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A shooting pain fires across my body. It starts in the muscles behind my kneecaps before darting through my quadriceps, ribcage, spine and to the back of my neck. It’s excruciating. I haven’t eaten for several days due to the nausea. The migraines make my head feel like a helium balloon ready to pop. This is the agonising scene I’ve faced every month for the best part of 10 years, brought on by my period.
I’ve suffered from fibromyalgia – a nerve condition that causes chronic pain – since childhood and severe endometriosis symptoms from the age of 16. However, I’m yet to receive an official diagnosis for the latter - a condition whereby tissue, similar to the lining of the womb, starts to grow in other areas of the reproductive organs.
Last year I underwent a laparoscopy - minimally invasive surgery in the abdomen - and a biopsy, which are two of the most common ways to diagnose endometriosis. While my surgeon failed to find the condition, he said it isn’t to say I don’t suffer from it, nor that it won’t develop. This isn’t uncommon. Endometriosis patients will know that because the displaced tissue can come and go, receiving a diagnosis can be an incredibly long and frustrating process, spanning decades and involving numerous surgical procedures and tests. But if you’re non-binary or trans, the journey can feel even more arduous.
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I came out as bisexual to my friends and family during my second year of university. Coming out felt good - it felt right - but something was still missing. Weeks later I had a conversation with two female friends who said that their gender was an important part of their identity. Then it hit me: Gender had never been something I’d valued as integral to who I was. It wasn't something I ever thought about. At that time, however, it didn't cross my mind that I could be non-binary. After all, I liked make-up, wearing dresses and all things pink – qualities I naively thought ‘made’ me a woman. It was only in my third year of studying, when I met a non-binary person for the first time, that my mind opened to the possibility of living as your authentic self.
Coming out as non-binary to my friends hasn't been nearly as stressful as the constant battle I now face to be treated appropriately in medical settings. Over the years, I’ve been seen by one or two doctors who understand the importance of using correct pronouns when looking after non-binary and trans patients. But they’re few and far between. I’ve met doctors who appear too scared to talk to me for fear of saying the ‘wrong thing’. Others unashamedly misgender me and refuse even to attempt to use correct pronouns. It’s a real sucker-punch to the gut, especially when you’re in pain and needing help.
On one occasion, a doctor listed the fact that I'm non-binary alongside existing health issues in my medical notes, such as depression and anxiety. I had to point out to them that being non-binary isn’t a problem nor a health issue - it’s a solution.
Misgendering is sadly incredibly commonplace. When someone misgenders me, I feel like I'm not seen; like I'm not a human with the same rights as others. Years ago, being called a 'girl' or 'woman' would trigger a panic attack, but I've gradually been forced to build up a tolerance to it.
When you look up information about endometriosis, the language is centred around women and female health, rather than reproductive health. The figure that ‘one in 10 women suffer from endometriosis’ is too often quoted, without the acknowledgement that not everyone born with female reproductive organs identifies as a woman. Endometriosis is a disease that affects anyone with a uterus who is of childbearing age, regardless of gender.
There’s a huge problem already, when it comes to the LGBTQ+ community accessing healthcare. For non-binary and trans individuals, the way we're often questioned about our identity can be a barrier to getting treatment for our symptoms. There are also those who have suffered electric shock and 'conversion therapy', for whom trusting another medical professional, or anyone in a position of power, can be extremely difficult. It can be traumatic and anxiety-inducing to seek help.
In turn, the void between LGBTQ+ patients and the healthcare system becomes detrimental to medical professionals’ experiences and their education about non cis gendered society.
As we've seen in the US with the recent overturning of Roe v. Wade, it's difficult enough for a straight cis woman to have autonomy over her body, so imagine the barriers for those in the LGBTQ+ community whose very existence is debated.
In recent years, I’ve taken things into my own hands and turned to period tracking apps to better understand my cycle and symptoms. Unfortunately, the vast majority are focussed on womanhood (not to mention are very pink and littered with female emoticons). That was until I found Frendo, which is an endometriosis screening and tracking tool for undiagnosed and diagnosed sufferers that focusses on healthcare and symptoms, with no mention of gender. Through it I’ve been able to read articles written by endometriosis experts and connected with other patients who have helped me feel less alone on my diagnosis journey.
One day I hope to be able to walk into a doctor’s office and not have my identity, nor my symptoms second-guessed. Feeling free to explore your true self, without fear of judgement and persecution, is one of the most important ways a member of the LGBTQ+ community can feel human and accepted in society. But if our healthcare system fails to recognise and respect who we are at our core, what hope do we have for anything else?
Find out more information about Frendo here. You can visit Endometriosis UK for more information and advice about the NHS here.
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Katie O'Malley is the Site Director on ELLE UK. On a daily basis you’ll find Katie managing all digital workflow, editing site, video and newsletter content, liaising with commercial and sales teams on new partnerships and deals (eg Nike, Tiffany & Co., Cartier etc), implementing new digital strategies and compiling in-depth data traffic, SEO and ecomm reports. In addition to appearing on the radio and on TV, as well as interviewing everyone from Oprah Winfrey to Rishi Sunak PM, Katie enjoys writing about lifestyle, culture, wellness, fitness, fashion, and more.
