Dear Dr. Roach: I am a woman on gabapentin for pudendal neuralgia; I take 300 mg three times daily. When taken faithfully, my pelvic pain is under control. My question is: Why do so many doctors have no knowledge of this dreadful disease? I have been to nine doctors, and no one helped me. I finally researched on the internet, brought the info to my primary care doctor, crying hysterically in pain, and asked her if we could try gabapentin. Thank goodness she worked with me; I feel better, but not cured. Can you please write an article about this disease so others may become educated? Why is this disease almost taboo? The pain is so horrendous. — T.R.

Answer: Pudendal neuralgia is a cause of chronic pelvic pain. As you said, it often is incorrectly diagnosed (or not diagnosed at all), and so the true number of people suffering is unknown. Women with PN have pain in the distribution of the pudendal nerve (the genitals and rectum); usually worsened by sitting; does not wake the person up at night; with no loss of sensation; and relieved by a nerve block. The pain may come on or be worse with sexual activity, but it does not have to.

Why did nine of your doctors fail you? Why is it difficult to discuss? I can’t answer those questions. Probably some women are reluctant to bring it up, maybe for fear of being labeled “difficult.” Certainly, many doctors are unaware of the condition.

A specialist in pelvic pain is the ideal practitioner to make the diagnosis. Unfortunately, there are not enough of this kind of specialist. First-line treatment is with physical therapy, especially myofascial release of the pelvic floor. Again, a physical therapist with expertise in the pelvic floor is essential. Medications, such as gabapentin (you are on a low-to-moderate dose) also are helpful.

A minority of women, especially those who develop this after surgery, may benefit from surgical decompression of the pudendal nerve.