Extrapelvic Not Rare: Shining a Spotlight on Endometriosis – A Common Yet Overlooked Disease

Breaking the Silence. Bridging the Gap.

Endometriosis affects 1 in 10 people assigned female at birth and countless gender-diverse individuals, yet awareness remains shockingly low. Misconceptions and outdated information still dominate education and care guidelines, contributing to an average diagnostic delay of 7–10 years—virtually unchanged from the 10-year delay reported in literature from the 1940's.

Our Mission: Extrapelvic Not Rare (EPNR) is a grassroots, woman-powered collective committed to closing the gap from symptom onset to diagnosis through outreach, education, and research programs founded in evidence-based resources.

Print is the backbone of which civilizations have been built and historical proof of their existence. Despite digital modes replacing printed modes of communication in numerous areas that results in more efficiency and productivity, it is not practical, feasible or even for the sake of pleasantries an appropriate mode to share thoughts, ideas, emotions or information.  

EPNR leverages print to advance our outreach programs. EPNR provides educational resources to people of all gender identities and socioeconomic backgrounds and educational levels and languages, some without access to electronic devices or in settings not compatible to digital platforms.   EPNR makes every effort to keep our carbon footprint small while ensuring we have for the populations we serve with limited access to virtual content.

Some of the ways we are using print include –

Conversation Starters: Our bilingual brochures spark dialogue at resource fairs, immigrant centers, and health expos.

Age-Appropriate Education: Half-fold “infochures” for tweens explain menstruation and what’s normal, with a parent section introducing endometriosis. Trifold brochures are available for adults.

Practical Support: At resource events for lower-income communities, we include an infochure in addition to menstrual supplies to people who need them. If they have access to the internet, we also provide a business card with QR codes to access the same materials online. .

Business cards are a cost-effective, compact resource that can be kept in a wallet or purse and given to friends, family and health care professionals.  

Sustainability and Accessibility: We make available two-sided business cards with QR codes to access virtual versions of our infochures online. We are in the process of creating a new ADA compliant website and convert all our literature for accessibility.

Networking: Distribute of our printed materials to other organizations has extended our reach, fostered partnerships and has laid the groundwork for future opportunities.

Impact: We have received verbal praise on numerous occasions for creating space at public events where learning and discussions happen and people suffering in silence are validated. From events held at community colleges and universities, women’s expos to immigrant and refugee centers to afterschool resource fairs we are regularly humbled by the genuine interest in the topic and witness to realization of individual that they, or someone they know likely has the condition, becoming empowered to seek a diagnosis.

Looking Ahead: Heading into 2026, our goal is to build-in and build-up the Endometriosis Edu-Walk.  Signage with text, symbols and images in English and Spanish is the cornerstone of the Edu-Walk. It is a modular outdoor learning experience, adjustable in length and content for different populations. QR code or multimedia links are included on some signs - to access additional content (eg. audio clips of songs, poems, book excerpts, endo expert; visual artwork, articles and more). A virtual version of the program will be available to those unable to walk the course.

The Endometriosis Edu-Walk is the only one of its kind. It is a self-paced opportunity with the participant in command of how little or how much they would like to learn about endometriosis.  Each sign is not only an opportunity to educate and inspire participants, while recognizing sponsors that share our values and support our mission.