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85 Reviews
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August 15, 2014

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August 15, 2014

I am 63 years old and cannot remember a time when I was comfortable using public restrooms. (I have no memory of what the boys' rooms looked like when I was in either of the two elementary schools I attended.) Throughout my school years, I would "hold it" for the entire day--with the exception of a time or two when it got the best of me and I was sent home with wet pants. On family vacations, I could go six hours in the car without urinating. Life in a dormitory my freshman year in college was agony at times. I'm surprised that I did not do permanent damage to myself while on choir tours that involved travel for an entire day. Despite my paruresis (significant that a red underline indicates spellcheck doesn't recognize that word), I have determined that I am not sitting at home. I have traveled over the years to Europe, Israel, Africa, and South America, never knowing what I might encounter in terms of public restrooms (and it's best that I didn't know--some were real winners!). I stumbled upon IPA about the same time I was beginning to use the Internet. A pending trip to Africa had me particularly concerned, so I contacted Dr. Soifer. (Using aircraft rest rooms has been an issue--especially when there is a line of folks waiting.) This was 14 years ago, and that contact alone gave me confidence--especially given the awareness that I was not alone (or a freak). While I have not attended a workshop, I still may one day. For now, I have good days and bad days--urinal days and stall days (if conditions are anxiety-producing). Probably the best part of my connection with IPA (I support the organization annually) is my growing willingness to share my situation with others, particularly those who suffer from other social phobias or who have loved ones who do. Were it not for Steven Soifer and IPA, none of this would be possible.

Ways to make it better...

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

Expand the support base in order to expand the outstanding work that they do.

More feedback...

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2014

May 30, 2014

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May 30, 2014

I had paruresis for over 4 decades . Not much hope for me . And believe me this is hell . Get this info to school children it could end a lot of suffering . A well spent dollar .

Ways to make it better...

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

There working with horse an buggy and TV with tubes . So outdated . This would be not that hard to hook a smart phone to pee . I feel there stuck on the fear thing an moving ahead would be nice .

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

None

Did the organization use your time wisely?

Badly

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

May 28, 2014

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1 previous review
February 14, 2011

I am 42 years old and have suffered with Paruresis since I was a child. I am not sure was caused this problem. For years I suffered thinking I was the only person in the world with this problem. I... more

May 28, 2014

I suffered for years not know what was wrong with me. I thought I was the only person who had the problem. Once I discovered the IPA, I finally realized that I was not alone and I now had a term for my condition. I had been to doctors in the past and none of them did anything for me. They did not even know why I could not go while someone was in the bathroom with me. Once I discovered that I had Paruresis, I began educating the doctors in my town on this condition. I am and always will be glad for the International Paruresis Associaton.

Ways to make it better...

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

I wish more people would support this great organization. It is the only one of its kind.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2014

February 14, 2011

I am 42 years old and have suffered with Paruresis since I was a child. I am not sure was caused this problem. For years I suffered thinking I was the only person in the world with this problem. I even went to a local doctor, to see if he could help me. He could not help me or advise what was causing this condition. It was not till about ten years ago that I read an article in a national news paper did I realize what the condition was caused and that there was an organazion. I immediately went online to the Paruresis Association website. I finally had a name for my condition and I discovered for the first time that I was not the only person in the world who had this condition.

The Great!

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

This organization provides the information and the assistance to help everyone who is suffering from paruresis.

Ways to make it better...

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

I would not make any changes to this organization.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

How did you learn about this organization?

Newspaper article

When was your last experience with this nonprofit?

2011

November 13, 2013

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November 13, 2013

This organization changed my life. I suffered from paruresis since I was a kid, and thought I was the only one who had it and was doomed to living a severely limited life because of it. Then about 15 years ago I went to an IPA workshop and started reading the IPA message boards and it changed everything. I can honestly say that now my condition no longer limits my life in any way. Steve who runs the organization has been there from the beginning and him & the organization are devoted to making people's lives better. And they really do. I couldn't recommend an organization to donate to more highly.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

November 9, 2013

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1 previous review
June 26, 2010

Suffered with shy bladder syndrome for over 50 yrs before finding this fantastic organiza-tion. Went to local support group a couple of times and then a workshop. Eventually went to four workshops an... more

November 9, 2013

If only IPA had been around when I was in school! I never used the urinals in grade school, junior high, high school or college! I thought I was the only one in the world who could not do this thing that everyone else could do. It seemed so simple for them. Impossible for me.
The harder I
tried, the worse it got. I snuck around. I went in alleys, bushes, held it in for hours and hours. Never told a soul.
Until I got into the long term relationship that I am still in and found some understanding. But that didn't change the fact that I could not pee at the movies .
Then I Googled "pee shy" late one night about eight years ago and up popped the IPA website! I went to the first local meeting that I could get to. I met people who I could talk to about paruresis (it had a name!).
The next meeting I made some progress and started to see that I could get better.
So I signed up for the very next workshop and flew from LAX to Detroit! The best thing Id ever done for my own well being. Before leaving Detroit and saying goodbye to my new friends I peed at the urinals at Comerica Stadium during a Tigers game!
Since then I've used the troughs at Dodger Stadium! That's right! I sometimes still have issues but it doesn't stop me from doing anything or going anywhere anymore. And it never will again!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

June 26, 2010

Suffered with shy bladder syndrome for over 50 yrs before finding this fantastic organiza-tion. Went to local support group a couple of times and then a workshop. Eventually went to four workshops and have lead supports groups for three years. Where this phobia used to run my life and was sometimes a nightmare of searching for a safe place to pee, I am now free to go and do whatever I want. I use urinals at ball parks and gyms and never turn down invitations just because I am not famil-iar with the restroom situations. Life is much more fun. IPA is a great organization. In fact, it is a life saver that is virtually unknown by the public at large.

