By ANGELICA SNOWDEN

The first National Action Plan For Endometriosis was announced  last week by federal Health Minister Greg Hunt, aiming to bump the widespread chronic disease into the spotlight.

But for Claudia Sorace, who suffered with undiagnosed debilitating pain for close to 10 years, this announcement was “a little too late”.

For many women around Australia the most difficult part of endometriosis isn’t the blinding pain, the fatigue, or missing out on work or social occasions. It’s the struggle they face trying to get doctors to believe them.

When Ms Sorace started having severely painful periods at 15, it was the first sign she had endometriosis, but she wouldn’t know that for another eight years.  

Only after she had an unnecessary and invasive appendectomy in 2013, did doctors recognize her symptoms as that of endometriosis.

Ms Sorace’s case became was so severe she menstruated constantly for two and a half years, with hormone treatment having little effect. Where the uterus would normally weigh 400-600g, Ms Sorace’s weighed 2.5kg.

“You isolate yourself at that point. I was getting bigger and bigger and I didn't really want to see anyone because I was embarrassed and looked like I was pregnant … people would ask when I was due,” she said.  

The National Action Plan for Endometriosis aims to definitively improve the quality of life for women with endometriosis.

It is the first coordinated approach to find a cure and has three priorities: to promote awareness and education, improve clinical management and care, and boost research efforts.

The Turnbull government allocated an initial $2.5 million to conduct clinical trials to develop effective treatments and services, then pledged another $1 million to improve awareness in GPs and healthcare professionals. 

The plan acknowledges the huge burden endometriosis has on the health system in Australia. A 2012 study that found endometriosis cost Australia $7.7 billion annually due to the loss in productivity and pressure on the healthcare system.

The problem

Endometriosis occurs when tissue grows outside the uterus, where it is only supposed to grow inside the uterus. Although it is estimated that one in 10 Australian women have it, the causes are not known. 

On average, it takes between seven and 12 years to diagnose, and for Ms Sorace it was eight. However, even then, accessing all treatment options is difficult.

For Ms Sorace, despite worsening symptoms and already becoming infertile because of other health complications, the idea of finding relief through a hysterectomy was consistently dismissed.

“[The gynecologist] was adamant that she would do everything she could to avoid a hysterectomy and surgery would be the last resort,” Ms Sorace said.

“It's the way we are brought up. A woman is there to have children and if she doesn't have children she is somehow missing something.”

She said the doctor that finally okayed her hysterectomy was the first doctor to actually touch her abdomen. Her uterus was hard as a rock.

“It was the first time in two and a half years that someone took me seriously,” she said.  

But even then, arguments with emergency room surgeons led to the procedure being postponed twice.

“[An emergency doctor] basically accused me of faking the pain and said that I was not going to have a hysterectomy ... [he said] I was just drug-seeking,”  Ms Sorace said.

“It was the most traumatising thing that ever had happened to me.”

She had to employ a medical lawyer, and be assessed by three psychiatrists and three other surgeons to go ahead with the surgery.  

It was confrontations like this, and countless other similar conversations with medical professionals, that led Ms Sorace to feel she had no ownership over her treatment or body.

While she is sceptical about the government’s action plan, she feels “something has to be done”.

Problems with diagnosis "not surprising"

Associate Professor Vinay Rane, obstetrician and gynecologist at Melbourne Mothers health centre, said he was not surprised endometriosis took so long to diagnose as it was common for women to normalise and deal with their pain silently.

"The women that are affected by this, [it] cuts them down at a time in their life when their own health is not their first priority,” A/Prof Rane said.

“They are usually busy with university studies, their career or young children and as a result they put their health needs to one side and somehow manage to cope with the pain when it occurs,” he said. When women do seek medical assistance, their symptoms are minimalised.

Despite having top private health cover, the cost of seeking medical assistance was so great that Ms Sorace's partner, James Cutting, had to crowd-source funds.

“All up it was $23,000 out of pocket,” she said.

Although at times she felt hopeless, she said she planned to use her experience to support other women.

“I like to look at it positively. I'm here for a reason to make sure other women don't have to go through the same thing," she said.

“We can vote.  We can do all these incredible individual things. Women have started to break the mould in industries we didn't really have an insight to.

“If we can say yes to gay marriage, we can say yes to removing a scumbag uterus.”