August 2005

Highlights
Carol is writing a self-help book about women and paruresis
Wendy has produced a show for television about paruresis, drug testing, and women’s bathroom issues
Want to speak about paruresis on the Oprah Winfrey Show?
Marilyn Monroe and paruresis
Are you a Highly Sensitive Paruretic Woman?
Secondary paruresis: the fear of someone else finding out that you cannot pee near or in front of them
Potty Parity Revisited
Important IPA News, including article that you can print out and take to a urologist or OB/GYN
How do you handle female bathroom attendants?

A. NEW “NEWS” SECTION:

1. From IPA Women’s Forum members:
(a) I, Carol, am writing a self-help book about women who suffer from paruresis. towards educating not only those who have our condition, but also the physicians and therapists who treat them. A lot of my material is based on my correspondence with women who have been a part of the Women's Forum these last 5 years. Among the topics I explore are:

(1) Differences between male and female paruretics
(2) Self Catheterization, other treatment options, and recovery “tips’
(3) Issues and Concerns, such as how to tell others, how to cope with time pressure and fear of people watching you, how to deal with noise or chatting in the bathroom, what to do about traveling in other countries, female bathroom etiquette
(4) Women's Success Stories
(5) The Design of women's bathrooms

Please stay tuned for further information, or write to me at Olmert@aol.com

(b) Wendy has produced a show for television about paruresis, drug testing, and female bathroom issues. Wendy, from WA, is herself someone who was refused a job because of a failure to produce a urine sample due to paruresis. As a result, she took matters into her own hand, joining forces with the IPA and becoming an activist for our cause. She is a frequent contributor to the IPA Discussion Board, posting as “Wendyolympia”. Following the IPA Board of Directors meeting in Seattle last March, Wendy brought in a video crew and interviewed Steve Soifer, Phil Baumgartner (IPA President) and me for a show she was producing on paruresis. The tape has already been shown on a community access TV station in Washington, and plans are being made to distribute the tape to other community access stations throughout the country. Want to help in this effort? Please contact me (Olmert@aol.com) or Wendy at wangy_98220@yahoo.com.

(c) Want to speak about paruresis on the Oprah Winfrey Show?
One of our members of the Women’s Forum and someone else emailed Steve Soifer to tell him that there are two links on Oprah’s upcoming shows to fill out. If you are interested, go to http://www.oprah.com/tows/intheworks/tows_works_main.jhtml and click on “embarrassing medical problems” AND “are you suffering from a strange disorder”. Fill both out differently. Let’s see if any of us get chosen.

(d) Marilyn Monroe and paruresis

One of our female UK members writes:

A few weeks ago, just after Arthur Miller died, there was a funny item in Simon Hoggart's column in the Guardian (leading UK quality left-wing newspaper). It told the story of when Arthur was courting Marilyn, and took her round to meet his mother. She lived in a New York flat with paper-thin walls and when she
went to the toilet she turned on all the taps so that no-one would hear her pee. Next day Mrs. Miller rang her son and said "She's a lovely gal, but Arthur, she pees like a horse!"

2. Do you label your bathroom avoidance behavior abnormal, call yourself “weird” or “crazy” because of it, or judge yourself inferior to others? It just could be you are a Highly Sensitive Person, one personality trait of paruretics that makes you special in a positive way.

Note: the following is not really “new” news, but rather serves as a reminder that we paruretics are very special people

Highly Sensitive People are biologically and emotionally more sensitive to all kinds of stimuli. According to Elaine Aron, author of The Highly Sensitive Person (1996), about 20% of the population is born with this trait.

Ask yourself these questions:

• Are you easily overwhelmed by such things as bright lights, strong smells, coarse fabrics, or sirens nearby?
• Do you get rattled when you have a lot to do in a short amount of time?
• Do you make a point of avoiding violent movies and TV shows?
• Do you need to withdraw during busy days, into bed or a darkened room or some other place where you can have privacy and relief from the situation?
• Do you make it a high priority to arrange your life to avoid upsetting or overwhelming situations?
• Do you notice or enjoy delicate or fine scents, tastes, sounds, or works of art?
• Do you have a rich and complex inner life?
• When you were a child, did your parents or teachers see you as sensitive or shy?