The Great!

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

terms of improving the quality of my life and the lives of others both directly and indirectly. When one person stops having to hide a secret from their partner or spouse their entire relationship can change for the better.

Ways to make it better...

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

make it more available to people who don't know about it. Shy bladder syndrome is a problem that most people don't understand or think is just a joke. It can limit a person's life to the point where they are actually housebound.

More feedback...

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

meeting people who share this phobia and have worked through the fear and gotten to the other side of it and helped me to get to the other side as well.

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

kind and friendly and open hearted. No one ever was doing this for their own ego.

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

GET THE WORD OUT!!

Ways to make it better...

I could have spent more time with it. Unfortunately I had to work for a living.

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

money, money, money and recognition.

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

Stephen Soifer, the founder, has almost single handedly run this organization for a dozen years with very little money out of his committment to the people who suffer with this phobia. He is a saint.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2009

November 20, 2012

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1 previous review
June 26, 2010

The Workshops that the SBI runs have changed my life in so many ways it is difficult for most people to imagine. I have started living my life for the first time in 30 years without the worry and anxi... more

November 20, 2012

Everyone at the IPA has always been helpful and supportive of anyone asking for help or advice. Since most of the members have "walked the walk", they understand the struggles that each person joining has in their life. My life has truly been transformed since finding the IPA over 10 years ago.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 26, 2010

The Workshops that the SBI runs have changed my life in so many ways it is difficult for most people to imagine. I have started living my life for the first time in 30 years without the worry and anxiety that used to be a part of my life everyday. Through the SBI I have also met so many amazing people and fellow travellers that have offered help and support in my work toward recovery. I don't know of any other venue where you could get help and meet people who understand living with Shy Bladder Syndrome and offer ways to work on recovery.

The Great!

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

every aspect of my life ... work, social settings, family life, dating, etc.

More feedback...

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

The people I have met that have become lifelong friends.

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

very helpful and understanding.

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

Hold regular Workshops in smaller cities around the globe to serve more people that can't travel.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

November 2, 2012

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November 2, 2012

The worst part about paruresis is thinking that you are alone. Through finding the IPA site, I discovered I wasn't alone and there were people out there who could help. With the information on the website, I was able to start down the long road of recovery. I have been to two workshops, and now am a group leader. Not only have I improved, but I have seen improvement in the quality of life of others. Truly a fantastic group.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

October 28, 2012

more


1 previous review
June 25, 2010

I was total avoidant from public restrooms for over 30 years and tried most everything on my own to help myself, to no avail. IPA was my last desperate attempt at to salvage my freedom to live life t... more

October 28, 2012

This organization has changed my life in the most positive way. After 30+ years, I am truly free!!!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

June 25, 2010

I was total avoidant from public restrooms for over 30 years and tried most everything on my own to help myself, to no avail. IPA was my last desperate attempt at to salvage my freedom to live life to its fullest. Before the Shy Bladder workshop I was frightened thinking, "if this does not work, I am out of options to free myself of this social phobia". The end of that workshop weekend brought me to the restroom of Comerica park during the 7th inning stretch. After one "misfire", I left the restroom and went back after a few minutes to relieve myself at a urinal with no dividers in between two men; we were almost toe to toe. Absolutely amazing to see what I was capable of. When I went home, I found support and began practicing aggressively what I learned. About 8 months after that, I can say I am a free man. It is hard work; when you are truly motivated to do it, you too will be free to pee :)

The Great!

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

Participating in workshops

Ways to make it better...

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

Do whatever possible to reach out to the men and women that help exists.

More feedback...

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

It is a hidden gold mine for people with Shy Bladder.

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

Compassionate, understanding, caring and supportive.

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

Bring Oprah out of the closet as a Shy Bladder sufferer - that would help awareness of this disorder.

Ways to make it better...

If the workshop was held in my town.

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

Private funding to be able stay afloat, marketing efforts, etc.

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

I am grateful for IPA and the Shy Bladder Institute. That is why I give back to help fellow suffers in my community.

How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2008

October 28, 2012

more

October 28, 2012

This is the most informative site for those suffering from Paruresis. It was the site that I first discovered the name for my condition, and the efforts of those that run it have led to Urologist and others being educated about it. 5 super stars!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

October 26, 2012

more

October 26, 2012

IPA is a groundbreaking organization for people with shy bladder syndrome. Their workshops have been truly lifechanging for me and many others, and their education and advocacy are second to none. I struggled with paruresis for over 4 decades. The first workshop I attended was a liberating experience, and I have been to many others since then, and become a volunteer with the organization. They are led by a visionary, courageous, dedicated group of people.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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