I'm Not a Lady or an Endo Sister

Being a nonbinary person with endometriosis makes it difficult, if not downright scary, to navigate.

When I first joined online endometriosis groups on social media, I had only just come out as nonbinary.

Feeling unsupported in support groups

While I desperately wanted information on the disease and connection with others with endometriosis, it was jarring to keep seeing posts starting with “hi ladies!” or those calling me an “endo sister.” It didn’t help me feel connected and made me feel like those spaces weren’t ones I could occupy.

While annoying, those situations are benign compared with the outright hostility I witnessed when someone dared to point out in a Facebook group that it's not just women that have endometriosis and that not everyone with endo has a cisgender male partner.

Homophobes and transphobes came out of the woodwork to pile on people who dared say that queer people, trans men, nonbinary, and gender non-conforming people get endo too. Often the moderators remained silent.

Sometimes I would comment, but most of the time, I tried to protect my heart and mental health by staying out of it. I left several groups because the atmosphere was too toxic.

It is unfortunate because I’m sure I would have learned good information from those groups and potentially made friends. But enduring harassment and hate aren’t worth it.

I’m thankful that the general community here is welcoming and accepting and that the editors and moderators quickly step in when someone makes homophobic or transphobic comments. It’s rare, but it happens.

Misgendered by doctors

Another place that is hard to navigate is the hospital. I went to the ER after surgery last May, and I knew the hospital had a record of my pronouns and gender identity. Even though I was in a relatively liberal area, I worried about discrimination.

And sometimes, I still wonder if my 13-hour long stint there was so long because the staff was ignoring me. I can’t say for sure. I was misgendered, though.

A cis male doctor came to do an exam and said, “I see your pronouns are they/them.” I was glad for the recognition. But my good feelings were fleeting.

In the next breath, he turned to the medical assistant and used "she" pronouns for me. He didn’t get them suitable for the rest of the exam either. I was too tired and scared to speak up about it.

Gynecology offices aren’t much better. The office at the hospital where I went to the ER still calls itself ”Women’s Health” when it would be easy enough to change the name to “Gynecology and Obstetrics.”

Even at my former gynecologist’s office, owned by a lesbian and very queer-friendly, I was often misgendered. My gynecologist is a rock star and did a fantastic job with my care, which made it hurt a little bit more that she used incorrect pronouns for me.

The need for gender equity in healthcare

Now I’ve moved to a new state, and I’m nervous about what it will be like at all the new doctors’ offices I need to visit. I wish that this wasn’t something I would have to worry about on top of worrying if I would even be able to find a gynecologist here who understands stage 4 endometriosis.

I dream that all physician programs would have comprehensive classes on LGBTQIA2S+ health so that doctors are more well-informed about the issues facing our community and can provide us with the health care we deserve. At the very least, I wish they’d take a workshop on gender and sexuality so they wouldn’t assume my gender or the gender of my partner and would ask and use my correct pronouns.

The next time you’re in a community space for endometriosis patients, please remember that not all of us are women or ladies and that some might use other pronouns than she. Doing so would go a long way toward making the most marginalized folks in the community feel comfortable.