Jessica Panetta was 15 when her period pains became unbearable. Nearly two decades later she is still seeking relief from endometriosis as doctors and the Federal Government rush to address a disease they admit was long considered "just a woman's lot".

There are two things Jessica has with her at all times.

The first is a hot water bottle that eases, just a little, the constant pain that courses through her body.

The other is a notepad, in which she records every pill she takes to avoid an accidental overdose in the fog of medically-induced pain relief.

At 32, Jessica's endometriosis — a disease where endometrial tissue grows outside the uterus — dominates her life.

The symptoms of "endo" typically start with debilitating period pain and heavy or constant periods, but they can extend to bowel issues, bloating, nausea and even infertility.

It's estimated 1 in 10 Australian women have the disease, but the severity varies enormously.

Jessica is at the extreme end.

Jessica Panetta keeps notes of the medication she takes. ( ABC News: Patrick Wood )

"I have chronic pain every single day," she says.

"The pain can be so intense that basically I can't move. I can't do anything on my own and I'm laying in bed with about three hot water bottles — one across my stomach, one on my chest, and one sitting on my back.

Endometriosis symptoms: Unusually intense period pain

Unusually intense period pain Pain on or around ovulation

Pain on or around ovulation Bowel or bladder problems

Bowel or bladder problems Heavy or irregular bleeding

Heavy or irregular bleeding Fatigue Source: Endometriosis Australia

"On a bad day I am always contemplating whether I should go to emergency or not."

Jessica's endless effort to ease the condition has stretched the medical professional beyond its limits.

She has tried almost every variety of medication, including one to chemically induce menopause.

When they ran their course, it was time for surgery.

Jessica has had eight surgeries in the past 10 years. Now when she goes into the operating room she instructs the surgeons to reuse the old entry points to minimise the number of scars that are already dotted across her abdomen like bullet holes.

Jessica first had surgery in 2008 and her latest two rounds were just last year. ( Supplied: Jessica Panetta )

She has had endo spots burnt off her diaphragm, abdomen wall, flank, Pouch of Douglas, bladder, bowels and liver.

"I've tried a holistic approach, I went to see naturopaths, osteopaths, homoeopaths, acupuncture, traditional Chinese medicine and countless diets," Jessica says.

Five years ago, with no cure in sight, Jessica was deemed to have total permanent disability and has not been able to work since.

"For myself, I don't know if I am optimistic about my future," she surmises.

Why women have been left to languish

For years the disease was either little understood or, perhaps, little appreciated.

Martin Healey is the head of the gynaecology unit at the Royal Women's Hospital in Melbourne.

He treats women with endo and says there are two reasons they have suffered so much in the past.

The first is it's incredibly hard to diagnose and can usually only be done by surgery, like a laparoscopy.

"All surgery carries risk, [which] means many women may have their condition untreated for many years and face years of delay before diagnosis," Associate Professor Healey says.

"This is the case especially in young women and teenagers."

This scan shows unwanted webbing-like tissue fusing between Jessica's organs. ( Supplied: Jessica Panetta )

The second reason paints the medical profession in a far bleaker light.

"The other, which hopefully is a fading situation, is doctors just saying 'look, period pain is normal for women, this is your lot. Suck it up and stop whingeing'.

"I'm being a little bit harsh in my terminology, but it was that kind of approach of just saying 'this is normal, what are you complaining about, just put your nose down and get on with work'.

"That is changing, but it is where we've come from."

This can lead to anxiety and depression for the women who have endometriosis, Associate Professor Healey adds, because they're living with constant pain and no-one believes them.

'I thought it was like this for everyone'

Melanie Humphrey knows this better than most people.

From the time she first got her period at 12 they felt incredibly painful.

As high school progressed she found she was increasingly taking sick days, unable to get out of bed because the period pains were so bad.

Melanie thought maybe it was normal. After all, some of her friends complained about pain, although it never seemed at the same level.

Melanie says she wishes someone had told her about endometriosis when she was younger. ( ABC News: Patrick Wood )

"I would tell the doctor about what happens and how bad it has been and they'd go 'oh that's normal'," she says.

"No-one ever said maybe it's something a bit more severe."

Things continued like this for years, the pain becoming like an unwelcome shadow that followed Melanie everywhere.

But at 21 things escalated.

"I started getting my period constantly. Like, it did not stop," she says.

It took three months to get a specialist appointment, during which time her iron levels dropped and she felt increasingly sick.

Scans suggested she had endometriosis, but she won't know for sure until she can go in for surgery to confirm the diagnosis.