For further information, go to:
www.hsperson.com
www.highlysensitivepeople.com

3. Secondary Paruresis: An Important Concept: Paruresis is not a fear of peeing ... it is the fear of someone else finding out that you cannot pee near or in front of them...it is a question of pride and ego...if you can’t pee, you must be lacking in other ways (paraphrasing IPA co-founder Carl Robbins). He writes: “If you must have pride and self-esteem based on achievement or performance, find something else - almost anything else - other than the degree to which you're able to relax your pelvic floor muscles in the presence of others. Take up golf, karaoke, hang-gliding, competitive kayaking; but do anything to retire from the Urination Olympics.”
Writes one of our Forum participants, in response: “In recent months I have taken up online scrabble, and I'm surprised at myself for being so competitive and taking it hard when I fall far behind...after doing my very best. The feeling is similar to when I can't pee. The frustration, the feeling like I should be able to do this. I really get down on myself, feeling "less" than my competitor. It was so bad one night that I took it to the bath tub (my place to calm my thoughts at night). I really had to analyze myself...what is my problem? Is my ego that big? But after fussing and fuming I realized ego and pride are issues. I want to be good at whatever I do, or at least at what is important to me. I want to excel, and when I don't, I get frustrated. Then I get mad at myself for being like this. So, the bottom line for me is I have to learn to accept I can't be the best at everything I do; there will always be someone who is better. But I need to get it through my head that my best is good enough for me. I am so kind to other people; I need to be kind to myself and say "hey, you've got gifts and talents. You know what they are. You don't have to be good at everything." And that includes peeing. There will always be someone in the next stall who pees without hesitation or who has a nice strong stream. Peeing just isn't my talent. My hesitant trickle will have to do, if that's all I can do. And as we all know, with practice we get better at everything.”

4. Potty Parity Revisited (women need more toilets!)

Anatomy and culture conspire against women in public toilets. Now NYC
Source: Chicago Tribune article published on July 1, 2005.
By Lisa Anderson

New York City has joined the trend for potty parity, along with more than 20 states and several municipalities, including Chicago. . A new restroom-equity law has been passed that will make access to toilets as timely for women as it is for men. New York's City Council decided that restroom redress requires a 2-1 ratio of women's stalls to men's urinals and stalls. It applies to such public facilities as sports arenas, concert halls, theaters, bars, nightclubs and other entertainment venues. The Philadelphia City Council will consider a similar measure this fall, and Florida's Palm Beach County is studying the issue.

Like most potty parity laws, New York's Women's Restroom Equity Bill pertains only to new construction and to renovations involving more than 50 percent of a structure. It does not apply to hospitals, restaurants, municipal buildings, offices, schools or prisons, where long lines for women's restrooms are rare. Smaller establishments can comply with the law by designating gender-neutral or unisex bathrooms.

B. IPA News:

1. NEW FREQUENTLY ASKED QUESTIONS SECTION ON OUR WEBSITE contains a lot of information. One question deals strictly with females who have paruresis. Please go to http://www.paruresis.org/FAQ/paruresis_faq_toc.htm.

2. DRUG TESTING IN THE WORKPLACE: IPA’S MAJOR CAMPAIGN IN 2005/2006, AND WE NEED YOUR HELP

The Substance Abuse and Mental Health Services Administration (SAMHSA), through the Drug Testing
Advisory Board (DTAB), is currently reviewing extensive comments (about 1/3 from IPA) on the newly
proposed drug testing regulations for federal employees (see http://www.paruresis.org/samhsa.htm).

This is an incredibly important issue. SAMHSA's new regulations will help set the stage for new
Department of Transportation and eventually private industry regulations.

We cannot allow SAMHSA to provide alternative testing in addition to urine; it must be as opposed
to urine. Please write your Senators and Representatives about this issue. In particular, if your
Senator seats on the Health, Education, Welfare and Pensions Committee (http://help.senate.gov/)
or your Representative sits on the Government Reform Committee (http://www.reform.house.gov/),
write them TODAY about this issue. PLEASE send a copy of your letter to the IPA office.

3. AMERICAN RESTROOM ASSOCIATION IS LAUNCHED

The IPA has officially launched the American Restroom Association, which has its own board and website now ( http://americanrestroom.org.) One key issue the organization is working on is getting businesses to open their restrooms to the public (which they are required to do by the International Plumbing Codes)

Steve Soifer, IPA Staff Director, represented the American Restroom Association in Shanghai in May, giving a keynote address on the state of public toilets in the U.S.

