Volume 2; November 2023

We’re on a mission to shed light on a lesser-known truth about endometriosis, that extra-pelvic endometriosis is NOT RARE. This condition extends beyond the pelvic region, affecting organs like the bladder, intestines, nerves, lungs and even the brain. Through advocacy, research initiatives, and community support, EPNR aims to bring awareness, educate, and ultimately enhance the quality of life for those facing the unique challenges of extra-pelvic endometriosis. Join us in rewriting the narrative of this often misunderstood condition and making a lasting impact on the lives of countless individuals. We remain humbled and grateful for your continued support. 

-Wendy Bingham, DPT

We believe that change is a collective effort. Whether you're a healthcare professional, a researcher, a patient, or an individual passionate about making a difference, there are many ways to get involved. Join us in this journey to make a lasting impact on the lives of those with endometriosis. Together, we can help show that extrapelvic endometriosis is not rare. 

Volunteer

Join our team of dedicated volunteers working towards our common goal. Our volunteer team has grown in 2023 and we look forward to expanding even more in 2024.

Make a Giving Tuesday Donation

Financial support in 2024 will specifically help us publish a research report and education books, provide community outreach awareness events, and basic non-profit operating costs. Donations accepted at

EPNR Meta/Facebook Page and PayPal

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Evolving Our Identity; Unveiling our New Logo

Today we unveil a new chapter in our story: a new logo, and with it, our vision to further support our mission to advance our understanding of extra-pelvic endometriosis. 

Extra-pelvic endometriosis is a challenging and often misunderstood presentation of the disease. It is often considered a disease impacting only women, and the conversation remains centered around menstruation and infertility. While endometriosis primarily involves the growth of endometrial-like tissue outside the uterus, extra-pelvic endometriosis manifests in areas beyond the pelvic cavity, affecting organs such as the lungs, diaphragm, bowel, and even the brain. 

When we created EPNR in 2018 we wanted a way to visualize the often-overlooked ways endo impacts those in our community. Each part of the logo represented the different body systems in which endo has been found; shedding light on often misdiagnosed symptoms and the experiences of those not heard in the traditional narrative. We were guided by a desire to represent everyone, choosing to keep the logo simplistic, faceless, and embellished with a bright, colorful design. 

As we continue to evolve and grow, we were pulled toward the idea of creating a logo that included even more of our community, stepping away from the traditional figure of a woman. EPNR collaborated with graphic designer Kelli Cerruto, to transform the logo into what you see today. The profile was drawn by Kelli’s daughter based on her experience witnessing her mother’s struggle with the disease. The profile has a genderless expression and is overlaid with the bright colors of the original logo. to represent all of the different body systems that can be impacted by the disease. 

Our hope is that all people with endometriosis feel included in our new logo, and we are excited to continue supporting you for many years to come. 

Pictured, Sarah, supported our efforts as part of her High School Senior Community Service Project.

Our First Edu-Walk


In April we hosted our first educational program, "The View" Edu-Walk, centered around providing quality information about endometriosis to the community. This free event featured a screening of "Endo What," a modest 5k educational walk, and a guest speech from Dr. Shanti Mohling. We were excited to welcome members of our community and expand their knowledge of the disease.


Keep on the lookout for an edu-walk near you!


See our wrap up Video on our home page!

Advocacy in Action

See our founder, Wendy Bingham, DPT spread awareness of the disease. Discussion topics include barriers persons with endometriosis face: historical lack of funding, perpetual myths and misinformation that contributes to dismissal, misdiagnoses, delayed diagnosis and limited treatment options. Watch interviews at AM Northwest and Afternoon Live here.

Upcoming Research

Interpretation of data from EPNR's first research project is nearing completion!


Findings of the study, "Survey of a select population of persons with surgical diagnosis of thoracic/ diaphragm endometriosis and their medical encounters from symptom onset through surgical diagnosis", will be presented at The Endometriosis Summit 2024 (March 8-10), Celebration, Florida.


The study provides a unique insight into symptoms, misdiagnoses and utilization of medical services of persons with thoracic and diaphragm endometriosis.

Extra Pelvic Not Rare

www.extrapelvicnotrare.org