The pain that remains

Former MasterChef contestant Alice Taylor says finally putting a name to the cause of her agony was just a beginning.

How much does pain cost? By my reckoning, thousands of dollars on specialist and GP visits, hundreds of hours of missed schooling and sports days, hundreds of dollars on vitamins and supplements that the internet told me would help and didn't, and most recently, $700 on CBD oil, which did.

In other words, I can't even count it. I am 24 and live with constant chronic pain. At 21, my pain received a name - stage 3 endometriosis, adenomyosis and painful bladder syndrome. Since the day I got my first period, I have had, and continue to experience, a burning sensation of pain in my pelvis, and sometimes in my legs, back, arms and even my feet. Relief is occasional, for a few months at a time, depending on my current treatment regime. When the pain is searing, it lasts a week. The level of the pain and how often it occurs have reduced over time as I've had treatment. It's now about 30% of what I suffered at age 20 but I could still wake up tomorrow with a flare-up.

Over the years, I became very good at hiding my pain.

ONE IN FIVE

There are publicly funded pain clinics throughout New Zealand but waiting lists are long. Specialist doctors in the field estimate something like one in five New Zealanders live daily with chronic pain that causes some loss of functionality. It can come from hard-to-treat conditions such as endometriosis, or arise from illness, an accident or surgery gone wrong. The cost to the country is an estimated $17 billion a year in lost production, welfare benefits and healthcare costs.

"More people have chronic pain than smoke," says Buzz Burrell, a GP who is just one health sector advocate for more resourcing to understand and manage pain [see "Stuck signal", page 32].

Managing chronic pain feels like treading water, trying to stay afloat each day. There's no silver bullet to just fix it, and it makes me wonder if my struggle is a consequence of the shortcomings of the healthcare system.