High school education program aims to break ‘silence’ around endometriosis

Click to play video: 'Here’s what you need to know about endometriosis'
Here’s what you need to know about endometriosis
WATCH: Endometriosis affects 1 in 10 women and can cause severe pain, particularly during menstruation – Mar 13, 2018

Kristen Gilbert has been teaching sex ed to students for 15 years. And in all that time, she said, endometriosis was never in her lesson plan.

“I’m a sex ed teacher. … That’s all I do all day,” she said. “In the 15 years that I’ve been teaching, I’ve never brought up endometriosis spontaneously and I’ve had very few questions.”

But when she was asked by B.C. Women’s Hospital to teach a pilot course on the condition to high school students, she said, she couldn’t help reflecting on “how many opportunities were missed” during her sex ed career.

“For people who have their period, about 10 per cent of folks are truly suffering with endometriosis,” she said. “That’s a really high percentage of the population who could use this information to improve their lives. And if not their lives, the lives of the people they care about and their family and their social circle.”

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Endometriosis can cause extreme menstrual pain, pain during intercourse, and various other symptoms, according to Dr. Catherine Allaire, medical director of the B.C. Women’s Centre for Pelvic Pain and Endometriosis at B.C. Women’s Hospital, which started the program. Allaire said it can sometimes lead to infertility.

Many people first start experiencing symptoms of endometriosis as teenagers.

Click to play video: 'Endometriosis: a seven to 10 year diagnosis for pelvic pain'
Endometriosis: a seven to 10 year diagnosis for pelvic pain

In the endometriosis education class, which is about an hour long, students learn about anatomy, periods, and the symptoms of endometriosis. They’re also given resources for further information or places they can turn to for help if they think they have the condition, said Gilbert, who is also the education director for Options for Sexual Health.

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Some of those students, she thinks, might have recognized themselves in the description. “Sometimes they’ll even say, ‘This has made me realize that this is maybe more serious than I thought it was, or that maybe this is an explanation for this thing that I’ve been experiencing or my friend or my loved one has been experiencing.’”

The pilot program began at a school in New Westminster, B.C., in December, and will continue until 100 students have attended the class. It’s modelled on a similar program in New Zealand, which found that students who took the class reported higher awareness of endometriosis, and many sought treatment at a younger age.

Kristen Gilbert, from Options for Sexual Health. Courtesy, Options for Sexual Health

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In women with endometriosis, cells similar to those that usually line the uterus are also found outside the uterus, generally elsewhere in the pelvic cavity, Allaire said.

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“These cells are slightly different, but respond to hormones in a similar way,” she said. “They can cause scar tissue, pain, inflammation and sometimes lead to infertility and also cyst formation in the ovaries.”

The main symptoms are severe menstrual cramps, but some patients might experience pain at other times of the month or even chronic pain, as well as pain during sexual intercourse. Some patients don’t show any symptoms at all, she said.

There are treatments available, including medication — some form of continuous birth control or medicated IUD. In some cases, surgery may be the best option, Allaire said, but there is no cure for the condition.

Patients often experience symptoms for years before their condition is diagnosed, she said. And while a patient’s symptoms are left untreated, repeated painful episodes can turn into chronic pain that doesn’t go away.

Early awareness

That’s what happened to Philippa Bridge-Cook.

“I started having pain in my teens and I didn’t really know that it wasn’t normal,” she said. “I’d never heard of endometriosis until I was in graduate school.”

After a friend was diagnosed, she said, “I went and looked up the symptoms and was shocked because I was like, ‘I think I have this.’”

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It still took years for her to be diagnosed, she said, during which time she had experienced several miscarriages as a result of the condition. After surgical treatment, she was able to give birth to a son.

Learning about endometriosis as a teenager would have been very helpful, she said. “I think it would have made a big difference because I think I would have realized as a teenager that my symptoms weren’t normal.”

While fertility wouldn’t have been a concern to her as a teenager, she said, getting early treatment would have helped her.

“I think that some of the problems that I have now are the result of having gone so long without a diagnosis.”

“I think if I’d been diagnosed and treated effectively much earlier in my life, not only would I have not missed out on a lot of things that I had to miss out on because of having severe symptoms, but I also wouldn’t have developed some of the problems that I have now.”

Click to play video: 'Period myths debunked'
Period myths debunked

Trent Carlson, 17, is one of the students who took the pilot program at New Westminster Secondary School. He thinks endometriosis awareness would be good for everyone — including men, who won’t ever experience it themselves.

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“The presenter had given an example of people who had endometriosis — they’ll have their period and it’ll be extremely painful for them. And they can’t even go out and they have to call in sick to work or something,” he said. “And then if their boss hears that, ‘Oh, it’s because of their period,’ they think that, ‘Just suck it up and come in, it’s not that bad.’

He had never heard of endometriosis before he took the class. Now, he thinks everyone should learn about it.

“I think it would help more people know if they have endometriosis, because people can be looking out for the symptoms,” he said.

“Even in my own family, if my sister and my mom experience the symptoms of endometriosis, I can know and I can let them know that that’s not normal and that’s something they can get checked out.”

Whether or not the pilot program expands, Gilbert said she’s going to be making endometriosis awareness a part of all her sex ed classes.

“I think it was a real missing piece to a full and important conversation about health and bodies,” she said.

“If we are suffering when we are having our period, it may be endometriosis and there are effective treatments that can help us.”

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“And everyone deserves that knowledge.”

Ed. note – this story has been updated to clarify our explanation of the condition.

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