4. IPA’S LINK TO A VERY IMPORTANT UROLOGY WEBSITE

An article on paruresis has been added to a major urology website (this took a lot of doing), which can be accessed via the following link:

http://www.urologyhealth.org/search/index.cfm?topic=410&search=paruresis&searchtype=and

5. IPA, SBC AND ARA 2005 CHALLENGE GRANT FUNDRAISERS - DESIGNATED GIVING

The IPA has gone to a designated giving program for its fundraising this year and also to support our subsidiaries, the Shy Bladder Center (SBC) and American Restroom Association (ARA). Among our matching grant goals:

a) IPA - a $25,000 challenge grant match from members for basic operating costs. Several of our
members have pledged the other $25,000 for this coming year, and we need our supporters to match
this amount.
b) IPA special conference grant fund - we need to raise $10,000 to sponsor or co-sponsor the
"infamous" scientific research conference that the FDA and NHI won't fund. Once our members and friends
pony up the first $10,000 (as I know they will:), (once we get the money, I think I can raise the
other $10,000 from drug companies, corporations, or someone(s).
c) SBC scholarship fund - we need to raise $10,000 to help defray costs of people going to SBC
workshops for little or nothing.
d) SBC building fund - to create our own treatment facility. Someone could also donate property
(e.g. in Tokyo:), and donate the proceeds to SBC, then build center somewhere we want. The
building/land donation would then be a tax write off for the donor. Stocks, bonds or checks would do just
as well:) Contact me for more details. Oh, and you can have a wing of the building named after
you:)
e) ARA challenge grant - IPA is going to donate $5,000 to ARA - members can match it!
Link to donate: www.paruresis.org/join.htm or www.paruresis.org/acart/ccdonate.htm.

6. THE IPA VERY MUCH NEEDS YOUR FINANCIAL SUPPORT. Please join the IPA if you have not. Please contribute $$$ to the IPA NOW! New ways to donate.
As a non-profit organization, IPA depends on donations from its members. Any contribution is greatly appreciated. Our basic membership is $50 per year.
To donate by credit card via PayPal: go to www.paruresis.org/acart/ccdonate.htm. Or, if you prefer to send in a check, here is the link to the form: www.paruresis.org/join.htm.
OTHER WAYS TO GIVE TO IPA:
(a) If you join the online community called www.igive.com, up to 30% of each purchase you make can go to the IPA -- at no extra cost to you. You have a choice of shopping at over 500 nationally known online
merchants, like Barnes and Noble, Eddie Bauer, Lands' End and PETsMART; your privacy is guaranteed, and you can take advantage of money-saving deals and specials.

(b) You can give to the IPA by selling on eBay. Just list your items with eBay Giving Works – a way to sell certified charity items on eBay. Through eBay Works, you can do well for yourself and do well for our organization. Go to http://www.missionfish.org/ForSellers/forsellers.jsp. Choose the International Paruresis Association (spell it out). You control what to give. Give as little as 10% or as much as 100% from anything you sell ($10 minimum donation required). When you give 100%, eBay donates your insertion and final value fees to the nonprofit, too.

C. Question of the Season:

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

Picture yourself in a hotel, restaurant, or casino. All is quiet, the bathroom is completely empty. Nobody's around -- nobody except for that bathroom attendant!! She just stands there quietly - restocking paper towels or wiping up water around the sink. Would you ask her to leave so you can go? What would you say? Has anyone ever faced this problem?

Carol’s response:
Prior to my recovery, I would really freak out and end up leaving the restroom - I wouldn't even try.
Now, a few years later, I would be able to ignore this person, saying to myself, "no big deal, just another challenge." It is hard to put into words how and when this critical shift in my thinking occurred. Here what we’re talking about is the importance of dealing with and conquering secondary paruresis - the "what will someone think of me if I spend too long in a stall" phenomenon.
In my recovery, 3 key cognitive shifts occurred for me:
1) I finally totally accepted that I have a right to stay in a stall for as long as I want and need (I count, I am important to this planet on a deeper level)
2) I proved to myself that nobody cares.
3) I started to make a game out of my practice sessions. I viewed each attempt as an opportunity to practice, not as a death sentence but as a personal challenge. Then I couldn't wait to play my game.
As I look back, I probably would tell the attendant the truth in order to relieve my anxiety. "I have a medical problem that requires me to take a lot of time in the stall. Please don't be concerned about me."

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