Urology/Itching in Penis and Frequent Urination - tests find nothing
I am a 30 year old otherwise healthy male suffering from constant irritation in my penis and a never ending urge to urinate.
This started around 3 years ago when I was 27. I specifically remember waking up one on 2nd October 2011 (I remember the date because it was a friend's birthday) with a very itchy penis. There was nothing visibly wrong and the itch was like normal itchy skin that you just want to scratch. I can't remember the exact sequence of events following this, but the itch went away on its own enough for me to not think of seeing a doctor, but then when I was on holiday from 13th - 17th October, inflammation broke out around the top of my penis. The foreskin around the top of my penis became kind of crusty, while the head was very read and sticky, and the whole thing was extremely sensitive and sore to touch. This lasted a couple of days and went away by the time I got home and saw a doctor.
Over the weeks and months that followed the itch came and went. My initial diagnoses from the doctors were balanitis or thrush, and I was prescribed various steroid and antifungal creams and ointments. As the symptoms seemed to come and go it was never clear to me if any of the treatments were working or not.
Over time the irritation became more frequent, I went from suffering maybe one or two days per week, to suffering most days, to eventually suffering all the time. As this happened, the nature of the symptoms changed too. I can't pinpoint exactly when or how, but over time the feeling went from being a pure itch to a feeling of needing to urinate. By late summer 2012 it got to the point where I basically felt like I always needed to urinate. I would pee, and by the time I washed my hands I would feel like peeing again. Sometimes I'd stand over the toilet feeling like I needed to go, but nothing would come.
At around this time I was referred to a urologist, who tried various treatments. I took courses of Doxycycline and Ofloxacin to rule out urinary tract infections. I spent some time on alpha blockers for possible prostatitis which had no effect (a prostate exam was also normal). I spent a long time on different anti-cholinergenics, including Oxybutanin and Solefanicin which also didn't help. I spent a couple of months taking taladafil daily which the urologist said can help with bladder symptoms, but saw no change from this either.
I had an ultrasound and underwent urodynamic testing which showed no problems, and a cystoscopy and bladder biopsy which found no abnormalities or inflammation. The only abnormal result from any of my tests were that my bladder capacity was shown to be 148ml, which they said was likely a result of me peeing so often, rather than the cause of it. I did a bladder diary which shows that I typically pee 300-400ml after a night's sleep, but pee between 100ml-150ml throughout the day.
I have also had blood and urine tests to check for diabetes and for STDs but nothing was found. I have been with one long term partner and have no reason to suspect STDs.
The problem has also had a large impact on my sex life. As there is basically no moment during the day when I don't feel like I'm holding in pee, I struggle to get or keep erections and to have sex. When I'm in bed with my girlfriend I find myself always pulling my groin away because I feel like I'm holding back pee and like I could leak. I don't really suffer from leaking, but after I go there is often a lot of residual dripping that can happen. In the last 2 years we've probably had sex less than 10 times, and haven't had sex at all in around 6 months. Conversely, I can and do masturbate, and ejaculation does feel like some relief to the irritation, in much the same way that peeing does.
I am at the point now where the urologist has no more answers and has discharged me and referred me to a physio, with whom I am doing pelvic floor exercises to see if that will help. I have also started taking Amitryptiline a couple of weeks ago at my doctor's suggestion to see if it helps with nerve sensitivity. So far I think it is helping me to sleep slightly better, but not having any impact during the day.
The overall state of my symptoms right now is that I generally don't wake up in the middle of the night because of it, but it is not uncommon for it to wake me up an hour or so my alarm. When I do wake up I usually have an intense irritation and urge to pee and sometimes some soreness in my penis, which is relieved as soon as I do pee. I will then typically pee three or four more times over the next hour while I'm in and around the bathroom getting ready, before going to work for the day. When I'm in work, and I really try to, I am capable of holding it and only going once every 2-3 hours, but when I'm at home I go much more often, maybe every half hour. For me the problem isn't how often I go. When I pee, it relieves the irritation, but it comes back within minutes and gradually grows and grows. I can hold it for a long time, but the big problem is the amount that it hurts my concentration and the amount of irritation I feel. I feel like it is worse when I'm up and moving around, and it's put me completely off walking or any other remotely physical activity, to the extent that I rarely do anything anymore other than sit at a desk in work and sit at home.
I feel like the urologist went in the wrong direction by focussing so heavily on my bladder, when to me this started with a rash on my penis and so often involves irritation of my penis in addition to a plain urge to pee. I also regularly feel intense itching around that area, and on my testicles. When I've spent time googling my symptoms the things that jump out at me are things like HPV in the urethra, where the description of the symptoms feel a lot like what I feel, but the urologist has assured me such issues would have been picked up by the cystoscopy. Diabetes is another thing that comes up time and again when I look for my symptoms, but I've been tested multiple times and my blood and urine sugar levels are completely normal. Allergies are another thing that come up when I search, but the urologist doesn't think that makes sense, and I have no real way of testing. I've tried eliminating various types of food for a couple of weeks at a time to see if anything made a difference, and I haven't seen any improvement, but that was quite unscientific.
I'm at a point now where I really don't know what else I can try. I really can't underline enough how big an impact this has had on my life. I am stuck with this irritation 24/7 that has made simple things like going for a walk turn into torture, and there is simply no respite. It has completely killed my sex life at a time when my girlfriend and I should be thinking about children, but has left me unsure if I'm even capable of conceiving, and even if I get past that hurdle I'm unsure if I'm capable of raising a child when I'm constantly in this state. I'm 30 years old and I feel like my best years are long behind me. And the worst thing of all this is that there seems to be no explanation whatsoever for any of it, with no tests finding anything. The one and only actual visible sign there has ever been was that rash when it all started that only lasted a couple of days. In the years since there have been a bunch of occasions when I've had similar inflammation flare up, but they've been few and far between and always very shortlived (less than a day) - and I haven't had a flare up in over a year now so that particular symptom may be gone.
I'm hoping there might be some avenue I haven't explored or some other diagnosis that explains all my symptoms.
I don't have any magical answers for you, but I would suggest you start at the beginning with a University Medical Center Urology team to get a fresh look at your problem. There are few things more difficult in medicine than treating symptoms and feelings when all the tests are negative. Good luck.