Hi,
I’m a 22 year old student and need help. I apologize that this post has become more of a book but I believe it’s important to tell the story in its entirety and I’m desperate for help and to overcome this.

So it all started in my second year of university just after Covid when pubs and clubs were reopening. I wanted to make up for lost time so me and my friends were going out probably 2-3 times a week and this is when I first noticed shy bladder really having an effect. It started with small stuff like avoiding busy urinals if loads of people were around or occasionally freezing up but I didn’t really care about it too much. Then as the year went on it became that I would only use cubicles and this is when I started to notice that it was becoming a problem as I felt weird that I when always using a cubicle and was always coming up with excuses to my mates as to why I was using the cubicle/ deliberately not going to the bathroom at the same time as them as to avoid an awkward conversation as to why I wasn’t using a urinal.

This then developed into a worse problem when I started freezing up even in the cubicle if there was a lot of people in the bathroom and I then started experiencing worries about the freezing up and if my friends would be waiting for me and confused why I was taking so long. I had some experiences on long journeys to the alps where we were told that we were stopping for 5 mins so people could go to the loo but because I knew I had to go in this time it caused me to freeze up and I was not able to go ,hence I had to hold it for hours at a time which was horrible. At this point I knew it was a bad problem for me and was starting to think about where every bathroom might be in my day to day life and sort of develop a fear of going to the loo in general.

Then I went on a trip which changed my life completely. Me and a group of friends decided to drive up to the mountains in Switzerland in the summer of 2022 and I was splitting the driving with a friend roughly doing 2 hours between stops. The journey was ok ,there were periods where I really needed to go and kinda just held it because of the worry of using a bathroom and failing, but in general I was able to go in cubicles and survived the journey. We were camping in the mountains and it was the first night that it all started. We had dinner and I went to the bathroom before bed like I normally do and knew that we had to get up early for the activities we had planned the next day. Unfortunately my roll mat wasn’t very good so I was quite uncomfortable and was there trying to sleep, then I noticed it. The feeling like I needed to pee was back even though I had just been to the loo like 20 mins before. I thought that’s strange and tried to ignore it and go to sleep. It got stronger so I went to the bathroom again and managed to void a very small amount and then tried to go back to sleep again. Within 20 mins the feeling was back and I started to worry even more. I went back to the loo and used a holding breath technique I had used during my uni time to try to force out the left over urine, I also noticed that my penis was slightly shriveled similar to when going in cold water. Again I was only able to void a few drops and I tried to go back to sleep. The rest of the night was the exact same with trying to go to the loo every 20 mins and barely anything coming out and the pain became worse. I ended up sleeping outside as I was worried that my friends would think I was weird continuously going to the loo. While outside trying to sleep in a camping chair I looked up my symptoms on google ( terrible idea ) the first thing I saw was that it could be a UTI, something I had never had but was aware of and didn’t worry me too much. The other thing I found was a condition called overactive bladder syndrome which from more research I found was an incurable condition and this terrified me. The next day I went to the doctor and was tested for uti which came back negative. The pain was agonizing all the time and I decided to check myself into a hotel as having showers and baths was the only thing that seemed to reduce the pain a little ( when I say pain I mean that pain of when you really need to go to the loo or at least the feeling of). The rest of the week was awful and the pain never went way despite taking loads of antibiotics and painkillers. I decided to get a flight home early as I just wanted to be at home.

Having got back to the Uk and having a hellish journey filled with pain and attempting to go to the bathroom and finding nothing to void at all. I decided to go see a urologist as the problem didn’t get better for a week after returning. I explained my experience and my history of shy bladder syndrome to the urologist to which he said that they thought I had a condition called pelvic pain syndrome and that I shouldn’t worry as it would pass as it was caused by stress and that it was common amounts people with shy bladder syndrome. I left his office feeling slightly relived as I thought things might improve. After a couple of weeks of staying home and struggling to pee in my own bathroom I noticed that I now was able to pee in my own bathroom at normal times like I used to and when I went out I was fine in cubicles in public. The only thing was that I constantly had a feeling like I slightly need to pee 100% of the time and it was driving me insane. I then went to see another urologist that made me do a flow test ( to which I struggled as found in quite nerve racking ) and a camera down my penis to see what was happening inside. He found that I had a tight bladder neck and gave me tamsulosin as a way to help to relax again he also said that I shouldn’t worry about it and that it should be ok. I started taking the pills and things kinda remained that same for a few months, where when at home the pain was less and whenever I went out things tended to feel worse. As I hadn’t seen much improvement I decided to go on Reddit and see if other people had similar problems and possible solutions to help. I found many stories of people with similar problems to me and many of them described it as a problem that is dealt with but not ever fixed. I found that the people with pelvic main syndrome seemed to have more successful recovery than people with tight bladder neck to which most said it’s a problem that never really goes away but as both urologists had given me different diagnosis’s I didn’t know what to believe.

