Lisa James was 11 years old when she got her first period.
"From the get-go, I suffered migraines with auras and bad period pain," the 37-year-old told SBS News.
By the time she was 13, her GP in her hometown of Bathurst, NSW, had put her on the contraceptive pill, which she continued to take until she was 22.
"It masked my symptoms for a while. But it didn't help the migraines, it actually made them worse," she said.
About six months after going off the pill, the Wollongong-based kindergarten teacher began experiencing severe pain again.
Endometriosis patient Lisa James in a hospital bed after her first laparoscopic surgery in 2017. Credit: Supplied
It took around 10 years and countless trips to the emergency department, different GPs, and specialists until she was finally diagnosed with endometriosis in 2017.
Endometriosis is a disease where tissue similar to the lining of the uterus is found outside the uterus, Senior Research Fellow in Reproductive Health at Western Sydney University Dr Mike Armour told SBS News.
He said it affects around one in nine women and people assigned female at birth and is most commonly diagnosed through laparoscopy.
"Its symptoms are really broad, but generally speaking, most people would experience pain during or throughout their cycle," CEO of Endometriosis Australia, Alexis Wolfe, told SBS News.
"Other symptoms also include things like pain during a bowel movement, pain during urination, maybe during intercourse, and also bloating, fatigue, the list goes on," she said.
The federal government announced on Friday that $58 million in funding will be included in this year's federal budget to help improve access to diagnosis, treatment and care for people who have endometriosis.
It will be added to the $22.5 million already invested in the National Action Plan for Endometriosis since it was launched in 2018.
Prime Minister Scott Morrison spoke of his wife, Jenny, who has endometriosis.
He said the funding will bring "welcome relief and support", for Australians with endometriosis.
"I have seen firsthand with Jen just how debilitating endometriosis can be for women, the mental and physical toll it takes," he said.
"Our plan will improve the quality of life for women living with endometriosis, with record support, building on our National Action Plan for Endometriosis, so women of all ages can get diagnosed and be supported."
What does the funding include?
Some $16.4 million of the funding will go towards establishing two new specialist endometriosis and pelvic pain clinics in each state and territory, as well as a nurse navigators pilot.
The development of the specialist clinics is "historical" and will make "a significant impact for endometriosis patients," Ms Wolfe said.
"The ability for these endometriosis patients to have that collaborative approach from multiple health professionals under one roof, under one care model, means that they don't need to retell their story 14 different times when they see different practitioners. It helps with cohesion of care."
Dr Mike Armour. Source: SBS News / Insight
"The devil is going to be in the details for some of this," he said.
"If you have people who are living in rural and remote areas, are they going to be able to access that service?"
Another part of the package Endometriosis Australia is "really excited about" is the investment in a Workplace Assistance Program, Ms Wolfe said.
She said many people with endometriosis lose their jobs or are passed over for promotions as a result of their illness, so the program will be "critical" to ensure they stay "gainfully employed" and are able to open a "safe and constructive dialogue" with their workplace about their needs.
"We know that there are many endo warriors that because of the lack of flexibility in their workplace, they've had to reduce their hours from full time to part-time," she said.
"The financial burden of this disease then increases, because not only is the treatment expensive, but you're unable to find employment that is understanding of your condition."
Ms James said she had to borrow money from her dad to be able to pay for her endometriosis surgery.
"It cost me $7,000. If I wasn't in a private health fund, it would have cost me a minimum of $12,000, which I wouldn't have been able to afford," she said.
Her weekly costs for treatments to manage her condition like her medication, yoga, acupuncture, and Chinese herbal remedies are also quite high.
Dr Armour said $5.1 million going towards the National Endometriosis Clinical and Scientific Trials Network and for early career researcher scholarships, is "amazing" to see as well.
Also included in the package is funding to review and update clinical practice guidelines for diagnosis and management; develop an Endometriosis Management Plan for patients in primary care; support access to Medicare-funded MRIs; and promote access to diagnosis and treatment options on the Medicare and Pharmaceutical Benefits Schemes.
What more needs to be done?
Dr Armour said while the funding announced by the government is "a great start", much more is needed to ensure people with endometriosis get the treatment and care they deserve.
"Our research has shown that the cost of illness burden on society for endometriosis, in Australia alone, is about $24 million a day," he said.
"So when you put it into context, $58 million is great, but it's basically, what, two days worth of the cost impact that we see for endo?"
Lisa James and a colleague wear yellow on day three of 'March into Yellow' for Endometriosis Awareness Month. Credit: Supplied
"We need to look at ensuring that surgery for endometriosis is remunerated fairly," he said.
Ms Wolfe said Endometriosis Australia would like to see increased investment in the future in all areas that the government's package covers.
"When we start seeing those significant improvements, it will be very hard, I think, for any government to disagree with the impact and the betterment of care that these endo warriors can and should receive into the future," she said.
Further investment is particularly needed in "communication, training, and collaboration with medical professionals across the entire health sector," Ms Wolfe said.
"So ensuring that all the way through from GPs to stenographers, to emergency departments, to specialists, that everybody is singing from the same song sheet, and that we have a really wide understanding of what this disease is.
"If we could get to the point where people understood endometriosis in the same way that they do diabetes, then we are doing a really good job."
Ms James, who's on her third round of IVF due to the damage endometriosis caused her reproductive organs, said she's "disappointed" her illness wasn't spotted years earlier.
But she's hopeful increased awareness and education will mean other people won't have to endure the years of pain and uncertainty that she did.
"The best thing that happened to me was my diagnosis because I don't feel like I'm just a hypochondriac or a sook," she said.
