Symptoms

SickofCP · Post by **SickofCP** » Mon Feb 24, 2003 12:30 am

Hi, I'm 32 and have had Prostatitis for 6 months.

I'm fairly new to this site, but have been reading a lot of the forum discussions lately. It has occurred to me that many of us having different symptoms. For myself, the worst symptom has been a pain, burning, sometimes pinching feeling at the tip of the penis / urethra. Secondary symptoms have been a general discomfort in the entire groin area.

From reading some of the messages, it seems like many have an urge to urinate as one of their primary symptoms. I only had this towards the beginning, when I likely had a urinary tract infection to start this mess. Later I urinated a lot, but mostly because I was drinking tons of water while on antibiotics. I would say that my frequency of urination is normal now.

I've also never had fevers associated with this, or back pain.

My urologist has only done a rectal examination. During the exam, he felt the prostate area and asked me if it hurt. When I told him that it did hurt, he diagnosed me with Prostatitis. (Doesn't a rectal exam always hurt?) It seems like most of you have had more scientific analysis done before diagnosis. I likely reported enough common CP symptoms that he felt other tests were unnecessary.

My point is that it seems like CP may be an umbrella of various pelvic problems. Since all are basically treated the same, there's no desire to isolate which type is which. Am I off base on this?

Quercetin is definitely helping me, but I'm in a cycle where every second time I ejaculate, it makes things worse for a couple of days. I ejaculate every 3 days basically. It makes me feel better one time, and then the next time worse, and then back to better, etc.

I'm trying to stay positive, but there's lots of talk about relapses years later...which is discouraging. I feel like even I get 100% better from this, it may get me again when I least expect it.

Post by **webslave** » Mon Feb 24, 2003 12:50 am

SickofCP wrote:...it seems like many have an urge to urinate as one of their primary symptoms.

Many (most?) men with chronic prostatitis / chronic pelvic pain syndrome do not have this symptom.

My point is that it seems like CP may be an umbrella of various pelvic problems.

Controversial. Drs DS and JD both believe CP/CPPS may have a variety of etiologies, all either leading to a common final pathway or totally separate disease processes. I, the eternal sceptic (and in the minority), still believe we may be dealing with one disease process, even though it may look different in different people. But I am open to persuasion if the science advances ... and it will, it will.

I'm trying to stay positive, but there's lots of talk about relapses years later...which is discouraging. I feel like even I get 100% better from this, it may get me again when I least expect it.

Just live with this. You may have a life-long disease that never entirely goes away, but so what? Life itself is a fatal disease, since nobody gets out of here alive anyway. And research may make chronic prostatitis / chronic pelvic pain syndrome a trivial or curable disorder in your lifetime. So cheer up!

son gofish · Post by **son gofish** » Mon Feb 24, 2003 1:24 am

SickofCP wrote:Hi, I'm 32 and have had Prostatitis for 6 months.

For myself, the worst symptom has been a pain, burning, sometimes pinching feeling at the tip of the penis / urethra. Secondary symptoms have been a general discomfort in the entire groin area.

Quercetin is definitely helping me, but I'm in a cycle where every second time I ejaculate, it makes things worse for a couple of days. I ejaculate every 3 days basically. It makes me feel better one time, and then the next time worse, and then back to better, etc.

.

These are the exact problems I have. Lately (past few days) I have had a slight burning/inflamed feeling at the tip of the penis, and some discomfort in the general area. And everyonce in a while it hurts after ejaculation. BUT, I noticed that if I ejaculate a few times a week atleast, there is generally no pain in the testes afterwards, possibly due to the lack of a pressure build up? There was a period where I only masturbated like twice a week, and the perineal area/testes would really hurt after it. So my main concern really is this irritating sensation at the tip of my penis. (Which for now is not really severe) I haven't really had any other symptoms...no fever, nor urination probs. Dr. Dimitrakov mentioned that first I would have to rule out other possibilities before making a conclusion...and so I'm going to see a Uro. But, SickOfCP, if your doc only gave you a rectal exam and judged that you had Prostatitis because it HURT sounds a bit like jumping to conclusions, wouldn't you agree? Well I don't know, I guess I'm going to see one anyhow. I only need to know what is going on to rest my mind. I'm a worry-holic...

BTW, how is the any accredited quercetin product helping you SickOfCP? I mean what symptoms/problems did it help you get rid of? What did it do? And how long have you been taking it? Can you please tell me about it? Thank you

SickofCP · Post by **SickofCP** » Sat Mar 01, 2003 2:19 am

Hi son gofish...

