PNE Symptoms
Frequently Asked Questions

This page is under construction.

To avoid one person having to do too much, and because I'm not that well qualified, we need folks to volunteer to take charge of creating and maintaining the following FAQ pages:

- Symptoms
- Diagnosis
- Treatment
- Dealing with Pain
- Doctors
- General

These are the initial categories. They will probably change as we develop these pages.

The Doctors FAQ page will handle very popular and delicate questions like:
- Who's a good doctor?
- Is so and so a good doctor?
- How can I make the most of a visit to my doctor?
- What have you heard lately about so and so?
- What is so and so's speciality all about?
- Who's the best for such and such symptoms?

These pages will be based on opinion and backed up with facts, such as patient experiences and message quotes. They will be immensely helpful, organizing all sorts of crucial information into cohesive, single topics. As the number of messages in the forum swells to over 10,000, people will no longer be able to learn from reading or searching the messages nearly as well as they can learn from reading the FAQs, as well as the Information pages.

Until the forum is open, see the Contacts page on how to email me.

Thanks,

Jack

1. What are the classic PNE symptoms?

Classic PNE is unexplained pain anywhere in the area served by the pudendal nerve. The pain is easily provoked by sitting, because this increases pressure on the nerve. The pain is usually reduced or entirely relieved by not sitting, or by sitting on a lavatory seat, because this decreases nerve pressure.

The closer your symptoms are to the classic ones, the easier the diagnosis.

Note that pain in the edge of the pudendal nerve area may or may not be PN, such as the pain that some report on the insides of the ischial tuberosities, an area also served by other nerves. Even pain in the pudendal nerve area may not be due to pudendal nerve damage, but to something else, such as vulvodynia/vulvar vestibulitis. The pudendal area is often very tricky to diagnosis and treat. Numbness is another symptom, but is not common enough for Dr. Robert to include it in the classic PNE symptoms. As he states in the article PNE by Dr. Robert:

"They have uni- or bilateral pain in the territory of the pudendal nerve and this pain is exacerbated, if not entirely provoked, by the seated position."

"The site of the pain is in the perineum, and may be anterior (urogenital), posterior (anal) or mixed. Situated in the territory of the pudendal nerve, it is uni- or bilateral and to be distinguished from other regional pains with which it must not be confused (coccydynia, located more posteriorly, neuralgia of the ilioinguinal, iliohypogastric or genitofemoral nerves). In two-thirds of the cases women are affected. The character of the pain consists of sensations of burning, torsion or heaviness, and also of foreign bodies in the rectum or vagina."

"The positional nature of the pain is very suggestive. At a certain point in the case history the seated position provokes or exacerbates the pain. These patients have no pain at night and are comfortable when standing or lying on the non-painful side especially. It is an important point that they have no pain when on the lavatory seat, ie when the painful zone is relieved from pressure. The main daily activities requiring the seated position (work, meals, driving, theaters, etc) are no longer available to these patients, whose mental attitude is one of chronic pain sufferers so obsessed with their miserable state as to be rapidly regarded by their doctors as psychiatric cases."

"Perineal sensation is preserved for long, as is muscular trophicity. Urinary disturbances are usually absent, and sexual problems are related to loss of libido resulting from the pain. Rectal examination is painful opposite the ischial spine. Pressure at this level quite often elicits the same type of pain as that felt spontaneously."

However, there are cases of the pain not being reduced when on the toilet seat, standing, or laying down. My layman's guess is this is because these cases have progressed to a very chronic condition. In a highly chronic case the nerve becomes so entrapped that sufficient pressure to cause pain is always present. This permanent pressure is greater than that caused by sitting, so one's behavior no longer makes a difference. A inflammed ligament, a swollen nerve, nerve scarring, or all these, or even other things can cause permanent nerve pressure. This is why it's important to stop making the problem worse.

If you become so chronic that pain is always present, it is still important to not sit, because not sitting can give inflammation and irritation a chance to recover. Do not fall into the trap of thinking otherwise.

Most cases of PNE are not classic ones, according to Dr. Ken Renney. That's what makes most cases so devilishly difficult for the average doctor to associate with a single condition like PNE, and for even an expert to diagnose without serious testing. Even the PNE surgeon is not sure until they go inside that it's PNE, but it usually is. As Prof Robert says about the small percentage of cases where PNE surgery fails to cause improvement, they were probably not cases of entrapment.