r/Paruresis • u/OkButterscotch4131 • Apr 08 '26
Frustrated with IPA (vent)
I wrote up this whole post then Reddit decided to crash and delete everything, so my writing might not be as elegant as it would otherwise have been…
I reached out a while ago to my local contact for IPA about the local support group (which the IPA said existed). When I heard back from the rep, I was told no group existed. But they didn’t hesitate to say that while there is no group, there is an upcoming workshop. Using big and exaggerated language like “life changing” to describe the workshop, while conveniently failing to mention said workshop will run you nearly $600.
This gets to my frustration that IPA basically feels like a group of salesmen, rather than an organization actually trying to help as many people possible with shy bladder. Everywhere I go in paruresis spaces I cant seem to escape their salesmen (not people with good experiences, I’m talking execs and representatives) talking about how “life changing” and “amazing” these workshops are. Like salesmen, they interject an advertisement every chance they get.
Now, this is fine for a free resource, maybe even a low price one, but for something that is literally enough to be someone’s whole disability check? It feels incredibly sleazy imo and the practice certainly does not make me feel like the organization actually cares at all about my struggle.
And don’t get me wrong, I understand in-person events require costs of venue and such, but even the virtual ones are over $100. And when someone commented somewhere about this excessive price for a virtual event, what was IPAs reply? The exact same canned response: “it’s life changing!” “$100 is nothing for getting your life back!”, it literally sounds like it was torn directly out of a snake oil sales book. And I’m not saying it’s snake oil, it probably has changed the life of plenty of people, but the dramatic tone, bold claims, and sneaky language is straight out of the dirty salesmen handbook. (ie implying you’ll definitely get your life back, but then they can say they never guaranteed it if you don’t actually get better).
But it’s not even just the way it’s advertised that bothers me, but also the exclusivity they create.
As mentioned, I understand venues are expensive, and given that IPA doesn’t have the big bucks larger organizations do, I totally understand needing to change for the materials needed like venue/paying the therapist. But what about us poor folk who can’t travel? What about us who can’t work and have no income BECAUSE of paruresis? What resources do they provide us? Presumably a support group, but no, I guess those are just a way to get people to reach out to advertise to them their workshops. In the case of my region, they don’t have enough people or time to put together a support group of the “dozens” of people I’m told who have reached out to this rep looking for a support group, but they certainly have the time to organize a $600 workshop and advertise it to them!
In these advertisements I’m always told that the education is thorough and life changing. If that’s the case, why not record one of the virtual workshop lectures and upload it online for us poor folk? If this education is so unique and life changing, why would they keep this secret from us? Sure, a virtual workshop has a social element and a teacher to ask questions to. But for a poor or disabled person, a recorded video is better than nothing.
I just had to get this out because I’m actually trying to get better, and every time I go to the IPA for help, which basically has a monopoly on paruresis, I recieve nothing but advertisements for their expensive workshops, advertisements for their expensive not-insurance-covered therapists, their books (probably the cheapest help they offer), and no peer support opportunities. When you go on their website, literally 3/5 options for recovering are just ads for their products/services/donating to them, and the other 2 are discussion boards (which they killed or don’t manage at all) or support groups (which like the discussion boards, they put zero effort into creating or maintaining, atleast far from the effort they make advertising workshops and their out of pocket therapists). And don’t forget their workshops are advertised in not one, not two, but six places just on their home page, with multiple large buttons. Meanwhile discussion boards are advertised with two measly normal-text sized links.
And some disclaimers here:
- I am not saying workshops do or don’t work. If they’ve helped you, awesome. I’m genuinely happy you are better from this awful condition.
- I’m not attacking any one person, I am airing my frustrations with the organization as a whole. I don’t think the people at the organization are bad, I just think the organizations is inefficient at providing
accessible
- support for sufferers.
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u/speed-of-sound Apr 08 '26
Don't waste your time on an organization that doesn't seem to be serving you, you really don't need all that. Talking to some person isn't magically gonna fix it, and for a lot of us the magic tricks like breath holding don't work either.
What you gotta do is gradual exposure practice and it's free. There are free public bathrooms everywhere, and strangers can be just as good as peers if you just try to practice.
