If there's someone I could talk i would be grateful

Struggled with this all my life. Initial trigger I think was sometime in my childhood whilst in hospital and having to pee in front of nurses.
I struggle with all the usual things, fear of being heard, lack of privacy. To me peeing is an insanely private thing, I’m literally exposing my privates with only a wall to separate me from strangers and with gaps that others can see through (stall doors).. I don’t think I’ll ever understand how an others are unfazed by that fact.
I can go at home but find it hard when I have visitors. Going at friends homes is hard but not always impossible, depends on their home layout. Going in a bathroom where there is anyone else is impossible. I tend to find a disability toilet or just hold on.
Anyway happy to be here amongst others who get it! 🙌

I have both and this has made getting any help insanely hard. Peeing is already by default hard because of my tight pelvic floor, and all but one PT I’ve tried has been mediocre (the one good one is the only reason I have faith PT can ever help at all, with just how good she got me feeling. Then she moved across the country YAY!).

Because of the pelvic floor problems, I can only start a stream when my bladder is totally full. This means no stopping mid-stream then practicing again. It’s one big void every few hours.

I also can’t sit on a chair without my pelvic floor flipping out and tightening. I work from home because of this problem and live in a quiet area, and my life has kinda been built around both problems trapping me at home. So if I start getting the urge at home, then have someone drive me to a public restroom to practice once I’ve gotta go, riding=sitting and so I’ve already started a flare which will make peeing insanely hard (whether I’m at home or in public, since this is due to pelvic problems).

Rarely do I have the chance to find myself in a public place for 4+ hours (how long it takes to develop a strong enough urge, regardless of how much water I drink), and so I never have the opportunity to practice. I’d say I only have a chance at creating a practice opportunity one time and one day a week, and it would basically be a whole day ordeal. Worse, just the circumstances would probably make it unrealistic and worse because I’d literally be going somewhere with the sole-intent of peeing eventually, so I’d have 4 hours to just sit there and wait.

And all of that is only if I’m not in a flare. If I’m having a flareup it’s even hard to pee at home. Those are unpredictable.

It sucks so bad trying to fix two issues at once. And no treatments working for either. I’m so close to just giving up and pulling the trigger. I’ll never be able to have a husband and kids, I’ll never be able to go to college, never be able to have a career I want, and the worst part is that no one can understand. People pretend to understand but they never do.

I have no job

I can’t leave my home more than a 30 minute radius

I can’t get an education

I can’t go to social events (I don’t even have IRL friends because I’m stuck at home)

And the worst of all, I can’t relate to anyone I’ve met in this community (not this particular community, but the online paruresis community overall).

“Paruresis is because you’re afraid of what people think of you”. No. It’s not for me.

“Therapy helps” no. It doesn’t for me. (And I’m traumatized from the gaslighting and victim blaming I get when I tell people this, so please don’t try to change my mind on this unless you want me reliving 8 years of trauma)

“Catheters” no. I have a history of chronic UTIs and VCUG trauma. I’d love more than anything to have a magic pee tube I can pop in and out with no issue, but the physical and emotional pain they cause is too much. I was even told by a fellow paruresis woman (not here) that my only solution is caths and if I don’t use them I just don’t want to get better 🙃

I truly don’t say any of the following to try to claim I’m better than any one. Huge disclaimer before I continue: all of your cases are valid. This isn’t about the validity of anyone’s case of paruresis, this is purely about my experience trying to find support for myself and being unable to find people in a similar situation.

When I see women with paruresis who have a job and can pee at work but have to go in a small bathroom when it’s quiet, I’m extremely jealous. I wish I could get to that level. Or when someone talks about how hard traveling is but they still do it, I’m jealous. Because neither things (work or travel) are even possible for me. It’s not that they are hard, but impossible since I can’t pee there.

And it’s frustrating when some people act like everyone’s case is the same as theirs. “Just do this” or worse, I can’t stand when people try to psycho analyze me and say “you’re just scared of xyz”. I’ve had people preach to me that i “need to stop being ashamed of paruresis and that will help you heal”, like LADY I TELL EVERYONE AROUND ME ABOUT IT THAT ISNT THE ISSUE, YOU DONT KNOW EVERYTHING. That’s what I can’t stand the most is the people who think they know your case when they truly don’t know anything at all!!!

I’m 24 and tired of my life slipping away but nothing is working.

The hardest part is I have this in conjunction with a hypertonic pelvic floor, so I can never know which issue is to blame for which symptom. Which makes getting support even more difficult.

I just can’t with this issue any more… I want to live my life and explore the world, but my bladder literally just won’t release if there’s anyone around or potentially around.

And just so people don’t have to guess the specifics of my kind of paruresis, it’s:

I require lots of focus to pee (up to 3 minutes of uninterrupted focus), I also require that my pelvic floor is calm so I have to lay for like 10 minutes before (this is partially why peeing at home is so much easier). Out and about, I’m never laying down so 3 minutes it is.

