ENDO-MYSTERIOUS-IS: Woman's mission to demystify disease
A CULTURAL tendency to shy away from conversations about menstruation, bleeding and period pain may be the reason Warwick's Madison Burton suffered years of debilitating pain before finally being diagnosed with endometriosis last year.
She saw every doctor and naturopath she could, was told she was going through menopause at the age of 20, had put on more than 15kg without explanation and was having to take time off work.
"I had no idea what was going wrong and I didn't know what endometriosis was because no one talks about it," she said.
When she finally saw a gynaecologist, she was rushed into surgery where doctors found parts of her uterus lining growing in five different places outside her uterus.
Since having the endometriosis removed from her pelvic organs with lasers, Miss Burton feels she has regained her body, her confidence and her life.
But raising awareness about the illness is an uphill battle she will be fighting for the rest of her life.
"There's just so little information about it out there," she said.
"I 100 per cent think that because of what it is and what it surrounds, people just don't want to hear it.
"Even with my dad and boyfriend - you really have to feed them as much information as you can so it's easier for them to understand."
She said connecting with two other women who also had the illness was like finding long lost sisters, but others just didn't get it.
Miss Burton said her former workplace was unsympathetic towards her illness, treating it as "bad period pain" that didn't warrant time off work.
"People don't realise how serious and debilitating endometriosis can be."
"Gynaecologists say it is like cancer but without the death ... you experience similar pain and symptoms, but you don't die from it."
Endometriosis can be extremely difficult to treat, but Miss Burton hopes that more research and education around the illness will help others discover the disease without having to go through the painful process she did.
"The fact that I had to see 15 doctors over three years to figure out what it was ... sometimes even doctors don't think it is something they need to look for."
Endometriosis can only be diagnosed by having invasive surgery, which is why it flies under the radar for many women.
But Miss Burton is trying to put an end to that through her efforts to raise awareness through social networking and online media.
She is now living in Brisbane, raising awareness about the illness and has just started a new job at South Bank.