You Might Have Pudendal Neuralgia and Not Even Know It!

(Disclaimer:  The views in this blogpost are our personal views and do not reflect the views of our institutions. This does not substitute medical advice. Please be evaluated by a physician as necessary.)

Do you have strange burning pain in your pelvis? Have you been misdiagnosed over and over with having a UTI but no amount of antibiotics have helped? Have you seen multiple doctors who either had no explanation for you or told you that it was ‘in your head” leaving you frustrated and angry? You might have pudendal neuralgia.

What is pudendal neuralgia?

Pudendal neuralgia is a painful, burning sensation in the pelvis, anywhere from the vulva, vagina, and clitoris to the bladder and rectum. It affects an alarming one percent of the general population and is far more common in women – about every 7 women for every 3 men – but some doctors believe the prevalence is even higher. Even though this condition was first diagnosed in 1988, it remains one of the most misdiagnosed and underreported pain conditions to date.

Pudendal neuralgia was first diagnosed amongst competitive cyclists; in fact, it was even called “cyclist syndrome.” Since then, it was noted in more and more women who had no history of cycling, but did have a history of childbirth or pelvic surgery. In a vaginal delivery, the pudendal nerve can get damaged from stretching of the pelvic floor by the baby’s head. When it comes to surgery, it could be due to repair of a prolapse, a sling procedure, or even a hysterectomy due to a mesh that is placed, a suture that’s placed, pulling on the nerve unintentionally, or even just a small amount of bleeding that gathers in the area and compresses the nerve. Most patients that develop pudendal neuralgia after surgery have it happen immediately after surgery, but it is often missed and thought of as a normal symptom of post-operative pain. Other causes include pelvic floor dysfunction causing muscle spasms in the pelvis, compressing the nerve, or biochemical injury from diseases like herpes, HIV, diabetes, multiple sclerosis, inflammatory bowel disease, and more.

What are the symptoms?

The symptoms of pudendal neuralgia can vary, but have one common denominator – burning pain in the pelvis, most often misdiagnosed as a urinary tract infection. Irritation of the pudendal nerve can cause overactive bladder syndrome, which mimics a UTI. Sometimes, patients describe painful or spontaneous orgasms without sexual contact. Pain can often worsen with constipation or even sitting for long periods of time. But why is there such a variety of symptoms?

Pudendal nerves derive from some of the lowest levels of the spinal cord. From there, the nerve, one on each side of the body, travels through the buttocks muscles before reaching the pelvic floor. In the pelvic floor, the nerve splits into three branches. One branch goes to the clitoris, one goes to the rectum and anus, and one goes the vagina, cervix, and bladder. Symptoms are dependent on where along this long pathway the nerve is affected, and unfortunately there is no definitive way (no blood test, no imaging study) to diagnose if or where the nerve is affected.

So what can you do about it?

Paying attention to your body and speaking up about this potential diagnosis is the fastest way to get help as the treatment is multifactorial – medications, physical therapy focused on pelvic floor strengthening, lifestyle modifications, and as a last resort, even nerve blocks. In terms of lifestyle modifications, helpful strategies involve pelvic floor exercises, compresses or a warm bath, an anti-inflammatory diet, and seeking treatment for anxiety and depression which are often linked with worsening of pain. And of course, avoid any exercises that involve sitting – switch out spin classes for running and swimming.

We, as interventional pain physicians with a focus in pelvic pain, do perform nerve blocks to alleviate this pain. To perform a pudendal nerve block, we use an x-ray machine to find the target, administer some local anesthesia through the buttocks muscle, reach the pudendal nerve and bathe the nerve with numbing medicine and steroid to calm down its inflammation. As interventional pain physicians, we avoid the vagina or rectum where the pain is heightened, and instead access the nerve through the muscles of the buttocks, making it less painful and traumatic. The length of time of pain relief is varied, so if it is short lasting, we do have ways to make that pain relief last longer through another procedure called a radiofrequency ablation – a fancy term for using heat to prolong the effects, lasting on average 6-12 months.

You don’t need to suffer in silence. We hope this information will help you advocate for your own health and arm you with the knowledge to seek the best team to treat your condition.