First Ever National Report Finds 1 In 15 Young Women Have Endometriosis
One in 15 women aged 25 to 29 and one in nine women aged 40 to 44 have endometriosis, the first national report into the prevalence of the disease has found.
The report, released Thursday from the Australian Institute of Health and Welfare, shines a new light on this painful and historically under-recognised condition.
The commonly accepted statistic is that one in 10 Australian women will suffer endometriosis, but the Endometriosis in Australia: prevalence and hospitalisations report hints a trend in women being diagnosed earlier -- welcome news for sufferers of a disease that takes an average of seven years to diagnose.
Researchers from the University of Queensland looked specifically at two cohorts of women: those born in 1973-78, and those born in 1989-1995.
They found the younger group had a greater rate of diagnosis in their 20s, almost 1.7 times higher than those in the older age group.
"This increase may reflect increased awareness among the general public and health professionals, leading to increased diagnosis and/or reporting of diagnosis among women born more recently," the report said.
Endometriosis, a chronic condition where tissue similar usually found in the lining of the uterus grows in other parts of the body, is as little known as it is widespread.
Researchers don't know what causes endometriosis, treatments can be invasive at worst and ineffective at best, and there is no cure. Women suffering this disease are often forced to miss school or work due to the debilitating pain, and might undergo multiple surgeries and attempt a variety of treatments just to manage the condition.
"From my very first period, I was in so much pain, I missed a week of school," Melbourne woman Imogen Dunlevie, 25, who has been managing endometriosis since age 13, told 10 daily.
"In the days leading up to [my first period] it I was getting weird stomach pain. I told my mum, and she didn't think much of it -- she probably thought I was trying to get out of school. Then I got my period, and suddenly, there was just such excruciating pain."
It took Dunlevie several years and at least two doctors to get a diagnosis, and a decade before she found a treatment that made her pain manageable.
Her condition caused her to drop out of school (later completing her education over two years at TAFE), develop pelvic pain due to her muscles constantly being tight, and spend a significant amount of time, money, and mental energy on managing it.
But one of the hardest things she experienced was the loneliness.
"Having to manage pain all the time, but trying to be a person out in the world... I think that was one of the most tedious parts of it," she said. "When I was a teenager, I was scared of doing things that would make my pain worse, so I just didn't do stuff, and it was so isolating."
She also says she's experienced stigma from health professionals, with doctors believing she's either faking it, or seeking drugs, or both.
"The team of doctors I have at the moment are really good -- they know what to do, and they listen to me, and clearly believe what I'm saying," Dunlevie said.
"But if I ever have to see someone who is not my regular doctor, it always goes badly. They either don't understand endo, or they don't believe it could be as bad as I'm saying."
Dr. Erin Nesbitt-Hawes, who specialises in endometriosis, says part of the problem is the "normalisation" of women's pain.
"Historically, both within families and even within the medical profession, there has been an issue where women with pain associated with periods are normalised," Nesbitt-Hawes told 10 daily.
"And really, the difference for women with endometriosis is that this pain, which is really impacting on their quality of life and their ability to do normal activities, it's really up that severe end of the spectrum. That's not normal, and women need to get that checked out."
Awareness of endometriosis is growing, which Nesbitt-Hawes puts down in part to high-profile women talking about their experiences.
"It's really nice to see that we're moving towards a space where it will be much more common and easily able to be talked about, and workplaces will be more understanding of this condition," she said.
However, advocacy group Endometriosis Australia says this awareness is yet to translate into the "significant" funding needed to find a cure.
"We don't know what causes it, what prevents it, and we don't know how to cure it," Endometriosis Australia director Donna Ciccia told 10 daily.
A national action plan with $2.7 million pledged for research was launched by Health Minister Greg Hunt last year, while an additional $10 million for "research and awareness" was announced this year.
"It's been amazing, because before that, we had nothing," Ciccia said.
"We're really grateful ... but until we get some serious and significant investment, we're not going to find a cure."
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