Jade first realised something wasn’t quite right after coming off the contraceptive pill when they were 19. “I was walking home from work and felt my ovary ‘pop’. I immediately told my mum, who had been in her 30s when she had a full hysterectomy, and she said I needed to sort it out straight away. She made sure I pushed for a referral.”

Getting diagnosed while Jade was just entering adulthood was tricky to navigate. “I was trying to figure out who I was and what I could deal with as a 19-year-old, trying to figure out how to deal with a chronic illness and take it seriously while enjoying life in my early 20s.”  

Surrounding themself with people who could understand and accept Jade’s journey with chronic pain has been something they have learnt to embrace along the way. But as Jade identifies as takatāpui — or non-binary — they explain finding a space within the endometriosis support world has taken time, and often they’ve needed to forge and foster those communities themself. 

“A lot of stuff to do with endometriosis is very pink and feminine, and I understand that people need that messaging, but many people I know are trans or non-binary and have endometriosis.” While Jade says every endometriosis journey is unique, being trans or non-binary adds another element of complexity. “The whole situation is different. There are different challenges. There are layers to it. And there’s often transphobia. It’s hard to feel comfortable.”

Now stage four, Jade says their endometriosis experience has been one of constant learning. “I had a third surgery last year, and that’s when I found out about the pelvic floor. But it took nine years for a doctor to tell me the pelvic floor is related to endometriosis. I felt like I knew all there is to know, but I learn something new each day.” 

Although navigating each new chapter of their endometriosis journey has its challenges, Jade is upbeat and positive. They hope their looking-on-the-bright-side approach might encourage others suffering from chronic pain conditions to seek help and talk about what they are going through. “I don’t want my story to come across like it’s been so traumatic and for other people to be afraid. You can talk to me, you can DM me. People need that positive reinforcement. We need to laugh. Everyone who has endo, we all have those hard days but sometimes you need to just spin a yarn with others who understand what you’re going through.”