Key Points
- Endometriosis affects an estimated one in nine Australian women and people assigned female at birth.
- Twenty new endometriosis and pelvic pain clinics are being rolled out across Australia.
- One woman, Angie, says having access to such clinics could have helped her own trajectory with the condition.
Melbourne woman Angie Mashford-Scott says she was 18 years old when she first noticed symptoms of endometriosis.
At the time, she didn't know what the condition was.
"I'd never heard about it before. So I didn't attribute any symptoms that I was having to that particular illness," she told SBS News.
Ms Mashford-Scott said she would often have pelvic pain, which she thought could be related to her diet. She later noticed she was experiencing headaches, anxiety, nausea and a "dip" in her immune system during her menstrual cycle.
"I remember mentioning [that] to a GP at the time. I remember him saying, 'that's not really possible because there's no connection between the immune system and the menstrual cycle. There's nothing that's been proven'," she said.
"As a young 20 year old, you accept that that observation I was making probably didn't have much validity, that it wasn't actually the case - even though it was something I was definitely experiencing."
Ms Mashford-Scott said her symptoms worsened in her late 20s, around the time she wanted to fall pregnant. For the first time, another GP mentioned to her that she might have endometriosis.
It wasn't until eight years later that she was referred to a specialist and underwent a laparoscopy - a type of surgical procedure used to inspect the abdominal and pelvic area that may be used to diagnose and treat various conditions, including endometriosis.
"I remember being in the waiting room ... thinking, ‘what if I don’t have it? What if I have just created a fuss? Maybe I have a low pain threshold, maybe it’s a mental health issue and I’m catastrophising my symptoms," she recalled.
After 18 years, an 'extremely validating' diagnosis
Eighteen years on from first noticing her symptoms, Ms Mashford-Scott said receiving a diagnosis made her feel "incredibly validated".
"The doctor came to me to explain what she had found... She said, 'well, we know why you've been having so much pain. You have a significant amount of deep infiltrating endometriosis all behind your uterus, which would be causing a lot of pain'," she said.
Endometriosis is a condition in which tissue that usually lines the uterus grows outside the uterus. Symptoms can vary widely, but usually include pelvic pain, irregular bleeding, bowel pain and possible infertility.
A 2019 Ernst & Young evaluation calculated the estimated annual cost to the economy to be $7.4 billion through reduced quality of life and reduced productivity in the workplace.
At least one in nine Australian women and people assigned female at birth are estimated to live with the condition.
Endometriosis affects an estimated one in nine Australian women and people assigned female at birth. Source: Getty / Charly Tribelleau/AFP
"Unfortunately, despite endometriosis being as common as diabetes, we have limited capacity to treat it or certainly cure it," she has
New endometriosis clinics opening across Australia
Earlier this week, the federal government said across all states and territories, in an Australian first.
The clinics were a feature of last year's election campaign, with both Labor and the Coalition pledging to open 16 of them.
The government has now increased that number to 20, operating in existing GP clinics in metropolitan and regional areas. They will each receive more than $700,000 in funding over four years to cover the hiring of specialised staff, equipment, and resources and training.
The government said the clinics will provide expert, multidisciplinary services and care for women with endometriosis and pelvic pain.
“These clinics are about providing women with an accessible front door to the care that they need," Assistant Minister for Health and Aged Care Ged Kearney said on Wednesday.
“The recognition of endometriosis and pelvic pain as serious conditions has been a long and hard-fought battle from fierce advocates in the sector and in our communities. I want to say to those people – thank you and we’re listening."
Ms Davenport, a former Victorian Liberal MP, said the clinics may lead to earlier diagnosis of the disease.
"These specialists clinics are really fundamental to ensuring that more girls, women and gender diverse people in Australia can access that early diagnosis - rather than going from doctor to doctor and emergency departments here and there,"
'Women are suffering and they're not being heard'
The executive director of Jean Hailes Women's Health, a non-profit providing women's health services, to reducing the stigma that still exists - and improving access to care across the country.
"It really does increase the focus on these issues that have been or ignored for way too long," Sarah White said.
"We hear from women all the time at Jean Hailes who talk about how their pain is dismissed. We also talked to women who don't realise that periods shouldn't be painful.
"Women are really suffering and they're not being heard. And some of that is because the medical workforce, particularly in primary care, just doesn't know where to start for diagnosis, and to help start providing the treatment the woman needs."
Ms Mashford-Scott said the clinics are a "positive step" in recognising the experience of people with pelvic pain or endometriosis is "significant enough that it requires specialist care".
"When I was in my early 20s just noticing these symptoms, if I could have been referred to one of these clinics, I think my trajectory would have been significantly altered and things would have been sped up," she said.
Ms Mashford-Scott's experience living with endometriosis continues to impact her life. In 2021, she developed a UTI (urinary tract infection) following a laparoscopy procedure, which turned into a serious kidney infection.
"I ended up in ICU... that was the height of my experience for my family," she said. "The recovery took six months to feel healthy again."
Ms Mashford-Scott is now using her lived experience to help others. With a background in psychology and education, she plans to launch an online counselling service for endometriosis sufferers later this year.
