'I put on a fake smile and try to do my best'
ASK any woman with endometriosis, and you'll likely find that 'unsolicited advice' 'is familiar territory.
"Just get pregnant and have a baby."
"Have you tried eating organic?"
"There's a medication to cure that."
"You're not trying hard enough.
For Rhea Tansley, 30, from Brisbane, it's a daily part of life - but even she was left shocked by a recent comment from a health store worker.
"I'd gone into a well-known health store with the hopes of finding something that would settle the constant pain I feel," she shared.
"I'd done my research, and it was a product that was recommended for endometriosis, but instead of helping me, the 'health professional' said I just needed to eat organically and take more vitamins."
Although frustrated, Rhea asked the employee if she herself suffered from the debilitating disease, to which the woman replied: 'No, because I only eat organic and exercise regularly.'
"Then she looked me up and down, and said, 'obviously you're not trying hard enough to cure your endometriosis," Rhea recounts.
"I'd been trying to stay calm, but I just lost it with that comment.
"Endo isn't something you just 'catch' from a tin of spaghetti, and then cure with some vitamins. It's a very real illness, and for most of us, we suffer every day in silence for fear of being judged or dismissed by people exactly like this woman."
This week, Emma Watkins, who is better known as the Yellow Wiggle, announced she will be taking time out from her national tour to have surgery for the painful and chronic condition.
Watkins, who is currently on tour in Brisbane with the children's entertainment group, said the diagnosis was "a really big shock".
Affecting 1 in 10 females, endometriosis is a disorder in which tissue similar to that in the lining of the uterus, grows outside of the layer. Embedding itself in areas such as the vagina, cervix, bowel, bladder or pelvis, it often then develops into painful cysts - commonly resulting in extreme abdominal pain, infertility, nausea, and irritable bowel symptoms.
There is no cure for endometriosis, and even with surgery, the chance of the disease recurring within five years can be as high as 40 per cent (Cleveland Clinic).
For women such as Rhea, the invisible illness is a lifetime sentence that affects both her physical and mental health.
"I've lost count of the amount of times people or doctors have said things like, 'you don't look sick,' or 'every woman gets period pain, just take a Panadol," she shares.
"But when I am in pain it's not something Panadol can fix. Even with heavy pain killers, all I can do is curl up in a ball and cover myself in heat packs."
"Every day is a struggle, but I put on a fake smile and try to do my best."
It's a frustration that Northern NSW mother, *Kristin, has also experienced.
"So many people tell you that Endo can be cured by a vitamin or dietary change, and while healthy eating has definitely helped me balance my hormones, it's never going to be a cure," she says.
"The most common piece of advice I've had over the last two years, even from doctors, is: 'It's a good thing you're having a baby! Most women find their endometriosis disappears after giving birth'.
"I can tell you, it certainly hasn't."
The 31-year-old, who was diagnosed with endometriosis in early adulthood, and also suffers from Polycystic Ovarian Syndrome and Chronic Fatigue, spent seven years searching for answers from doctors. Her official diagnosis came only after Kirstin insisted on being tested for the disease, following suggestions from her chiropractor.
However, even with a proper diagnosis, Kristin says that women such as herself struggle to find adequate support, and are often prescribed multiple prescription drugs to counteract side effects of Endometriosis medications.
"Doctors pretty much just put you on hormonal contraceptives to manage [the illness], but for me and many others, it only gives us a whole new list of symptoms to deal with - such as increased depression and migraines. I had one doctor who wanted me to take the pill, and then migraine and antidepressants to counteract the side effects.
"They think because we don't return that they've solved the problem, but most of us don't return because there is nothing they can do, and we feel like we're wasting their time."
In the meantime, women such as Kristin are left to desperately await the Government's legalisation of medicinal cannabis - something she says was of great help to her health while living in Canada.
She is just one of many who have been left in the position of either breaking the law, or taking legal medications that pose greater risks to her health.
"The most effective and safest pain-reliever I can take, is medicinal cannabis, but with it still not being legal I have to either find ways to source it myself, or take dangerous prescriptions that make me feel worse.
"In the past I've tried things like Percocets, but I really don't want to take them as they can lead to opioid addiction. The first time I tried them they completely knocked me out, so I threw them away immediately," she says.
"Right now I take Amitriptyline, but I fear being on it long term as it increases chances of dementia and heart disease."
Kristin argues Endometriosis needs to be treated like any other disability, and provide care and pain management rather than forcing these women to try to keep up with work, family tasks, and everyday life, when they are already so overwhelmed - physically and mentally.
Endometriosis Australia Director and Co-Founder, Donna Ciccia, has listened to hundreds of women share their stories and says there is not enough understanding of how the disease impacts their lives.
"Not being able to participate in your work and study, not being able to have sex, or even defecate or urinate due to pain ... that loss of quality of life can create a sense of despair, and if your practitioner doesn't understand [your condition], you can feel lost," she explains.
A sufferer of endometriosis herself, Donna uses her personal experience to give hope to others who are struggling, and says that while the disease remains largely misunderstood, she is excited to see a growing movement of women becoming more empowered to educate themselves and their daughters, in order to live their lives to the best of their abilities.
"Living with chronic pain, not being heard, having people telling you you're a hypochondriac ... it's wearing," she says. "So we [Endometriosis Australia] try to give women positive stories [of other women living with Endometriosis], so they can 'know their enemy'.
"Because if you know what Endo is, you can make better choices for your health."
According to Endometriosis Australia, a woman will spend an average of 7-10 years in and out of medical appointments before she is officially diagnosed with Endometriosis, and will forfeit, more than $12,000 in lost work productivity and direct health care costs during her lifetime.