January 2005

Highlights
Other Coping Mechanisms for dealing with paruresis
      Female Urinary Pouch
      Learning to Pee While Standing Up
Restroom Issues
      More and better women's restrooms in public facilities
      Eliminating noise in a public restroom
      Female Bathroom Etiquette
      Some pretty funny bathroom humor
How far the IPA has come since 1996
Two success stories from IPA Women Forum members – very inspirational
Article published about female paruretics: Some comments from a female perspective (mine!)
     

A.  New“News” Section

1. Other Coping Mechanisms for dealing with paruresis

As you readers know, the IPA recommends cognitive behavioral therapy as the most effective means of recovering from paruresis, and I can strongly attest to its efficacy. We also suggest you learn to catheterize yourself for those “emergency situations” – the ultimate band-aid.

However, I wanted to mention two other coping strategies which I’ve only read about but have not personally tried.

a. An alternative to using public restrooms: use of a female urinary pouch:

If you have difficulty peeing in public restrooms, consider using The Stadium Pal for Women, a female urinary pouch which can be completely hidden beneath loose fitting jeans or pants and allows users to enjoy events. The pouch is Non-Latex, and contains an Odor-Barrier pouch film. At the bottom of the pouch is a Convenience Drain that connects to the leg bag system (worn on the inner calf). It is one size fits all, and is cut to fit one's needs.

A few men with AP have reported success with the use of Stadium Pal. Now a new version is available for women! I personally have never tried wearing one, but it sounds like a good idea.

www.stadiumgal.com

b. Learning to pee while standing up

For those interested, I’ve identified three websites which offer information on the topic of How to Pee Standing Up, which might at least be of use to some of you who wish to pee outdoors. These devices enable a woman to urinate from a standing position, like a man
One device, called TravelMate, won a prestigious Medical Device Excellence Award at New York City's Javitts Convention Center in 2001.

http://www.travelmateinfo.com/page002.html

http://www.urinelle.biz

http://www.whizzy4you.com

2. Restroom Issues

a. Authors advocate more and better women's restrooms in public facilities:
Read the following article by: Melissa Mitchell, Arts Editor, University of Illinois at Urbana-Champaign

http://www.eurekalert.org/pub_releases/2004-08/uoia-aam083104.php

b. Eliminating noise in a public restroom: the Japan experience

The Sound Princess

An Otohime in a women's room

Many Japanese women are embarrassed at the thought that someone else can hear them while they are doing their business on the toilet (though one wonders: what else would someone be doing in a restroom?). To cover the sound of bodily functions, many women flushed public toilets continuously while using them, wasting a large amount of water in the process. As education campaigns did not stop this practice, a device was introduced in the 1980s that, after activation, produces the sound of flushing water without the need for actual flushing. One brand name commonly found is the Otohime (Japanese: ??), which literally means Sound Princess, and is named after the Japanese goddess Otohime, the beautiful daughter of the sea-king Ryujin (the goddess's name, though, is written with different kanji (??) that mean "younger princess"). This device is now routinely placed in most new public women's rooms, and many older public women's rooms have been upgraded. The Otohime may be either a separate battery-operated device attached to the wall of the toilet, or included in an existing washlet. The device is activated by pressing a button, or by the wave of a hand in front of a motion sensor. After activation, the device creates a loud flushing sound similar to a toilet being flushed. This sound either stops after a preset time or can be halted through a second press on the button. It is estimated that this saves up to 20 liters of water per use. However, some women believe that the Otohime sounds artificial and prefer to use a continuous flushing of the toilet instead of the recorded flush of the Otohime. So far, there appears to be no demand for these devices for men's public toilets, and the devices are almost never installed in men's restrooms.

c. Female Bathroom Etiquette

(1). Information about bathroom etiquette issues, as well replies to such queries as:

* is it appropriate for women to go to the bathroom in posses?
* talking across stall walls... is it gauche or a-ok?
* if the facility fails to provide an appropriate receptacle for used
feminine products within the stall itself, what do you do with them?
* crouch, or sit?

can be found on the International Center for Bathroom Etiquette (http://www.icbe.org.)

