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.
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.
Newsletter
To read the Annual Newsletter released November 2023, click here.
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.
Latest Community Event:
Extrapelvic Not Rare launches the first edu-walk about endometriosis: a community enrichment program. April, 2023. View Video Recap.
April 2023 @ Vancouver, Washington, USA
in honor of endometriosis awareness month. March, 2021.
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Podcast Interviews:
PODCAST PART 1 GUEST INTERVIEW WITH HOSTS AMY AND BRITTANY OF ‘IN 16 YEARS OF ENDO’
(Link to audio interview @ in16yrs.com Episode 59)
Podcast Part 2 Guest Interview with Amy and Brittany of “in 16 Years of Endometriosis’
(Link to audio interview @ in16yrs.com episode 60)
More Podcast Interviews: select here
Blogs:
Endometriosis: It’s not just a disease of the female reproductive system?
(Guest blog ‘wonder woman wednesday’ @ happypharmlife)
To access our Blog Page: Select Here
Online Education:
“The Beginner’s Guide to Thoracic Endometriosis” by Wendy Bingham, DPT for Riverside Medical Clinic Charitable Foundation on May 25th, 2021.
extrapelvic not rare Video Series
Introduction and Lesson 1: What is Extrapelvic Endometriosis?
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Lesson 2: Is Extrapelvic Endometriosis Rare?
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Lesson 3: Where in the body has endometriosis been found?
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Lesson 4: Diaphragm Endometriosis
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Self-Advocacy Tool Kit (download)
To Access More Educational Videos: Select Here
As of November 20th, 2023, residents of 193 countries and autonomous territories on every continent have visited!
“I alone cannot change the world, but I can cast a stone across the waters create many ripples”
– Mother Teresa
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.
IAn estimate 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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(last updated 04/22/2024)