EPNR Newsletter

To read our Inaugural newsletter Click here

Excerpt of:

“Pursuit of a Diagnosis: Bowel Problems & Endometriosis”

The Endometriosis Summit, February, 2022, Celebration Florida. Co-Presenters: DR. Abhishek Mangeshikar, MD (Indian Centre for Endometriosis, Mumbai, India) with Dr. Wendy Bingham, DPT

It’s a sad reality, challenging experiences are commonplace for those seeking diagnosis and treatment for this endometriosis. These encounters can have profound, lasting impacts on our lives.

Note: content of this video was filmed with light humour. It is NOT intended to trivialize individuals with endometriosis, their encounters with healthcare professionals or the disease itself. “Laughter is a weapon. It carries light. To laugh is to defy the darkness” – Isabella Connelly.

Warning: contains content that may trigger memories of previous medical encounters in pursuit of a diagnosis and/or treatment for endometriosis.

More than a Bad Period

Endometriosis is traditionally known as a disease:

  • of the reproductive system in people assigned female at birth (afab)
  • limited to people who menstruate during the child-bearing years.

In reality, the endometriosis lesions are identified in all (11) major body systems. It also:

  1. among persons prior to their first menses (pre-menarche)
  2. may continue (or begin) after last menses (menopause)
  3. occurs among persons afab born without a uterus
  4. occurs among fetuses prior to birth and identified among aborted fetuses
  5. among transgender males
  6. has been identified in rare cis-males.

While it is common for conditions of the uterus to occur concurrent with endometriosis among persons afab, it is a separate, independent condition that does not require the presence of a uterus to begin, continue or will resolve with removal of the uterus (hysterectomy).

One purpose of Extrapelvic Not Rare (501 c3) is to prompt redefinition of endometriosis as a disease with body-wide lesion potential and capacity to disrupt systemic homeostasis. Myths continue to perpetuate that disease outside of the reproductive organs, support structures and local area is ‘rare’, the reality is, extrapelvic endometriosis is not rare; its un-, mis- and delayed in diagnosis.

Members of the Endometriosis Community participate in the 2020-2021 Awareness Month Campaign for Extrapelvic Endometriosis

How can You help Us, help our community?

1.) Sign up for our newsletter Click here

2.) Donate to our organization

With registered 501 (c)3 status, contributions to Extrapelvic Not Rare are tax-deductible. All monetary gifts will be allocated to support our mission.

To shop smile.amazon.com:

  1. Create an Amazon Account. This account can be used at Amazon.com and Smile.Amazon.com.
  2. Go to https://smile.amazon.com/charity/select/search?query=extrapelvic+not+rare and select ‘Extrapelvic Not Rare’ as your preferred charity,
  3. Always shop at https://smile.amazon.com. There are no increased costs to purchase items at Smile.Amazon.com, and includes all perks for Prime members.

3.) Join our social media community:

I alone cannot change the world, but I can cast a stone across the waters to create many ripples

Mother Teresa

Originally Published: December, 14th, 2018

Last updated: January 4th, 2023