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”, below].
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. Would I be in far less pain if the system was better equipped?
Even writing about my pain means having to confront very unpleasant memories. In the grand scheme of things, my health otherwise is just fine, and for that I am grateful. I also am incredibly fortunate and have always had the best access possible to specialist healthcare, thanks to my parents being able to afford family health insurance.
Like many people, I wish I’d known and been able to understand my chronic pain sooner. I would have felt less like an alien, less of a drama queen at times. With 20% of us suffering pain to some degree, the chances are that the person next to you on the bus, serving you in the restaurant or sitting at the desk opposite is suffering, silently or not. Chronic pain exists in every family, friend group, sports team, school and workplace. Because chronic pain is invisible, we often forget that it’s there.
When I talk with another chronic pain sufferer, our experiences will often be sadly similar – from misdiagnosis to misunderstandings and the long, rocky road to working out what was going on.
Hot in the kitchen
On the outside, I look fine. I went to university and graduated with a master’s in politics with distinction. I’ve always loved to cook, especially baking. Some fun times cooking for my flatmates led me to audition for the 2022 MasterChef New Zealand TV series. I ended up in the top three and it set me on a new path, putting aside a planned PhD to work as a pastry chef at top restaurants: Auckland’s Baduzzi and Queenstown’s Amisfield, and now, back in Auckland, Paris Butter.
Cheffing means being on your feet for hours in fast-paced kitchens. Every day, I put myself under immense physical and mental pressure and I’ve had to work hard to find treatments that work.
I had issues with my period from day one when aged 14. Once, a teacher mocked me for the number of times I was going to the bathroom. This was my first experience of learning to keep quiet. Sports days were interrupted: I could not run through the pain of my period.
At 16, a GP recommended the contraceptive pill, which can regulate disruptive periods and lessen bleeding. Not for me. If anything, it made things worse. My bleeding continued to be heavy, my hormones monstrous. I would often wake up and just feel completely overwhelmed by sadness, anger and grief.
The pain became worse as I got older. It was like a hot poker was being jabbed into the centre of my stomach. The pain runs down the side of my body, especially the right side, through my leg and down to my middle toe. The first doctor I saw, and the second and third, prescribed ibuprofen and paracetamol for pain relief.
I saw a urologist at age 20. She told me I needed to “train” my bladder. Nothing worked. No diagnosis or cause for the pain was given. I even started to think I was imagining it.
On a flare-up day, my abdomen would grow two dress sizes, and any pressure on my stomach, such as a seatbelt, was that red-hot poker. I couldn’t empty my bowels. I cancelled plans, parties and avoided sleepovers during my high school years because I was too ashamed of my need for constant trips to the bathroom.
At age 20, I was at my worst. But finally, the beginnings of progress. I saw a physio-therapist who listened to my symptoms, examined me and asked if I had ever considered that I had endometriosis.
After all I’d been through and the number of doctors I’d seen, no one had suggested this. I had only heard the word myself six months earlier, because my flatmate had it. Endometriosis is a condition where tissue that lines the uterus grows elsewhere in the pelvis, causing inflammation, scar tissue and, yes, chronic pain.
About 120,000 Kiwi women are affected by endo, and Auckland gynaecologist Dr Padmaja Koya says surgery will not necessarily stop the pain.
“It’s well known that the correlation between the extent of the lesions and degree of pain is poor,” says Koya. “In 15% of cases with chronic pain, no lesions can be seen on laparoscopy. Pain recurring within a year or so after initial surgery will not improve with further surgery.
“It is a mistaken belief that persistent pain is always a sign of, or due to, endometriosis and thus surgery is imperative. These women can also experience a range of extra pelvic pain syndromes, such as migraines, myofascial pain or widespread muscular symptoms and irritable bowel syndrome.”
It’s also not uncommon to experience anxiety, depression and chronic fatigue, which have impacts on social relationships, work and productivity.
In February 2021, a few months after my physio appointment, I was finally diagnosed with stage three endometriosis. When laparoscopic surgery was carried out to remove endometriosis tissue, I was also diagnosed with adenomyosis, where the endometrial tissue grows into the wall of the uterus, causing heavy bleeding.
I was happy to get a diagnosis, but unfortunately, after the surgery I was still in much pain. Permanent damage had been done to my pelvis and I had an unwelcome guest – neuropathic pain or phantom pain. Again, I didn’t know this was even a thing until I was diagnosed with it.