From the Reddit posts and this problem approaching the 4 months mark of constant pain and living day to day life very stressed out I decided to go see the second urologist again. I sat in his office and told him that I’d been taking the pills but hadn’t really improved. He kinda smiled at me and said that the pills were not a cure they were just a treatment and that this might just be something I have to deal with for the rest of my life. I almost burst into tears when he said this and was amazed he said it as if I could just accept this as my new life. He also told me that there was a surgery where the bladder neck was removed or trimmed which could improve my condition but could also affect my ability to have children as it was stop my normal ejaculation from being as powerful so could result in infertility. He also said that the surgery is normally only for men who have a family already so I’d have to wait till that point.

In the car home I felt like my life was over and just couldn’t understand how one night in the alps had caused something so awful to happen to me. The next few , months were awful and I had lots of this never ending feeling and how could I enjoy life anymore when I had this constant pain that ruined any joyful experiences that did in everyday life. I started turning down plans with friends and basically living a life at home as I just didn’t see the point in going out to do things that no longer made me happy because of the pain. In my head I thought there was only two options. 1 : to continue this boring life filled with pain and missing out on everything my friends and I used to enjoy. 2 : to get a surgery that might not even work and might fuck me up permanently. I even had thoughts through my head of how long I could continue to go through this and kept flashing forward and thinking that if this went on it might lead me to take my own life as was this life really worth living if it was filled with pain and just staying at home achieving nothing. I will add I never thought properly about this it’s more a worry of if I have to go through years of pain that I might get to that point but I’m nowhere near that point yet and still have some hope.

I started seeing a therapist 3 times a week and have also started antidepressants which so far I haven’t noticed much change. With my therapist I do EMDR on the trauma of my trip that started this all off and work on trying to reduce stress and convince myself that I’m not going to be like this forever. I also see a physiotherapist once a week to who does acupuncture and internal massage to try to relax my muscles but I don’t really think this helps. Since all this my life is very up and down having days of small amounts of pain and some which I feel as bad as ever. It feels like I’m stuck in a sort of limbo state where I’m fighting a losing battle to make my body feel better and alongside have developed depression and lack of motivation to do a lot of things because they don’t feel worth it if I’m going to experience life with this pain. I had a few days pain free when I started doing this tapping exercise which my therapist gave me where I said statements and listened to a recording while tapping on nerve points on my face and hand. I do find this helped at first but now no longer has the same magical effect that it used to.

It’s been roughly 7 months since this all began to the point I’m at now. The pain is still there on a low level day to day and gets worse when go out. I feel very stuck atm and don’t really enjoy things that much even though I force myself to do social activities and exercise. But I still feel I can never truly be happy until this pain goes away and constantly worry about the future. I feel like I’ve lost the life I used to have and there’s no way of coming back as my body is now by default trying to hurt me and the only way I can stop it is to have baths and avoid activities which is not a life I want or deserve to live.

I came to this forum as I thought that before all this I did have a problem with shy bladder and that with everyone telling me that my problems are caused by stress that there must be someone else who has experienced similar issues or someone who can actually help me because I refuse to accept living my life this way.

Hal

Hi Hal

Mate my heart goes out to you. No-one deserves what you are going through.

First a short explanation about the sphincters: sorry if you already know this. Effectively there are two sphincters leading out of the bladder, the internal and the external. The internal one is not under your control: it is controlled by the subconscious. The external is under your conscious control. When the bladder does not need emptying, the subconscious keeps the internal sphincter closed and it keeps the muscle that surrounds the bladder relaxed. When the bladder wants to be emptied, the subconscious opens the internal sphincter, causes the bladder wall muscle to contract, and the only thing that stops you wetting yourself is your conscious control of the external sphincter. If the subconscious takes fright, it will close the internal sphincter and relax the bladder wall muscle; meaning that though you know you want to pee the body won’t let you.