To find the appropriate section, click on “Forums”, scroll down to “Call for Female Bathroom Correspondents” (item 5)

(2) Have you ever noticed the noise level differences between men's restrooms and women's?

www.themediadesk.com/files/restrooms.htm

3. Some pretty funny bathroom humor!:

Yes, I know the following links are targeted towards men. So excuse me, in advance, if I offend anyone. I found the content to be quite amusing, illustrating the absurdity of “proper” bathroom etiquette. Keep an open mind! ?

A short animated movie "Proper Urinal Etiquette.", was created a couple of years ago and was recently featured at an animation film festival. The film is 3:30 long. Unless you have a high speed connection, it will probably be difficult to view the film easily. For those that do have a high speed connection, here is the link:
http://www.galaxy12.com/gallery.html

Here are some more links:
http://www.flasharcade.com/game.cgi?urinal
http://www.bathroom-mania.com/en/enhome/enfshome.html
...and finally:
http://www.urinal.net/

B. IPA News

1. 2004-A very good year for the IPA. How far the IPA has come since 1996.

Phil, IPA Board moderator and Board member wrote:

Newbies on the board probably don't understand about how far things have come since the IPA was founded in 1996. I remember finding the original Pee-shy board at that time and there was not much to offer besides companionship (that counted for a lot) and sympathy. There was much discussion of the nature of shy-bladder (paruresis was a name we settled on later after much discussion on the board) Richard helped advise people on urinary catheters. Chris started talking about his adventures with desensitization about a year or two later i believe. Steve Soifer and Carl Robbins also founded the National Paruresis Association about a year later (until we got some Canadian and British members and the name was changed to International)

Then along came 2004, what a year. These are Phil’s nominations for paruresis-related events in 2004, the most important first.

1. 135 IPA members sent in shy-bladder letters to SAMHSA including a 44 page monster from the IPA organization itself (These were the first shy-bladder letters from any organization SAMHSA received and the most received on any subject by SAMHSA)
2. Dr. Steve Soifer attended the December 2004 Drug Testing Advisory Board meeting and was delighted over the reception he received. (The DTAB is a federal board for high-level scientists and public policy makers, seems to have a lot of influence on SAMHSA decisions)
3. IPA founded the North American Restroom Association and the first World Toilet Organization meeting was held in Singapore. David King was the NARA representative.
(this is a big deal in improving the building code for American and world restrooms)
4. Kenneth Kaufman, Departments of Psychiatry and Neurology, UMDNJ, issues Article: Monotherapy treatment of paruresis with gabapentin. (DATED JAN 2005) (Important-Patient's paruresis symptoms tracked up and down with medication dosage of gabapentin, an epilepsy drug. At higher levels, paruresis symptoms largely disappeared which seems to correlate with new theories about anxiety) This drug is available off-label.
5. D-cycloserine, a former tuberculosis drug, shows promise in fear extinction per National Institute of Mental Health, (Internet currently has several stories about the potential of this drug for treating everything from alzheimers to autism) This drug is available off-label.
6. IPA committees are created for Drug Testing and Education Issues. The Education Issues have to do with an initiative by at least one congressman to get more drug testing of High School and younger students. DATIA members also were encouraged that drug testing might be expanded into schools.
7. Breath-holding reported several times on IPA Discussion Board as a backup-aid.

2 . BUT WE STILL VERY MUCH NEED YOUR FINANCIAL SUPPORT. Please join the IPA if you have not. Please contribute $$$ to the IPA NOW!