I think quercetin (Quercetin) has helped a lot of the overall pain/discomfort that I had. Unfortunately, I'm still in this cycle where ejaculation aggravates my conditions. I can't really say that I'm close to cured, but the pain is much more manageable than it was. It gives me some days where I barely think about it. Also, on the bad days that I fear I'm heading into a major flare, the next day gets better, and then better again. Basically quercetin is keeping my flares in check. Although, I guess some may argue that possibly I'm improving over time and the quercetin has nothing to do with it. I believe that it is helping though, since the relief followed just a few days into starting quercetin.

I think I have to experiment to find the right frequency of ejaculation. I was every 3 days, but possibly I should every 5 days? Not sure.

If I ever get rid of this wretched disease I will be the happiest man on earth.

J Dimitrakov · Post by **J Dimitrakov** » Sat Mar 01, 2003 7:21 pm

SickofCP wrote: Unfortunately, I'm still in this cycle where ejaculation aggravates my conditions.

I think you need to consider a diagnosis of IC.

SickofCP · Post by **SickofCP** » Sun Mar 02, 2003 1:23 pm

Dr. Dimitrakov,

I don't think I have IC, because I don't have frequency and / or urgency to urinate. Isn't that the main symptom of IC?

Are there any ways that I can tell, based on my symptoms, which one I have?

Thank you

Post by **webslave** » Sun Mar 02, 2003 4:53 pm

IC expert C. Lowell Parsons says only 15 % of men with IC have frequency and urgency.

SickofCP · Post by **SickofCP** » Sun Mar 02, 2003 5:00 pm

Interesting....

However, IC doesn't seem any more treatable than CP/CPPS. How would I be better off knowing if I have IC vs. CP/CPPS? Are there any good treatments?

Thank you Dr. Dimitrakov and Mark for your insights.

Post by **webslave** » Sun Mar 02, 2003 5:47 pm

Actually IC does have a wider range of treatments, although they overlap CP/CPPS treatments a lot. Increasingly both disorders are being treated by the same methods - just look at what's happening with Botox.

Richard.N · Post by **Richard.N** » Mon Mar 03, 2003 7:54 pm

Actually IC does have a wider range of treatments

This is true, but I am finding real problems with things like Hydroxyzine and Elavil presumably due to the retention they cause.

Richard.N · Post by **Richard.N** » Mon Mar 03, 2003 7:58 pm

...it seems like many have an urge to urinate as one of their primary symptoms.

Many (most?) men with chronic prostatitis / chronic pelvic pain syndrome do not have this symptom.

Er...I'd always taken this to be a symptom of chronic prostatitis / chronic pelvic pain syndrome - I certainly have an urge to urinate

Post by **webslave** » Mon Mar 03, 2003 8:31 pm

Not a primary symptom AFAIK, dysuria yes, but frequency not a prereq. Frequency does occur in CPPS, however.

Richard.N · Post by **Richard.N** » Tue Mar 04, 2003 2:34 pm

I see what you mean Webmaster!

I think I'm probably in the IC camp anyway if we want to be really specific. I don't have this as a diagnosis but I had a nerve test which pointed to IC like mechanisms.

Hepcat · Post by **Hepcat** » Tue Mar 04, 2003 5:46 pm

Richard:

You seem to have had access to some advanced testing.

Would you mind giving out a brief outline of what you've had done?

I'd like to know if I've missed any useful diagnostics since we seem to share very similar symptoms.

As well, what dose of Elavil are you on and what was your titration? I felt like crap on it, but if it helps with the malaise it may be worth another shot.

Thanks

Richard.N · Post by **Richard.N** » Tue Mar 04, 2003 6:34 pm

Hi Hepcat,

You seem to have had access to some advanced testing.

Would you mind giving out a brief outline of what you've had done?

The tests were done in Bulgaria. If you email Dr. Dimitrakov I'm sure he'll be able to explain what can be done better than I can.

As well, what dose of Elavil are you on and what was your titration? I felt like crap on it, but if it helps with the malaise it may be worth another shot.

I started on a dose of 5mg a day (half a 10mg tablet - difficult but dividing it accurately can be done!) for 5 days and titrated upwards in 5mg increments every 5 or so days. I have been on 25mg for about a week.

I hasten to add that even at the lowest dose of 5mg I felt less flu-like. It's either coincidence that the symptoms have abated at the same time as I started the Elavil (and also decreased in proportion), a placebo effect or maybe (whisper it!) this drug is actually helping.

It's changed my urinary symptoms but it hasn't really helped them.

Hope this helps

UCPPS - Prostatitis, Interstitial Cystitis Forum

UCPPS - Prostatitis, Interstitial Cystitis Forum

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