Endometriosis & gender, Krystle Issitt

Updated: Oct 2, 2020

Here at Endometriosis South coast, it has been, and continues to be our mission to raise

funds for endo support, education, and research. We want to be able to support and

welcome every single person, whether that be through the diagnosis process, treatment, or

emotional impact of the disease.

We’ve had a long, honest look at our language, and realised we had to do better!

You may have noticed a change in our language already, and we want to explain why.

So today we are talking about gender...

Why is inclusive language so important?

Many cis women know that having, what is considered a gendered illness, means a lack of

research and money in endo treatment. Our gender is part of the struggle to access proper

healthcare, so as support groups and awareness has grown, so has the rally call of being a

woman with endo. But, not everyone with endo identifies as a woman, these people are

often completely neglected in being recognised in educational handouts, posts on social

media, and in support forums. Endo can bring isolation, and these people are further isolated

in places they should be welcomed.

“Endo sisters” “1 in 10 women have endo” “hey ladies”

We hear these statements everyday in support groups and endo focused spaces. But they

aren't strictly true. Not everyone that has endometriosis is a woman.

Transgender men: an umbrella term for men who were assigned female at birth, and

identify as men.

Non binary: (is just one term to describe) those who do not identify exclusively with either

male or female, or neither at all.

Inclusive language can include “endo warriors” “endo siblings” “people with endo”

We are stronger together.

Firstly, to all the trans, non-binary, gender queer folks, I see you.

As I write this piece, its as a cis woman (and proud trans ally), with cis women in mind. If

there is anything I've learnt from the support group, it’s how beautiful it is to watch the

women support each other, that regardless of how much pain they are in, how utterly

exhausting the surgeries, appointments, the juggling of life with this chronic disease, women

are incredible in reaching out and holding space for others….. And, that space must not

leave one endo warrior behind! We are stronger together.

It's ok to still be learning.

So, you may be thinking, well I’ve used lots of language aimed at cis women! That's ok, we

are all learning, And, if you’ve always thought of endo as a gendered illness you’d be

forgiven. The first thing I’d like to point out is that expanding our language isnt going to take

any of our focus away from supporting cis women, its purely expanding it to represent all

gender identities.

Gender dysphoria: The distress of feeling ones sense of gender identity, as female or

male, to be opposite their assigned sex at birth.

Many trans people experience gender dysphoria, this can cause them huge emotional

distress in accessing what's seen as “gendered healthcare”. I spoke to several trans men

about their experience in gynecology. They all agreed that every step of accessing care was

traumatic for them. The simple act of sitting in a gynae waiting room as a man was hugely

triggering for their dysphoria. Inducing feelings of fear ,shame, and panic.. They were often

mis-gendered (the clinician would assume they were female). Even at times having

consultants question their requests for hysterectomies, thinking it may be part of their

transition. And when they want to turn to support groups, they find more dysphoria inducing


Through my own research I've found a endometriosis support group on facebook which is

close to 700 people, they all identify as non-binary, gender fluid, Trans, or gender

queer…...and they all suffer with endo!!

It’s this charity's focus to support and welcome every ENDO WARRIOR, not just for Pride

month, but everyday. As the LGBTQ+ advisor for Endometriosis south coast, I'

m here to be

your advocate,as the charity moves forward.


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