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SAMJ: South African Medical Journal

On-line version ISSN 2078-5135
Print version ISSN 0256-9574

SAMJ, S. Afr. med. j. vol.98 n.12 Pretoria Dec. 2008




Neuropathic pelvic pain - a personal experience



In many years of practice, I have learnt a great deal from listening carefully to my patients' experiences in illness. I therefore thought my account of an encounter with neuropathic pain might be helpful to others. I write under a nom de plume, because these facts are very personal!

I had an incision of the bladder neck for increasing urinary difficulty with a small prostate 10 years ago. This was followed by 6 months of severe non-bacterial prostatitis. That settled, but reappeared repeatedly in the past few years as increasing urinary difficulty developed again. When conservative measures failed to control both problems, I thankfully agreed to the offer of a transurethral prostatectomy.

I accepted that there would be considerable discomfort for the first 10 days after surgery, but expected that it would then rapidly diminish in intensity. It did not. Instead, I continued to have severe burning lower abdominal pain (like a brazier in my pelvis) which was referred to the midshaft of the penis (like having an Allis clamp applied to that part of my anatomy). The pain was aggravated by any physical activity, straining at stool, and especially by riding in a car. The relationship between the onset of pain and any activity was not immediate. A short car ride was slightly uncomfortable, but severe pain would be experienced a few hours later and last through the night. It was not controlled with tramadol and paracetamol, resulting in a spiral of sleep loss, anxiety and a loss of perspective on occasion. There were also periods of what I can only call neuropathic storm, when the pain became very severe for no apparent reason.

There was a sympathetic/motor element to this. When the pain was uncontrolled, urethral sphincter spasm made micturition difficult and there was also a blurring of my ability to interpret sensory messages from my pelvis. It was therefore difficult to decide whether the pain came from the bladder or the rectum, and whether rectal discomfort indicated the need to defaecate or to pass flatus; and it could take many minutes between the urge to pass flatus and the ability to do so, because of anal sphincter spasm. There was an extraordinary relationship between pain and position when lying down, the pain being aggravated by lying on either side or lying prone and the most comfortable position being flat on my back. As a result of all this, for 3 months I led the life of an invalid, spending most of every day in bed, and the rest of the time sitting at my computer, thankfully with a writing project which helped to keep me sane. I made two catastrophic attempts to go back to work. Sexual activity ceased completely.

When I read a CME edition on pain, I suspected that my pain might be neuropathic. My medical attendants had not previously seen neuropathic pain appear so soon after surgery, but were prepared to start treatment on the assumption that the recurrent prostatitis of previous years had predisposed me to this condition. The first attempt to deal with it as such with gabapentin (Neurontin) and tramadol led to urinary retention and the need for catheterisation. That intervention increased the pain. I was therefore started on pregabalin (Lyrica) 75 mg bd and Tramacet 1 - 2 tablets 8-hourly. The results have been extraordinary. I was pain free within 24 hours, normal libido was restored, and I was back at work in 5 days.

I have found that I need to take the pregabalin 8-hourly and not 12-hourly to maintain adequate control of symptoms. The expected duration of treatment is, of course, very uncertain, but it has been life-changing to be free of pain and back to normal activities again. I wish to thank my medical team, who listened and responded to me throughout a very difficult period of my life.

A 65-plus colleague

Jonathan Victor Larsen

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