ENPOWR Project brings endometriosis awareness to the classroom

Prevention

Article 3 of 5:
Project brings endometriosis
awareness to the classroom

ENPOWR Project brings endometriosis awareness to the classroom

The goal is improved quality of life through early recognition of symptoms.

BY TARA HAELLE

Kimberly Tronolone was teaching a lesson on the symptoms of endometriosis in a New York high school recently when a girl raised her hand and described her ongoing digestive issues and vomiting, as well as severely painful cramps during menstruation. When she went to her physician, he dismissed her symptoms. She wanted to know if she should see another doctor.

That experience is what drives Ms. Tronolone, program coordinator at the Endometriosis Foundation of America (EFA), to educate adolescents about the symptoms of endometriosis from an early age. Ms. Tronolone heads up the EFA’s ENPOWR Project (ENdometriosis: Promoting Outreach and Wide Recognition). Launched in 2013, the ENPOWR Project goes into high schools, junior high schools, and community organizations to educate preteens and adolescents about the prevalence, symptoms, complications, and treatment of endometriosis.

“Rather than wait for these women to figure it out in their mid-20s or 30s when they’re having fertility problems or the symptoms are really severe, we’re educating young women about what to look out for and be aware of and how to talk to a doctor about it so that they’re not living a decade with no answers,” Ms. Tronolone said.

Early detection

The first step to improving quality of life for those with endometriosis is early detection and treatment of the disease. But the relatively generic symptoms, which are shared by various other disorders, and the lack of a definitive noninvasive diagnostic tool mean the disease often goes undetected for years. In the United States, for example, it takes an average of 10 years to receive an accurate diagnosis after the first symptoms appear, even though an estimated 1 in 10 girls and women have endometriosis.


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Perspectives on Endometriosis Management


A common myth is that only women over 20 years old experience endometriosis, but it can start as early as menarche, making awareness among adolescents particularly important. Through ENPOWR, students receive resources and screening handouts and learn that symptoms can include intense cramping, long or heavy periods, bowel and urinary disorders, nausea or vomiting, and pain during sexual intercourse. Especially if untreated, endometriosis can contribute to infertility, as 30%-40% of women with the disease have experienced. Endometriosis does not show up on imaging, such as CTs, MRIs, or ultrasounds, and pelvic exams can only raise suspicion of it. Students learn that only a diagnostic laparoscopy can confirm endometriosis. Each lesson concludes with students taking a pledge to tell 10 other girls or women what they’ve learned.

But it’s not just girls in the classrooms they visit.

“Most of the lessons are in mixed classrooms,” Ms. Tronolone said. “It’s important for boys to know that just because it doesn’t directly physically affect them doesn’t mean they can’t help the women in their lives.”

In fact, the majority of the classrooms are coed classes unless it’s a younger group, such as junior high students, where having a girls-only class better matches up with the students’ maturity levels. Each interactive lesson lasts approximately 45 minutes, so teachers can easily incorporate it into their planning.

“It usually has an incredibly positive reception,” said Nina Baker, the EFA’s outreach coordinator. “They’re all kind of surprised that there’s such a high prevalence of a disease they’ve never heard of.” Ms. Baker added that boys are sometimes even more engaged in the lesson than the girls because, lacking the body parts, they have more questions. ENPOWR instructors also frequently hear from girls after class who say they’ve experienced vomiting or were told that long periods were “normal.”

“We equip students with tools and information to talk to their doctors because sometimes doctors dismiss the symptoms,” Ms. Tronolone said. “We talk to them about how to describe the symptoms and talk to a doctor in a way that the doctor will listen to them.”

Program instructors also tell the students how to find another physician if the first one isn’t receptive. “The most helpful thing doctors could do is listen to these girls because you shouldn’t be 14 and just be told to suck it up, but unfortunately that happens a lot,” Ms. Tronolone said.

 

Expanding nationwide

The program’s initial funding came in 2013 from a grant from New York state Sen. Jeffrey D. Klein. They have since received additional funding and expanded their reach by rolling out the Endo EduKit, an online package of materials that allow schools outside of the New York areas to bring the lesson to their classrooms. Most recently, the program expanded to Los Angeles through a partnership with the L.A. Trust for Children’s Health, which works with the Los Angeles Unified School District. So far, the ENPOWR Project has visited more than 125 sites and delivered more than 700 lessons.

Most classes participating in the ENPOWR project are health or living environment classes, and the EFA has made efforts to align the lessons with teaching standards despite state-to-state variations. However, the EFA encourages any interested teachers to use the lesson, and biology, creative writing, and social studies teachers have taken advantage of it.

EFA employees don’t have the budget to travel, so teachers present the lesson themselves or, if available, can bring in a local EFA volunteer to facilitate it. Classes in Minnesota, Jamaica and Nairobi, Kenya, have used the online program.
“We’ve only had one district say they don’t want this,” Ms. Tronolone said. “Most are very eager, and the 1 in 10 statistic is helpful in giving them an estimate of how many of their students might be living with this.”

While it’s not clear whether ENPOWR is the only endometriosis education program of its kind, it’s certainly among the largest and best known, given that smaller organizations frequently request permission to use their materials, according to Ms. Tronolone.

“We offer different types of lessons and I think that makes us stand out,” she said. “We have two types – and a third in the works – so teachers can select the lesson style that will work best for their particular group of students. We want the information to be appealing and engaging, and really stick with the students after they leave.”

Tara Haelle is a writer for Ob.Gyn. News.

 
 
 
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