My drug regimen was notched up. I was prescribed the heavy-hitting Gabapentin. No change. Other usual pain medications didn’t help, either. What did work, however, was physiotherapy.
I went back to the same woman who treated me before my surgery, profusely thanked her, and began getting pelvic physiotherapy. Slowly, my area of pain became smaller and smaller. My feet no longer hurt, then my legs stopped aching, and finally the pain was concentrated to my pelvis. On several days, I experienced very little discomfort. It was incredible.
Side effects
Managing chronic pain is ongoing work. People with chronic pain understand the struggle to find effective long-term treatment that doesn’t break the bank. The most cost-effective and accessible medicines available to me were prescription pain medication (such as Tramadol or Gabapentin) or low-dose antidepressants, which another urologist tried a few months after surgery, with no results.
None of these medications is free of side effects – Gabapentin makes me feel faint and lightheaded, which, for a chef, isn’t the best.
Koya says chronic pelvic pain is well recognised worldwide, but New Zealand is lagging in providing optimal care. “I believe it’s multifactorial – a lack of understanding the entity, estimating its impact on one’s life, productivity and society.”
When I went on MasterChef in February 2022, I stopped all of my medication to avoid drowsiness and other side effects – I knew I couldn’t operate at the level I needed to otherwise. The programme was a wonderful experience, if you don’t count my pain. For me, it was better to be in pain but able to stand and work than to feel faint and brain-foggy. Fainting on camera was not an option.
Physio and surgery did much to reduce the pain but flare-ups can land me right back where I started. I’ve continued to seek other treatment with a lot of success. Several of the best ones have been lifestyle changes – in my diet, exercise (no running, for example), and magnesium supplements.
More recently, I found something else that works and gives me hope – cannabidiol (CBD) oil. With a consultation and prescription, a month’s supply cost me $700.
I do wonder why I can get Tramadol at minimal cost, yet have to be made of money to get my hands on an effective CBD product (it will be about $200 a month ongoing). So far, it has given me back some control, dulled the pain and makes me feel stronger all round – strong enough to go public with my story, hoping it may help others who live with debilitating pain.
Not just physical
I can’t speak too highly of the benefits of physio for me, and some physiotherapists specialise in managing ongoing chronic pain. Gail Hyland is a pelvic health physiotherapist in Dunedin, working with men and women. She combs back through her patients’ health histories, creating a timeline, sometimes from childhood, of problems they have had and treatment successes and failures.
Hyland, who also works at Otago University’s School of Physiotherapy, says an evidence-based approach is essential to identify or rule out serious biological causes for pain and other symptoms before beginning treatment.
“I explore patients’ psychological, physical and social health in the culture and environment I find them. Pain sufferers often face a mixture of physical and psychological issues.”
Once she has a full picture, she begins. She uses a variety of methods to relax overactive, painful muscles. Treatments often involve exercise aimed at improving muscle balance, strength, co-ordination, relaxation and breathing.
Hyland says patients with persistent pain often benefit from having more than one health provider with different skills – a multidisciplinary team, with good communication between them. But despite the evidence in their favour, funding can be a challenge in the public and private sectors.
Inadequate funding
Auckland-based Katy Street is a specialist musculoskeletal physiotherapist with a subspecialty in spine care. “Public hospital waiting lists are very long for chronic pain management,” she says. “Due to their limited funding, they are only able to accept clients with high-level issues. At present, even if you have private health insurance, you are funded only to see medical specialists and not fully funded to see a physiotherapy specialist.
“Most clients have to self-fund treatment, which can be unachievable for many people, especially if they are struggling to work full-time because of pain. There is also no funding for health psychologists, who often work in pain management, and while some people have private health funding for clinical psychologists, it is very hard to find one, because they are so overloaded.”
In a way, I’m one of the lucky ones. After 10 years, I now have many items in the toolkit to help manage my pain so I can continue working and enjoying life. But there are so many others without the resources or knowledge to do the same.
Just because we can’t see pain, it doesn’t mean that it isn’t valid, or important and worthy of treatment. If we talk about it, we feel less alone and, hopefully, changes will come.
Stuck signal
Pain management begins with the aim of learning to tolerate it.
By Ruth Brown
“It’s all in your head” is one of those medical assessments sure to instantly infuriate the chronic pain sufferer. It’s like blaming your flatscreen TV for bad acting, says Blenheim GP Buzz Burrell, who is training to become a pain specialist.
