UCPPS - Prostatitis, Interstitial Cystitis Forum

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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.

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).

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:

1. Was born as a premature baby, but was not diagnosed with any related medical conditions that time.
2. 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.
3. 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),
4. 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.
5. 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.
6. 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.
7. I saw another general surgeon thereafter who thought much the same: symptoms in the pelvic area - yes, in the genitals - not conclusive.
8. 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.
9. 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).
10. For now I still have a little pain due to the operation and somewhat swollen right scrotum.

The good news: I'm healing just fine and it appears to me that many of the chronic symptoms I had such as occasional aches in the scrotal and pelvic area disappeared.
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.

Thank you for posting your case Wolfcub. I know for sure I have a medium+ size Varicocele on the left testicle. It is detected on ultrasound tests and I feel it as a bag of worms there. But I never read anywhere of any urinary symptom related to it. I think Varicocele or Hydrocele are frequent condition for men, yet not all of them rush to the bathroom every 1-2 hours.

I would like to know Webslave opinion on OAB, for me it maybe a symptom not a condition itself.

Wolfcub, you are only a week post-surgery and things have not settled down yet. Wait a few months before re-assessing symptoms, because a lot of your problems may dissipate by then. Keep us updated!

Fobo, OAB is a condition all on its own, and the vast majority of OAB patients do not have CP/CPPS. Is there an overlap? Yes, there can be. In my own case, I had a few months where frequency became an issue, but it was only for a few months. Other patients have a much longer experience of frequency, and for some it is one of the most annoying and persistent symptoms.

webslave wrote:Wolfcub, you are only a week post-surgery and things have not settled down yet. Wait a few months before re-assessing symptoms, because a lot of your problems may dissipate by then. Keep us updated!

Of course I will, that's a sure thing!

Another interesting thing to note:
During the first few hours after operation I was given a large amounts of Tramadol, and took 50mg X3/day in the first 2-3 days after operation. During that period I barely felt that "constant sensation to urinate in the tip of penis" (from now on I call it "penile sensation"), so I've been wondering if it's something to do with the tramadol. What do you think?

On the other hand, a simple explanation could be that during the first days after operation the strong pain signals competed with that penile sensation.

As for now the penile sensation returned to "business as usual" (In the last few days took tramadol 50mg per day and now none). Well, At least I got rid of the bulge and the occasional aches in the inguinal and scrotal area.

That's the effects of a general anaesthetic. It modulates nerve activity for a while, post-op. That was my experience too, as well as a few others who have reported a temporary post-anesthetic cessation of symptoms.

Wolf club I'll post more tomorrow when I have my computer. For now I can say that I feel for you regarding the constant sensation of needing to urinate. There are times that it drives me crazy. Maybe I don't technically have CPPS, but 13 months ago extremely light pressure placed internally on the muscles adjacent to the prostate was extremely uncomfortable and exactly mimicked my symptoms. After 13 months of the Wise Anderson Protocol it now takes about 40 times the pressure to feel the same thing. Still my symptoms persist. Anyway, this internal trigger point stuff is experienced by most of the chronic prostatitis / chronic pelvic pain syndrome guys so maybe I just got a very light case of it?

Anyway, have you tried Klonopin or Valium to knock out flares? Works for me, but I always feel I need to urinate to some degree. Tramadol ended my discomfort for a week and then stopped working. I'll write some more soon.

CMT23, thanks for your kind empathy and sympathy and sharing your experience. I'm also not sure if what I've got could be put in terms of the CPPS, but nowadays many researchers and clinicians tend to see matching aspects between chronic prostatitis / chronic pelvic pain syndrome and IC/Non-bacterial -Chronic-Prostatitis/OAB.

I Wonder if anyone here heard of or tried a neurological treatment called "sacral neuromodulation"?

I see nowadays one of the theories is stress as a trigger leading to some pathological immuno-neuro processes. I must say during 2005 (as I said my symptoms started in summer 2005) I had some moderate tense period accompanied by some level of anxiety/depression. In addition to that, in spring that year there was a day I made a sharp movement and felt some kind of "tear" in my right waist area (I don't think it had anything to do with the indirect inguinal hernia/hydrocele) followed by a very intense throbbing pain. I almost thought of going to the ER, but it went away after a hour or so.

CMT23 wrote: Anyway, have you tried Klonopin or Valium to knock out flares? Works for me, but I always feel I need to urinate to some degree. Tramadol ended my discomfort for a week and then stopped working. I'll write some more soon.

I haven't tried Benzo-drugs. Nevertheless, maybe (and even probably) I was given some as part of the general anesthesia pre and intra operation, which might explain the temporary cessation of penile sensation related symptoms for a few hours post operation.

Hi Wolfcub,

Like webslave said, I would wait a few months and see if things settle down as you heal from the surgery. Hopefully they do! If not, then maybe you need to look into whether or not you have a pelvic tension/trigger point disorder.

The benzo drugs are very effective and if used occasionally you won't become addicted. By all accounts, using them every day is not a good idea as you will build up tolerance and coming off them is hell.