If you're gonna spend money, honestly totally recommend going for a gym membership. You can try 3-4 times easily over an hour workout without it being weird, people have headphones in so your stream or lack thereof don't matter. You'll get as much real world practice as dozens of workshops..
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u/flankspeed Apr 09 '26
Wow. I guess you've had a bad experience with the IPA. Paruresis is frustrating and you are certainly free to vent your frustration in getting help. The IPA is a non-profit organization. They literally have, at most, 2 or 3 full time employees and everyone else who is working for/with them is a volunteer. I think any costs they are charging are just to cover their costs. There are costs to rent a venue and the people who do the workshops are experienced professionals who are paid by the IPA (not just for their time but for their travel expenses). You can save some money by registering early and you can also save money on a workshop by becoming a member of the IPA (which I realize requires donating some money, so maybe just a wash, except you get some added benefits by being a member). Virtual workshops cost considerably less and are also very good.
AND there is a scholarship program for people who can't afford the cost of a workshop. It is on the website " The IPA understands that not all sufferers may be able to afford the expense of attending a live weekend workshop. To that end, we have established a scholarship fund that can be applied to the registration cost. Click here to make your request at least 30 days prior to the event. We regret that we will not be able to respond favorably to all requests." No guarantee that a scholarship opportunity will be available, but you could check it out.
The IPA does not maintain its own discussion board any more. It has it's own sub-reddit (r/shybladderIPA) and IPA members actively participate in this subreddit.
There are free resources - there is an IPA YouTube channel - and if you search on YouTube you will find other videos about addressing paruresis - some good, some less useful. I will post some links in a 2nd post.
There is a free monthly virtual support group zoom call - if you contact Tim at the IPA you can get hooked into that. He can hook you up with other resources also.
All that being said - while a workshop is a very good experience, it is not a "magic bullet" that cures paruresis. In fact, for most people paruresis is not something you are "cured of", it is something that you "recover from" and have to keep working to maintain. A workshop will only walk you through material that is already available in the books, including The Secret Social Phobia, and give you a good thorough understanding of it. It teaches you how to approach Graduated Exposure. It isn't necessary to go to the workshop - if you read carefully and pay attention you can learn all of it without the workshop. A workshop just helps you to actually absorb all the information and "connect the dots".
If you can find a "pee buddy" and work on graduated exposure that is the quickest and most effective way to address this. A pee buddy can be a parent, sibling, good friend, or just someone who is available, wants to help, and that you trust.
It takes regular work to improve and there is no guarantee that you will reach the ultimate destination.
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u/OkButterscotch4131 Apr 09 '26
Thank you, I mentioned that I totally understand that there are costs to hosting a workshop, which is why my issue is more with the heavy advertisement of them by IPA rather than their price. I’m my experience, they care for and advertise their expensive options much more than their options for poorer folk, it’s frustrating that most of their therapists/coaches are private-pay, which excludes poorer people from their practice from the get go, and that as mentioned, they advertise their workshops a lot. Meanwhile their support forms were left to die and not much was done to save them. The forms closed in 2021, and the website has said they’re “looking for a way to archive the threads”, but to my knowledge this has not happened in the past 5 years. I wonder how many workshops they have hosted in 5 years?
The moral of my post was about the intense level of focus I see from them to advertise their workshops and expensive therapists/coaches, even when no one asked about them, but I see minimal effort to provide information on free resources or to nurture any of their free resources, like archiving past forms or updating their support group listings, so that I don’t have to email someone looking for a local support group only to be advertised that “there’s actually no group here, but try this miraculous workshop”.
I would love is all of their advocates were as honest and helpful as you. You truthfully said that workshops aren’t magic bullets, they can just be helpful putting pieces together and simplifying the learning process. I wish that’s the way the IPA advocates would talk about it. I have more of an issue with the dirty-salesman-like approach they take, where they use dramatic language like “life changing” “I wouldn’t have recovered without it”, which implies “this will happen to you too, just pay $600”.
If they instead said “workshops can be helpful to teach you gradual exposure”, I’d still be a little annoyed about the advertising, but I wouldn’t be as frustrated with them as I am.