Her local hospital said it would take six months before she could get in. She tried another one, a bit further away, and the answer was 12 months.

Melanie is now waiting it out and says the pain is constant and getting worse.

"On a good day it's just there but it doesn't stop me doing things. On a bad day I wake up and think, 'oh dear'," she says.

"I force myself to try to get up and try to take painkillers and do some exercises that might relieve the tension in my back. Sometimes it works, sometimes it doesn't.

"When it doesn't I just take some painkillers and try to go back to sleep and sleep through the pain."

Melanie is studying now but fears the day she will have to tell a prospective employer about her condition, because there will be times when she simply won't be able work.

And then there's an even greater anxiety that has started to prey on her mind.

"I am worried about fertility," she says.

"Will I be able to conceive a baby? I don't know how bad my endometriosis is.

"I don't want to find out that I waited too long and now I can't have kids."

Sorry, this video has expired 'I have extreme concerns about having kids,' Jessica says

Jessica shares similar fears, including how she would cope even if she had a child.

"I have extreme concerns," she says.

"If I can't manage my pain on a daily basis and even look after myself, how can I do that with a helpless baby?"

Women with endo not alone any longer

Jessica has become a fierce campaigner who now devotes her time to helping her "endo sisters" who are also battling the disease.

Like many others in her position she has become a self-styled endo specialist, and the Facebook group she created — Melbourne Endometriosis Sisters — has nearly 800 members who swap stories and rely on each other for moral support.

While Jessica is anxious about her own future, she clings to a belief that things must get better for others.

Jessica spends hours on her Facebook support group each week, providing advice and moral support to hundreds of women. ( ABC News: Patrick Wood )

"I pray to God that one day they will find a cure or at least a better treatment for endometriosis," she says.

Jessica may have found her champions in an unlikely and largely unknown duo from opposing sides of politics in Canberra.

Nicolle Flint is a Liberal from South Australia and Gai Brodtmann is a Labor MP from the ACT.

When they discovered last year they were both fighting the endo cause they teamed up to establish the Parliamentary Friends of Endometriosis Awareness group.

By December, Federal Health Minister Greg Hunt had issued a formal national apology for not helping women with endo sooner and announced a research grant of $160,000 for the National Health and Medical Research Council.

"We are determined to do more to support endometriosis sufferers around Australia," he said at the time.

By February this year he had convened a roundtable discussion with key players, and a national action plan to tackle endometriosis — complete with $2.5 million in research funding — is due in July.

For Peter Rogers, who attended the recent talks and is the research director at the Royal Women's Hospital, the speed of political action has been surprisingly welcome.

Now is the time for research

Professor Rogers admits he faces an uphill battle when it comes to endometriosis.

He variously describes the disease as "ridiculously complicated", "very complex" and "extremely underfunded" and says there won't be a "silver bullet" for it, just as there isn't for cancer.

He says doctors have very little understanding of the biological causes or how best to treat the disease that, by his calculation, costs Australia $12 billion every year.

Peter Rogers is looking at genetic drivers behind endometriosis, and is making some interesting findings. ( ABC News: Patrick Wood )

"What needs doing? Just about everything," he says.

"Every time you open a door you enter a room with three unopened doors.

"It is an area of research that is extremely underfunded when considering the cost to society."

Still, he's up for the challenge and is currently leading Australia's largest research project on the disease.

He has recruited more than 700 women with confirmed endometriosis so far and is adding to that every week.

He is looking at genetic drivers for the disease that might not offer a "cure" per se, but could lead to treatments that either stop it before it begins or eases the pain for those who have it.

"So if your mother has got it or your sister's got it, your risk can be anything from two to seven-fold higher," he says.

"So that means it's transmitted through the genes.

"We're using a high-tech approach to sequence the genomes of women with endometriosis."

A purple plastic box contains a range of medication that helps Jessica manage her pain each day. ( ABC News: Patrick Wood )

His hope is to also develop better diagnosis tools so women don't have to go through surgery.

Such is the complex nature of the disease that of the women who undergo surgery at the Royal Women's Hospital to confirm they have endometriosis, only about 60-70 per cent actually do.

The other third are left to pursue a diagnosis for symptoms that sound like endometriosis, but actually aren't.

So there is a way to go. But Professor Rogers does see a positive change in the winds.

The profile of the disease has been raised dramatically, for instance, and scans to detect it are improving.

And while pharmaceutical companies have traditionally shied away from the field, one company has begun to look into it.

"Sometimes these things pop out and sometimes there isn't a simple answer," Professor Rogers says.

"But I guess what you do know is if you don't look you'll never find anything, and that's where endometriosis was for a very long time."