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February 4, 2011

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February 4, 2011

I attended an IPA clinic in Baltimore with Dr. Soifer. The clinic helped me, but the in no way cured me. I am not sure it is even possible to truly cure a paruretic with behavioral therapy. The most beneficial part of the clinic was simply talking about this weird thing called paruresis. I had never spoken of it to anyone before going to the clinic. It was an extremely liberating experience. This organization is an extremely important entity. Dr. Soifer thinks there is a cure out there somewhere. I believe there is as well, and with funding the IPA just might be able to help millions become free of this debilitating disorder.

The Great!

I've personally experienced the results of this organization in...

Yes, the gradual exposure does help.

Ways to make it better...

If I had to make changes to this organization, I would...

Give them $2,000,000 dollars and ask that they fund drug therapy research.

August 5, 2010

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August 5, 2010

For 16 years I was suffuring from a mysterious disease that I thought was absolutely unique to me.Literally I damaged my every walk of the life killing my whole confidence in life. I alway assumes that I will die soon.On 29.04.2007 I discovered !!! a site this site.I dont have words to say the amount of joy confidence I got just by visiting that site.Of course my paruresis is not over becase I dint worked on it which I will do very soon ( I am dam confident about getting rid of the I will work on it) but knowing it has almost improvoved my condition at least 40 %. GREAT GREAT AND GREAT

The Great!

I've personally experienced the results of this organization in...

Wonderful, Great simply becase it removes the mental shackles of the sufferes

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How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2007

June 29, 2010
1 person found this review helpful

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June 29, 2010
1 person found this review helpful

For years, more then I remember, I have had a problem urinating in public or semi-public bathrooms. Sometimes, even visiting friends or relatives in their home caused this problem. When I say I was having problems, I mean I couldn't go at all. This affected my life in many ways. My social life revolved around "safe" bathrooms. If I wasn't sure, I would just not go. The problem came to a head when I traveled to England with my wife on a long anticipated vacation for her. I was unable to go to the bathroom on the flight over or the one back. So I was holding it for 7 or 8 hours. That's when I went on-line and found IPA. I signed up for a weekend program and just that weekend changed my life. We talked, we practiced going in different settings and developed some strategies for dealing with the problem. One strategy was to practice with someone else, especially another paruretic. I have been doing that monthly for about two years. Between the seminars I went to, and this monthly peeing practice, my condition has improved dramatically. I no longer "lock-up" before going into a public bathroom. My condition has become much more manageable. I flew to France this year and was able to go on both flights. There is no doubt in my mind that the folks at IPA as well as the other guys I met there have been the reason for this shift. I'm not "cured" but without this organization, my life would be so much more limited. My gratitude to Steve Soifer and the others at IPA and my peeing buddy Andy is great. I highly recommend this organization.

The Great!

I've personally experienced the results of this organization in...

my ability to urinate in places I would never been able to before. It has provided me with an incredible amount of freedom.

Ways to make it better...

If I had to make changes to this organization, I would...

have more workshops/seminars and be able to get the word out more.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

is the no nonsense approach to a problem men just don't talk about.

The kinds of staff and volunteers that I met were...

knowledegable and supportive.

If this organization had 10 million bucks, it could...

help the 7% of the population with this condition.

Ways to make it better...

it lasted longer and was more local

In my opinion, the biggest challenges facing this organization are...

Raising enough money to provide more workshops and information

One thing I'd also say is that...

They helped dispel the shame I felt about my condition.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

This is a very useful group for anyone looking to work on their problems with paruresis/shy bladder syndrome. I attended only one workshop, found it very useful, and will likely attend another one next time it's held in my city.

The Great!

I've personally experienced the results of this organization in...

NY/NJ

Ways to make it better...

If I had to make changes to this organization, I would...

Give it more visibility.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Their service works

The kinds of staff and volunteers that I met were...

Professional

If this organization had 10 million bucks, it could...

Do a much better job of outreach to the general public and solve a very practical problem for millions of people.

Ways to make it better...

they had more workshops in my area, more frequently.

In my opinion, the biggest challenges facing this organization are...

Understaffed and underfunded

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2008

June 28, 2010

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June 28, 2010

I had suffered from "Shy Bladder" for years. I learned of this organization & intended 1 intensive weekend workshop. Not only did I become educated, we did extensive exercises to improve the condition. I have enjoyed 70% improvement just with this 1 workshop & it has made a major difference in my life. I understand they also do advocacy for public bathroom designs, etc.

The Great!

I've personally experienced the results of this organization in...

