I'm 22, Male with no previous medical conditions apart from moderate shy bladder syndrome, yet this pain is so bad its ruined my life.

[Hal_M]

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. I just don't understand why my before seeming health body has gone so wrong and why everything I find on the internet about this, is peoples stories of living with this for what seems to look like forever.

Hal

[Mutleyforever]

Hi Hal, so sorry to hear your trouble with shy bladder which over time seems to have escalated so much. Have you tried hypnotherapy, it seems worth a go, expensive and you have to find one that you can feel comfortable with and hopefully is local but could maybe relax and retrain your responses out of the panic / freezing response it seems to have gone into.

There is a clinical directory of qualified hypnotherapists if you are in the uk, Best wishes Mutley

[RedTeddy]

Hi Hal 🙂

Although I can't offer much help with your particular problem I can totally relate to how you feel & what you're going through.

I started having pelvic pain & UTI's a couple of years ago & my life has been turned upside down. I too think about the future a lot & fear this nightmare will never end & if it doesn't will I even still want to be here.

You've been doing everything right though, you've seen urologists which is good. I appreciate they can confuse us sometimes when their opinions are different, it's hard to know what to do. You've been really brave taking steps to see a therapist & start antidepressants, I have also been offered them but haven't quite yet plucked up the courage to start them. I was told they can take quite a few weeks to get into your system & start working so if you're not seeing improvements yet stick with it I'm sure they'll kick in & you will feel the benefit.

I also see a pelvic floor physio & have acupuncture, it has helped a bit with the pain. I too am fighting with my anxiety, I know when I get super anxious my pain gets worse, then when the pain gets worse the anxiety gets worse 😩 it feels like a constant battle.

I refuse to accept this is the rest of my life & am working hard to find ways to overcome this crap. Just keep doing what you're doing, don't give up.

No one deserves to live with pain & you're especially young to be going through this. When you have a good day make the most of it try not to hide yourself away. You're not alone, there are many of us struggling the same way.

There's always people on here to reach out to if you ever want to offload.

Wishing you all the best 😊

Jo

[Agnessa]

Hi Hal. You should read a book written by Dr Wise and Dr Anderson “A headache in the pelvis”. You will find an exact story experienced by Dr Wise who found a method that helped him and other thousands of patients to become symptoms free. You can check the website pelvicpainhelp.com  where you’ll find a tons of information. There is a combination of external and internal trigger points releases, some stretches and the most important the relaxation that you have to do daily. 

I’m having a pelvic pain for 18 months. I visited so many doctors, most of them had no idea what is going on with me, often feeling abandoned. I was in so much pain, lost 12 pounds in 2 months, literally lost hope that my life will be normal again. Finally a year ago I was diagnosed with pelvic floor dysfunction due to muscle spasm. The life changed after I read that book. This book is a “bible” for patients who suffers from pelvic floor muscle dysfunction. I contacted Dr Wise via email and he called me back immediately. In a month I went to his clinic in California for 3 days, it was March 2022. I was taught his method called Wise-Anderson protocol and for the last 12 months I’m following this protocol at home. I started feeling better in about 2-3 months of following his protocol. And a year later my life is almost normal again. I can travel again and enjoy some activities that could not do before. My pain is not so intense and my symptoms are improving. The sitting pain is still there but much much less intense. I highly recommend to read this book, it helped so many people. 

By the way, the clinic is organized for group of 10 people. I was the only women there. The rest of the group were young men like you and theirs symptoms were identical to yours. Some of them came from different countries. You can contact Dr Wise, I am sure you it will be helpful.

Hope you will feel better soon and will remember this painful time of your life just like a ‘small episode’. Good luck!

[CockeyMoor]

Just in general. Over the years Hal I have had a few illnesses that at the time I believed were forever and made me depressed. One was recurrent visits to the loo and overactive bladder. A terror to try to relax and get a bit more urine out. I used to call it my nervous wee and felt I couldn’t leave the house. I suffered pain within 30 mins of a previous visit to the loo and got panic attacks if I was not near a loo within 60 mins as I would get so much pain and feel sick. It was triggered from my first ever UTI in 2019. You may have had a UTI that went undetected. Whenever I got symptoms I would get the pain and pressure feelings but no UTIs showed up. I bought Multisix SG sticks made by Siemens and self tested my urine. Leucocytes showed very highly. GPs ignored this even when the samples that were sent to the hospital were high. I had a feeling that I had a deep seated UTI which was causing the problems. A urologist gave me a prophylactic course of Nitrofurantion for 6 months then Cephalexin for 6 months . This helped a bit. In the end though I was given Metronidazole coincidentally for Diverticulitis and all of a sudden my symptoms resolved. Metronidazole is used for anaerobic infections and I think I had such a deep hidden pelvic residual infection that was the cause of my issues. Give your body more time to mend and give yourself time to find out what is really going on. The different treatments are helping to relieve the symptoms a bit but at the end of the day you need to get to the cause and get fully better. Your Urologist is not doing enough for you. You are too young for someone to be mentioning drastic operations on your bladder neck ! There is a solution out there you just haven’t found it. I do think hanging on to your wee originally for long periods caused by shy bladder has got your bladder detrusor muscle into not relaxing properly. It will definitely resolve. Anxiety of course does play a part but ultimately there must be something else that is causing this to continue. Get those sticks direct from Medisave👍