New to this board - some questions

[dumon]

Hate to have to be introducing myself on this board, but here it goes:

Age: 19 (in college - ironically enough, at Stanford, which I quickly learned is a big name in chronic prostatitis / chronic pelvic pain syndrome treatment, but which has thus far failed with me.)

I had the onset of symptoms almost 5 months ago. There has basically been no relief at any point, although I have tried many things. Symptoms for me are:

pain, pretty much only in the urethra (all throughout) and slightly extended to the perineum (I do not have the pain that I often read about from other people, the kind that extends to lower abdomen, etc.) But, this said, the urethral pain is often very bad: it feels somewhat like the burning that can be felt from urinating while dehydrated, just constant.

frequent urge to urinate (sometimes the urge is absent for a few hours at a time - usually in the morning - but invariably, the urge returns; once I start having to go, usually the urge never leaves until I sleep / wake up / go again.)

I should also note that I have a seriously weakened stream (the weakness seems to correlate with the urgency and pain), and that I have small amounts of dribbling afterwards and during bowel movements... but these are minor annoyances compared to the pain and urgency.

Of course these symptoms at first looked like a Urinary Tract Infection, but after many urine cultures, that was ruled out. So far I have also had:

a short (3-week) regimen of Cipro, to no avail
a CT scan (showed nothing)
a cystoscopy (showed nothing, was intensely painful)
detected high WBC presence in prostatic fluid

I have tried various things to ease the symptoms over the last few months:

Quercetin (seemed to help in the first week thereafter, but has since worsened, and so doesn't seem to help)
Saw Palmetto
Magnesium

None of these things seem to help me.

I also take a few Motrin a day, by a urologist's suggestion, although this seems to do nothing to help. In the past few weeks, after the prospect of recovery from this seemed to vanish (my symptoms took a turn for the worse), I started taking some Vicodin that I had around, about 1 pill every 2 days, just when the pain got so bad and I wanted to sleep or otherwise function. Vicodin definitely helps the pain, and although the urgency is still there, it is not as strong. I can in fact function better, mentally and otherwise, after taking the Vicodin, because, compared to the state of being distracted by urgency and pain, I am more lucid/positive, etc.

What I'm doing next is going back to a urologist and requesting a prostatic fluid culture (they cultured urine many times, but never did this) and seeing what results that gives. Maybe there is an off-chance that it will test positive for some bacteria, and then try a new, longer, more tailored antibiotic regimen. I've heard of methods that use antibiotics in combination with decalcifying agents. I've also heard that there are other ways to increase antibiotic absorption, like emptying the prostate at the peak antibiotic levels in the blood.

I also hope to get a prescription for tramadol, and to try that instead of Vicodin. In general, my urologists seem opposed to prescribing painkillers, but I don't think they understand the severity of the pain.

I'm also going to ask about the transrectal ultrasound. Would the TRUS be able to detect calcifications or other masses that the CT scan didn't?

Any other suggestions or comments about my situation?

Thanks,
Chris Simpson

[webslave]

Chris, hi. My opinion is that the EPS cultures will be a waste of effort. You say you're in Stanford but have not tried to see David Wise?

[dumon]

No, I haven't seen Dr. Wise. I was given an appointment with Dr. Rodney Anderson for June 22nd - quite a long time to wait, though, so maybe I should contact Dr. Wise in the interim.

This is a somewhat random question, but maybe people will have some experience to share: what are good ways to manage water intake? I ask this because before the onset of the symptoms, I used to drink plenty of water - probably 8-10 glasses a day. This was just how much water I liked to drink. With the start of the symptoms, though, I became literally fearful of drinking too much water, because the urgency and the ensuing pain was so bad. So, my water intake has actually stayed significantly altered: now I drink only at meals - I would estimate 4-5 glasses a day. I am still fearful of drinking - no joke. But yet I have read that one way to deal with urgency, at least as it pertains to conditions like Overactive Bladder, is to drink a regular amount and do bladder training - to slowly fight the urge to go. Has there been much success for prostatitis sufferers using this method?

[rider fan]

I drink 1.25 litres of water gradually from morning until about 6 PM. Then about .5 litres from 6 to 10 PM. Nothing after that so I don't have to get up at night.

I understand why you don't want to drink, but concentrating your urine probably makes the burning worse. I also find that waiting too long before emptying my bladder sometimes leaves me with a burning feeling afterwards.

Sure wish I lived in Stanford!

Hang in there. I don't think it's a coincidence that you started feeling worse when you lost hope of a quick resolution. Try to stay positive, or at least not too negative. This won't go on forever.

Also, I'd think hard before comitting to long periods of ABX and regular prostate massages. I'm not saying it wouldn't help, but you could possibly make things worse by irritating the prostate daily. Just my opinion though...

[CppsDad]

Sorry to see you here too. You're young, and you WILL get better from this. Just hang in there.

Age: 19 (in college - ironically enough, at Stanford, which I quickly learned is a big name in chronic prostatitis / chronic pelvic pain syndrome treatment, but which has thus far failed with me.)

Stanford may have failed you, but the Stanford/Wise-Anderson Protocol has NOT. You haven't tried it. You've seen normal urologists, taking the usual antibiotics, etc... But you have seen Dr. Anderson, or Dr. Wise, and you haven't started practicing anything that is recommend in the Stanford/Wise-Anderson Protocol (at least you don't say you have). So don't despair - the best tools are still available to you! You can get better.

Mike

[Richie]

Hello Chris.

Judging by your comments you need to spend some time reading on this board. Go check the best posts section and educate yourself as to what you have, what works and what does not.

We have all been down your road so don't despair but learn from the others here. It will save you a lot of time, pain and worry.