Walk Through the Storm With Us! We can meet our 2026 goals with your support.

Please support us with your vote to secure essential printing services to build-in and built-up our programs.

Voting closes December 12th, 2025.

Through the generosity of Conquest Graphic, we now have printed educational material created by out own team – in English and Spanish! To read digital versions of a few of these materials please click on these links:

Understanding Endometriosis (Adult – English)

Conociendo la endometriosis (Adult – Spanish)

What is a Period (Tween-English)

Que es una Periodo (Tween – Spanish)

Your vote can help us acquire printing services and necessary products to further develop the pilot Endometriosis Edu-Walk Program. We envision this interactive program will reach people across all walks of life, from tweens and teens to college students to the general public. But we your help to make this happen.

Latest Newsletter (released November 30th)!

Welcome to extrapelvic not Rare

Whether you are: a person who has, or may have endometriosis; are a medical professional; know someone with the disease; or simply want to learn more about endometriosis, we are delighted you found us.

Our website provides evidence-based information and resources about areas regularly omitted from conversations about the disease; it serves to help individuals better understand anatomy, impact of endometriosis among different body systems (other than reproductive) and overview of symptoms and complications.

The most common procedures and interventions applied by medical professionals for diagnosis and establish/implement for treatment are also summarized for each body system. Information here-in is not medical advice nor substitute for consulation with a licensed medical provider.

Endometriosis is not ‘just bad periods’ or extend of damage limited to infertility or restricted to gynecological structures. Endometriosis is as common as Type II diabetes, is potentially as devastating and similarly can negatively impact multiple body systems. Endometriosis invokes local dysfunction among the tissues and organs where lesions occur and contributes to alterations of systemic processes within the body.

An estimate 176 to 200 Million people across the globe have endometriosis; at least 44 to 80 Million of them have endometriosis among one or more body system other than reproductive.

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The ABC’s of Extrapelvic Endometriosis

(Check out our 1st publication. 100% of proceeds from hardback book purchases are reinvested to further our mission.)

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RECENT INTERVIEWS

Executive Director, Dr. Wendy Bingham Discusses Endometriosis Awareness Month and EPNR’s new eBook Resource (Free Download) with Hannah Olsen, host of ‘Afternoon Live’, ABC affiliate station KATU Channel 2. March 5, 2024. view segment

Executive Director, Dr. Wendy Bingham talks with Hannah Olsen, host of ‘Afternoon Live’, ABC affiliate station KATU Channel 2. October 7, 2023. View Segment

Executive Director, Dr. Wendy Bingham talks with Helen Raptis , host of ‘AM Northwest‘, ABC affiliate station KATU Channel 2. March 7th, 2023. View Segment.

Did you know endometriosis is a body wide disease?

Do you, or someone you know, have endometriosis in locations outside of the reproductive tissues?

Can you recognize presentations of endometriosis in various locations of the body?

Endometriosis has been traditionally labelled a disease of the female reproductive system, with active disease limited to the child-bearing years associated with menstruation. The disease is far more extensive within the body; across age, fertility, gender identity and assigned sex at birth.

Endometriosis can involve many other areas of a person’s body. It has been identified among female fetuses, cis-men, transgender males, and persons (afab) born without a uterus. Active disease has also been identified in people (afab) from early adolescence, after post-surgical hysterectomy, with/without oophorectomy, and beyond natural menopause. One purpose of Extrapelvic Not Rare is to assist redefining endometriosis as a disease with body-wide lesion potential, capacity for systemic inflammation and disrupt function of other body systems.

An estimated 10% of the global population develops endometriosis. In persons afab, the number is reaching 200M! It remains underdiagnosed and, in the United States, persons suffer an average 11 yrs before diagnosis (a 6-12 yr average delay among first world countries). The disease is chronically under funded and under investigated. It is as common as Type II Diabetes Mellitus yet, as a near exclusive disease of persons afab, it receives $2 per person in contrast to $31.30 for the later, a condition that predominately affects persons amab.

We join many other like-minded advocates and organizations to address myths, stigma, taboos and misinformation associated with this disease. Our goal is to remove barriers as they pertain to awareness, education, diagnosis and treatment for endometriosis. Our Mission is specific on the area of disease that occurs outside the reproductive system and the necessity to integrate ALL disease, body-wide, into all conversation about endometriosis.

If you would like to make a contribution to aide our projects (refer to objectives listed on the Mission page), click on the PayPal button below. Please save your PayPal receipt for tax purposes.

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