A new national university health initiative aims to improve endometriosis recognition and referrals to specialty care.
The partnership is led by Pelvic Rehabilitation Medicine (PRM), a provider focused on endometriosis and pelvic pain, and Project Endo, an awareness nonprofit. The program will offer colleges free educational resources, screening tools and referral pathways for those who need care.
Endometriosis affects up to 10% of women, making it about as common as asthma or diabetes, yet it takes women on average four to 11 years to get a diagnosis. College is a crucial time to reach out to those affected, PRM executives say.
“That’s when patients really need us,” Allyson Augusta Shrikhande, M.D., cofounder and chief medical officer of PRM, told Fierce Healthcare. “They go to university, they’re away from their parents for the first time, they’re noticing their normal may not be what their roommate, their friends are experiencing.”
It’s a stressful time when students’ diet and sleep take a hit, she added. Combined with stress, it’s a classic time for symptoms to flare.
Through the initiative, campus clinicians can refer students to PRM for care or find a list of other local care options. Many of the universities participating in the initiative to start are in areas where PRM has clinics or can offer an initial telehealth visit. “The idea is just to get patients to centers where they focus only on endo-specialist care,” Shrikhande said.
The screening tool provided to universities was created by a PRM surgeon. It consists of a questionnaire about symptoms, menstrual history and bowel and bladder history. The patient then receives a score that places them on a scale from mild to severe. “It really simplifies,” Shrikhande said. “It’s what we’re trying to do—is make it more of a science than an art.”
Universities participating include MIT, Johns Hopkins University, Howard University, University of Pennsylvania, Emory University, George Mason University and others.
“For too long, students have been forced to navigate debilitating symptoms without adequate information, support, or answers,” Shannon Cohn, founder of Project Endo, said in a press release. “The University Health Initiative helps bridge that gap by bringing education, awareness, and trusted clinical resources directly to the places where students seek care every day.” Cohn is on PRM’s clinical advisory board.
The standard of care for diagnosing endometriosis today is a diagnostic laparoscopy, which can be expensive and cause delays in care. But newer guidance from the American College of Obstetricians & Gynecologists (ACOG) aimed at reducing delays in endometriosis care recommends combining patient history, symptoms and a physical exam for a presumptive diagnosis.
Two new saliva tests for the condition were recently recommended for use across the U.K.'s National Health Service by watchdog agency National Institute for Health and Care Excellence (NICE).
Treatment for endometriosis also involves surgery. But it’s important to have a surgeon who specializes in the condition rather than a generalist OBGYN, Shrikhande says, because it involves a precise excision. Part of PRM’s treatment protocol is also to address any underlying nerve or pelvic floor dysfunction. And given it’s a systemic inflammatory disease, it’s also important to address nutrition, mindfulness and hormones. “That’s where you have to meet the patients where they are and give patients options,” Shrikhande said.
The initiative is working with a dozen university partners, with the goal of continued expansion. There is varying awareness of the issue. Some colleges recognize the condition is a problem worth addressing but don’t know where to send students, Shrikhande said. Others are less aware, with providers misdiagnosing the condition as irritable bowel syndrome.
Students, university health professionals, and campus leaders can learn more and access resources at pelvicrehabilitation.com/university and projectendo.org.
“It really is a huge women’s health initiative that’s underserved in America and really deserves more attention and focus from the healthcare community,” Shrikhande said.
PRM operates centers of excellence and specialty care locations in 12 states, offering surgeries, non-operative care and virtual programming for nutrition and mindfulness. While most PRM patients have endometriosis, the provider also sees postpartum patients who often experience pelvic pain after having a baby, as well as women in menopause. It works with commercial payers.