Extra-pelvic Endo (when endo is in WEIRD places)

Have you ever felt that you are doomed to a life of seemingly random issues that don’t appear to make sense? Perhaps you have “stomach problems”, “bathroom problems”, or weird aches and pains that have no diagnosis. Did you know that endometriosis can technically be found in all kinds of places?

Our Friend Wendy Bingham put together this beautiful presentation about extra-pelvic endometriosis (endo that is not in the pelvic region):

GeneralAudienceExtraPelvicPresentation  << Check it out, it’s awesome!

(The following section is taken from the presentation:)

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Where can ‘extra-pelvic’ disease occur?

Endometriosis has been identified in
every major organ of the body, in ALL 11
systems of the body.

The majority of extra-pelvic disease is found in these
4 systems:
Digestive
Urinary
Respiratory
Skin (Cutaneous)
It very infrequently involves the nerves, blood vessels, musculoskeletal and
areas like nose and tear ducts. These are very, very rarely reported.

How Common is Extrapelvic Endo?

1 in 10 female-gendered persons have endometriosis
If 100 female-gendered persons were in a room….
10 will have endometriosis…
2 of the 10 will (also) have..
extra-pelvic disease.
For every 100 women with endometriosis…
20 will (also) have extra-pelvic disease.
……about 20%

Endometriosis has been found in all 11 systems
of the body. But most disease is found in these 4
systems:
Digestive
Urinary
Respiratory
Skin and Scar
Other*
Other* includes all ‘rarer’ locations of disease
collectively. (ex: nerve, blood vessel, muscles,
bones, nose, tear ducts…)

[There is a] 40% probability each of Digestive or Urinary
8% probability each of Respiratory or Skin/Scar
4% probability of ‘Other’

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Do you have inexplicable symptoms that you never thought could be endo-related? Check out Wendy’s phenomenal presentation to learn more about extra-pelvic endo and what it could feel like when endo exists in places you might have never expected.

About the Contributor

Wendy Bingham is a survivor of endometriosis and an advocate for others who suffer from the condition. In March of 2017, she wrote a reply letter to the president of ACOG (American College of Obstetrics and Gynecology) along with others who are frustrated with the current standards of care for people living with endometriosis (http://acogpresidentorg/?p=1443 ). She participated in the endo advocacy video event “31FemTruths” (created by Silvia Wheatley Young) , sharing her own struggle with endometriosis (http://youtu.be/TVtedSDITpw ). Wendy worked with Julie Prilling to create ‘Drs. Notes’.  This is a downloadable flyer which highlights the systemic nature of endometriosis, perspectives of sufferers, statistics and simply stated facts about the most common areas of extra-pelvic disease.  This is a great resource for the public and providers.  Drs. Notes is located at: www.endostats.com/drnotes.html .  The flyer was dispersed at the World Congress of Endometriosis in Vancouver, British Columbia, Canada in May, 2017. Wendy is now an administrator of the Thoracic Endometriosis/Lung Endo online Facebook Support and Education Group created by Donna Wahl. Wendy uses her own knowledge, experience, and knack for research to advocate for change in the world of endometriosis care.

Update 7/11/2018 Wendy has launched an incredible website for extra-pelvic endo which can be found here.