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Gyn surgeons’ EndoMarch empowers patients
The Nezhat brothers take a grassroots approach to grow awareness.
To address levels of pain, Dr. Laufer usually asks young women if they feel they’re at a disadvantage to other young women or to men. This opens the door to learning more about school absences, missed activities, and decreased quality of life. Pain, he emphasizes, is only part of the picture. “It’s also about fatigue and energy levels, social interaction, depression, sexual function if they’re sexually active, body image issues, and bowel and bladder functionality.”
If the new generation of school nurse programs and other educational initiatives are successful, teens will increasingly come to appointments with notes in hand. Ms. Hayden counsels students on what to discuss with the doctor. And high school students in New York who have been educated through the Endometriosis Foundation of America’s 5-year-old ENPOWR Project for endometriosis education are urged to keep a journal or use a symptom tracker app if they are experiencing pain or other symptoms associated with endometriosis.
“We tell them that, with a record, you can show that the second week of every month I’m in terrible pain, for instance, or I’ve fainted twice in the last month, or here’s when my nausea is really aggressive,” said Nina Baker, outreach coordinator for the foundation. “We’re very honest about how often this is dismissed ... and we assure them that by no means are you wrong about your pain.”
ENPOWR lessons have been taught in more than 165 schools thus far (mostly in health classes in New York schools and largely by foundation-trained educators), and a recently developed online package of educational materials for schools – the Endo EduKit – is expanding the foundation’s geographical reach to other states. Students are encouraged during the training to see a gynecologist if they’re concerned about endometriosis, Ms. Baker said.
In Mississippi, Ms. Hayden suggests that younger high-schoolers see their pediatrician, but after that, “I feel like they should go to the gynecologist.” (ACOG recommends a first visit to the gynecologist between the ages of 13 and 15 for anticipatory guidance.) The year-old School Nurse Initiative has sent toolkits, posters, and DVD copies of the “Endo What?” film to nurses in 652 schools thus far. “Our goal,” said Ms. Cohn, a lawyer, filmmaker, and an endometriosis patient, “is to educate every school nurse in middle and high schools across the country.”