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:

among persons prior to their first menses (pre-menarche)
may continue (or begin) after last menses (menopause)
occurs among persons afab born without a uterus
occurs among fetuses prior to birth and identified among aborted fetuses
among transgender males
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

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