Welcome to extrapelvic not Rare

Join us in our 2023 March Endometriosis awareness campaign!

Back by popular demand!

WE KNOW endometriosis occurs in all (11) major body systems. The Rest of the World NEEDS to know.

Between March 1st – March 31st:

  1. Collect a photo of yourself in black and white, (identifying features are optional, front or back of body, your choice)
  2. Add a yellow ‘X’ to all disease areas confirmed by surgery or imaging (optionally, yellow ‘?’ for unconfirmed disease areas)
  3. Post with the hashtag #2023CampaignExtrapelvicNotRare for a chance to have your photo featured in our 2023 video compilation! If you would not like for us to use your image for the video, add #noshare to your post to specifically request this.
  4. You can also add the following information to your post, if you wish:
    • First Name (or anonymous)
    • Residence (country, with or without city)
    • Areas of extrapelvic lesions (ie. #RectumEndometriosis #DiaphragmEndometriosis #UreterEndometriosis #BladderEndometriosis)
    • number of years you have experienced symptoms
    • whether you have had surgery, are still waiting for surgery, or have chosen not to pursue surgery

“The Beginner’s Guide to Thoracic Endometriosis” by Wendy Bingham, DPT for Riverside Medical Clinic Charitable Foundation on May 25th, 2021.


in honor of march 2021 endometriosis awareness month

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Endometriosis: It’s not just a disease of the female reproductive system?

(Guest blog ‘wonder woman wednesday’ @ happypharmlife)


(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)

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)

Trish’s latest blog:

Blog #9: Wendy Bingham discusses Endometriosis on Portland AM Northwest – Live Interview

Extrapelvic Not Rare founder, Wendy Bingham DPT, sat down with AM Northwest host Helen Raptis on March 7th, 2023 in the 3rd of a 3 part special segment about endometriosis….

read more

As of March 15th, 2023, residents of 188 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 and biological sex.

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.

Endometriosis is a disease which remains under recognized, under funded and under investigated. As a result there are many myths, stigmas, misinformation and ‘taboos’ associated with the disease. We join many other like-minded advocates and organizations to remove these 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.

Twitter @ XtraNotRare

YouTube: Extrapelvic Not Rare Channel

Instagram / IGTV:  ExtraNotRare

(last updated 03/02/2023)