Yet the brain does play a part in cases of chronic persistent pain, and it needs to be engaged to provide relief for sufferers.
Burrell explains the physiological process of the body’s response to pain: you stub your toe and a message is sent via a nerve pathway to your spinal cord. It then sends a message to the bottom of the brain, which sends a message to the top of the brain, which registers the pain, and you say, “Ouch”.
But for chronic pain sufferers – those who have suffered pain daily for six months or more – even though the toe heals, the messages keep sending. The first nerve stops firing but the second keeps going and the brain still perceives pain. “What’s even worse,” says Burrell, “is that the second nerve then phones friends on either side of itself … and when that happens, the whole leg starts hurting.”
This is called “central sensitisation”. “We’ve sensitised the spinal cord and now it’s shouting at the brain, and in fact, telling the brain lies.”
But, says Burrell, “the good news is that just as we can be sensitised, we can also be desensitised”.
For patients referred to the Auckland Regional Pain Service (Tarps), the first thing they learn is that their pain will not be “fixed”. Instead, a process of pain management begins with the aim of learning to tolerate it so they can get on with their lives.
The goal is a significant reduction in pain awareness and suffering. The service’s clinical lead, Dr Tipu Aamir, says that after 12 months, 70% of patients are in a far better place mentally, emotionally and physically. For a small proportion, the pain will be less intense.
An estimated 200,000 New Zealanders (one in 25) have pain so bad they’re either not working or have had to cut down. A 2018 report by research group Sapere estimated the cost to the health system of all persistent pain conditions at $2 billion annually and $15 billion a year to the economy in lost production and benefit payments.
More than 50% of the 1000 patients referred to Tarps at the Greenlane Clinical Centre each year have musculoskeletal pain, including spinal pain and arthritis. There are also cases of neuropathic pain, phantom pain after amputation and chronic headache. Depression and anxiety typically run alongside. Each patient is first assessed over three hours by a physiotherapist, a clinical psychologist and a pain specialist. Nurse specialists, occupational therapists and psychiatrists may also be involved subsequently.
The physio and psychologist do the lion’s share of the work, which varies widely depending on the patient’s needs. Psychologists work on cognitive restructuring, which might include acceptance and commitment-based therapy, cognitive behavioural therapy, hypnosis, or mindfulness techniques.
For the physio, it’s often about addressing patients’ fear of pain (they worry activity will make the pain worse) through gradual exposure to activities. Another option might be virtual reality games – of tennis, for example, where a patient with a shoulder injury sees themselves back with a racket in their hand.
“It’s all about getting the movement back,” says Aamir. There are tailored programmes to improve strength, flexibility and endurance.
Patients often arrive heavily medicated and withdrawal of meds such as morphine, which sometimes do more harm than good, also plays a large part. But there can be interventions as well, such as injections and spinal cord stimulator implants. Aamir says success does not mean living without pain but that pain no longer dominates. It recedes into the background. “You’re not trying to fight it.
“I’ve been doing this for more than 20 years. Looking back at people I’ve known over years and years, the quality of pain and the intensity of pain change over time and people do get better.”
There is a genetic element in predisposition to chronic pain, and women and Māori are known to be more vulnerable, says Aamir. Another significant indicator is early trauma. People who have been through sexual, physical or emotional abuse in their early years have a greater susceptibility.
Burrell, a GP for nearly 30 years, says a “very comfortable” majority of GPs do not know how to assess or treat chronic pain and apply a mainly biomedical lens – which means lots of drugs. Instead, a “socio-psycho-biomedical lens” is needed.
Statistically, GPs should look after 80% of cases. But they are not trained, he says – a bit like a driver who has just gained his licence is not trained for a high-speed car chase in fog. Treating chronic pain should be a core competency for GPs, like CPR.
According to Sapere, about 770,000 New Zealanders had chronic pain in 2016/17; this is projected to rise to about 1.26 million by 2048.
All main centres have publicly funded pain clinics and some regional towns have smaller versions, but Aamir says some areas are poorly served. He and Burrell say the number of pain specialists needs to more than quadruple from the current 14 full-time-equivalents.
Burrell says if the new Health Minister, Shane Reti, were to argue we can’t afford it, the answer is, “Mate, you can’t afford not to do it.”
Rachel Haggerty, director of service strategy planning and purchasing at Te Whatu Ora, says although there is a case to be made for increased provision of pain management services, it has not been recognised as an immediate priority in the agency’s clinical service planning.