June 14, 2000

By John Morgan
With medical adviser Stephen A. Shoop, M.D.
A Doctor In Your House.com

It's halftime at L.A.'s Staples Center. The Lakers and Pacers are neck-and-neck in their basketball playoff battle. If you're a guy, chances are very high you're paying a visit to the restroom.

After standing in line to the point of pain, you move to the urinal. Laker fan fixture Jack Nicholson is on one side of you, NBA legend Magic Johnson on the other. And behind you legions of fidgeting fans impatiently await their turn.

Even though your bladder is urgently telling you it's time to go, nothing is happening.   You wait ... and wait ... and wait. Around you the horde comes and goes as your embarrassment increases.

The third quarter starts, the room empties. In desperation, you head for the privacy of a stall. Alone at last.

If you're lucky, nature's call is answered. But for some, the agony will not end until they drive home to the safety of their own locked bathroom.

If this scenario sounds familiar to you, you may be one of the estimated 1-2 million Americans who suffer from avoidant paruresis - the inability to urinate in the presence of other people.

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The condition affects far more men than women - as many as 9 out of 10 paruretics are male. Women may experience less anxiety because they have stalls and are less exposed when urinating. Those women who do suffer from paruresis tend to have more severe cases.

Often referred to as shy bladder syndrome, paruresis is classified as a social anxiety disorder. In national surveys, 7% of the public responded affirmatively to the question, "Do you have difficulty going to the bathroom away from home?" While it's unlikely that 17 million people have the bona fide medical problem, clearly the number is substantial.

"We really have no idea exactly how many people are dealing with this condition," explains Dr. Steven Soifer, president of the International Paruresis Association (IPA) and an associate professor of social work at the University of Maryland. "Most people are not comfortable talking about paruresis with their spouse of 25 years, let alone their doctor. It may be more embarrassing than incontinence or erectile dysfunction."

While bathroom shyness has been joked about on Seinfeld, Veronica’s Closet, and Ally McBeal, only Howard Stern among celebrities has exposed his bashful bladder problems publicly. For the great majority of sufferers, paruresis is a secret they spend enormous time and energy hiding.

The embarrassment can be so acute, says Soifer, that some people take jobs far below their educational and professional abilities simply so they do not have to face the agony of using the restroom during office hours.

"One man with a college degree ended up taking a paper route just so he could avoid other people," recalls Soifer, who is himself a "recovering" paruretic. "Many people work at home or become self-employed just so they can deal with this."

With the advent of drug testing, shy bladder has cost people their jobs because the inability to urinate is often assumed as avoidance for fear of registering positive. "We know of a parolee who is now serving a five-year sentence because his parole officer ordered a drug test which he could not fulfill," says Soifer. "And in prison they also assumed he tested positive for again failing to provide a urine sample."

For many people with incontinence or impotence, the fear of an embarrassing episode actually motivates them to seek medical help. For paruretics, that anxiety may actually cause them not to seek treatment. As a result, they are held hostage by their bladders.

Performance anxiety

Diagnosis of paruresis should be considered only after a urologist has ruled out any physical blockages of the urinary tract. This is done with a cystoscope, a small, flexible fiberoptic telescope which is threaded through the urethra.

"Sometimes an enlarged prostate can cause outlet obstruction (restricted urine flow), so that must be ruled out," explains Dr. Mark Vogel, chief of the Division of Urology, Cedars Sinai Medical Center and an associate clinical professor at USC School of Medicine. "We also might order a urodynamics test, which studies the bladder filling and emptying."

The difficulty is often that without any evidence of an obstruction, many urologists have no idea what to do. Often they don't even know what paruresis is.

In Soifer's opinion, the litmus test is really the simple distinction between urinating freely when alone and struggling or even failing to urinate when around others. You feel as though you're going to burst but still cannot urinate. The discomfort can be maddening.

One theory is that paruretics are hypersensitive to adrenaline. This over-reaction to anxiety and adrenaline causes the internal sphincter muscle to constrict, cutting off urinary flow. Since the internal sphincter is not under voluntary control, the paruretic is virtually helpless.

Going with the flow

According to Soifer, the best treatment is graduated exposure therapy where paruretics practice urinating during increasingly more anxious settings in real bathrooms.

"We encourage people to go in three-second bursts so we can practice a number of times in one session," shares Soifer. "We often begin with someone waiting outside the door, then progress to entering the room, to standing at the far urinal, until we are standing right behind them."

Soifer reports that 80% of his workshop participants achieve significant relief as a result of this therapy. While the approach may seem invasive, the only alternative is surgery.

Called a transurethral resection of the prostate (TURP), this endoscopic procedure removes a portion of the prostate tissue, allowing freer urinary flow. Despite occasional rave reviews from patients, the downside to this operation can be substantial.

For many, TURP will only make the problem worse, requiring repeated visits to the urologist. On top of that, the vast majority of recipients experience retrograde orgasm where the semen backs up into the bladder.

"If the inability to urinate in public is a patient's sole complaint, then we strongly discourage surgery and refer them to therapy," says Vogel. "Some of the success stories may not have actually had paruresis. We have to be very careful about using this procedure on men under 40, who are typically not very good candidates."

Vogel suggests patients first try alpha blockers, like Flomax, which relax the smooth muscle around the internal sphincter that restricts urine flow. Soifer adds that some people have experienced some relief using SSRIs, such as Paxil, which help reduce their anxiety and allow them to urinate more easily.

"The take-home message for paruretics is get therapy as soon as possible because the longer you wait to deal with your problem, the worse these social anxiety disorders get," advises Dr. Howard Liebgold, a board-certified specialist in physical medicine and rehabilitation who has treated over 8,000 people with anxiety disorders. "Don't get to end of your rope. All phobias and obsessive compulsive disorders are absolutely curable."

If you would like more information about paruresis, contact the International Paruresis Association at www.shybladder.org or call 800-247-3864.

Or contact the American Urological Association at www.auanet.org.

Dr. Liebgold can be reached at phobease@aol.com