Katie Carr is among an estimated 3.6 million Australians who live with chronic pain.
The 37-year-old musician's ordeal began when she suffered severe pain in her abdomen about 2.5 years ago.
"They found very large tumours on my ovaries. I had to have emergency surgery to remove them," said Ms Carr, of Newcastle.
"When I had the surgery, a lot of nerves were cut."
This left her in a lot of pain, "more than I should have had".
She was diagnosed with "complex regional pain syndrome".
"It's a neurological condition. It means I'm always going to have pain in the area where the surgery was performed," she said.
"It's literally changed my entire life."
Ms Carr shared her story to mark National Pain Week, as Chronic Pain Australia released its national survey.
Chronic Pain Australia's vice president Fiona Hodson said "one in five people aged up to 65 have chronic pain".
"Then it increases to one in three over 65 because of the ageing process," she said.
The survey revealed a "concerning correlation" between chronic pain and mental health challenges, including "an increased prevalence" of suicidal thoughts.
The survey of almost 3000 patients and carers living with chronic pain found that stigma, sleeplessness and mental health struggles were driving suicidal thoughts in "one in two people living with the condition".
Half the respondents said they had thoughts of taking their own life.
More than half had felt stigmatised by healthcare professionals and three quarters had mental health issues.
Ms Hodson, a Newcastle-based nurse, has specialised in pain management for 25 years.
She said big gap fees of $100 to $150 meant many affected people can't afford to see a psychologist.
Chronic Pain Australia is urging the government to fund multidisciplinary pain teams through Australia's 31 primary health networks.
Under the plan, people would be offered free pain programs close to home.
Ms Carr treats her pain with hydrotherapy, physiotherapy, cold-water swimming in the ocean baths and medicinal cannabis.
"When I came to Newcastle last year to stay with my mum, I was a shell of a human being," she said.
"The people at the Church of Ubuntu and their GP literally saved my life. Newcastle is a beautiful place to heal."
She tries to rely as little as possible on synthetic painkillers.
Ms Hodson said many people had been forced off opioids, without support programs, due to prescriptions of the drugs being tightened through regulation.
She said people using opioids need to be monitored and "the evidence doesn't suggest they're good for long-term use".
But she was concerned that people who had been denied opioids, often after using them for a long time, "feel like they're being treated like drug addicts".
She said there were people using opioids "appropriately" and "living well".
Some of those forced to stop using opioids find they "become depressed, can't work, can't sleep and they're drinking".
"So they go onto antidepressants and benzos [like Valium]," she said.
"They're self-medicating with things they can afford, which is alcohol or other illicit substances, to take them away from the pain they're in."
Vapes and cigarettes were also being used in this context.
Chronic Pain Australia sought to educate people about medicinal cannabis, including with a video series released this week.
"In the survey, there was a huge jump in medicinal cannabis use and non-medicinal cannabis use," Ms Hodson said.
"People wanted more information on the evidence around medicinal cannabis.
"There's some evidence for sleep, neuropathic pain, multiple sclerosis and arthritic conditions."
She said cannabis was "not a one size fits all" solution for everyone.
Therapeutic Goods Administration [TGA] data shows more than 203,000 applications to prescribe cannabis for chronic pain have been made in Australia since 2016. It was the top condition for which the drug was prescribed.
A University of Sydney-led study, published in 2021, concluded that "medicinal cannabis is worthy of consideration in the management of chronic pain".
"It is important that doctors are aware of the positives and negatives related to its use.
"Harm minimisation should always be front of mind in prescribing decisions, particularly with patients who are driving regularly or using heavy machinery.
"It must be recognised that the long-term effects of medicinal cannabis, potential drug-drug interactions and efficacy across different pain types remain only partly understood."
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