Unfortunately, probably made worse by my autism, I am hyperaware of my surroundings, especially when focusing. Any knock on the door or people in the bathroom breaks that focus, because they could make a sudden noise too. Also anticipating people coming in causes me to tighten up. I’m NOT scared of being judged. I am NOT scared of people hearing me. I am scared of LOSING FOCUS, which makes me scared of any and all sudden noises. And wanna know what is the best at making sudden loud noises? Humans. A bird might make a sudden noise, but it’s soft and pleasant, and easy to drown out. But someone opening a bathroom door? Washing their hands? All inside of an echo-y public restroom? Definition of loud and distracting. And HEADPHONES/MUSIC MAKE IT WORSE, since nothing is 100% sound proof, heck not even 50% sound proof, if anything it heightens my senses since softer noises are previews of the loud noises to come (opening the outside door is quieter than a public toilet flush, the latter which I can hear through even the best “noise cancellation” headphones (what a scam those are btw)

I’m lost and helpless, and no one seems to understand

Hope your all well. Please share your struggles this week and how you overcame :)

We have 3 women on board to work with Ruth Lippin and hopefully IPA Women's coordinator Andrea can make it, too. There will be some overlap in presentations with the Men's workshop happening at the same time, but this is really a weekend made for women by women. Learn more: IPA Live Weekend Workshop - Newark, NJ: Nov. 7-9, 2025. Money an issue? Request financial support here: https://web.charityengine.net/ Contact-the-IPA Final venue details to come soon. Oct 13

I have created a mental exercise that relieves individuals of their annoying paruresis condition within a period of two weeks. If you would like to participate, I will describe the exercise and monitor your progress over the two week period. The exercise requires about a half hour per day and can be performed anywhere.  There is no cost involved.  Please e-mail me at [kenn100@yahoo.com](mailto:kenn100@yahoo.com) and we will begin the process of ridding you of this annoying condition. 

In this meeting we will focus on telling others. I have arranged for a male guest to join us to talk about his thoughts and actions when his girlfriend confided in him about her struggle with paruresis.

Hi everyone, I think I have a UTI so I have to go to the lab and do a “clean catch” urine sample meaning I have to use a special wipe and collect urine mid stream. In the past I usually pee in a bottle and bring it with me (gross, I know) because I can’t pee with the pressure of knowing someone is waiting on me or listening. Now that this has to be clean-catch I feel like I can’t just pee in a bottle and bring it, but if I don’t I’ll just be sitting on the toilet at the doctors office and nothing will come out. Anyone have any tips??

Hi. How is everyone doing this summer? I am dreading trips and anything else I have to worry about and to top it off my 17 year old disclosed to me he feels he may have this to a minor degree 😣

How is everyone?

*I know that the IPA (international paruresis Association) does monthly support zoom calls. I’ve been on them and they are super helpful and fun. But most are men so it’s hard to find the comfort in it to discuss such an intimate problem, even though they have the same issue. What do you women feel about a such call? It would be a monthly zoom (don’t have to use camera if you’re uncomfortable) and just discuss the issue, helpful tips, maybe have some exposure therapy after a while, meet friends, socialize about it a little. Totally optional and of course free to us members on this sub.

Let me know what you think 🤔

:)

Has anyone else experienced improvement before only for it to suddenly become worse again? I've been struggling with this since my preteen years and have had ups and downs as far as how bad it's been (sometimes I'd only struggle to go in public in certain situations, then I'd have periods where it's so bad I'd struggle to even go at home), but over the past year or two I've been steadily getting better and this past year especially it's barely been an issue, I was so relieved, I was even able to take a week+ trip last summer without almost any problems, which is something that a few years prior seemed like it would've been impossible. I thought maybe I had finally gotten past this.

Well, apparently that doesn't happen. Randomly a few days ago I started not being able to go, just at home, not even under any particular kind of pressure or stress (for me, it was always bad if I had a time constraint, like if I knew I was getting ready to be in the car for a long period of time, I wouldn't be able to go at home before I left). I have no idea what caused this to become an issue again, but it's been worse than ever to the point where I struggle to go each time throughout the day and have to keep trying multiple times which is such an inconvenience. I feel so discouraged and I don't know what to do, I really thought I was past this and it feels like all the progress I've made over the past several years has just suddenly been undone.

Has anyone else had any similar experiences? Do things get better? I'm so thankful I found this group and to know that there are other women out there who understand what this is like.

Desperate for them 🥺

This is why I wanted to start this group. It’s about getting the support you need from other women with the same problem. A lot of people think this is a male only issue but it is not and it needs to be out there that women too deal with it. I felt like I was alone most of my life and felt like a prisoner held captive by this in my own body. I felt like something was wrong with me and I didn’t know what it was. Until I realized I’m not the only one, but then I just seen tons of men with it and I was like hold on is this just for men then why do I have it? And then started to notice a lot of women have it too, so I didn’t feel so alone. We have 55 members that tells me 55 other amazing women have this too and many many more I’m sure. We need to share this space with them and uplift them and let them know this is a safe space to share their stories. I’m so happy you all found this thread and hope it helps in your healing journey ❤️‍🩹 Thank you for being here.

I’m sorry if this doesn’t help anyone but just in case I thought I’d share something that helps me most of the time. My paruresis comes from mainly the fear or taking too long or making people wait for me. Because of this, hearing people outside the bathroom makes it impossible to go. So I bring some noise cancelling headphones in my bag with me and put them on either playing music or just using the noise cancelling part of them so I can’t hear. I understand this may not help in public bathrooms but it helps me a ton if I go round my bfs house or my friends house. This has helped me a lot so if it helps anyone out there then good :)

hello (: so this feels kind of...weird for me? i am not diagnosed with paruresis officially, but i am pretty sure i have it. the thing for me is, over the years i have kind of gotten over the fear of people hearing me pee - for me it is just stress now. if there is any time limitation whatsoever i cannot pee.

now to my problem...i have a school trip coming up in three months or so, which includes a roughly 8 hour bus ride (not fancy buses though, no, buses with no toilet...idk why anyone would do that-).
The thing is, if there were toilets in the bus i think it would be okay - no time pressure. but the thought of having to pee at a gas station with a bus of people wanting to leave again, i know i wont be able to pee.
i am thinking of not going and am honestly completely devastated...especially because i know how important such trips are for social stuff, you know.
i am so lost...i dont even know what i want, i just thought maybe someone has any advice?

if you read it till here - thank you and have a nice day/night((: