My experience living with Shy Bladder Syndrome – from there to here

By a current 3rd year Arts and Humanities NTU student

Content warning – This blog mentions substance abuse and suicidal feelings which some readers may find triggering

Hello! I'm a third-year humanities student here at NTU and I have Paruresis also known as Shy Bladder Syndrome. Now, If you don't know what this is, then allow me to explain… Paruresis is a medically recognised specific social anxiety disorder affecting those, where the ability to urinate is inhibited by the presence, real or perceived, of other people, resulting in the individual gradually reducing their social and work activities out of embarrassment, humiliation, and fear. Basically, you can't pee when anybody else is around.

This blog post is going to be about my personal experience with the condition before and while I've been at university and the effect it's had on my life, and my ongoing recovery.

I wanted to write this blog post to not only raise awareness of shy bladder syndrome but also to try and reach out to those students who may be suffering from this condition and showing them that they don't need to suffer in silence and that there is a way forward.

The first thing you need to know about shy bladder syndrome is that it can happen to anyone. Any gender, any sexuality, any age. While yes, it is more common in men, it can affect anybody. There's no way of telling what someone's dealing with. This condition isn't caused by one particular thing, and it doesn't discriminate.

My paruresis started when I was 16. I'm almost 23 now. I can't remember the first time it happened, I can't remember the first time I went to the toilet and couldn't go, but I remember that by the time I was 17, it had become a problem to such an extent, that I even found it difficult to urinate in my own home. I don't think it's uncommon for people, to have experiences where they go into a busy bathroom and decide to come back later when it's less busy. But for a sufferer of shy bladder syndrome, it becomes much more than that. I've lost count of the number of times I've found it impossible to go and urinate when other people were around even if I was agonisingly desperate. Slowly Shy Bladder Syndrome took over my life it became all I could think about, it has affected my decision-making, my friendships, and my romantic relationships in a very tangible and significant way.

When I started suffering from the condition, I was determined to keep it to myself and carry on like everything was fine. I couldn't bear the thought of telling people and them not understanding, I couldn't think of the words to try and explain something that I didn't even understand. I felt that if I stopped doing the things I wanted to do or going the places I wanted to go, then I'd let it win. I didn't consider the effect this might have on mental and physical health, because I thought it was just me who couldn't go to the toilet. It's not uncommon for a sufferer of paruresis to keep their condition a secret and feel alone in their experience. That's how I felt as I thought that not being able to go to the bathroom around others was a weird thing that only I had wrong with me I thought I was a freak; I wasn't. I'm not.

Because I wanted to keep my condition a secret, I would go to more and more extreme lengths to hide my condition in social situations, lying about where I'd been for so long, restricting how much I drank to avoid needing the toilet or even going as far as taking painkillers on occasion. I remember I fainted once from being dehydrated because I was too scared to drink any water.

I think the thing that I found the most difficult was hiding it from people, I'd told a couple of friends, but they didn't seem to really understand, and I suppose it's a hard thing to understand if going to the toilet in the presence of other people comes easily to the majority.

The secretive culture that surrounds the condition is part of the reason why it's not a very well-known condition even though this condition is so incredibly common, so common in fact that it's estimated that around 7% of the population have some form of shy bladder and is also one of the leading causes of kidney failure. Because of this secrecy, many medical professionals still remain wholly uneducated about Paruresis. 7% of the student population of NTU is around 3,000 students.

I remember the first time I went to the GP about it when I'd, at last, got the courage, they had no idea what I was talking about, which made me think "wow it really is just me". That's some professionals not all, it just depends on who you get.

So, for years I lived with it, I became used to the everyday stress, the planning, and the secrecy all while trying to maintain a social life and get what I wanted out of life. It all became like second nature.

During this time, I went back to the GP many times, usually when I felt unable to cope with the pressure and other times because I had UTI from holding it in for 15 hours. I also made repeated attempts to get help, counselling etc, but the help that one sometimes requires needs to be more focused and by people that share similar experiences. Especially in situations like this.

In the lead-up to starting university, I found that my condition had somewhat improved, due to my developing coping strategies, mainly through years of practice. However, when I got to Leeds, where I spent my first year of study, I began to find my condition increasingly hard to deal with, I found that the change in environment and the increased social pressure exacerbated my condition greatly.

I probably would've been okay if I stayed in and didn't go anywhere but I didn't want to do that, I wanted to go out and meet new people. I was determined not to let my condition hold me back, which I think was the right choice overall. But I found it very difficult mentally and physically regardless.

During my first term, I began to feel completely crippled by anxiety, I found it hard to sleep and eat, and I was also self-medicating, drinking a lot on my own to help cope. It was like all the pressure I'd put on myself to keep going for so long was catching up with me. By this point, I had been living and struggling with Shy Bladder Syndrome for three years and I was starting to feel like it was completely ruining my life. I just didn't know if I could bear it anymore, in complete honesty I felt suicidal, which as I have since found out is the way many sufferers have felt. I was in a dark place because I thought I'd tried everything and that I was beyond help. I thought things were going to be like that forever. Thankfully I was wrong.

When the pandemic began, I moved back to Nottingham and transferred to NTU for my second year, moving out once again into a student house. It was okay but like many students, the covid restrictions majorly affected our study experience in addition to my ongoing problems with Paruresis. Despite things improving since coming back to Nottingham, I was still dealing with a lot, so I decided to take a leave of absence from university as I really wanted to try and get a more substantial form of help, as I knew that I didn't want to live the rest of my life this way.

Fast forward to May 2022 and I found this charity online the UKPT. (The UK paruresis trust). They run residential workshops, for people who suffer from shy bladder syndrome, helping people develop coping strategies and recovery plans etc. The workshops are run by dedicated volunteers who have recovered or are recovering from the condition. I went to Manchester on one of these residential weekend workshops, in a last-ditch effort to get some help, although I was incredibly pessimistic because I thought I was beyond help, I was wrong, and I'm now getting the help that I need and am making sustained progress in recovery, like never before. After seven years of Shy Bladder Syndrome having way too much of an effect on my life, I finally began to feel excited about the future in a way that I hadn't in years.

Since getting help from the UKPT I've met fellow sufferers and I've been more open with friends about my paruresis, their first response is "I had no idea" and they wouldn't no one would, Shy bladder doesn't discriminate It happens to all sorts of people.

That's why I've written this blog post, for those who might read it, who might be suffering from this condition, and feel they have nowhere to turn and also to help raise awareness to people in general and show that there is the right kind of help out there for you, one size does not fit all. Finally, I'd like to say that there is nothing to be embarrassed or ashamed of, this condition is serious and deserves to be treated as such. Shy Bladder Syndrome can be brutal but it's not a life sentence, there is a way forward and there is support here for you. Don't give up.

https://healthyntu.blog/2023/04/06/my-experience-living-with-shy-bladder-syndrome-from-there-to-here/