Why I Have Endometriosis but Don’t Identify as an ‘Endosis’ – How we can Make the Community More Inclusive

Nearly five years after my diagnosis, I was brutally reminded that endometriosis does not conform to the rules. 

“You see this?” My kind but completely unfazed surgeon pointed to the MRI images on display. 

They informed me that where we would usually see more defined spaces between the uterus the left ovary and colon, this wasn’t the case on my scan. My endometriosis had formed plaque that had bound them all together and the disease was now covering most of my sigmoid colon. 

“It’s not an emergency- it’s likely been this way for some time- but I think it’d be reasonable to have surgery to correct your anatomy and excise the disease.”

In the following weeks, I began to grieve the news of my impending surgery. When the mental weight was too heavy or I had far more frantic questions than reasonable answers, I turned to the endometriosis community. 

Not long into my deep-dive of various endo-centric social media accounts, I was quickly reminded why I’d taken my long reprieve from the community in the first place. While open and accessible to a cis woman like myself, the endo community is still not an inclusive or accepting space for trans, intersex, or gender nonconforming (GNC) patients. 

While there are as many ways for endometriosis to manifest as there are people with the disease, there is only one archetype represented in the endometriosis community: that of a thin, white, heterosexual, cis, wealthy woman.

Like all stereotypes, this common perception has no foothold in truth. 

Endometriosis impacts about one in ten people assigned female at birth and is not limited by the confines of a uterus, nor the archaic idea of the gender binary. 

Often referring to themselves as an ‘Endosis’, these people are passionately rallying for endometriosis-related changes that are desperately needed in the medical world. 

They’re campaigning for inaccurate theories like ‘retrograde menstruation’ to be overhauled and for excision removal surgery to be uniformly recognized as the gold standard for care, over less-precise techniques like ablation removal. 

As I watch them crusade to leave these outdated theories and harmful treatments in the past, I wonder if they realize that they’re also leaving behind so many people suffering from the disease.   

As mistreated and misunderstood as endometriosis is, it’s common for patients to seek out encouragement and validation from social media support groups and online forums. The barrage of chronic pelvic pain, excruciating pain during menstruation, and other symptoms take both an enormous mental and physical toll on a person suffering with endometriosis.

Community support is an invaluable tool in combating the feelings of anxiety, stress, and depression that the disease can bring with it. Yet, in these spaces, trans, intersex, and GNC people are confronted with gendered language, cissexism, and a community generally unwilling to include them. 

When seeking out community support, hearing people with endometriosis exclusively referred to as ‘women’, or ‘ladies’ and frequently seeing womanhood equated to childbearing can be especially triggering for those already experiencing gender dysphoria. 

Rather than create more barriers to accessing support, members of endometriosis-related social media support groups and online forums can take small but meaningful steps to create a safe space for people across the gender spectrum. Here are some changes that could make your platform more inclusive: 

• Replace gendered phrases with gender-neutral language.
  • EndoSis →endo-sibling, endo-friendo, or endo-person
  • Women warriors → chronic illness warriors 
  • #HysterSister→ #MeantToBeUterusFree #HysterectomyThriver 

• When featuring a fellow endo-person’s perspective, make an effort to center the stories of non-binary, trans, intersex, and masc-presenting people with endometriosis. Share your platform! 

• When citing basic facts of endometriosis, change gendered words to gender-neutral terms.  
  • No: One in ten women has endometriosis. It takes an average of ten years for a woman to be diagnosed with endometriosis. 
  • Yes: One in ten people assigned female at birth have endometriosis. It takes an average of ten years for a person to be diagnosed with endometriosis. 

• If you have them, inform the administrators and mediators of your support group about the gender-affirming changes you’re making to the space. Ask them to do the same. Don’t tolerate any hate speech or misgendering noticed in these spaces. 

A true nonconformist, endometriosis is unaware of the gender of its host and it impacts patients of all gender identities. Those of us with the disease have to constantly advocate for the most basic of medical care and at every turn, we are doubted, disregarded, and gaslit. 

As I pursue my next radical excision surgery, my path is flooded with obstacles – financial, locational, insurance restrictions, an unpredictable pandemic, increased risk factors. It’s easy to feel defeated.

As most endo-siblings already well know, there are enough of these obstacles obscuring our path to managing life with endometriosis. 

Let’s tear down the barriers within the support community and make it an inclusive, safe space for patients across the gender spectrum.

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LGBTQ+ Resources for Those With Endometriosis 

Endo Knows No Gend-o: This is a support group/community for people who have endometriosis and/or PCOS, and is explicitly trans-inclusive and forward. https://www.facebook.com/groups/117791448846494/ 

endoQueer: The group endoQueer was created as a space for LGBTQIA+ individuals with Endometriosis. https://www.facebook.com/groups/1655289847828418 https://www.instagram.com/endoqueer/ 

Endo Siblings Support Group: for Trans and Enby People with Endometriosis: A support group for people with endometriosis who don’t identify as cisgender women. (Including people who identify as trans men, non-binary, genderqueer, androgynous, and more.) https://www.facebook.com/groups/175916623758244/ 

Endo Warriors Aotearoa: A New Zeeland support group aimed at promoting period and endometriosis education, spreading awareness about endometriosis. and period poverty. Endo Warriors Aotearoa, provide support to all with endo regardless of age, sex, stage or where you at in your journey.  https://www.endowarriorsaotearoa.com/ 

This is What Endo Looks Like: A brand built on highlighting awareness for a prevalent disease, which does not discriminate: endometriosis. www.thisiswhatendolookslike.comhttps://www.instagram.com/thisiswhatendolookslike/

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