Follow Extrapelvic Not Rare and their infographic across a variety of social media platforms. Whether you prefer ‘bite size’ nibbles or ‘monster chunks’ of accurate, up-to-date information about endometriosis outside of the female reproductive system, Trish and her team have an assortment to choose from. #WeAreExtraNotRare

Instagram & IGTV: @ExtrapelvicNotRare

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Facebook / Meta: ExtrapelvicNotRare

Twitter: https://twitter.com/XtraNotRare

You Tube: Extrapelvic Not Rare Channel

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FACT VERSUS MYTH-INFORMATION (FICTION)

‘Air Time’ on television, talk radio and written articles across social and main stream media has increased the number of people who have ‘heard’ the word ‘endometriosis’. However, recognition of the word versus accurate portrayal of the disease vastly differs in the media. The inaccurate portrait of endometriosis in the media is a microcosm of the healthcare industries’ inability, or unwillingness, to dispel myths and outdated information.

When endometriosis takes ‘center stage’ and the ‘spotlight’ is cast upon the disease, an accurate portrait is vital. The audience of sufferers ‘wait on the edge of their seats’ with hope and yep, some excitement that the media will accurately portray life with this disease. Almost every-single-time, hope turns to disappointment, sadness and frustration among millions of sufferers. These inaccuracies demonstrate the HUGE gap between the perception of providers and public versus the experience of those living with the disease.

Media has a responsibility of accurate representation. We cannot expect advocates to continue to use limited spoons, to correct, the near-daily task of resolving inaccurate media, oft met with unresponsive media to resolve the issues. Where do we start to fix this problem? Until the American College of Obstetrics and Gynecology acknowledge and address the current knowledge and skills deficiencies among providers and appreciate that the ability and efficacy to write a prescription for medical ‘management’ is a far cry from the standard of care that is desperately needed and can be given. The knowledge and skill does exists. Those who have developed surgical competence to remove disease from the body should be recognized. Their proficiencies and advanced surgical dexterity necessitates creation of an endometriosis sub specialty within gynecology. Establishment of a sub specialty will help reduce the myth-information surrounding the disease. The media would know who to consult to improve portrait of endometriosis in a more efficient process. The result, spared spoons.

If Siskel and Ebert (professional movie critics), were to review media for accuracy of endometriosis, most media would receive ‘one (out of two) thumbs up or worse, ‘two thumbs down’. Can we start to change that?

We take a look at a few media selections that portray extrapelvic endometriosis in mainstream media. The ‘Facts versus Myth-information (Fiction)’ are summarized for each piece. Each link below describes a different media piece with incorrect information about endometriosis, with specific focus on extrapelvic disease.

Direct Access to Media Blogs for Fact vs Myth-Information please select these:

The Good Doctor: Season 2, Episode (2018) TheGoodDoctor36Hrs
House: Season 5, Episode 14: The Greater Good (2009) HouseTheGreaterGoodCP

Access ‘Trish Blogs about Endo’

Merchandise:

The most difficult part of creating a nonprofit organization is creation of funds to cover costs associated with trademark, website development and maintenance, business licenses (at all levels of governement) and application for 501 (c)3 tax-exempt status. A gap occurs between establishment as a nonprofit and qualification for grants and donations. To help fill this gap, merchandise with a small portion of proceeds allocated to the nonprofit are a source of income. Please check out a few items we have designed to help raise awareness and stimulate conversation about our organization and extrapelvic endometriosis.

1.) Photo Book (Softback)

The ABC’s of EPE: Extrapelvic Endometriosis. Softback picture book with A to Z locations of endometriosis identified outside of the female reproductive organs and tissues (Pelvic Endometriosis). Citations listed for all locations. (10% proceeds to Extrapelvic Not Rare nonprofit).

The ABC’s of EPE Extrapelvic Endometriosis

2.) Non-Wearables:

Please check out the durable, reusable beverage containers and necklace pendants that will strike up conversations and awareness everywhere you go.