Juliet: Inherited pain condition

My pain symptoms started when my menstrual cycle began, at the age of 12. I had blinding pain in my pelvic region, sweating and nausea associated with menstruation. As I got older I also experienced intense back pain, and I would often blackout.
I was put on the pill from the beginning, my doctor assuming hormones were the cause of my symptoms. It did help, but also made me sick and I gained weight.
The cycle of pain and blackouts continued throughout my teens and into adulthood, but in 2006, at the age of 30, the pill stopped working for me.
When I first experienced the symptoms not connected with my menstrual cycle, I had no idea what they were. I also began experiencing shoulder and arm pain, and severe pain along the left side of my body, including aching teeth, a numb tongue and piercing pain in my left eye.
I continued to work but felt crippled by the pain, and after work I couldn't even do the dishes, let alone any other activity, and found it difficult to sleep.
Later I saw a gynaecologist who was convinced the pelvic pain was caused by endometriosis, so I had surgery, but very little scar tissue was found. I had some relief for six months, but then the symptoms returned.
Then in 2009 – more than 20 years after the pain began – a different gynaecologist finally made an accurate diagnosis. I had pudendal neuralgia.
In pudendal neuralgia the pudendal nerve located in the pelvic region becomes entrapped or compressed, causing chronic nerve pain. In my case, I discovered it was an inherited condition triggered by a fall at the age of 11, which compressed the pudendal nerve and began the cycle of painful episodes.
It was a relief to discover that the different forms of pain I had been experiencing were all related to this one condition, which amplified every twinge of pain I felt in my body.
Initially I considered a nerve block because my symptoms were severe, but I decided to try alternative therapies first. I began seeing an osteopath weekly, I stopped pilates because the core strengthening exercises can compress the pudendal nerve, and I began acupuncture once a month to help relax my muscles.
It's been two years since beginning treatment, and I'm fortunate to now lead a normal life. I see my osteopath and acupuncturist monthly, and I've just begun physiotherapy, swimming and walking.
Today I hardly ever have bad pain, unless I'm under stress. I feel like a different person. Getting the proper diagnosis and treatment has transformed my life.


My problems started in the early 1980s with the introduction of computers in most public service departments.In 1986,
It was during a long jump attempt at my school's athletics try-outs when I was nine that I first hurt myself.As usual, I ran and jumped but as I hit the sand I felt pain in what I thought was my ankle.
My first taste of pain and injury was when I was only three years old.We had a car accident and I had my lower lumbar joints damaged as well as whiplash injuries to my neck. No one knew this at the time, though, and by the time I was nine I was having X-rays on my back to find out why I was in so much pain.
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I was an advisory teacher when I suffered a spinal injury in 2007 that landed me in a Brisbane hospital emergency department.Thanks to a neurosurgeon, I regained the use of my left leg and the crushing pain eased. 
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I was nine years old when I damaged the ligaments in my left leg in a hurdling accident.After a year of treatment my leg hadn't healed – in fact the pain had worsened and I was diagnosed with chronic regional pain syndrome.
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I first incurred a serious back injury at work in 1985. It was not able to be evidence-based for five years (at the time of surgery).
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I woke up one morning in 1988 with a sore back.As the pain continued to increase, I consulted my general practitioner who referred me to an orthopedic surgeon. After some tests, I was told that there were no problems and that the pain should go away. It didn't.
I'd survived the traumas of a major motor car accident, the ignominity of a prostatectomy, and the despair and exasperation of three separate cancers and their harsh therapies, but nothing had prepared me for the greatest challenge of my life, dealing with chronic pain

