More than 50,000 people with endometriosis have helped map the impact of the condition around the country, as the federal opposition calls on the government to expand its new pelvic pain clinics.
A review from the Australian Coalition for Endometriosis (ACE) found major gaps in services and support around the nation, with many patients being forced to travel hours from home to get care.
The federal opposition is calling on the government to expand its trial of endometriosis and pelvic pain treatment clinics to deal with the lack of options in some areas of the country.
Endometriosis is caused by tissue — similar to that which lines the uterus — growing outside the uterus.
It affects around one in nine Australian women and people assigned female at birth and can cause excruciating period pain along with a host of other symptoms like nausea, bloating, fertility issues, lower back pain and more.
Struggling to get treatment
Rachael, a university student from Tambellup, has had to contend with these symptoms since she was a teenager, but now she’s forced to drive herself hours to access treatment.
“I first started having issues when I got my first period when I was about 10 to 11 years old and then I suffered through all of my high school years and never had any answers,” she said.
She finally got diagnosed 10 years after her symptoms started, but with specialists four hours away in Perth, she can’t actually get there as much as health professionals say she should.
“I have to go through a women’s health physio every two months. It should be monthly but I can’t travel to Perth once a month.”
“When I add everything up — with medications, health and everything — it’s costing me about $15,000 a year, without any extra costs added on, like loss of work.”
Review demonstrates lack of knowledge
The ACE review showed that there are major differences across the country around endometriosis education and treatment access.
Underpinned by a survey of 50,000 people with endometriosis, it showed that, like Rachael, many others in WA are having difficulty accessing care.
And that problem goes across state borders, over half of Tasmanian respondents said their periods disrupted their usual daily activities, with almost a third missing school or work because of it.
In the Northern Territory, 51 per cent of respondents said the same.
Chair of ACE Jessica Taylor said the results illustrate the lack of services across particular areas.
“We heard an enormous and overwhelming response from people who are living with endometriosis, like those in WA who just cannot access care in a way or in a place that is close to them,” she said.
She said findings like 57 per cent of patients in the ACT experiencing bladder and bowel pain — significantly higher than all other states and territories — show lack of education is also a problem.
“This is why we need a national approach, there are national programs that are run out of states and territories but we need to extend them even more.”
Ms Taylor, who has adenomyosis (when tissue grows in the muscular wall of the uterus) and endometriosis herself, said patients are also contending with expensive treatment costs and not being taken seriously.
“Endometriosis patients report being invalidated, humiliated, sent home from emergency departments without treatments and accessing the specialised doctors can be so difficult with really long wait times.”
For patients like Rachael that meant it took a decade for her to be diagnosed.
“I went into the emergency [department] probably about five to six times across two weeks and I got pregnancy tests,” she said.
“Every time I went in, they did some scans and when I went back to the doctor, I was told I had probably just pulled something in my abdomen.
“I went and approached a doctor about it and I was just told to make sure I have kids early, so I walked away from that not knowing what to do or where to go.”
Like ACE, she wants more education for doctors and the wider community.
“[We should be] bringing it into schools so young girls don’t have to suffer the way I did and be told its all in their head … [and we need] more funding to continue the start of what’s taken quite a long time, to help everyone realise and provide more support,” she said.
Source: ABC News