Attila Prazsak

April 30 1997
May I add the following story to the other ones, since this seems to be the only way one can get support for a debilitating condition,  such as CP. It seems that the diagnosis of chronic prostatitis may cover many things, such as infection of the prostate, vesiculitis, epididymitis, cysts in the vesicle, calcification in the prostate etc. Sorry,  if I repeat what you already know, just wanted to make a point that uros in their eagerness to get you out of their office do not adequately investigate matters of chronic pelvic syndrome (thank you J.Garst for the inclusive term)  and they lump together problems into one "neat-looking" diagnosis, which is chronic prostatitis. Unfortunately, it seems like the scientific exploration  of this disease has to improve a lot. I also think, that many of us, who went from doctor to doctor in search for a  cure, are now disappointed not only because of lack of succesful  treatment. I assume most of us trusted the doctor initially, but soon we had to realize that our trust and hope would be shattered by the arrogant ignorance of some uros, whose treatment not only did not help, but perhaps it made our condition worse.

My symptoms have been the following. A year ago, after sex (safe) theprevious evening, I woke up to experience extreme burning pain while urinating. I saw no discharge, but continued to have burning pain when voiding urine.Urine flow was forced and very weak,  I had a sense of incomplete bladder emptying. Shortly after this,  I developed a dull, but rather disconcerting pain where the prostate was supposed to be. I also experienced pain in the fork of my thighs and some strange pain in the inner part of my right thigh. Testicular pain followed, especially in the back of the scrotum. At that point I went to get tested for std's.  Repeated urethral swabs for gonorrhea and chlamydia were negative, repeated syphilis tests were non-reactive, repeated, complete urianalyses and urine cultures were negative.  Nevertheless,  I was treated for chlamydia with a single dose oral antibiotic.

The pain did not go away, that's when I made the mistake to go to a uro. He told me that it was all in my head,  and I should forget about it. He concluded that I had a problem of psychological origin and therefore the pain that I was imagining should go away only  if I  "forgot about the middle portion of  the body". The testicular pain, occasional urethral pain in the penis, dull but intense prostate pain kept coming and going, which made it impossible to forget about the pelvic area.

On my second visit,  the uro was annoyed, did a quick and markedly painful DRE,  yelled at me that there was nothing coming out, so there was no infection! He performed a urine dipstick(!), concluded that I was fine, laughed into my face and scientifically concluded that I was oversexed. I guess,  the antibiotic for being oversexed is bactrim, because that's what he prescribed.  It was absolutely obvious however, that he just gave me medication because he was convinced that it will help my mind  to forget about the problem. Kind of like you were treated so you should be fine.

Unfortunately the burning pain while voiding became much-much worse after finishing the bactrim, which I had to tell him. It was not the wisest thing to go back again to the same uro, but I did not know better at that point.  At that point he gave me doxicycline ("Well, if you think you have chlamydia, you can take this") Naturally,  I had no idea what I had, except for the pain; I went to see a doctor ( I thought he was one) to find out what I had.

All the above mentioned pain sensations never got better and I went to another uro and I was hoping to find professionalism. Boy, were my hopes in vain! The second uro seemed more understanding. He told me that he did not find anything in the urine that was collected after prostate massage. It took him about 3 minutes to examine that urine specimen and I am assuming no cultures were done during those 3 minutes, only  a simple microscopic evaluation must have taken place. He put me on ofloxacin for a month that wiped me out instead of the bugs from the pelvic area.

At this point my general practicioner suggested that prostatitis, after antibiotic treatment is an autoimmune disease and it should be treated by "slowing down" the immune response. I strongly doubted that any infection was cleared and I tried to argue with him that I did some research on this enigma, labelled CP and found that many pathogens can be the culprit. He did not seem to believe me. I did not want to look like a smartass, who questions everything the doctor says, so I started taking alleve, which did not help at all. (Just how an antiinflammatory drug would turn the immune response off when there is still a chronic infection there - well, that's a tough one)

After the unsuccesful treatment of alleve, prednisone was suggested, which refused to take.  Flagyl  for 7 days followed and a trial of  cardura that made me dizzy and unable to concentrate.  I took cipro for 10 days, I guess as the desert of a rather complete antibiotic feast. Needless to mention, the urinary problem never got better. In the meantime developed adenoid problems because of the repeated, senseless (never a culture/sensitivity test was done) antibiotic cocktails, followed by rather bad muscle and joint pains, feverish sensations without actually having high temperature, nightsweats. Another doctor concluded that the antibiotics may have thrown up all the bugs in my systems, and that's it, it'll go away.

Soon  I was suggested that I may have had Reiter's syndrome or lupus! One of the latest theories was viral syndrome or chronic fatigue syndrome. Antinuclear antibody, rheumatoid factor were negative, pelvic ultrasound (bladder, kidney) was perfect. Other tests were done, all of them with fine results. Yet again, they looked at me like I was nuts! I kept asking about the CP, and there was no doubt, the doctors were convinced that I was free of any possibly harmful bacteria, because the tests were negative and I took enough antibiotics.

I am developing reactive arthritis nowadays, and at this ripe, old age of 31 it is of course acceptable, isn't it? In fact, my GP told me in the most matter of fact way, that sometimes people develop arthritis after a urinary tract infection(Reiter's syndrome).The underlying belief is that there is no bug detectable, thus  there is no more infection in the pelvic area, just inflammation.What can I say. Non-detectable can mean three things.

The bug is not there, nothing to be detected. The bug is there, but we do not have the means to detect it. The bug is there, we have the means, but we are sloppy about detecting them and generally we assume that tiny amounts of pathogens could not possibly cause systemic reactions or they are just normal flora wherever they are.

Small, "undetectable" amounts of pathogens may well be the culprit not only in CP, but perhaps in other diseases. Diagnostic medicine has great potential to detect pathogens but  the technology is not enough. The medical profession has to be willing to look for them, otherwise they remain "undetectable", further causing harm, creating bigger problems over time.

I am sorry,  that this turned out to be  this long. It would have been much shorter,  had I been able to get adequate treatment. I know CP is not the end of the world and I can try to live with it, but why should I do that? Thanks for this forum and the participants, for  it has been  my only support the past year with regards to CP.
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