Hello CMT23, you are definitely not alone! I have been suffering for more than 7 years from the exact thing you describe - a constant (24/7) sensation to urinate especially located in the tip of penis (it feels like there's "trapped" urine in the urethra).CMT23 wrote:I have to say I am left a little confused over the fact that it appears that I am the only one here with these symptoms.
I feel I can relate to your situation, as having this condition is significantly affecting my quality of life. This sensation has been interfering with my daily activities and with my sleep (I usually wake up every ~2 hours because of the sensation, so my sleep quality is chronically not good).
However this by itself cannot be considered as having CPPS, as a syndrome you might need to have additional symptoms, I think.
My story in short:
- Was born as a premature baby, but was not diagnosed with any related medical conditions that time.
- Age: 16-17 years old. One day I suddenly saw and felt a mass in my right testicle. I talked about it with my mother. She told me we would go to a doctor to check this in case it didn't go away. That mass felt soft, liquid-like and not solid, and disappeared after a day or two, so I guessed it was an hydrocele.
- Age: 16-19 years old. That mass continued to appear from time to time, and additional symptoms began to appear such as a feeling of pressure and even light pain in the area of my right testicle (bot not always, and especially when the mass became bigger or deeper in the scrotum),
- Age: 19 years old. During the Spring/Summer period It's started, what I call "a constant sensation to urinate". In the beginning I basically thought it was due to some kind of stress and/or drinking a lot of fluids (I was a student that time, and the weather where I live is quite hot during the summer). But limiting my fluid intake didn't help. As the days were passing by, I started to notice this sensation became more strong and more frequent. In summer it already became very annoying interfering with my activities and sleep. After going to the bathroom, the sensation disappeared but came back after 20-30 minutes or so. In the end of that Summer, the sensation became constant in nature, as disappearing only for a few minutes after urinating.
- Age: 19-25 years old. My sleep became poor. During that period I went to see many urologists. They gave me a lot of tests, among them: urine and blood tests, urine culture, ultrasound imagings of the upper urinary tract (kidneys, ureters and bladder+prostate), physical tests. They couldn't find anything unusual. Some of them told me the "it is all in your head" thing, others were clueless/seemed to be indifferent. The was a GP who gave me an alpha-blocker drug to try to ease my symptoms. I took it for a few weeks but appeared to do nothing but dryness in my mouth and a little bit of urinary retention. I started to accept my condition and try to live with it. It was not only the sensation to urinate that bothered me: the more I try to hold my urine the more feelings of pressure and pain build in my pelvic area, radiating to the stomach and even close to the chest. This is a very annoying and unpleasant feeling waking me up when I sleep every 1-2 hours.
- Age: 26 years old to present. Due to another medical condition completely unrelated to this one, I tried to give it "another try" and went to see a new urologist. In addition to the frequent sensation to urinate and the nocturia, I also mentioned to him I usually feel a mass close to my right testicle accompanied by aches from time to time. He gave me a suspicious look and told me I might have an hernia. He checked the area physically and told me he suspect I have an hernia in my inguinal area, not of intestinal loop but peritoneal content. He referred me to a general surgeon. The surgeon checked my and told me I had an indirect inguinal hernia of reducible omentum protruding to my scrotum through the deep inguinal ring. He advised me to to have an operation to fix it. I asked him whether it can cause my aches in the pelvic and abdominal area, and he said it could. I asked him if it could also cause that sensation in my penile tip to urinate, and he said he didn't think so.
- I saw another general surgeon thereafter who thought much the same: symptoms in the pelvic area - yes, in the genitals - not conclusive.
- I still had follow up appointments with that last urologist, He wanted to check my urine stream, so I had a uroflowmetry test. The results were: average flow of 13 ml/s and max of 18 ml/s (bladder filled with 520 ml) and somewhat flat curve of the flowing pattern and residual urine of 80ml (in other ultrasound tests the residual urine after urinating was 0-40 ml and actually zero most of the times, so it wasn't considered to be significant). The velocity sounded a little bit low for me, so I asked him if those results were normal to my age. He told me they appear to be normal but quite low, so because of this and because of my chronic symptoms he suspected I had a urethral stricture or a problem with my prostate or bladder. He gave me a DRE and told me my prostate was just fine. He referred me to have an urethrocystoscopy done under a general anesthesia. I did it last summer and the again, nothing unusual was found. That last urologist decided to end the consultation with me. He didn't want me to take drugs because he thought it might not help as it didn't in the past and due to my young age. I asked him if there were additional tests that can be dome such as a urodynamic testing. He was strongly against any further testing, especially invasive ones, and the general impression I got from him was to try to live with it and that's all. I didn't mention the words CPPS/IC to him. Yet he recommended me to treat the hernia and told me it was not related to my frequent sensation to urinate and my nocturia.
- present: At last, I had an operation last week to fix my inguinal hernia. The surgeon also detected an hydrocele, what I suspected I had almost a decade ago. He said I had an hydrocele of 20 ml, which is considered to be medium, that was "communicating" with my peritoneum through the hernia. So he did a right inguinal hernioplasty with mesh and hydrocelectomy at the same operation (open inguinal approach).
- For now I still have a little pain due to the operation and somewhat swollen right scrotum.
The bad news: I still have the constant sensation to urinate in the tip of penis.
I found a website stating that "In some cases a man with a hydrocele may feel that he has to pass urine frequently, or urinating may be uncomfortable." (source: http://www.embarrassingproblems.com/doc ... -hydrocele ). I'm not sure about its credibility, yet it mentions its sources. I checked the full original research report and it seems that lower urinary tract symptoms are mainly related to more extreme cases of hydrocele, especially acute and giant ones. So It might have nothing to do with my chronic sensation to urinate.
On the other hand I'm still on drugs and it's natural to urinate more than usual to get rid of the waste and am still healing and having this scrotal swelling, so maybe that annoying sensation to urinate will clear in time - but am not counting on it.
According to wikipedia (didn't check the sources), many urinary symptoms, such as urinary frequency and nocturia, might be related to the different types of prostatitis.
Maybe we "just" have OAB? (overactive bladder) I don't know. But nowadays the reality is that my sensation to urinate doesn't disappear at all, it's always there, even after urinating.
Unfortunately, this kind of therapy isn't commonly known and practised in Israel. However, a year+/- from now, if things stay the same or get worse, I'll go to see my GP to ask about the possibility of consulting with a neurologist or someone else (apart from urologists). The last urologist I saw refused to put me on meds-trial or to refer me to additional tests after he had got the normal results of my urethrocystoscopy. I didn't ask much why. When he first heard of my symptoms and saw my flowmetry results he also thought of referring me to a neurologist, but later on he didn't mention that.