Q: What percentage of the population has paruresis?

A:  Until IPA has funding to do a verifiable study, our best data come from a document called the National Comorbidity Survey[x], a survey of 8,098 people on the prevalence and types of various psychiatric disorders. In this survey, 6.6 percent of respondents noted that they experienced a fear of using a toilet away from home. IPA regards this number as an approximate figure on the prevalence of paruresis, because it does not take into account the severity or duration of symptoms.  One of our objectives is to undertake a more specific study on paruresis to gain more information on how many are affected by the disease and to what extent.

We have another piece of anecdotal evidence, an account from a person in the US Navy that reported when mass drug testing of the 300 shipboard personnel was conducted, ten to fifteen people were unable to provide a urine sample. The person giving the account was placed in a room with the others who failed and all were required to stay until they could provide one, so that is how he knew the number. This works out to between three and five percent. The incident happened between 1986 and 1988, so these were enlisted personnel. Since it is likely that people with paruresis would be less inclined to join the military, we believe the figure of three to five percent to be a lower bound of the incidence of paruresis in the US adult male population. This person's account is in our Best of Board compilation.

Q: What causes paruresis?

A: Paruresis appears to be a complex condition, with multiple factors that contribute to it. One piece of evidence supporting this observation is that standard treatment methods for many well-known disorders do not produce high recovery rates when applied to people with paruresis. If the cause of paruresis were simple, we would expect recovery to also be simple and effective for nearly everyone. As medical science advances, we are learning that individual genetics can play an important role in why treatments that work for some people don’t work for others.

We know that paruresis is classified as an anxiety disorder, owing to the fact that those with paruresis experience symptoms in common with other anxiety disorders. Many with paruresis reported experiencing teasing or other kinds of physical or emotional abuse from family, classmates, or others, particularly if the abusive behavior was in a restroom or related to toilet training.  Currently there is some evidence, most of it anecdotal, that paruresis has characteristics of other kinds of conditions. The most frequently reported ones are forms of depression, Obsessive-Compulsive disorder (OCD), panic disorder, and behavioral addiction. IPA has learned that a large percentage of people suffering from a rare childhood condition known as selective mutism also have paruresis. Recent research also indicates that a drug used for treating epilepsy may be useful in treating paruresis. Just because links to other disorders are suspected doesn’t mean you’re going to become severely depressed, jump off a cliff, develop epilepsy, or end up an addict. But these links are tantalizing and someday will lead to understanding the underlying causes of paruresis. It also helps to be aware of these related conditions so you can take steps to get early treatment if you or your children experience any of them.

The complexity of paruresis’ origin means that a person seeking treatment may wish to look at the disease from many different perspectives, and find a method of treatment that works for you. A great many have been helped by cognitive-behavioral therapy. Some of us have had success using treatments recommended for recovering from OCD. Others have had success with techniques from the recovery movement more often applied to behavioral addictions. Some have used medications originally intended to reduce depression. Some who have had difficulty finding an approach that works have simply accepted this and learned to use a catheter when faced with a difficult restroom situation. But even those people go on to lead normal lives once they have a means of coping with their paruresis.