Endometriosis sufferers say long waiting times for specialists as well as restricted access to pain medication means treatment for the condition is defined by their bank accounts and not by their needs.
Difficulties in accessing pain medications have come into sharp relief as pain sufferers and medical professionals prepare for medications containing codeine to become available only with a prescription from a GP from Thursday onwards.
Chisholm resident Erica Brown says the ban is just one element of difficulty for women suffering endometriosis, a condition where tissue similar to the lining of the uterus grows outside the uterus, causing pain and sometimes infertility. It affects one in 10 women.
Ms Brown first experienced pain from the condition when she was 11 years old - she had to wait 10 years to be diagnosed at 21, and now at age 39 has clocked up 15 surgeries as part of her treatment for the condition, including a hysterectomy last year.
"That 10 years was spent with doctors telling my parents i was putting it on - that I was seeking attention and there was nothing wrong with me," she said.
The pain has been so severe and constant that Ms Brown has had to leave her job, and says it contributed to the breakdown of her marriage. While Ms Brown says she does not rely on over-the-counter codeine for treatment, other sufferers of endometriosis use the medication for the severe period pain that comes with the condition.
"It does ruin it for us who are trying to do the right thing," she said. "If I run out of my pain killers and I can't get into the doctors I'm stuffed."
Fairfax Media revealed this month that it takes nine to 12 months for public patients to get an appointment at the pain management unit at Canberra Hospital, but Ms Brown waited two years for her first appointment, and although the treatment has been helpful, the difficulty in scheduling follow up appointments as a public patient contributes to her pain.
"If you don't have money then your treatment options are very limited," she said. "Basically my treatment is defined by my bank account."
Women in Canberra can access support from fellow sufferers through the Canberra Endometriosis Network, and Ms Brown says her specialist Dr Uche Menakya makes a big difference for Canberra women.
Canberra women's health practitioner Dr Kelly Teagle says that a big problem for women in the ACT is that they don't know what services are available, including at the Canberra Endometriosis Centre.
"I think it comes to knowing where to go to get the services, the Canberra hospital has great services once you know about them," Dr Teagle said.
She believes the problems with codeine outweigh the benefits for endometriosis sufferers, preferring more targeted approaches. "Honestly i have to say codeine doesn't have a big role in my management of women with endometriosis pain," she said.
The ban on pharmacists supplying medications like Panadeine Forte and Nurofen Plus is intended to cut down on people abusing the medications, with Health Minister Greg Hunt saying on Tuesday that the change would save up to 100 lives a year.
"We know around the world in many places there is an opioid crisis. Codeine is part of that family. In other countries such as the United States and the UK, the decision was taken long ago to put these opioids on a prescription basis," he told ABC radio.
Ms Brown criticised simplistic responses from medical professionals suggesting holistic approaches to pain management in media coverage around the codeine ban.
"If we were able to cure our chronic pain by doing some yoga, we'd be doing that," she said.
New statistics released this week show that the ACT had the second highest rate in the country of people delaying visits to the GP due to cost. The ACT has the lowest rate of bulk billing in the country, with just 62.1 per cent of GP services bulk billed, compared to a national average of 86 per cent.
The federal government announced an action plan to target the condition last year and an $160,000 research grant to fund better treatment.