But, far from offering her hope or treatment for the debilitating pain that got worse during her period, the doctor told her she'd just have to manage her symptoms until she got pregnant.

"By that point I was exhausted trying to find answers and relief, and it actually wasn't until I saw my current specialist, who really believed me and validated my pain, that I was diagnosed," she said.

"He decided to schedule me for laparoscopic excision surgery, where I was diagnosed with stage one endometriosis in 2022."

What is endometriosis?

Mr Vourliotis' eventual diagnosis was a relief for the Wollongong resident, now 25-years-old, but - knowing there is little understanding of its cause of treatment - was also a devastating realisation that her pain would continue to affect her throughout her life.

"I had a sense of anger for how this disease affected me, but also grief for how it will continue to affect me and the life that I wanted for myself," Ms Vourliotis said.

"I felt really isolated in my journey because lots of times I would walk out of specialist appointments alone and without answers, I would miss out on social activities because of my pain and I there was just a general lack of understanding from others."

The young Wollongong woman was one of 10 people from around Australia selected to attend a first of its kind retreat for young people with endometriosis held at Kiama last weekend.

Run by the charity, Endo Articles which was set up by another young woman - Milli Weaver - to help connect and support people who have the condition, the event went for four days, with participants able to take part in photoshoots and makeovers to help them reconnect to their body.

There was also a chef preparing dietitian-led meals, a storytelling workshop to help people explore their own narratives and plenty of time to share their experiences.

"There is such limited support available for young people battling endometriosis, that's why I started Endo Articles, to bridge the gap and ensure a future where no one goes through endometriosis alone," Ms Weaver said.

"When I started this charity last year, I thought hosting a retreat would only be a pipe dream. I am so excited to see this initiative come to life and offer a space where young people can access information that can often be so overwhelming to navigate."

For Ms Vourliotis, the retreat was a chance to meet other people who understood her pain and reconnect with her own body.

"I found an intimate community of women who just get it and I know some of the girls I met, no matter how far away we all live, will be long-lasting friends," she sai.

"I also left with a newfound confidence in myself. The mini makeover and photoshoot and seeing the photos afterwards allowed me to see myself from a different perspective in realising I am beautiful and that my endometriosis yes, is a part of who I am, but it doesn't define me."

She said she was deeply moved by hearing others' stories which echoed her own/

"I went in knowing that I'd be hearing about other people's journeys and stories, and I understand that everyone's experience of endometriosis is quite different," she said.

"But hearing the experiences they've had with the healthcare system and how they've had to fight to get their diagnosis didn't come as a shock but I was surprised how emotional it was for me to hear that."

According to Ms Weaver is it often treated as a "period disease", which stops people from talking about it, and people often wait between six to eight years before getting a diagnosis.

Through her charity, she hopes to push for change so that endometriosis care is patient-led, and patients are listened to by their doctors early on.

"When we stand up and talk about how we're treated and what needs to be done better, we're not listened to, so amplifying patient voices and patient experiences could definitely be done a lot better," she said.

"It's also a chronic disease, but unfortunately, through a laparoscopy, you're kind of sent out the door of the hospital and told we'll see you when it grows back, you'll be fine for now.

"That's just not the truth for so many of those that live with this disease, who need all sorts of therapy and alternative therapies to help manage their symptoms.

"There are other chronic illnesses like diabetes, for example, which has the same prevalence as endometriosis where often there's a social worker that will come in and explain to the patient how to manage the disease, what life looks like and give them some reassurance on next steps.

"I don't know why that's not getting done to endometriosis, and I think we'd see really significant improvements in quality of life and people's belief in themselves to manage the disease if something similar was implemented."