If you or a loved one suffers from endometriosis, you’ll know how hard it is to get someone to take the pain seriously. Women who live with the disease have said that all too often their pain is dismissed or downplayed.

There isn’t a coordinated national approach to the disease, either - meaning where you live can affect your care and the way doctors treat you.

But the Federal Government is trying to change that. It wants to set up a national action plan to tackle the disease - and it wants to hear from you.

“Diagnosis currently takes seven to ten years on average, largely due to a lack of awareness and understanding of the condition among primary healthcare professionals,” Federal Health Minister Greg Hunt said in a statement.

Minister Hunt has set up a public consultation process which means anyone can have their say on how they think this disease should be treated.

“I am determined to do more to support endometriosis sufferers around Australia and I encourage people to have their say and make sure we have the best possible National Endometriosis Action Plan going forward,” he said.

You can have your say on what should be in the endometriosis action plan here.

Endometriosis is when the endometrium cells that line the uterus and shed every month (forming a woman’s period) are found in other parts of the body. Those cells can be found in the ovaries, bladder, bowel and around the spine, to name just a few places.

It can cause a lot of pain and fatigue, and in severe cases the scarring from the disease can lead to infertility.

Syl Freedman from EndoActive told Hack the disease is super common.

Endo is hugely prevalent. One in ten - possibly one in eight - women and girls have endo… It’s just as prevalent as asthma and diabetes.

The Federal Government’s action plan aims to tackle a lack of awareness, treatment and care of patients, and research into the illness.

Syl welcomed the plan, calling it “wonderful and really encouraging”.

“It’s brilliant that the Government is giving the public the opportunity to be involved… Patients are finally being heard,” she said.

But she wants to make sure that the plan has momentum behind it.

“I really hope there’ll be adequate funding towards making sure the plan takes place, not just a million here and a million there,” Syl said.

She said the ultimate goal of the plan is the eradication and prevention of endo.

Earlier this year, the Government announced it would set aside $2.5 million for getting the plan up and running, including money for research through the Medical Research Future Fund.

In last week’s budget, a further $1 million was set aside, this time for increasing awareness among patients and doctors about endo.