Intense workshop

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How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2009

June 26, 2010

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June 26, 2010

I have suffered from Paruresis / Shy Bladder for over 25 years and would not have survived without the help of the IPA/Shy bladder institute. I have attended 3 workshops over the years and what I have learned from these workshops has helped me tremendously for what I need to do to overcome my shy bladder. With what I have learned from the IPA I have been able to start support groups here in New York and help others as well. They teach you the desentization techniques which is so crucial to helping overcome this problem. It's also nice to know that the IPA exists and that I always have someone to turn to for help, that is so important. If they did not exist I know I would have no one to turn to and that is very scary. Unfortunately the medical industry hasn't figured out how to treat paruresis effectively whereas the IPA has. The IPA does so much in terms of getting the word out to the world about how awful it is to have paruresis and how it paralyzes ones life and to let others know that help is readily available.

The Great!

I've personally experienced the results of this organization in...

the workshops that I have attended and the support group sessions that I have either led or attended

Ways to make it better...

If I had to make changes to this organization, I would...

help them figure out how we can get national exposure in order to help battle this problem

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

that I am not alone with this problem and there are others out there just like me. The shy bladder institute has brought us together

The kinds of staff and volunteers that I met were...

kind, compassionate and always helpful

If this organization had 10 million bucks, it could...

literally change the lives of every paruresis sufferer out there

Ways to make it better...

The workshops lasted longer so I could get more desentization work in.

In my opinion, the biggest challenges facing this organization are...

having the necessary funds to stay afloat.

One thing I'd also say is that...

I really appreciate knowing the IPA is there and that I can turn to them for help when needed.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009

June 26, 2010

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June 26, 2010

The International Paruresis Association (www.paruresis.org) is a relatively unknnown organisation which can be a life saver. For more than 40 years of my adult life I dealt with being pee shy. I had a phobia which almost always made it impossible for me to urinate if I thought anyone could see me or hear me pee. Although I did not think I was the only person with this condition, I was too ashamed of my shortcoming to talk about it with anyone else. Until I was in my 60's, I scheduled my life around never being more than a few hours away from the privacy of a toilet where I knew I would be safe. Then I discovered the website for the International Paruresis Association, and my life changed. The IPA is an enabling organization which teaches paruretics how to overcome what can be a debilitating phobia. The work is done by a tiny staff who conduct weekend workshops in the U.S. and some foreign countries, and by a volunteer staff who serve as leaders in an international network of support groups. I know of the benefits that can come from working with the IPA. After having attended several weekend workshops and having served as a support group leader for six years, I have first hand experience with people who are now able to do what they had once thought would be impossible for them. And I am such a person. The IPA teachings have enabled us to conquer our fear. Probably every telephone directory in this country contains the names of hundreds, if not thousands, of men and women with paruresis. It is estimated there are millions of us who have this phobia in varying degrees of intensity. But we don't talk about this, and the general public is unaware of us. Only a tiny number of paruretics know there is help available to us – much of it at no cost. Even much of the medical community does not know of the IPA and its services. The IPA is worthy of additional financial support – from government, from industry, and from individuals. It would benefit from having trained staff to raise public awareness of the organization and to make its services more widely available. The IPA could be involved in scientific research to benefit people who are pee shy. And the organization could sponsor legislation to ease the unintended burdens often placed on paruretics. Instead of changing the lives of relatively few people each year, the International Paruresis Association should be changing the lives of many.

The Great!

I've personally experienced the results of this organization in...

learning to loosen the grip of my paruresis and seeing other members of the organization do the same.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

Had Shy Bladder for all of my life, learned to live with it although it altered the way I did everything, from go to a ballgame to going to a movie.... I found the Shy Bladder Institute and through workshops and following their advice, was able to deal with the issue. The support from the group was incredible and they've helped me with this life longdisability.

The Great!

I've personally experienced the results of this organization in...

The changes in my life have been incredible - as a result of their support

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 26, 2010

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June 26, 2010

This organization provides more bang for the buck than many others I know. With the equivalent of only one full-time staff person, it provides workshops around the world for those who suffer from paruresis (about 7% of the world's population, perhaps). Constantly reviewing and improving treatment options, the organization provideds a vital function for those who have no other place to go.

The Great!

I've personally experienced the results of this organization in...

By recovering to a large degree from my own paruresis.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

Once I too broke the illusion of being the only person in the world to have a shy bladder, I found the IPA website and was so grateful for all the information, support and methods available for recovery. What Steve and his team do around the world for people has to be known by everybody so that no one needlessly suffers from what is a treatable phobia. Since contacting the organization and starting the support group I have been able to consistently improve and the quality of my life is so much greater. Had I only known sooner, all the isolation, the secrecy, the withdrawing from social situations and the compromises I made to accomodate a fear and its related anxieties would have been avoided. I think there is room for the organization to expand and work with local health organizations once their credibility is established, in order to help people more directly and with financial support from government tax sources. Otherwise, they are currently doing a great job and I am glad I can be involved.

The Great!

I've personally experienced the results of this organization in...

Speaking with Steve Soifer and Marty Griffone about how to lead a support group successfully. Accessing information posted on the site and sharing it with group members.

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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