A message from Steve Soifer, IPA Executive Director:

For those of you who don't know yet, we have created two nonprofit subsidiaries of IPA - - the Shy Bladder Center (SBC), to sponsor workshops and do individual sessions with people, as well as the North American Restroom Association (NARA), to work on restroom redesign in the U.S. and Canada. All of our above efforts have gotten some excellent media coverage, some of which is enclosed.
As a non-profit organization, IPA depends on donations from our members. Any contribution is greatly appreciated. Our basic membership is $50 per year.
To donate by credit card via PayPal: go to paruresis.org/ccdonate.html . Or, if you prefer to send in a check, here is the link to the form: paruresis.org/join.htm
If a direct contribution is not possible, please keep in mind www.igive.com/ipa as you begin the New Year. Also, at our newly revised website www.paruresis.org, you can go to our brand new web store to order a variety of products.

Workshops: Changes for 2005:

1. While the cost of the workshops will remain the same, we will be asking people to join IPA separately now, as the organizations are distinct;
2. All workshops, with the exception of international ones, MUST be at least break-even propositions for SBC. Thus, we are going to set a new flexible minimum for the number at workshops at 10. (Note: the ideal range for group work like this is 8-12 with one facilitator). HOWEVER, we will let workshops go with at least 8, AND, if it can be shown that a workshop would at least break even with fewer, we will consider that too.
3. We are going to be stricter with registration deadlines. For proper planning, we need to know a month ahead whether a workshop is a go or not. Your job: REGISTER EARLY! Of course, if a workshop doesn't go, you get your money back or can use it for another one.
4. We are going to try monthly intensives in Baltimore, which are limited to the maximum of four persons. They are the same cost as a workshop. Of course, in the months of the semi-annual Baltimore workshops (May and November), there won't be any.

3. Two success stories from IPA Women Forum members – very inspirational!:

Best vacation ever
I recently flew from NY to Colorado (with a stop over). Two years ago I would not have considered this trip, at least not without GREAT anxiety. I am still in disbelief that I made this trip with no nervousness at all. From start to finish. I didn't have any misfires. I was able to pee in the airport restrooms (sometimes it took a while) and on the planes (with low urgency). My friend's house was easy, and when we went places, I'd tell her it might take some time. She is fine with it. I was even able to go in the woods a few times, which I always get a kick out of.
What I want people to know most of all is this: things can get better. I never would have believed this a couple years ago. This was the most desired trip of my life. The fact that in previous years I would not visit my best friend because of AP was sad and frustrating. With encouragement from this board, realization that cath use isn't a bad thing if needed, telling others, and desensing bit by bit, I have been making continuous progress.
My mom said "you are cured." This tells me she does not understand the nature of paruresis. I know I'm not cured. I still have many undoable bathroom situations. But I'm getting better.
Getting my life back would not be accurate, because in some respects, I never had one. AP raised such havoc with me that I could never be relaxed for travel or many other things. I feel more like I'm getting a life for the first time at age 46.

A New Life
I also, feel that my life is just now starting. I'll be 49 next month and have just started college. I had actually gone to this same school in 1973, but failed and dropped out due to my AP interfering with everything.
I plan on eventually going to veterinary school and finally fulfilling a lifelong dream to be a doctor. So what if I'll be the oldest one in my class? :)
Before finding IPA and learning that many others share my affliction, I lived a life of high anxiety and stress. After telling my friends and family about my problem (plus taking Paxil) the anxiety has all but disappeared. I've cathed for many years but hate to do it and always wished I could pee like a "normal" person. Now I can pee in many situations without experiencing the heart-pounding terror that used to accompany me in public restrooms.
I recently flew to Salt Lake City, then drove to Yellowstone Park (a 5-6hr, trip). I had to find restrooms along the way and it was surprisingly easy to pee in a variety of situations. Once I arrived at the park, I had very little trouble using the bathrooms there. Of course, I had brought my catheters along, but only needed to cath once in 10 days (when I had waited too long and my bladder was too full to contract properly - a result of many years of holding my urine too long according to my urologist.)

