Do you have pain in your genital area, rectum, perineum, or anywhere in your sitting area? Is it made worse by sitting? Is the pain getting worse no matter what you do? Have you been running around for a long time from doctor to doctor, and none of them can figure out what your problem is? If you can answer "yes" to some or all of these questions, then you may have come to the right place.

This is an international support community for those suffering from Pudendal Neuropathy (PN). The pudendal nerve carries sensations from the external genitals, the lower rectum, and the perineum (the area between the genitals and the rectum). Neuropathy is nerve damage or disease, so PN can cause symptoms in any of these areas. The chief symptom is pain. If you decide to register and experience problems, please send an email about this to admin@tipna.org.

PN and PNE

Pudendal Neuropathy is frequently caused by a mechanical and/or inflammatory damage to the pudendal nerve. Such damage to the nerve can manifest in a variety of ways, such as vague pains, stabbing pains, burning sensations, pin pricking, numbness, twisting, cold sensations, pulling sensations, or the feeling of sitting on a lump. Pain is usually worse when sitting and less when standing, lying down, or sitting on a toilet seat.

The most common diagnosis, once other things have been ruled out, is Pudendal Nerve Entrapment (PNE). In a nutshell:

PNE is similar to Carpal Tunnel Syndrome, which is also a form of nerve entrapment. However PNE, due to its location, is much harder to treat.

PNE is a nerve condition causing pain for no apparent reason in the area served by the pudendal nerve. No one pain pattern dominates. Pain can be in just one area, several, or all. It can be on one side, two sides, or the middle. Frequently there are also urinary, rectal, or sexual problems.

PNE can occur suddenly or develop over time without one realizing it. It can be caused by frequent prolonged sitting, cycling, repetitive movement , exercising with the legs or for no appearent reason. Frequently "cyclist's syndrome" turns out to be PNE.

PNE is often misdiagnosed as prostatodynia, nonbacterial prostatitis, idiopathic vulvodynia (idiopathic means unknown cause), idiopathic orchialgia, idiopathic proctalgia, idiopathic penile pain, coccydynia, levator ani syndrome, and for those with pain at the ischial tuberosities, as ischial bursitis. About two thirds of PNE patients are women.

Good news. PNE can be treated through physical therapy, injection of steroids, and nerve decompression surgery. However, the earlier the treatment the better.

Who We Are

We seek to learn, share, and care for each other in a highly supportive manner. We must do this, because pudendal neuropathy is so painful and the entire medical profession is still learning about it. Without the information and discussion this community offers, many of us would have never been able to diagnose or treat our condition.

This community offers these forms of support:

1. Information in many areas.

2. Group discussion through messages.

3. Networking by contacting people you meet.

This is a website by and for people with pudendal neuropathy. We are not doctors. While we can provide you a great deal of information about our collective findings, we do not supersede your doctor's professional advice.

Bon Voyage!

To start your explorations, please read the Introductory Frequently Asked Questions. Then read as much else as possible before starting to read the forum messages. While this will take lots of time, self-education is one of the greatest investments you can make in your search for pain relief. If you can grasp even one fourth of what's here, you will know more about PN and PNE than over 95% of doctors today, even specialists.

Thanks,

The folks at TIPNA