If you are holding on for long periods of time, the external sphincter gradually goes into spasm and when you are somewhere safe it is difficult to release it; it will release eventually but only slowly. Secondly I think that if this happens a lot, the sphincter muscle will get stronger - like say biceps do with weightlifting - which makes it bulkier and hence restricts normal flow. Secondly if you’re constantly in a situation where the subconscious takes fright it will close the internal sphincter and that again could go into spasm or get more bulky. All this means that it gets more difficult to fully empty.
You do need to limit intake of diuretics e.g. coffee, tea, cola, as these make you need to pee.
End of short explanation!

The main way we can help you is for you attend a weekend therapeutic residential workshop, where we use the CBT approach. You can read about these on our website, and you can read feedback on this forum from those who have attended one. They are very effective at getting you to start improving your ability to pee.

We also run one-day online workshops; we call them virtual workshops. These get run when we have the demand; one was held last Saturday.

But that is in the future. To deal with everyday from now I strongly recommend that you go to your GP and ask to be prescribed intermittent self-catheterisation; having a disposable catheter in your pocket will enable you to empty your bladder anywhere, any time in the cubicle. That will take a lot of anxiety off your shoulders and may make it easier to pee. Just as important, it can help you to fully empty your bladder, which seems to be a problem at present. I know it doesn’t sound attractive to slide a catheter up your penis but I assure you that it’s routine for people with medical problems and I have tried one myself and it really is no big deal, in fact no more than ticklish.
Getting a GP to agree to this is a lottery. I'll give you tips when you get back to me.

I’ll stop here to let you take this on board. Hopefully you will get back to me and we can take this further. I am happy to talk on the phone. If you look on the Contact webpage you will see an email address. Just substitute andrew for info in front of the domain name, then we can exchange mobile numbers. I cant give the email address here as it would be picked up by a spam bot.

We, the charity, will support you all we can to get on top of this.

Cheers

Andrew

Hi Hal,

Reading through your story is heart-breaking and there's so many 'themes' there that I can relate to. My own paruresis was at its worst when I was at uni, and whereas I'm quite comfortable telling people nowadays, at the time it was a secret I'd hide at all costs from my mates and ultimately that only fed into that loop of anxiety. I tried to sort it out with a range of well meaning, but largely unhelpful, GPs and medical professionals (one surprise benefit was that it brought me to CBT psychotherapy, which did at least help me with a number of other aspects of existence, but I digress). So, you've done great so far to find these guys and they will help you. I can say that because they've helped me.

Whereas your experience of this seems relatively sudden, I'm one of those who's had this for a much longer period of time. And why? Because I never really found the right people to help me until recently.

I would very much recommend attending one of the workshops. Finding the balls to show up isn't always easy, but what makes it easier is the realisation there's a bunch of chaps there in the same boat. The progress I made on the weekend workshop pretty much eclipsed that that I'd made in many of the preceding years, so they do know what they're talking about. But what's more was that it was such a relief to fully understand that I wasn't alone with this, and that there's plenty of perfectly normal guys out there who experience the same anxieties.

I think there's some good signs in the things you've said. For me, and I'm not a medical professional so this is just my view, but the fact that you recognise the pain is worse when you go out, strongly suggests a psychological element and unlikely to be something purely physical. Personally I can relate to many of the pains and symptoms you describe and in my experience these things come and go, usually at times of stress, and the influence of the mind to cause very real symptoms of pain should never be underestimated. This is starting to be better understood by certain medical professionals and there's some really good reading you can do on the mind-body relationship (but in the meantime definitely stay away from googling symptoms - that's a recipe for disaster I've fallen for too many times to mention!)

Try and stick with the CBT and get the fear under control. Easier said than done, but personally I found it helped me. More than anything though you've found the right people here to help you so please don't despair. It's also great to read that you refuse to accept it. It's not something anyone should accept and you do have the ability to overcome it. All the best for turning this around mate.

flosin helps