Is Hay was 14 years old when they first started experiencing heavy and painful periods.
Is said doctors "knew pretty early on" it was endometriosis.
"It was just immediate agony," Is said.
"I was regularly taking long periods off school, and one time, even had a 60-day period. I could barely walk for most of that time."
Added on top of these difficulties, was the gender dysphoria of experiencing a period and a disease typically thought of as a "women's issue" when they don't identify as female.
Endometriosis, an often painful condition in which cells similar to those that line the uterus grow in other parts of the body, affects roughly 1 in 9 women and those assigned female at birth in Australia.
Is, who is transgender, disabled, and autistic, said having a period was already a difficult experience.
"As a trans person, having a period in general is incredibly distressing," they said.
"And when you have a period as evil as mine, it can be unliveable at some points.
"When I am leading up to a period, having a period, or after a period, I'm pretty much not a person for that time."
Is said many of their requests for treatment were not just relating to pain, but the "intensive dysphoria" the symptoms brought.
"I've been on a pretty constant journey of trying to find the right fit of different things," they said.
'Invasive' treatment disregards sensitivities
Currently, many of the diagnosis tools for endometriosis are uncomfortable for people with sensitivities about their anatomy.
One of the techniques used to identify the condition is a transvaginal ultrasound, an imaging procedure where a probe is inserted into the vagina and moved with varying pressure at different angles to obtain images.
For Is, this imaging tool was far too invasive.
"I did it once but it's not something that I can do again — at least not being conscious," they said.
Is had previously sought a laparoscopy, keyhole surgery which is considered the gold standard to diagnose endometriosis, but had been told they were too young at the time.
After the trauma they felt during the ultrasound, they said they would no longer be comfortable having the procedure which involves interaction with their anatomy.
"I have a lot of discomfort about that part of my body and when suggestions were brought up, I said no to them because it wasn't going to be safe for me," they said.
Forced to 'justify transness' with multiple doctors
Going through the public health system added another layer to accessing care.
Being passed from gynaecologist to gynaecologist meant Is was forced to explain their identity to everyone.
"Every single appointment I would have to again explain that I'm trans and it's not just management of physical symptoms," they said.
"A lot of the exhaustion with getting support and treatment has been having to explain and justify my transness to people who just want to get onto the next patient."
Charlotte Reddington, a gynaecologist who sees transgender and gender diverse patients, says endometriosis care needs to be more inclusive.
"It can be very challenging for somebody who is transgender or gender diverse accessing care through a gynaecologist, which has traditionally been seen as something for female people to be accessing," Dr Reddington said.
"It brings up a lot of their own identity issues discussing anatomy, and if they've had a previous poor experience in a health care setting, they might not feel included."
Dr Reddington said diagnosis and treatment of endometriosis needed to be "individualised for all patients" and boundaries needed to be respected.
Less invasive diagnoses on the horizon
Dr Reddington is leading a non-invasive diagnosis project at The Royal Women's Hospital in Melbourne in an effort to make diagnosis more accessible.
The project, part of a series of endometriosis projects at the Women's, is focused on developing a non-invasive test or screening tool for patients to use prior to undergoing surgery for a formal diagnosis.
"We're aiming to find a calculator that uses patient's history, their symptoms and simple physical examination which would make diagnosing pelvic pain more accessible for anybody who has any difficulty accessing specialist care and internal ultrasound," Dr Reddington said.
"If we're successful in creating this test, it would be something that could be cheaply and safely performed in a primary setting."
The national clinical practice guidelines for diagnosing and managing endometriosis include non-binary and gender diverse people in target populations of the disease, however advocates are calling for more inclusion with the guidelines in practice.
The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) Gender Equity and Diversity Working Group member Marilla Druitt said groups were providing feedback to focus on more inclusive care.
"We have consumer groups who will be able to lend their voice to check over everything that we write to be involved in how it's going to be implemented," she said.
"This way we can cover all our bases and make sure everyone's looked after."
Beyond gynaecological healthcare
Thorne Harbour Health is a community-controlled health service in Victoria for LGBTIQ people aimed at providing safe and accessible options for specialised healthcare services.
Acting CEO Carolyn Gillespie said the group faces "many barriers" in accessing care for conditions such as endometriosis.
"When you have a history of accessing healthcare being exclusionary for people, you have to go above and beyond in order for people to feel included," Ms Gillespie said.
"We hear regularly from trans and gender diverse people about accessing healthcare and finding that traumatic or transphobic," she said.
"It's a real life issue that we see everyday."
For now, Is has given up on accessing treatment for their endometriosis and they continue to manage symptoms on their own.
"I think just in general with endo care there's a lot of dismissal of symptoms and impacts," Is said.
"And then when you say it's especially hard for me because I'm a trans person, that's extra dismissed.
"For me, I'm able to manage and just exist, but for future generations of trans people with endo, I think that's a space I totally see improving and I want to support them in that space."
