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One bleak morning, 'under the power of [Bunyan's] Giant Despair', I typed 'ischial spine', location of my supposed tendonitis, into Google. The words quickly took me to a pelvic pain forum and from there to the site of a rare and obscure disorder known as Pudendal Nerve Entrapment (PNE). I stared at the screen in disbelief. The essential symptoms matched my own. The pain was nerve related. No wonder it fared and played games. Of course it would not respond to the usual medications. Furthermore, its chronic nature probably also meant that by now the control gate and pain pathways were affected.

Just as quickly I closed the site down. The stories of fruitless visits to physiotherapists, chiropractors, osteopaths and acupuncturists; orthopaedists, gynaecologists, urologists, proctologists, neurologists, psychiatrists, even dermatologists; the well meaning but misadventurous testings and treatments, were unsettling reading. The young man in North America who spoke of consulting twenty specialists in five months, and the young woman from Britain who wrote, 'I can't go on', were by no means atypical.

However, the next morning I returned, although not to hover at the edge of Tophet. For the rest of the week, relieved and apprehensive— partly because at last the pain had a name, also because there was no certain cure—I roamed the Internet, downloading information and excluding problems, amongst them ischial bursitis, with which the condition was often confused.

I learnt that entrapment of this nerve caused, for no apparent reason, pain that was characteristically heightened by the mechanics of sitting and bending—activities that increased pressure on the pelvis and thereby the nerve. That determinants encompassed accident trauma, endometriosis, longstanding irritation and scarring of the nerve resulting from prolonged sitting, surgery and complicated childbirth, and sports-related activities like high mileage cycling, weight-lifting and rowing. Also, that discrete variations in tissue mass and nerve routes possibly explained why most people could endlessly sit, ride, or row, while the nerves of others became inflamed and, in due course in the case of an unfortunate few, confined by scar tissue and adhesions.

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I was alarmed to discover that only a handful of physicians and surgeons—in the USA, Egypt and France—offered conclusive testing and treatment.

Nantes—home of the world's leading PNE neurosurgeon, Professor Roger Robert, pioneer of the trans-gluteal approach to surgical relief—seemed to be the centre of choice. In 1987, Robert, together with neurologist Jean-Jacques Labat and radiologist and pain specialist Maurice Bensignor (now deceased), concerned about 'the consistency of complaints of severe pain with sitting' expressed by sufferers of deep, chronic, pelvic pain, began to investigate the possibility of entrapment of the pudendal nerve.

A hundred years ago surgeons had severed the pudendal nerves of patients suffering this intolerable pain without knowledge of the underlying condition. But the catastrophic effects of sexual dysfunction and incontinence had quickly caused withdrawal of the procedure, and the pain to remain undiagnosed.

Initially, working with cadavers—six men and six women—Robert and his colleagues identified the area known as Alcock's canal, and sites between the two ligaments of the right and left ischial spines, as 'areas in the course of the pudendal nerve where entrapment could occur'. They found, by simulating sitting in the cadavers, that the nerve does not lie fat but 'describes a curve which drags it around the regions of the ischial spine which it straddles like a violin string on its bridge', hence the pressure applied and the pain caused by sitting and bending

The team members had confirmed their research in 1988, in Surgical Radiologic Anatomy, in which they found that the clinical manifestations of entrapment—aside from pain—were few, and the character of the pain, which was 'piercing and very comparable to acute toothache', comprised 'sensations of burning, torsion or heaviness, and also of foreign bodies'. They determined that the symptoms, sometimes precipitated by a fall, could be of 'indolent' development; and, crucially, that 'activities requiring the seated position … are no longer available to these patients, whose mental attitude is one of chronic pain sufferers so obsessed with their miserable state as to be rapidly regarded by their doctors as psychiatric cases'.

This is a pain, summarised the web site, 'sometimes so intense page 10that suicide is considered. But since a change of day to day habits can alleviate the pain some or a lot, people make those changes and learn to tolerate the pain that remains'. The entry further noted that, while occasionally the symptoms had been present for as long as twenty years, most seemed to be in the five-to-ten-year range, presumably because that was how long it took to come across a doctor who could correctly diagnose PNE.

The Nantes specialists reported that the non-surgical approach to freeing the nerve—a series of precise, CT (scan) guided injections of steroid into the area of entrapment—worked for some. Of surgical patients—whose progressive and relentless symptoms rendered steroid infusions impractical—up to two thirds achieved varying levels of relief from decompression and transposition of the nerve, while the rest experienced no improvement or a worsening of pain, usually because the nerve had been badly damaged. Additionally, and a potentially successful surgical outcome aside, the pain could increase for up to a year owing to the handling of the already traumatised nerve.

I checked the Comparative Pain Scale—a PNE-tailored assessment devised by an American sufferer. The scale provided for the subjective comparison of pain with clinically established levels of pain and behavioural change. It divided colour-friendly sections headed Minor Green, Moderate Yellow and Severe Pink into subgroups which ranged from the One of the 'barely noticeable pain [of] a mosquito bite, or a poison ivy itch' to the Ten of 'unimaginable' pain causing loss of consciousness.

I decided I was experiencing typically unstable pain, rising from the 'distressing' Yellow Four of 'an average toothache', to an 'utterly horrible' Pink Eight, 'comparable to childbirth or a real bad migraine headache', in minutes.

I was also of the view, having experienced all three readily treatable and short-term comparisons, that their equation with the fatigue and despair relevant to the rare and unreachable entrapment of the burning nerve was too approximate to be useful, even though the terms 'distressing' and 'utterly horrible' seemed close to the mark. And I remained unconvinced that levels of pain could be 'clinically established', for while my own, prolonged experiences of childbirth, page 11for instance, were indeed 'utterly horrible', the experiences of others, according to personal physiology and duration of labour, might be more, or less, so. Pain, like happiness, I adjudged, can be exactly established as a zero or a ten, but only individual thresholds can measure the distance between.

Nonetheless, my options were clear. Either I consult a PNE expert, confirm the entrapment and work towards a form of recovery, or I hope for a remission, as had apparently happened in the past. Surprisingly, I chose the latter option even though early diagnosis and treatment was urged: France was hardly around the corner; the nerve might not be entrapped; the outcome of treatment was uncertain and my twenty-year history of pain rendered the odds doubly unfavourable. It was easier to stop sitting.