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Living with chronic pain

Aroha in hospital and hanging off horizontal bars while competing in Spartan endurance challenge

Aroha is 28 and lives with chronic pain.This is her story.

Have you ever felt the onset of a headache and realised you haven’t had enough water that day? Recently touched a hot surface and felt an aching burn that warned you to stop touching that spot? These are the types of pain signals that are useful in keeping us safe.

But when these pain signals are ongoing, they are no longer serving the greater good for our bodies and can fall into the category of chronic pain .

What is chronic pain?

Chronic pain is pain that lasts beyond normal healing time after injury or illness, which generally is 3 to 6 months. It is a common and complex condition, and the pain experienced can be anything from mild to severe. The defining characteristic of chronic pain is that it is ongoing and experienced on most days of the week.

It can result from injury, surgery, musculoskeletal conditions such as arthritis, or other medical conditions such as cancer, endometriosis or migraines. In some cases, there may be no apparent physical cause. Unlike acute pain, persistent pain serves no beneficial function—it is the problem itself.

Chronic pain has also been connected to overall feelings of depression and anxiety. The same brain chemicals are involved in all three conditions. This means that when persistent pain develops, sufferers can start to feel bad, not just at the site of the pain, but all over, and mentally.

Pain conditions may often be associated with aging, but chronic pain can affect people across all age groups and ethnicities.

I am a 28-year-old, mixed-race woman, who has been diagnosed with a chronic pain condition for the past two years. What was first thought to be pudendal neuralgia (nerve pain in the nerve that supplies the skin between your pubic bone and tail bone), has boiled down to be a case of chronic pelvic pain and ties into my previous diagnoses of adenomyosis, endometriosis and polycystic ovarian syndrome.

So, what is chronic pelvic pain? How did I finally get a diagnosis? What is it like living with chronic pain? How do people with chronic pain move forward with their lives?

While I don't presume to be the mouthpiece for the entire population of chronic pain warriors, I can give you an insight into my experience, and hopefully pass on some coping mechanisms to help yourself, or someone you care about that is living with a chronic pain condition.

Chronic pelvic pain

Chronic pelvic pain is defined as pelvic pain on most days, for more than six months, and is estimated to affect more Australian women than asthma or back pain. I have suffered from pelvic pain ever since my first period at 13 years old. As many women will attest, issues with female reproductive health and pain are often overlooked at an early age and discounted as normal parts of puberty.

By age 26, following multiple surgeries, I found myself requiring minimum 200mg of powerful slow-release opioid pain medication per day to even function. This lasted for several months before I found a pain specialist who was able to help get to the bottom of my pain — pun intended — for it was in fact a nerve, somewhat near my bottom.

Due to the nature of chronic pelvic pain and the taboos around discussion of such private health matters, a lot of women live with conditions like this and never discuss them with their friends, family, or even health practitioners for fear of judgement.

But in order to get an appropriate diagnosis, it is extremely important to either learn to advocate for yourself or find someone who can advocate on your behalf. By regularly self-advocating I finally landed in the office of a gynaecologist who specialised in the treatment of pudendal neuralgia, and I started receiving pudendal nerve blocks quarterly. These injections are put straight into your pelvic floor and are paired with regular pelvic floor physiotherapy to loosen the muscles of the pelvic floor. Diagnosis of pudendal neuralgia is made when the injections have a proven positive impact on symptoms.

More than 12 months later, while these injections do give some temporary relief, my newest specialist and I are back to the drawing board again for a more long-term solution.

The nerve blocks are helpful, and I feel I have built an amazing rapport with my physiotherapist but living with chronic pelvic pain can still be extremely restrictive. To manage my symptoms and ensure I avoid flare ups, I have had to cease activities and foods that have been shown to trigger symptoms. Three years ago, I was preparing to compete in a powerlifting competition, a sport I am no longer able to partake in. I haven’t ridden a bike in such a long time and jumping brings on quite a bit of pain.

I live on an anti-inflammatory diet, and make sure to carry pain medication on me wherever I go. My TENS (transcutaneous electrical nerve stimulation) machine, electric blanket and hot water bottles are my best friends. I even have a beautiful u-shaped cushion at my home office and a sit-stand desk specifically for relieving pressure on my tailbone at work. It may not be glamorous, but it sure beats pain.

None of these things will ever stop me, though. In working through what I cannot do, I found it best to focus on what I can do. Over the past couple of years, I have found I enjoy yoga, I have discovered ways to listen to my body that I had never experienced, and I have learned the importance of saying no to reduce stress reactions.

It’s true that every day has a sliver of the hard stuff, and sometimes it can feel like a never-ending battle with your body. The one piece of advice I got that has helped me move forward was this: it is not your body that is against you; it should be you and your body working together against the disease.

So, continue to advocate for yourself, stay strong and hopeful, be exploratory, make sure to find what works for you, but most of all be kind to the body that you are working with. It can sometimes be frustrating, but there is support out there for all of us.

If you, or a loved one are suffering with pain that is ongoing, help and support are available. Make sure to speak with a medical practitioner, your GP, or call 13 HEALTH.

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Last updated: 18 February 2022