4. Article published: Some comments from a female perspective (mine!)

No laughing matter: BASHFUL BLADDER SYNDROME LEADS TO SOCIAL WITHDRAWAL
By MEG NUGENT
NEW JERSEY STAR-LEDGER STAFF

David from Ohio to Atlantic City 11 days ago to check out the casinos. But it wasn't the slots or poker tables that drew him to the gaming halls. It was a different kind of high-stakes gamble: Trying to cure his phobia of urinating in public restrooms. David, 49, has a type of social phobia known variously as bashful bladder, shy bladder syndrome, pee-phobia, bashful kidneys, urophobia - or, if you prefer the official, clinical term - paruresis, according to the International Paruresis Association in Baltimore, Md. (http://www.paruresis.org).

If you feel an urge to snicker, refrain, please, because a severe case of bashful bladder can have a devastating impact on the lives of paruretics, according to Steven Soifer, a recovered paruretic, executive director of the IPA and author of "Shy Bladder Syndrome: Your Step-by-Step Guide to Overcoming Paruresis" (New Harbinger Publications, $13.95).  "People have been literally housebound by this problem, people have divorced over this problem. People in their 40s and 50s have not dated because of this problem," said Soifer, who is also a licensed social worker and a professor of social work at the University of Maryland, and who served as facilitator for the Atlantic City workshop.  "I know hundreds of people who chose their form of employment based on paruresis," he said, adding that many paruretics choose a line of work that allows them to stay home, where they have almost unlimited access to their own, private bathrooms. Some who work outside the home will stay in the same dead-end job for years because they know the exact locations of the "safe bathrooms" in their places of business - namely, the ones with doors that lock and with only one toilet or urinal.

The public bathrooms found in the Atlantic City casinos were perfect places to help his five workshop attendees begin to get over their paruresis, said Soifer, who conducts two workshops a month and has done them in such far-flung locales as Australia and Great Britain. "I've been in a lot of casino bathrooms," he said. "They're spacious and huge, and they're often not occupied as much because people are too busy gambling."  David, who did not want his real name used, was one of the five men who took part in the weekend workshop. After two days of working up his courage and nipping into as many public restrooms as he could find in the Boardwalk casinos, David went home elated because of this accomplishment: "Walking into a crowded, public urinal and just urinating. I haven't done that in 31 years," he said.

Paruresis cases can range from mild to very severe. Some people can use a public facility under certain circumstances, while other people can only urinate at home, alone, according to the IPA. Kip Siebert, 58, a building contractor from Upper Montclair and a recovering paruretic, said his condition progressed to the point that not only was he unable to use public restrooms, he couldn't use bathrooms in private homes he was visiting. As a result, he said, "I structured my social engagements so they were never more than two or three hours long."

An estimated 20 million people in the United States and Canada have some form of paruresis, according to statistics from the IPA. "It's not uncommon and we treat it quite a bit," said Julia Turovsky, a clinical psychologist and associate director of the Rutgers Anxiety Disorders Clinic in Piscataway. Soifer said the incidence of the phobia is roughly the same among men and women. But many more men than women seek treatment, he said. He explained male sufferers often feel their masculinity is being called into question, while female paruretics don't feel the condition is compromising their femininity. Male paruretics, said Soifer, "feel less adequate as a man because they're not able to stand up and pee like the other guys. The shame and embarrassment piece is huge."

Women have more privacy than men in public bathrooms, but they worry about someone hearing them urinate or seeing their feet from underneath the bathroom stall, Soifer said. Then there's the uniquely female practice of visiting a restroom in pairs or in a group when out socializing. "Women tend to socialize a lot more in the bathroom, and that's a killer for a woman with paruresis," he said. "When women go to the bathroom together, that's something women with paruresis want to avoid like the plague." As a result, he said, they will tend to avoid socializing.

Carol Olmert, 57, of Walnut Creek, Calif., who is a recovering paruretic and the IPA's coordinator for women, said a lot of female paruretics feel a "time-critical factor" - they feel pressure to urinate quickly because there's a line of women waiting outside to relieve themselves. A paruretic usually experiences some sort of physical or emotional trauma associated with going to the bathroom prior to getting symptoms of the anxiety disorder, according to Soifer. The most common one, he said, is "school bullying, when you were in grade school and you're in the bathroom and you're trying to go but someone is behind you and pushes you into the urinal. Or someone climbs over the stall and makes fun of you or they try to break down the stall door."

