There is hope for women with a debilitating condition that can cause misery for sufferers, says Professor Kerryn Phelps.
the best treatment options
Nerve pain is dif cult to deal with at the best of times, but for sufferers of pudendal neuralgia, 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, explained to me. “When I rst 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.”
What is pudendal neuralgia?
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.
The nerve, which runs from the sacrum in the lower back and along the inside of your “sit bones” in the pelvis, can become trapped by spasm in surrounding muscles or tight ligaments. This muscle overactivity might be set off by cycling, sitting for long periods, horse riding or even constipation.
Previous pelvic surgery or pelvic fracture can irritate the nerve.
The nerve 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.
What are the symptoms?
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 zzing 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 rethra, 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.
What does treatment involve?
Some people 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 signi cant 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.
Treatment involves teaching you how to relax or stretch your pelvic oor muscles, adjusting your daily activities, adjusting your posture and the way you sit, and managing your toilet habits.
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.