Nerve pain is difficult to deal with at the best of times, but for sufferers of pudendal neuralgia (PN), the pain is only exacerbated by the frustrating and lengthy process of being correctly diagnosed.
However, once a diagnosis has been made, sufferers can experience incredible relief at discovering the cause, particularly when they learn that the majority of cases can be successfully treated with a simple course of physiotherapy.
"Pudendal neuralgia is a condition that is desperate for public and professional awareness," physiotherapist Angela James of Sydney Pelvic Clinic, who specialises in the treatment of pelvic pain, explains.
"When I first started treating PN over 10 years ago, I found many of my patients had their pain for many years and had been misdiagnosed and poorly managed, and often had been told they just had to live with it, or take medications and try ineffective surgeries.
"I feel it is slowly starting to improve, but there is a long way to go to have people understand PN the way they understand sciatic pain."
The pudendal nerve is one of the main nerves in the pelvis, processing sensations from the perineum (the area between the genitals), the buttocks and rectum.
Previous pelvic surgery or pelvic fracture can irritate the pudendal nerve. It can also be damaged in childbirth. Men can also suffer from pudendal neuralgia.
There is a need for much greater awareness of pudendal neuralgia because it is more common than most people realise, and effective treatment is available. Sometimes an underlying cause is not found, but once you have a diagnosis you can start to work out how best to treat it.
The main symptom is pain or strange sensations in any of the areas supplied by the pudendal nerve. One of the reasons for the diagnostic confusion, and the often long delays in getting treatment, is that pudendal neuralgia can manifest in many ways. I have heard patients describe it as a shooting electric shock, constant irritating itch or a fizzing sensation in the vulva or around the anus when there is no rash or other external sign.
Patients also talk of a burning or raw sensation in the vagina or urethra, shooting pain in the penis, an aching in the rectum or painful orgasm.
There might be numbness, tingling or itch in the pelvic area, or increased sensitivity to touch. Some people feel a sudden urge to go to the toilet, urination can be painful or there may be pain during sex. Women can feel as though there is a lump in the vagina or rectum, and have convinced themselves they have a prolapse or bowel cancer.
Some people with pelvic pain are mistakenly treated for thrush, urinary tract infection or back problems, but if pudendal neuralgia is left undiagnosed and untreated it can become worse over time, and the stress of living with the condition can also have a significant impact on your physical and mental health if it's not treated.
The happy news is that once this condition is properly diagnosed, there are treatments available. Diagnosis is usually made by listening to the symptoms, rather than expensive scans or other investigations.
Your GP would always start with the lowest level of intervention, which just happens to be the most effective – physiotherapy. Pudendal neuralgia has created an entire new area of physical therapy, with specialised physiotherapists focused on relieving this condition.
See how Pilates can help strengthen your pelvic floor muscles with the video below.
The pain and other sensations can be very distressing, so medication may be needed until treatment provides relief.
If pelvic physiotherapy isn't effective, you may be referred to a gynaecologist with an interest in pudendal neuralgia for further investigation. This might involve ruling out uncommon causes, including benign or malignant growths pressing on the nerve, or scar tissue from previous pelvic surgery or trauma. They can discuss other interventions such as ultrasound, nerve block injections or surgery.