05/11/2015 9:56 AM AEDT | Updated 15/07/2016 12:50 PM AEST

What I Live With: The Silent Suffering Of One In 10 Australian Women With Endometriosis

Video by Emily Verdouw

Mel Greig knew something was very wrong when she went off the Pill at 30 years old.

The paralysing pain in her abdomen, the bloating and utter exhaustion she’d become an expert in since the age of 17 had come back, tenfold.

But the pain was nothing compared to what came next -- when she was told at 30 years old, she would never be able to conceive naturally. Unbeknown to her, in the seven years she’d been taking the Pill, pain and symptom free, her endometriosis had completely taken over her bowel and uterus. Within two years and after two major surgeries, she would need a hysterectomy.

“I’d been taking the Pill since I was 23, thinking my endometriosis had gone,” Greig told The Huffington Post Australia.

“But all it was doing was masking the pain -- for seven years, I had no symptoms but the endometriosis was growing inside of me,” she said.

Mel says doing IVF with endometriosis is incredibily painful.

One in 10 women suffer from endometriosis in Australia -- a hormone and immune system disease associated with severe period pain where cells that are similar to the lining of the uterus grows outside the uterus, causing cysts and lesions in the ovaries, fallopian tubes, abdominal lining, bowel or bladder.

The symptoms include chronic period pain, inflammation, painful bowel movements during menstruation, pain during sex and infertility however, a lack of research and funding means very little is known about the disease -- and there is no definitive cure.

“Endometriosis is absolutely debilitating to a woman’s life,” said Professor Michael Cooper, Head of Gynaecology at Royal Prince Alfred hospital.

“It’s not as simple as saying you’ve got these cells growing in the wrong place -- there’s a whole flow on of things that we still don’t understand,” he said.

“Endo” -- as it’s nicknamed -- is more common than asthma and while it is estimated 176 million women suffer from endometriosis worldwide, including 600, 000 in Australia -- experts say these numbers aren’t indicative due to many women going undiagnosed for years.

“On average, it takes eight to 10 years for a woman to be properly diagnosed,” Cooper said.

In an Australian government report, endometriosis is reported to cost Australian society $7.7 billion annually with two thirds of these costs attributed to loss in productivity with the remainder, approximately $2.5 billion being direct healthcare costs.

Dr Erin Nesbitt-Hawes, obstetrician and associate lecturer at the University of NSW is quick to point out that not only is there a cost to the economy, but there is a significant cost to a woman’s family, friends and her own mental health.

“It is not unusual for women who are are having significant pain to take one or two days off work a month so there is a productivity cost -- but more importantly, suffering a chronic pain condition can be really wearing mentally over time,” she said.

For Sarah Maree Cameron, having to pull over while driving due to the crippling pain her endometriosis causes is not unusual.

"I have a lot of pain in my pelvis and the bloating is insane," Cameron said.

It took three years for Sarah Maree to be properly diagnosed.

“A lot of women go years and years with this terrible period pain and think it’s normal,” said Nesbitt-Hawes.

The only way to accurately diagnose the disease is through a laparoscopy -- keyhole surgery -- where the endometriosis is then treated and removed using electrical heat to excise the lesions.

Other treatment options include hormonal treatments like the contraceptive pill or Mirena -- which are meant to ease the symptoms and while both hormonal and surgical treatments offer a temporary fix -- there isn’t a treatment available that can completely reverse it.

For Mel, taking her doctor’s advice of choosing the Pill over surgery to “fix” her endometriosis is something she deeply regrets.

“If only I’d had the laparoscopy back when I was 23, instead of choosing the Pill, I might have known more about what I was dealing with.”

As well as the disease going undiagnosed, there are many problems with misdiagnosis.

Often, an ultrasound is recommended however while it will bring up cysts, the majority of ultrasound scans for women with endometriosis will appear normal.

Cooper said while it is a long way off, a better marker is needed to test and diagnose the disease without being invasive. However, he also says there are increasing problems with perception around the treatment of endometriosis and ill-informed surgeons.

“It is widely regarded that from a surgical perspective, endometriosis is harder to treat than cancer.”

‘This idea that you can only buzz the top of it and it will grow back means women are having multiple surgeries -- which isn’t a good thing,” Cooper said.

“It should be rare for people to have multiple lapracocosies over a short period of time, I see people who have had several lapracocosies over a number of years when really they should be looking at one or maybe two over extended periods.”

In short -- surgery alone cannot control endometriosis and it cannot be prevented.

“There is a genetic component, and there’s almost certainly an environmental issue -- whether it’s some pollutant or something like that -- we don’t know,” Cooper said.

“For some reason there seems to be an inverse relationship with weight as well -- you would actually expect people with endometriosis to be somewhat overweight but in fact it’s the reverse -- most women tend to be of normal weight or on the thin side.”

While each woman’s endo story is different, there are many common threads -- debilitating pain, a long-winded and complicated diagnosis and finally, a big fat question mark over whether the disease will return.

For Sheylea Forrest, 27, it took a trip to the Emergency Room two years’ ago after blacking out from pain in her abdomen to be referred to a gynaecologist.

With no family history of the disease, Forrest undertook the laparoscopy straight away and was diagnosed with endometriosis.

“I always had really heavy periods, but I didn’t think anything of it,” said Forrest.

“And whether I have a naturally high pain threshold or not -- I’m not sure -- but there were probably only 10 instances where the pain was unbearable -- three of those times I passed out,” Forrest said.

Experts agree creating increased awareness is really important so women talk about what their pain is like and whether their pain is normal.

And the holy grail?

“Some form of treatment that would be able to suppress or reverse the disease but also not be contraceptive at the same time -- but we’re a long way off that,” Cooper said.