program to teach high-school students about endometriosis as part of their sexual-health curriculum.

They hope the one-hour sessions, taught to students at New Westminster Secondary School, will help adolescents recognize what’s normal and what’s not during menstruation, and encourage them to seek help if they experience symptoms.

“What we’re trying to advocate is also empowerment of young females in terms of taking charge of their health,” said Catherine Allaire, medical director of the Centre for Pelvic Pain and Endometriosis at BC Women’s.

Endometriosis occurs when endometrial tissue, which normally lines the interior of the uterus, grows outside of the uterus, which can lead to the formation of lesions, cysts and other growths. Symptoms, which may include severe menstrual cramps, nausea, vomiting, irritable bowels and diarrhea, can cause individuals to miss school or work. Pain can also occur outside of menstruation, such as during ovulation or during sex, Allaire said.

But due in part to taboos around talking about menstruation, there is often an eight-year delay between the onset of symptoms and receiving a diagnosis of endometriosis, she said.

“A young female that is having all these symptoms may not know that it's not the norm or may not know what to do about it,” she said, adding that when young women do speak up, their symptoms are often dismissed by family members or even health professionals.

More than 60 per cent of women with endometriosis report encountering at least one health professional who dismissed their symptoms, Allaire said.

The in-class sessions are based on a menstrual health and endometriosis educational program in New Zealand, which has been shown to increase students’ awareness about the condition and potentially lead young women to seek specialized health-care services sooner.

The researchers at BC Women’s have partnered with Options for Sexual Health (Planned Parenthood’s affiliate in B.C.) to deliver the lessons to a total of roughly 100 students, grades 8 to 12, as part of a pilot study. The first group of around 20 Grade 12 students participated in a session last month, and the team aims to have four or five more classes each undergo a session early this year. The study is funded by the Michael Smith Foundation for Health Research.

Kristen Gilbert, education director of Options for Sexual Health who is teaching the sessions, said the classes include students of all genders.

“All of us know people who have periods, even if we don’t [have them],” she said, adding in the first class, all the students were interested and engaged.

One student, in particular, informed her afterward that she would share what she learned with a friend, whose menstrual symptoms included vomiting.

“So it wasn’t just that student in the class who’s going to benefit from that lesson. It’s her whole circle,” Gilbert said.

Teacher Chelsie Goodchild, whose Grade 12 anatomy and physiology class participated in that first session, said her students typically learn about the reproductive system in school, but endometriosis is generally not a topic that is covered.

Goodchild said the session was not only informative for her students, but for her as well. Later, when she discussed the study with her parents, she learned her own mother had endometriosis.

“It was pretty eye-opening,” she said.

Philippa Bridge-Cook, chair of the board of the not-for-profit Endometriosis Network Canada who is not involved in the study, said she was happy to see the program being tested in B.C., and hopes to see it offered across the country.

Had she learned about endometriosis in high school, Bridge-Cook said she likely would have realized much sooner that the pain she experienced during menstruation was abnormal. Even though she began having symptoms at age 13, the first she heard about endometriosis was when she was in her 20s. She was not diagnosed until she was 34. (A surgical procedure called a laparoscopy is needed to receive an accurate diagnosis.)

The pain became so debilitating when she was in her 30s, she was unable to work for about three years. After four surgeries and a combination of strategies, including nutritional changes, pelvic physiotherapy and medications, she is now able to manage her symptoms but still has chronic pain, partly because her endometriosis was untreated for so long.

If the education sessions can help young women seek help sooner, that may prevent them from developing chronic pain syndromes, she said.

“I think if I had gone through the program, not only would I have identified earlier that my symptoms were not normal, I would have felt okay about speaking up about it,” she said.

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