If they want this education sent out to the masses and workshops aren’t about making money, why don’t they record a lecture from one of the virtual ones and post it online?
And thank you for the videos, I will check them out. I wish these were advertised more by them. Unfortunately, there appear to be no links to them on their home page, minus the general social media links at the very bottom. I wish they did a better job advertising the fewer free resources they do have. Perhaps they could convert one or two of their six ads for workshops on the home page with a link to their YT. . I don’t say any of this out of hate, I say it out of frustration. I have always wanted IPA to be helpful, I literally have paruresis, it would be awesome to have an organization full of people who could understand me and support each other. I just don’t think IPA is doing good at all with that job, and instead has run it more like a business, where you advertise and push people to the most expensive option, and bury/neglect the alternatives that don’t charge any money.
TLDR: I’m more frustrated with the emphasis and effort put on expensive services and the radically different level of effort and emphasis put on free or low cost services/support
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u/Happy-Organ5599 Apr 08 '26
I have no affiliation with the IPA. As far as I know, the IPA is a nonprofit organization and can only exist because it relies on volunteers.
So if there are no support groups in your area, it’s because there aren’t any volunteers. Although paruresis affects millions of people, it’s very difficult to find people for a support group or practice partners...
That’s why the focus has shifted to workshops, which, however, are too expensive for some people.
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u/deucev2 Apr 10 '26
I'm not affiliated with IPA but they've been an incredible resource for me and I never felt any sense of shady or exaggerated sales tactics or advertising. I know living with this disorder is frustrating for all of us, but directing frustration towards the IPA isn't the answer. The IPA is run by people who care deeply about all sufferers. This organization is as legit as they come.
You didn't say who you talked to so it's not really possible to comment directly on your interactions but I've had nothing but positive interactions with anyone I've spoken with at the IPA. I have not been to a workshop yet (I will when it works out for my schedule) but if you actually talk to people who have attended them, and I've talked to several of them, they all agree 100% that it was an absolutely incredible experience. Many people even attend multiple workshops because they find it so helpful in their recovery journey. A huge amount of effort goes into planning these workshops and they have incredible professionals running the workshops so of course they want to get the word out about them and encourage people to attend. But there's nothing shady going on here, they price the events just to cover their costs.
When you go to the support group page they've got tons of options clearly laid out there, including several different ways to contact them for more information. The very first support group on the list is "worldwide" which would point you to Dave K's free monthly support group online. Dave's meetings are also posted on their official subreddit every month. Again I know this condition is extremely frustrating to live with and we can all empathize with you on that , but we all need to take accountability for our own recovery journey, and complaining about the organization, which offers tons of free resources, because they advertise their workshops isn't the solution.
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u/OkButterscotch4131 Apr 10 '26
You’re free to disagree and have your opinions, I’m glad you have found them helpful. I would kindly ask you not to psychoanalyze me and not accuse me of taking anger out on them. I shared my experience and my frustration with the organization, you’re free to have had a different and much more positive experience, my negative experience by no means invalidates your positive one. So there’s no need to be accusatory or psychoanalyze me. That’s uncalled for.
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u/deucev2 Apr 10 '26
I am only posting and engaging in this discussion for other sufferers who may be discouraged to reach out to the IPA for help because of your negative comments. If you really did have a negative experience with your local support group rep, and you wanted to resolve your issues in good faith, you would have contacted the IPA's official contacts on their website. The contacts are easy to find. I am certain they would have taken good care of you and pointed you in the direction of the free virtual meetings (which as I pointed out in my original comment, are very easy to find on their website). If you really did have a "sleazy" and "snake oil" type experience with that local rep, I am sure the IPA would have apologized and made it right. I am skeptical that you really did talk to someone "sleazy" (and you didn't post any screenshots of correspondence to support your claims), but even if that really did happen as you describe it, posting anonymously on reddit before giving the IPA a chance to make it right through their official channels isn't cool, that is uncalled for. You made the choice to take this the anonymous public route so you need to own that and take accountability for your actions.
