When Shellharbour woman Monique Reed ended up in the emergency department with excruciating pain due to her endometriosis, she was told by one well-meaning doctor during one visit "oh yes, I've had period pain too".
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Diagnosed in 2018 after more than a decade of painful periods, Ms Reed has encountered plenty of misunderstanding about her serious and debilitating disease.
"Going through all the doctors when I was younger, you just get told that you're making it up," she said.
"When I finally had the surgery [to get it diagnosed] and I woke up and they said I had it, I just cried. I said 'I told you that there was something wrong'."
Endometriosis means the lining of the uterus grows in other areas of the body, and Ms Reed's "Stage 4" disease means her stomach area is riddled with the tissue.
"My left ovary also gets stuck on the pelvic wall, because the endometriosis is so intense on the left side, so they essentially have to unstick that, and [in one surgery] they also removed a baseball sized cyst on my left ovary as well," she said.
She has had three 'horrific' laparoscopy surgeries, where the tissue has been cut or burned off, and - working with Wollongong gynaecologist Dr Jodi Croft, now manages her condition with a combination of pain medication and natural therapies, including hormonal acupuncture, yoga and pelvic floor exercises.
"There is a lot that comes with having endo - it is a chronic illness and for me there is constant pain," she said.
"There's constant bloating, looking six months pregnant, stomach pain, fatigue, vomiting, pelvic pain, nausea, depression and anxiety, cramps, headaches. I work as a nurse, but sometimes even to get up for my day is a struggle - and working 10 hours shifts can be extremely difficult."
Endometriosis can also affect fertility, which plays on Ms Reed's mind as she finishes university and starts her career.
With the disease affecting more than one in 10 Australian girls and women but still taking an average or 6.5 years to diagnose, Dr Croft is hoping to help improve management and treatment in the Illawarra.
Last week, around 70 GPs and specialists gathered at an endometriosis conference led by Dr Croft's new women's health practice Amelie Private.
"We want to share with our colleagues our first-hand experiences of this silent but common condition that is debilitating the lives of so many women and how we use a collaborative approach to manage our patients every day," she said.
"GPs know a lot, but we wanted to empower them to stand up for their patients and realise that there are other avenues - not just a gynaecologist - that they can refer to."
With access to gynaecologists who can perform the necessary surgeries extremely limited across the Illawarra and Shoalhaven health district, Dr Croft said it was vital to share information.
"Treating endometriosis should always be multidisciplinary with medical treatments, physiotherapy, dietetics, psychology and surgery, as a last resort," she said.
"We're hoping by showing our experiences with the disease, and how our patients have been managed, we can help more people."
Ms Reed said she would advise anyone experiencing endometriosis to keep pushing to get their disease diagnosed, and said she was hopeful that more awareness of the condition would mean other girls and women got treatment sooner.