Cautionary Tale

[dshoskes]

I have said it before but it bears repeating that people with the syndrome of chronic prostatitis / chronic pelvic pain syndrome require a full urological workup for symptoms and not just the assumption that any new complaint is part of their CPPS. In the past 2 months I saw 2 out of town men with longstanding chronic prostatitis / chronic pelvic pain syndrome for second opinion of treatment options. They both had negative prostate fluid cultures and positive pelvic muscle spasm and trigger points internally. I did cystoscopy on both of them; one because of blood in the urine and the other because of persistent urinary symptoms despite alpha blockers.

Both men had bladder cancer. In one man it was locally invasive and required radical surgery to remove the bladder. In the other it was superficial with a much better prognosis.

[webslave]

A timely warning, which also explains why I and the other moderators here always say that anyone with LUTS (lower urinary tract symptoms) must first see a urologist for proper evaluation before deciding that they have a psycho-neuromuscular condition.

[treynor33]

This begs the question. Outside of a cysto which I have never had done, what other things can a Uro do? I haven't been to a Uro since Nov of 04. I don't have urgency or frequency anymore and haven't for a year now, no blood or bladder spasms, but I do have a slight warm/burn when I pee. My main problem now is pain and tingling/spasm sensations in my muscles. My concern after reading Dr Shokes email is that in the last 2 months or so urinating has become a bit more difficult despite the alpha blocker. I have been switching back and forth between Uroxatral and Cardura about every month hoping one of them will help me like it used to.

[SickofCP]

I appreciate the Dr.'s caution, but isn't it true that many men with chronic prostatitis / chronic pelvic pain syndrome (and no cancer) have persistent urinary conditions even while taking alpha blockers?

[dshoskes]

I appreciate the Dr.'s caution, but isn't it true that many men with chronic prostatitis / chronic pelvic pain syndrome (and no cancer) have persistent urinary conditions even while taking alpha blockers?

The point is that when new symptoms arise or when therapy doesn't help, you can't just attribute it to the chronic prostatitis / chronic pelvic pain syndrome without evaluating the patient as though they didn't have CPPS. chronic prostatitis / chronic pelvic pain syndrome patients also get cancers, stones and hernias, just like men without chronic prostatitis / chronic pelvic pain syndrome do.

It is very common for me to see chronic prostatitis / chronic pelvic pain syndrome who haven't been examined in over 2 years once they were give the prostatitis label.

[treynor33]

I understand the concern. I just came back from my GP and he has referred me to a "progressive" (he called him) Uro. I haven't saw one since Nov of 04 so I probably need to see one. He is also supposedly able to get me to a PT that can help...so if that is what comes from it then I guess a visit to him can't hurt.

[robertpagen]

I can appreciate the doctor's concern. Still I wonder what the doctor thinks of urologists who, even after a qualified urologist has done a thorough cystoscopy and eliminated the possibility of bladder cancer, insist on doing repeat cystoscopies. Is this professional behaviour or is it more like an effort to get in on the billing for procedures.

In my symptomatic days several uros became difficult when I asked them to call the previous urologist for a report of results from a cystoscopy rather than to do a new one.

I'd like to have faith that some uros are well meaning but my decade of dealing with them has left me convinced that they are uninformed, arrogant, and not concerned about human beings. I hope that the progress of the last few years will make it's way into their heads but I fear not.

Be well,

Robert Pagen

[Astrotitan]

Robert wrote:

In my symptomatic days several uros became difficult when I asked them to call the previous urologist for a report of results from a cystoscopy rather than to do a new one.

I guess I am lucky. I went to see the Urolgist of Urologist, the one that teachers and trains doctors to become Uro's. I mentioned the names of Uro's I visited and tests they did. He new them very well. He said that one (my current one) was very good and to proceed with the cysto and go back to him only if nothing was found, to do Uro-dynamics using an X-rays because he new that my current Uro can't do that because of lack of equipment. Both have said no to surgery but to leave it as a last resort (I am nowhere at that point). The teaching Uro and my current Uro did not sound to favourable in using Alpha blockers because of side effects and to see how I go with time. I can't understand why a Uro will get difficut because you have seen another. I say, if thats jow one behaves, give him the flick and don't pay him.

Tom

This is only my personal opinion, I am not a doctor, just a Scientist.[/quote]

[LightningTree]

I'm glad this message was posted. It is critically important.

[deron]

The original post...spoken like a true Urologist.

I don't mind the caution, but the fear-tone is so consistent with doctors these days, and not necessary. Okay, good 2 examples. How about all the thousands of patients doing unnecessary things just b/c it "might" be whatever.

I would think most everyone on this site has been closely involved with a Urologist before they come here. In my own case, I have taken WAY too many antibiotics and done way too many unnecessary things simply because the docs don't have a clue. Yes, I am thankful for my doctors. But I got really tired of their "Hmmm, this could be really bad" attitudes.

Just my opinion.

[robertpagen]

I agree with Deron and I notice that my polite question above was not addressed. At my nadir I was far closer to dying by suicide caused by unrelenting pain than by bladder cancer.

Be well,

Robert

[Ginty]

Unfortunately while I sense the doctor means well, this thread has only served to worry me without offering any realistic solution to the problem.
To me this disease has been a constantly changing group of symptoms as pain has moved from my legs, to perineum, to sides, to lower back, to shins, to stomach, and may well not stop there.
Every time I get a new pain I think of cancer and inevitably end up at the doctors searching for reassurance when the anxiety has become too much to bear.
The problem when I get there however is that as I have now been labelled either a helpless prostatitis sufferer or an anxiety ridden hypochondriac, I am often just offered anxiety meds or nothing at all.
However as much as I am dissatisfied with this outcome I don't think that going for a full investigation every time I get a new pain is worth the worry and (if I lived in the US) the expense - I'd never be out of hospital.
So as I try to deal with the anxiety this condition has given me (which I would now list as my worst symptom) I think it is far more beneficial to accept the prostatitis diagnoses and all of the varied symptoms this could entail (as this board testifies).
The alternative option, viewing every change in symptoms as a possible terminal illness, believe me is not helpful. We shouldn't base our expectations on the experiences of the "lowest common denominator" -- i.e. these two poor souls mentioned above.

[Astrotitan]

I agree with what many people on this forum have said along with what has been said in AHIP. Our body is trying to tell us something. I think our bodies can generally fix things up by itself, if given the chance, i.e., remove the antagonizers causing the problems. Thats what we are all trying to do with SP and other methods that we might adopt. I'm sure our bodies have evolved , over millions of years, to a state to be able to sort things out.

Tom

[chewymix]

i have had this for coming on to 4 years - If I had had cancer for 4 years then I would be in a very bad way by now - Oh and the fact that when I'm on vacation things are virtually non-exisant and my psoas REALLY hurts me...

Its odd but even though I have not got 'better' I'm much more laid back about all things even outside of CPPS

[SickofCP]

The good Dr. has good intentions. The problem that some of you have is that your symptoms are changing all the time. When your symptoms change and it is only because of CPPS, probably the worst thing to do is to start worrying about cancer. HOWEVER, there has to be a balance, because these things are possible even if remote. Perhaps all of us should be seeing a uro at least once a year to rule out other things.

It's probably true that those who post here fall mainly into 2 categories:

1) Those that are running from uro to uro trying to find an answer, OR
2) Those of us that used to be #1's, but now see no point in seeing a uro. Either because they are not helping, or have discovered better ways to help themselves.

Dr. Shoskes is concerned primarily with those of us in #2 above, who have quit seeing uros out of frustration and just accept changing symptoms.