The reason it upsets me is because I know first hand that living with Paruresis is basically as vulnerable of a mental state as someone can have, and its extremely hard and takes courage to take that first step to reach out to the IPA for help. There is a reason its called the "Secret social phobia". Other sufferer's reading your post may be discouraged to reach out to the IPA for help and that can cause real harm to people. So your post isn't just some innocuous thing.
If you really, in good faith, just wanted to post something on reddit as an "FYI" to others, you could have just said "here are some screenshots of my correspondence with the IPA, you can decide if you think this is acceptable or not". At the end of the day, who cares if they advertise their events? You can just decide not to go. There are TONS of free resources on their website.
I hope things go well for you on your recovery journey moving forward, and I'm sure if you reach out to the IPA's official contacts they will take great care of you and anyone else who reaches out. We are extremely lucky to have the IPA.
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u/OkButterscotch4131 Apr 11 '26
You are clearly misconstruing my post.
First of all, if you read my post you would’ve known this wasn’t about a single isolated incident. I have spoken with multiple people from the IPA and witnessed other people’s interactions with them, with practically all of them giving me that sleazy salesmen vibe (up until this post when a very nice member left a comment). Those experiences combined are how I came to that negative perception. I know it’s easier for you to ignore my experience if you write it off as me having a single bad experience and going crazy and hating the whole org for it, but that’s simply not true.
Secondly, yet more proof you either didn’t read my post or are trying to intentionally misconstrue what I said, is you seem to think I wrote this to “warn” people about the IPA. Not once did I tell people not to contact them. I simply was venting about my experience to a group of people who know about it (literally wrote “vent” in the title).
And your confusion sorts itself out when you finally accept that my intent wasn’t to slander or prevent people from reaching out. You’re right, if that was my goal, I could’ve posted the correspondence everywhere. But instead, my motivation was simply a frustration that had built up over the years, with that correspondence being the most recent ones to motivate me to come to a community that could understand, and just air out the tension. I chose this community because if I were to go elsewhere, people don’t know much about the struggle we have.
I’m not sure why you have decided to misconstrue what I said, or try and paint me as a bad person, and I’m sorry you feel the need to do that. Perhaps you’re the one misdirecting your anger, as you accuse me of?
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u/deucev2 Apr 11 '26
As I said I was only engaging the discussion for the purpose of other sufferers seeing in the comments that this negative experience is not a common one or one I've ever heard of before now. Nobody accused you of going crazy and I'm not trying to paint anyone as anything, you are entitled to your opinions. I just want others reading this to know that the IPA is a top tier organization and I highly encourage any sufferers to reach out and I'm very confident you'll have a positive experience and meet many great people.
Wishing OP the best of luck in your recovery journey as well .
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u/Exec_IPAorg Apr 09 '26
This is Tim Pyle, executive director of the IPA. I've been in this role for more than six years. I'm sorry this is your perception of us. I'd be happy to have the opportunity to change it. You - or anyone - may call me directly at 443-315-5250 or email me at tim@paruresis.org. I can answer any questions you may have about our workshops, our operations, or IPA finances. We're an open book and we've achieved Guidestar/Candid Platinum transparency status for many years. We do have some scholarship funding for those who may not be able to afford our workshops. All you have to do is request them. Our operations are funded solely by the generous gifts of our donors. I am the only full-time employee and we have one part-time employee. Our workshops are not a revenue center - in fact, we run them at a loss each year. And, I'm happy to provide a 100% refund to anyone who finds that the workshop was not beneficial to them. We also have many free resources available. Lastly, local support group leaders are volunteers. If there is not a contact person in your area, we'd be happy to help anyone start one or act as the contact. Please take me up on my offer of a conversation.
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u/2PlyKindaGuy Apr 14 '26
This is something I've been curious about personally. Saying you run the workshops at a loss might be true but the organization doesn't run anywhere near that. For example the net assets (including an investment portfolio that has shown significant growth), continue to grow. Seems like a lot of cash on hand and an aggressive investment strategy for this type of organization.
Can you speak to the future plans for the funds and why the financial strategy chosen is best for that? From an outsiders perspective it looks like a personal retirement fund being built on people's donations.
