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A personal story of living with pain

Further to the previous post describing efforts to improve pain management, Geri Badham, a Canberra-based freelance journalist/researcher, writes below of her experiences with chronic pain.

(Please bear in mind that everyone’s experiences differ, and Croakey articles are not intended to provide individual medical advice.)

Geri Badham writes:

Prior to becoming a chronic pain sufferer, that is, someone who experiences daily pain for three months or more, I had led a busy life which included participating in several outdoor activities and exercise, and working in demanding jobs.

Post pain, it has been devastating to have to adjust to a vastly different life.

The onset of severe and at times, excruciating back and pelvic pain was sudden, its causes having various doctors baffled. I wondered if it was from my activities such as long-distance cycling, strenuous yoga stretches, sitting for long periods at a desk, or the post-operative effects of the removal of a melanoma (entailing infection and blood clotting in my leg).

In the early stages of being in pain, large doses of various over-the-counter pain medications and the prescription drug Panadeine Forte did not help much, and Endep (an anti depressant) did not help with sleep but seemed to increase my agitation. A GP prescribed Digesic, so, with 10 of them daily (later reduced) and a small dose of the anti depressant, Avanza, I was able to sleep at night.

I was also prescribed antibiotics on the basis that I might have osteitis pubis (inflammation of the pelvic area affecting people such as pregnant women, and athletes, footballers and runners) – despite that it usually only affects young people. Other medications prescribed by medicos, which varied in their effectiveness, included Naprosyn, Colafac, Buscopan and Tramadol.

Taking so many drugs was new to me, so I kept a log of what I was consuming, but soon discovered the downside of some drugs, such as nausea, stomach upsets, drowsiness, dizziness, vagueness, anxiety, muscle aches, depression and weight gain. Some complementary therapies and meditation were quite useful.

For well over two years, I had many bad days, propped up by Digesic and/or antibiotics, feeling desperate as I visited medical facilities which I never would have dreamed of before. After many consultations with GPs, gastroenterologists, gynaecologists, consulting surgeons, an infections specialist, and a sports medicine doctor, and having myriad blood tests, three laparoscopies, two colonoscopies, a gastroscopy, a cystoscopy, a bone scan, six pelvic and/or abdominal ultrasounds, four CT scans, five MRIs, four x-rays and a gallium scan, doctors could not identify anything sinister.

Various possibilities for the pain were mooted including pelvic adhesions (identified in investigations). I felt frustrated at getting no real answers but tried to lead as ‘normal’ a life as possible.

A ‘breakthrough’

By late 2007, constant pain was making my life grim. Based on ‘advice’ from one of my sons who had been searching the internet, in December 2007 I had an initial consultation with Professor Thierry Vancaillie, a gynaecologist from Sydney’s Prince of Wales Hospital who works with a multi-disciplinary team, comprised of doctors, nurses and allied health professionals at the Women’s Health and Research Institute of Australia (WHRIA).

Included in this group is Sherin Jarvis, a highly-qualified clinical and research pelvic floor physiotherapist who conducts detailed examinations and provides advice on specialised exercise to reduce pelvic pain.

Professor Vancaillie diagnosed pudendal neuralgia (a painful neuropathic condition caused by inflammation of the pudendal nerve), and prescribed the anti-epileptic drug, Lyrica. In 2008 and in 2009 he administered Botox to relax the pelvic muscles and reduce the spasm-like contractions, and also conducted a surgical pudendal nerve release (March 2008), all of which reduced pain.

Since that time, medical treatment, advice and support from Professor Vancaillie and Ms Jarvis have helped me enormously in managing my condition and not being as ‘fearful’ of pain as I had been. In 2010 Professor Vancaillie administered cortisone via trigger-point injections. This has further reduced the pain enabling me to take less medication (Lyrica) as well as regain some quality of life.

Impressions of the health system

Given the demands on our overloaded health system, many unpleasant situations occur, including those related to appointment or patient information mix-ups and a distinct lack of nursing staff. Some doctors can lack empathy: A GP barked at me: ‘There’s nothing western medicine can do you for you’. When a doctor referred me to a pain management clinic after only a few consultations, I felt distinctly fobbed off, especially when the pain specialist said: ‘Come back when you have a diagnosis’. A nurse from a GP’s clinic advised me to go to the hospital’s Accident and Emergency clinic, which proved to be distressing and totally unproductive.

Overall, unless pain indicates a life-threatening condition, our health system does not seem to cater very well with helping people to manage pain.

It can be useful for consumers to keep details of their medical procedures and tests, develop an awareness of the complexities of securing medical services and be able to question ‘the system’ when necessary.

It has been my experience that medical treatments which, while not necessarily meeting the strict criteria that would qualify them as ‘evidence-based’ therapy, nevertheless provide practical relief and help in reducing and managing pain.

I suggest that people with chronic pain take the time to look for a physician and/or team of allied health professionals whose treatment methods meet their particular needs.

Pain management and support

Groups such as the Australian Pain Society (www.apsoc.org.au), Chronic Pain Australia (www.chronicpainaustralia.org.au) and Pain Australia  (www.painaustralia.org.au) provide valuable ‘big-picture’ information for pain sufferers.

• Geri Badham is a Canberra-based freelance journalist/researcher whose employment background includes that of adviser, public affairs officer and research officer in various parliamentary and government departments. Until the onset of severe pain, she participated in many sports and outdoor activities.

 

Comments 1

  1. Bernadette Ryan says:

    I can totally sympathize with your situation. I have been on a nightmare pain journey for six years. My is further complicated with the added stigma of “work-cover”! After a total right hip replacement in 2009 I complained to the surgeon Craig Waller, at St Vincent’s Private Hospital Sydney that my pain had not eased. He suggested at the 6 week post appointment: “You have a new hip. There is nothing wrong with it. If you have any further issues contact your GP.” He had no further contact with me apart from a letter to the insurer suggesting I needed Pain Management for my chronic regional pain syndrome. My most recent appointments took me to Melbourne. I was consulting with Dr Bruce Mitchell at the Metro Spine Clinic. Bruce wanted to give me a sacral nerve stimulation trial. I last saw Bruce in February 2012. The insurer has to date not replied to Dr Mitchell’s request. I have been without a physiotherapist, psychologist or specialist since then. It is now May 31st 2013, 15 months later and still nothing! I will be following up on the team at The Prince of Wales to see if I might be able to access some support from them. I trust you are well and hope you are back doing the things you most love. I too was extremely active prior to my injury. I was a classroom teacher of 26 years. My whole life has altered.

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Croakey Conference News Service 2013 – 2019
2013 conferences
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Closing the Credibility Gap 2013
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Racism and children/youth health symposium 2014
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Population Health Congress 2015
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