What could be worse than struggling with a painful condition and feeling embarrassed to discuss the problem due to its intimate nature? Such is the case for many who suffer from pudendal neuralgia, a little-known disease that affects one of the most sensitive areas of the body. This area is innervated by the pudendal nerve, named for the Latin word for shame. Due to the localization of the discomfort combined with inadequate knowledge, some doctors refer to the pain as psychological. But nothing could be further from the truth. Unfortunately, discussing the condition with gynecologists, urologists, and neurologists often proves fruitless as most know nothing about the condition and are therefore unable to diagnose it.

Pudendal neuralgia is a chronic and painful condition that occurs in both men and women, although studies reveal that around two-thirds of people with the condition are women. The main symptom is pain in the genitals or in the anal-rectal area and the immense discomfort is usually worse when sitting down. The pain tends to move in the pelvic area and can occur on one or both sides of the body. Victims describe the pain as burning, stabbing, or stabbing, throbbing, stabbing, twisting, and even numbness. These symptoms are often accompanied by urinary problems, intestinal problems and sexual dysfunction. Because the pudendal nerve is responsible for sexual pleasure and is one of the main nerves related to orgasm, sexual activity is extremely painful, if not impossible, for many pudendalites. When this nerve becomes damaged, irritated, or trapped, leading to pudendal neuralgia, life loses most of its pleasure.

So where exactly is the pudendal nerve? It is located deep in the pelvis and follows a path that comes from the sacral area and then separates into three branches, one that goes to the anal-rectal area, another to the perineum, and another to the penis or clitoris. Since there are slight anatomical variations in each person, a patient’s symptoms may depend on which branch is affected, although all three branches are often involved. The fact that the pudendal nerve transmits sensory, motor, and autonomic signals adds to the variety of symptoms that can present.

Because pudendal neuralgia is rare and can mimic other conditions, it is often misdiagnosed, leading some to undergo inappropriate and unnecessary surgery. Early in the diagnostic process, it is vitally important to undergo an MRI of the lumbar-sacral and pelvic regions to determine that no tumor or cyst is pressing on the nerve. In addition, the patient should be screened for infection or immune-mediated disease, as well as evaluated by a pelvic floor physical therapist to determine the health of the pelvic floor muscles and to discover if there are abnormalities in skeletal alignment. An accurate patient history is needed to assess whether there has been trauma or nerve injury due to surgery, labor, or exercise. Tests that offer additional diagnostic clues include sensory testing, the pudendal nerve motor latency test, and electromyography. A nerve block that provides several hours of relief is another tool to help determine if the pudendal nerve is the source of the pain.

One of the most common symptoms that accompanies pudendal neuralgia is severe depression. Some people with the disease have committed suicide due to intractable pain. For that reason, it’s important to consider antidepressants, as they can help decrease hypersensitivity in the genital area in addition to relieving bladder problems. Certain anti-seizure medications reportedly help relieve neuropathic pain, while anti-anxiety medications provide substantial relief from muscle spasms and aid sleep. Uninformed physicians are reluctant to prescribe opioids for a disease that shows no visible abnormalities, but the desperate nature of genital nerve pain requires that opioids be prescribed for these patients. Although medications are not always satisfactory, they help relieve pain for many people. Until the correct treatment is determined, it is imperative that patients with pudendal neuralgia receive adequate pain management, as the pain associated with this condition can be severe.

Treatment depends on the cause of the nerve distress. When the cause is not obvious, patients are advised to initially try less invasive and less risky therapies.

• Physical therapy which includes myofascial release and trigger point therapy internally through the vagina or rectum helps to relax the pelvic floor, especially if pelvic floor dysfunction is the cause of the nerve irritation. If no improvement is found after six to twelve sessions, nerve damage or entrapment may be considered.

• botox It is now used in medical settings to relax muscles and shows promise when injected into the pelvic floor muscles; although finding an expert doctor in this treatment is difficult.

• Pudendal nerve blocks using a long-acting pain reliever and a steroid they can reduce nerve swelling and are usually given in a series of three injections four to six weeks apart.

• If physical therapy, Botox, and nerve injections do not provide adequate relief, some patients opt for Pudendal nerve decompression surgery.

There are three published approaches to pudendal nerve decompression surgery, but there is debate among members of the pudendal nerve entrapment community as to which approach is best. Since there are advantages and disadvantages to each approach, patients face considerable confusion when deciding which type of surgery to choose. Because there are only a handful of surgeons in the world who perform these surgeries, most patients have to travel long distances to get help. In addition, the recovery period is often painful and lasts from six months to several years, since the nerves heal very slowly. Unfortunately, early statistics indicate that only 60 to 80 percent of surgeries are successful, offering at least a 50 percent improvement. Patients whose surgeries are unsuccessful or who do not wish to have surgery have the option of trying an intrathecal pain pump that delivers pain relievers locally and helps avoid some of the side effects of oral medications. Others pursue the option of a neurostimulator either in the sacral area or directly in the pudendal nerves. These are relatively new therapies for pudendal neuralgia, so success rates are difficult to predict. Some pudendalites have devised ingenious pain-relieving contraptions ranging from U-shaped cushions cut from garden pillows to balloons filled with water, frozen, and inserted into the vagina. Most have a favorite cushion to sit on, and many have special computer setups for home and office use to prevent sitting. Generally speaking, jeans are off-limits, so patients review their wardrobes to include baggy pants and baggy underwear, if they can tolerate wearing underwear.

Clearly, more research is required to find effective methods to better manage the pain and debilitation of pudendal neuralgia. But in the meantime, the friends and family close to those who suffer from this devastating disease play a very important role in helping patients cope, thus maintaining the best possible quality of life. Support, love, and understanding are of paramount importance to those suffering from this affliction.