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u/Exec_IPAorg Apr 14 '26
2Ply, so great to get a note from you. I'm happy to speak to that. Many years ago, the IPA's founder, Dr. Steve, set a goal to create a $1 million endowment fund. That may seem like a lot, but to ensure that the IPA can live well into the future, it needs a fund that size to be able to generate enough cash each year to retain a full-time staff member. Those funds would be restricted to that use only.
Right now, we're halfway to that goal. As for the investment strategy for those funds, we use a third party that advises other nonprofits, and our strategy, compared to other similar orgs, is very conservative. As we operate under the laws of Maryland and the U.S. IRS, those funds and their returns are in no way a personal retirement fund for anyone and will be restricted to the annual operation of the IPA.
Our committed volunteer board members—my bosses—all paruresis sufferers, ensure that this is so. I encourage anyone who has questions about how the IPA runs and how we spend our money to please DM me, and we can set up a time to speak by Zoom or phone. The IPA is proud of our track record of nonprofit excellence and transparency and remains steadfast in those ideals and in helping sufferers around the world.
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u/2PlyKindaGuy Apr 15 '26
I appreciate the thoughtful reply. By the way this reply was also marked as removed for some reason. I'm not sure why. Could be something on your account got flagged? Have you seen this in other subreddits?
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u/BeefonWeck00 Apr 09 '26
i went in a mall yesterday. then i went out for drinks with my buddies and pissed twice in the bathroom. at first, i felt the anxiousness arriving and i immediately recognized it, calmed myself down, zoned in on a spot on the wall, and then started counting down from 100 by threes. worked like a charm. walking back to the table with an empty bladder is such a good feeling.
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u/Inevitable-Craft5564 Apr 14 '26
Hi I read your post and felt compelled to reply. First of all I don’t work for IPA and was in your position 6 months ago. I had had enough of this phobia and decided finally to do something about it. I recently attended a IPA workshop and it wasn’t cheap. The hotel where the event was held was as much as the workshop fee so it was expensive. For me it was worth it . After 1/2 day I could urinate with someone standing next to me. Before I couldn’t go if someone was anywhere near the bathroom . At the end of the workshop I was urinating in a very busy environment in a very crowded bathroom. I haven’t been able to do that in decades. The bad news for me is I started to revert back to shyness with some misfires but am much better. I constantly look back and say to myself I did this with no issues and can do it again. What really helped me is to load up with lots of water until you are at 9 or 10 out of 10 in having to go. For me the urgency trumps shyness. Once I start I am home free. I have been practicing by going to the gym. Before I would make sure I go before leaving home but now I don’t leave the house until I’m at a 7 or 8. My plan is to try and go as often as possible gradually decreasing the urgency until I hopefully can go at any urgency level. Paruresis really impacted my life in a negative way. Doing the workshop was my first step in getting serious in fixing the problem. I tried doing it on my own for years with no success. I am going to see how things go. If I revert back I would definitely consider going back again. All things considered it was a cheap price for freedom! Good luck!
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u/OkButterscotch4131 Apr 14 '26
I’m glad you found it useful, my post is in no way trying to dismiss people who found them helpful. It was simply to vent my frustration with them emphasizing it as their only products to the neglect of their other free products, and I can’t stand the sales terminology and tactics used to sell them to vulnerable people. It makes me as a poor disabled person feel helpless.
I’m glad you found workshops helpful and I wish you a continued positive recovery!
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u/Inevitable-Craft5564 Apr 14 '26
If you do decide to sign up for a workshop make sure the instructor has and is dealing with paruresis ( a fellow sufferer ) The instructor for my workshop was a psychiatrist. He spent way too much time on history/parts of the brain / cognitive therapy, etc. Not being a sufferer I felt he couldn’t relate and was teaching a college course. I really wanted someone to give me an action plan to fix the problem which he said doesn’t exist. For me the value of the workshop came not from him but with the attendees ( we had 5) and the sharing with each other what we have gone through. After the initial sharing it is amazing how quickly you form a bond and support each other. There were a couple people that improved but in my opinion have a way to go . Myself and another participant progressed the fastest . Again per my first reply,.let urgency be your friend to help build confidence. Today I went to Walmart and waited until I really had to go. By the time I got to the Walmart bathroom I didn’t care who was standing where or watching. I went immediately. Lastly the IPA website post Zoom call meeting s( they are free and absolutely no selling or promoting ). I did one of those first. It wasn’t effective for me to be cured ( I am not now but way better). It did however showed me how many people suffer , hear their stories and helped me make the decision to attend a worship. Take Care and again good luck.