I do think that my disorder is stress related. It completely went away for three months soon after it started. During that time I was out of an environment that I didn't want to be in. As soon as I got back, within a few weeks it all started again and hasn't gone away since. Also, in day to day life I can feel it get worse with stress. Is that your experience? For example, my boss called me 2 days ago when I felt relatively good and told me I had 1 hour to get in a suit, get across town, and present a project that isn't complete to a multi billionaire. For the next 4 hours the sensations was intense and I probably urinated 5 or 6 times. Even though I am aware of this, I can't seem to control whatever it is that is causing the symptoms.

Anyway, for symptomatic relief, Tramadol and Valium/Klonopin and a hot bath followed by lying down does the job for me. At least lets me rest and greatly reduces the sensation of needing to urinate. Keep me updated.

CMT23 wrote:Hi Wolfcub,

Like webslave said, I would wait a few months and see if things settle down as you heal from the surgery. Hopefully they do! If not, then maybe you need to look into whether or not you have a pelvic tension/trigger point disorder.

Shall wait and see, then. 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.

CMT23 wrote: I do think that my disorder is stress related. It completely went away for three months soon after it started. During that time I was out of an environment that I didn't want to be in. As soon as I got back, within a few weeks it all started again and hasn't gone away since. Also, in day to day life I can feel it get worse with stress. Is that your experience? For example, my boss called me 2 days ago when I felt relatively good and told me I had 1 hour to get in a suit, get across town, and present a project that isn't complete to a multi billionaire. For the next 4 hours the sensations was intense and I probably urinated 5 or 6 times. Even though I am aware of this, I can't seem to control whatever it is that is causing the symptoms.

Yes, I think when I'm stressed my symptoms get worse and more intense (see my signature).

CMT23 wrote: Anyway, for symptomatic relief, Tramadol and Valium/Klonopin and a hot bath followed by lying down does the job for me. At least lets me rest and greatly reduces the sensation of needing to urinate. Keep me updated.

Doesn't Tramadol cross-react with Benzos? Or TCAs are the ones which do?

A little update: No much new to tell. The healing process post operation is going very well (9 days have passed since then). The pain almost disappeared completely, the wound has been healed perfectly with no complications.

I'm pleased with that operation because the hernia and hydrocele by themselves caused me some discomfort - from time to time, especially when the hernia's content dragged deep into the scrotum, I got acute typical sensations or sharp pain. These kind of symptoms are well distinguished from the other chronic ones. Now after operation the bulge (hydrocele) has gone so no more occasional sharp pains.

On the other hand, that hernia issue seem to be UNRELATED to the other symptoms - the chronic symptoms have returned fully. Not only do I have this chronic sensation/discomfort in the tip of my penis ("penile sensation" as there's urine in the urethra) but those abdominal ones are back. I'm not on meds anymore, so it's not surprising me - as the NSAIDs and TRAMADOL I took might helped to alleviate those symptoms.

The sensations in my abdominal area are very interesting in nature. Sometimes I feel them as pressure/dull aches and sometimes somewhat painful or burning (let's say 1-2 on "1-to-10 scale" and even 3-4 occasionally, especially when holding urine for more than a hour or so (since the last time I pee), or when waking up from sleep because of them). Most of the times I feel them in the lower area, between the navel and penis, and above that area. I've CLEARLY noticed that when I press in a specific area I can feel a radiated pain in another area in the abdomen. Sometimes I can even feel a pain in the upper section, very close to the chest. It sounds like trigger points, doesn't it? What do you think?

I've started looking for PT in my area, who are specialized in pelvic therapy and treat men also. There not many, but there are few. I've already started to try and contact them (appear to be busy). I'm also going to have the follow up appointment with the surgeon who fixed my hernia and hydrocele next week, and booked a meeting with my GP (I might ask her to consult with a neurologist and even request a CT/MRI imaging just to rule out other things).

If there's a new development, I'll share with you. In the meantime I'd like to hear your thoughts.

Thanks again all of you.

Hi Wolfcub,

I was diagnosed yesterday with an inguinal hernia and I am hoping that my operation will help to reduce some of my discomfort.

Could you believe something like this would exist: http://www.bjui.org/ContentFullItem.asp ... tionType=1
Looks like the operation actually fixed it.

Hi fobo, this is a case caused by parasites blocking the lymph nodes... a totally different etiology for hydrocele.

Wolfcub, in reply to your question: Doesn't Tramadol cross-react with Benzos? Or TCAs are the ones which do?

Yes, I think it reacts with both Benzos and TCA's by increasing the effect of them, but I am past caring. It's not indicated as dangerous, just need to be aware that you may feel more sleepy. That's what my latest doc says. Anyway, I'm at the point where I'll experiment with just about anything within reason. For years, a tramadol and 5mg of Valium cut down my symptoms by 70% or so - especially when mixed with a glass of wine. Now I still get that effect, but the next day I have a hangover feeling. Also, it's not something you can do every day. So now I am experimenting with meds that might offer continuous relief. Back on Baclofen and Flomax in addition to Hydroxyzine. Also have taken Tofranil and Deanxit for a few months. Will let you know how it goes. In the process of slowly increasing the daily dose on the new meds now.