Queer people with endometriosis need choices, not assumptions — just like everyone else | Endometriosis UK

Queer people with endometriosis need choices, not assumptions — just like everyone else

June is Pride month in the UK - a time for celebration of the LGBTQ+ community.

In today's blog, we share Cassia's story:

"Queer people with endometriosis need choices, not assumptions — just like everyone else.

‘So, you’ve never had sex then?’ might seem like an odd question from an ultrasound technician, mid-appointment. I grit my teeth. I explain that I have had sex, that in fact I’m currently sexually active, with a partner. Some of you can guess where this is going. ‘But, you’ve not really had sex, real sex? Because I can’t do the scan unless you’ve had real sex.’

Whenever I talk about my experience with endometriosis, I feel the need to start by saying how lucky I am. And in a lot of ways, I am — I was able to have surgery and get diagnosed; I don’t get misgendered when receiving treatment; I don’t have to deal with racist bias about my level of pain. As a queer woman, though, I feel like I’m constantly having to challenge people’s assumptions on everything from the sex I have to my fertility plans, and fight for my right to make my own choices about my care. It’s offensive to be told the sex I was having wasn’t ‘real’ just because it didn’t involve a man; what made me angrier, though, was not being allowed to have the scan regardless.

When getting treatment for endometriosis, it often feels assumed that your priority is preserving or maximising fertility: that the ‘standard’ endometriosis patient is a straight white woman trying to get pregnant. For me, fertility is pretty irrelevant, and even before I was diagnosed, I was never going to have children ‘naturally’. What I want above all is an improvement in my severe pain, but it took years for me to find a doctor who didn’t prioritise my hypothetical ability to have kids in the future over my debilitating pain now.

What’s true for me doesn’t apply to all LGBT+ endo sufferers though, and some people have the opposite problem: the assumption that because they’re not straight, or because they’re butch, they don’t care about being able to get pregnant. This is exactly why it’s so important to listen to LGBT+ people about our individual priorities and let us make our own decisions. Don’t make assumptions about the gender of people’s partners or the kind of sex they have. Don’t make assumptions about their fertility preferences. And don’t make assumptions about their gender identity or pronouns.

These apply particularly to LGBT+ people because we often have different needs, but they will benefit cis straight women with endometriosis just the same — you still don’t know what their fertility preferences are, or what sex they’re having (if any). Everyone has the right to make these choices for their own care, and medical professionals need to recognise the diversity of people’s needs and priorities". 

A huge thank you to Cassia for sharing her story. Endometriosis UK is dedicated to advocating for everyone affected by endometriosis, whatever their sexual or gender identity. We want to ensure all voices are heard, acknowledged and understood.

All too often, we hear that those with endometriosis who identify as LGBTQ+ face challenges in accessing care and support. This includes not being taken as seriously as a result of their sexuality, assumptions being made about their views on fertility, discriminatory remarks being made, or feeling excluded due to the gendered language used in relation to the disease.

We promise that, as an organisation, we will listen to the experiences of those who are LGBTQ+ and put practices in place to ensure we are providing the necessary support and guidance for all. In the next few months, we will be sharing how you can get involved in developing this area of our work.

We ask that everyone respects and acknowledges the challenges that the LGBTQ+ community face in this respect, and stand with us in calling for change.

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