Non-binary person left with debilitating pain after misgendering and ‘confusion’ from doctors
A non-binary person has described how the gendered language around endometriosis, misgendering and dismissal from doctors can be as debilitating as the condition itself.
Tea Kane, a non-binary person currently studying for their master’s degree, told PinkNews that they began experiencing excruciating symptoms after they started their period at age 12.
Kane has fibromyalgia – a long-term condition that causes chronic pain all over the body – and this pain would become especially “horrendous” around their period.
“I was just [experiencing] incredible fatigue, puking, nausea, pain from my chest, my neck and all the way down to my ankles and knees,” they explained.
After going to college, where they became well-versed in research, Kane eventually discovered that their symptoms aligned with those experienced by people who have endometriosis.
Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places – such as the ovaries and fallopian tubes – and can result in severe pain that impacts everyday life.
According to the World Health Organisation (WHO), it affects “roughly 10 per cent (190 million)” of people of reproductive age. But sadly, the broad symptoms of endometriosis mean that healthcare workers can’t easily diagnose it, and many people face a years-long wait to get an official diagnosis.
During university, Kane visited the emergency room a number of times with “incredible stomach pain, vomiting, a migraine where I can’t see, I can’t think, I can’t do anything”.
But hospital workers would just “completely dismiss” them, telling them: “That’s not a real thing”.
During their search for an endometriosis diagnosis, Kane has been seen by “like 20, 30 doctors” who have all been “stumped”.
Sometimes, when they have felt comfortable, they have come out as non-binary to their doctor. But this resulted in the doctor becoming “uncomfortable” with them, or in them being misgendered, they said.
As Kane found out, all too many resources use gendered language to describe endometriosis
Currently a laparoscopy, an operation where a surgeon passes a thin tube through a small incision to examine the abdomen or pelvis with a camera, is the most common way to diagnose the condition. Kane underwent the procedure in August 2020, but their surgeon said there were no abnormalities, meaning they were not able to give them the diagnosis they hope could help them.
Without an official diagnosis, Tea Kane has persevered in their research. But they quickly discovered that there is a distinct lack of resources about endometriosis that are inclusive of non-binary people and trans men.
The NHS website states that endometriosis can “affect women of any age”, and even the WHO’s resources described it as a condition that impacts “women and girls”. Kane has found that “everything related to the uterus” – including papers, med school training and even endometriosis support groups – aren’t inclusive of trans and non-binary people.
Once, a friend of Kane’s purchased a book for them about endometriosis, “figuring out yourself” and regaining “trust in your body”. But every single page referred only to women.
“There were examples where they’re like ‘oh, you go into the hospital’, and the doctors say ‘she is unwell, but we don’t know what’s wrong’ – like it’s all ‘she, she, she’,” Kane said.
Kane used to feel like they were “being stabbed every time someone called me a girl or she or anything along those lines”.
“At this point in my life, I’m stable enough in my own identity that it doesn’t affect me anymore,” they added.
Kane eventually discovered Frendo, an inclusive smartphone app that empowers and supports people who have endometriosis symptoms. The app uses anonymised data that supports endometriosis research to ensure all people with periods are represented in clinical trials, and helps people to track their symptoms accurately.
Dearbhail Ormond, the founder of Frendo, told PinkNews: “It’s about creating that solution that does something that hopefully helps people. And also, hopefully, it tries to change the attitudes of medical practitioners and fills that knowledge gap that is so critical and so overt at the moment.”
She continued: “We need to push them to be more accountable about things like endo and about misgendering – not just with endo but across the board with illnesses.”
Since their laparoscopy a year and a half ago, Kane has paused their efforts to get a diagnosis. Though their surgeon was “lovely”, the mistreatment and misgendering they’ve experienced through their journey has left them completely disheartened.
“I just can’t deal with it,” they said. “It’s just so exhausting.”
They have found that there is “just so little research into different uterine conditions”, and there is even less training for medical professionals on how such conditions impact the LGBT+ community, and how to care for non-binary patients.
“As a non-binary person, I wish that every single person who works in healthcare – whether they were in med school 50 years ago or yesterday, whether they’re a nurse or cleaning up biohazard waste – had training,” Kane said.
“Every single person should know there are more than two genders, and telling someone whose non-binary that there are two genders and you have to pick one – whether they like it or not – is offensive.”
A spokesperson for the NHS told PinkNews that its digital services “provide information for everyone” and recognised the “importance of using language that is inclusive, respectful and relevant to the people reading it”.
“We are working with colleagues across the NHS to produce more inclusive content and we’ve recently updated some of our pages, for example around gynaecological cancers,” the spokesperson added.
“We recognise there is more to do and there is an ongoing programme of work to review our pages and engage with our users, including the LGBT+ community, to improve our content.”
However, the NHS’s online resources, which are managed by NHS Digital, still use gendered language to describe endometriosis despite it being flagged by PinkNews.
Endometriosis UK, the leading charity for people living with endometriosis in the UK, told PinkNews that it is working with NHS Digital to include more LGBT+ inclusive language in its endometriosis. At the time of writing, the page still uses gendered language.
“We are very aware that the direct and indirect discrimination faced by transgender and non-binary people with endometriosis is something that needs to be addressed,” said Emma Cox, CEO of the charity.
“While awareness is really important, those with endometriosis need and deserve more than just awareness alone – they need tangible action and positive changes which improve their wellbeing.”