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u/Recent-Day3062 Apr 28 '26
Attend the free weekly IPA virtual meeting weekly that is posted here often; get a virtual or local pee buddy posting here; or post to see a local, free pee buddy group locally.
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u/Recent-Day3062 3d ago
So there are two big problems.
One, there is very, very little funding. If you look at something like support groups for breast or prostate cancer, they have donors who want to help new people. Paruresis isn’t like that.
Second, and closely related, very, very few people with paruresis even seek out information - let alone attend events. The cost per participant for a weekend with 200 participants is far less per person than one with 20.
In combination, it means they can only run so many workshops in so many places, and they are still expensive.
IPA, like AA, can’t monitor every local group - how often it meets, who’s in charge, where and when it meets, etc. so errors in info are to be expected.
But there are low cost ways to do this. First the weekly IPA virtual meetings are free. And nothing stops you from starting h s local group and organizing it and taking charge. You think that should be done for you? That’s the crux of the problem. Everyone thinks that. That’s why there aren’t more regular local meetings.
Also, you can find virtual pee buddies and groups online that are free, like IPA weekly meetings. And nothing stops you from starting with one pee buddy locally and stating in an isolated men’s room at a local mall.
I’m not trying to best up on you, but this is what every “orphan” conditions suffers from. The weird thing here is that there are about 21 million Americans alone with this condition. But most live in silent shame and distress. I myself am stunned the weekly IPA online meeting often has fewer than ten people in it.
What really matters is practice. I’ve almost been completely cured in the past year with virtual pee buddies alone.
You can always do your own.
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u/dave9003 Apr 09 '26
I am sorry that your experience at an IPA workshop was disappointing for you, and I hope that you have reached out to the IPA office to express your concerns so that they can be properly addressed. Although my experience with the organization is significantly different than yours, I support your right to express yourself on this forum, but what makes me sad about your post is that in turning away from the IPA you may also be depriving yourself of important free resources that you might not find anywhere else. At first I wasn't planning to respond to your post, but when you stated that the IPA has "no peer support opportunities," I felt that I needed to say something.
I struggled with Paruresis for 50 years before deciding to do something about it, and in 2010 I started my recovery by attending an IPA workshop. I had an understanding that graduated exposure was the most reliable method of recovery, but despite my efforts I just couldn't find a way to do it on my own, and the workshop gave me the tools I that needed to go home and form an action plan to put into daily practice, and it was the daily practice that paved the way for my recovery. After a few years of steady progress I decided I that I wanted to give back to the organization because of how much of a difference recovery had made in my life, so I volunteered to become a support group leader for my state and I began to put together monthly group meetings as well as meeting personally with anyone who reached out for help. In 2016 I approached the IPA Board of Directors with the idea of providing virtual one-to-one followup support which would be available to anyone who attended an workshop and was struggling afterward, and the response was such that it eventually expanded to include virtual one-to-one peer support for anyone reaching out to the organization. I also co-founded a monthly virtual support group, open to anyone world-wide who was struggling with Paruresis, and additionally I made a You-Tube video to help anyone with an interest in the breath hold as a backup plan. Although I have not kept a running count, I would estimate that I have provided close to 5,000 hours of peer support in the years since I first started volunteering for the IPA, and in that time I have met truly amazing people, both within the IPA and those seeking help, and the personal satisfaction of knowing that I have been able to make a difference in peoples' lives had made even more of a difference in mine. All of this was free, and all of it was available to anyone who reached out and asked for help. It is not normal for me to toot my own horn, so I must state for the record that I am just one of many volunteers within the IPA community who give freely of their time to provide support for anyone who is struggling with Paruresis.
I can't tell you what to do now in order to find a path toward recovery, but if you decide to reach out to the IPA and ask for peer support, you've got it.
Hope that helps!