Pudendal neuralgia

Nerve pain in the area you sit on, worse sitting and better standing. Frequently dismissed, and treatable by people who know what it is.

What it is

Pain in the area supplied by the pudendal nerve: the genitals, perineum and anus. It is neuropathic, meaning it comes from the nerve itself rather than from damage to the tissues.

The defining pattern is positional. **Pain is worse sitting and relieved by standing, and often relieved by sitting on a toilet seat**, because that removes pressure from the area. That single feature is close to diagnostic and it is what distinguishes it from most other causes of pelvic pain.

Causes include childbirth, pelvic surgery, prolonged cycling, trauma, and nerve entrapment; often none is identified.

It is under-recognised and misdiagnosed for years, commonly as prostatitis, bladder pain syndrome, vulval pain, haemorrhoids or thrush, and treated with repeated antibiotics and antifungals that do nothing.

There is no test that proves it; the diagnosis is clinical, using recognised criteria, sometimes supported by a diagnostic nerve block.

Treatment is neuropathic pain medication, pelvic floor physiotherapy aimed at relaxation, nerve blocks, and in selected cases surgical decompression. It responds best to a specialist pelvic pain team.

Signs you might notice

Burning, stabbing, aching or crushing pain in the genitals, perineum or anus.

Worse on sitting, better standing or lying, and often better sitting on a toilet seat.

Worse as the day goes on.

A sensation of a foreign object in the rectum or vagina.

Numbness or altered sensation in the same area.

Pain during or after sex, and sometimes urinary urgency or difficulty.

Usually one-sided, though it can be both.

Needing separate assessment: any bleeding, a lump, unexplained weight loss, or fever; new bowel or bladder incontinence with weakness, which may be cauda equina syndrome and is an emergency.

Do not accept repeated courses of antibiotics or antifungals for pain with no infection.

How it can affect day-to-day life

Sitting is the whole problem. Work, driving, meals, travel and socialising all become difficult, and people describe standing at the back of rooms and eating meals on their feet.

A cushion with a cut-out under the sit bones is genuinely effective and is the single most useful practical item.

Cycling almost always makes it worse and usually has to stop.

The intimate location means people delay seeking help, and then repeatedly fail to be believed, which produces a particular kind of demoralisation. Rates of depression and suicidal thinking in chronic pelvic pain are high, and asking about mood is part of care.

Pelvic floor physiotherapy here is about relaxing an overactive pelvic floor rather than strengthening it, and doing standard pelvic floor exercises usually makes it worse. That is a common and damaging error.

Recovery is usually gradual and partial, measured in what a person can do rather than in the pain score.

Supporting someone well

Describe the positional pattern clearly: worse sitting, better standing, better on a toilet seat. That is what gets the diagnosis.

Get a cushion with a cut-out and use it everywhere.

Stop cycling during flares.

Ask for neuropathic pain medication rather than ordinary painkillers.

Ask for pelvic floor physiotherapy aimed at relaxation, not strengthening. Do not do standard pelvic floor exercises.

Ask for referral to a specialist pelvic pain service.

Ask about a diagnostic nerve block.

Refuse repeated antibiotics and antifungals for pain with no infection.

Get mood addressed; it is part of the condition, not a separate weakness.

Treat cauda equina symptoms as an emergency.

Where to get help

A GP practice for referral to a pain service or specialist pelvic pain clinic.

A pelvic health physiotherapist; Pelvic Obstetric and Gynaecological Physiotherapy list specialists.

A and E for saddle numbness with weakness or continence loss.

British Pain Society list specialist pain services.