David's paruresis symptoms emerged not long after he felt excruciating pain when he tried to rush through urinating one time when he was 18. Many times, the trauma isn't very clear cut. Olmert remembered that the onset of her paruresis occurred when she was 13, shortly after she and her mother, while on a family vacation, had an argument about a boy she liked. "It really doesn't matter what the genesis is," Olmert said. "Once it gets triggered off, it takes on a life of its own."  Like most social phobias, such as fear of public speaking, paruresis is a "performance-based anxiety," according to Turovsky, the Rutgers psychologist. The IPA Web site describes the paruretic as being "usually shy and fears being scrutinized or criticized by others when performing in public, in this case, urinating in a public restroom."  Most people have trouble voiding themselves from time to time. But someone with paruresis is continually wracked with worry about going to the bathroom when other people are around. "It's constantly, and I mean constantly, in the mind of a person who suffers from it," Soifer said. You know you need help, said Turovsky, if your aversion to urinating with others nearby interferes with your normal, daily function.

If you think you may have paruresis, you should first get an examination by a physician to rule out any medical causes, Soifer said. He added there could be a physical cause if you're having trouble urinating all the time, including when you're home alone and not just when other people are nearby.  He and Turovsky said the most effective form of treatment for social phobias such as paruresis is cognitive behavioral therapy. The therapy works by exposing the sufferer gradually and repetitively to the source of his or her fear to reduce or eliminate that fear. You can try this on your own, according to the IPA, which advised you should consult a trained behavioral therapist if self-treatment fails.

Soifer, who charges $395 per person to attend his weekend workshops, said he begins with a session in which participants share their own stories about living with paruresis. This can be very cathartic because many paruretics keep their situation a secret. "It's such a secretive thing that no one wants to talk about," Soifer said. "Can you imagine four people getting together and talking about not being able to go to the bathroom?"  Then the workshop is given over to practice, practice, practice. With help from Soifer and each other, participants work on urinating in situations that range from what's safest for them to those that are the most intimidating. Participants do some "fluid loading," drinking plenty of water to keep their bladders full, to help increase their urgency to urinate.  The participants are paired off as partners or "buddies." Soifer, who often acts as a buddy during his workshops, explained in his book, "The role of the buddy is simple: He or she will stand at various distances from you (whatever your comfort threshold will allow), in various bathroom environments, as you attempt to urinate. You give your buddy directions on where to stand. You are in control of your buddy's movements toward you during the graduated exposure process."

Soifer said the buddy may be directed to stand several feet down from the bathroom door, which the paruretic can choose to lock if that gives him or her comfort. Ideally, the paruretic eventually would be able to direct the buddy to stand outside the bathroom door, then inside the bathroom and, in the case of men, to stand directly behind the paruretic as he tries to urinate.  Using the buddy system, David said he was able to progress from being alone in the bathroom of a casino hotel suite to having Soifer and a buddy standing near him while he urinated. Later, he felt so confident, he ventured out with two other workshop participants to practice in some of the casinos' public restrooms. David doesn't believe he's cured yet. But he returned home with a lot more hope than he had before the workshop. "I was so incredibly empowered. I had so much confidence."

C. Question of the Season

What is your major stumbling block(s) on the road to a complete recovery – to the extent that paruresis no longer seriously affects the quality of your life?
Please elaborate!

(Remember, in order to respond to everyone, just click "reply all").

What questions would you like to see posted on this Forum? Also, what can be done to improve greater communication amongst us?

D . Additions/changes/updates to this distribution list

Note: I have added the locations in which participants of the IPA Women’s Forum live, to the best of my ability. If you don’t see yours and want to have it added, please let me know at. Olmert@aol.com