Redness- any clue to cause? (Che123's case)

[che123]

Hi all, I went in and had a cystoscopy done recently (I was put under as an out-patient procedure with a rigid cystoscope). The urologist said that the inside of my bladder looked a little 'rough,' but that that was not a big concern. He did find that the opening of my urethra at the 'meatus' was too small, small enough that he could not even get the cystoscope in. So he made a small incision to enlarge the opening at the meatus. The uro thinks that the added pressure that the small opening would have caused in urination over the years may have contributed to my problems. I was wondering if anyone else has had any 'stricture' type problems revealed in their dealing with CPPS? Also, he has suggested that if my symptoms do not get better that I should do an MRI to look for any other potential serious problems. I have read on here that most people on the board with chronic prostatitis / chronic pelvic pain syndrome symptoms who have had an MRI or further investigative procedures, have not found anything of note. My worry is that I don't want to 'self diagnose' this as chronic prostatitis / chronic pelvic pain syndrome if there may potentially be something else going on inside of me. To anyone that has been through one of the Stanford Wise protocol clinics, what tests do they do there to rule out any other affliction to determine and diagnose CPPS? Did they perform a cystoscopy or TRUS or MRI? Has anyone on here thought that they had chronic prostatitis / chronic pelvic pain syndrome to find out later that they had cancer or some other affliction that was not CPPS? I don't want to over do the procedures (especially considering the costs), but I also don't want to brush off something if there is a chance there may be a more serious problem than muscular dysfunction. Any experiences or advice would be welcomed- thanks everyone!

[Jay]

Hi there,

I'll have to leave the Stanford aspect of your question to someone else, as I haven't actually been there. However, I understand that Dr. Anderson doesn't half-ass the examination (there's an endorsement for ya).

Regarding the rest ... Cancer is a common, though generally unwarranted fear when it comes to this condition. We've had some fellows on here who are cancer survivors. As far as I can recall, this wasn't the cause of their chronic prostatitis / chronic pelvic pain syndrome symptoms. Rather, it came on following treatment of said disease. I won't say that it's impossible, but the younger you are, the less likely it is.

It's also important to note that prostate cancer is often asymptomatic. Many men die with it, rather than due to it, sometimes without even knowing they had the problem. That's what makes testing so important when you're older, but for us, it also indicates that we must usually look elsewhere.

I had additional testing at my PT's advice, not because she suspected something else, but as a precaution. I hadn't had a lot of testing at that point and it's always wise to cover your bases. I've had testicular ultrasounds, urinalyses, kidney and renal ultrasounds, blood testing, pelvic and lower lumbar MRIs, etc. No cystoscopy because I just wasn't having anything stuck up there, as much pain as I was in! My pain management doctor prescribed most of the testing at my request, but he told me in advance that he felt nothing would be found. In my case, he was right. The pelvic scan was actually flawless, whereas my back had issues I was unaware of.

If you have the money for an MRI, then sure, go for it. They can be revealing. However, I wouldn't (as a layman) chase testing much beyond that. You get into increasingly invasive and "out there" procedures, probably for nothing.

Also, regarding the surgery on your meatus ... I've heard this one here before. If you haven't had the surgery yet, I would get a second opinion. The urologist may very well be right, but given that you already have chronic pain, I'd want to be certain before going under the knife. Just my opinion.

[che123]

Hi Jay, thanks for the reply! The uro actually did the small cut at the meatus while doing the cystoscopy. It was a very minor incision, like 1/4 inch at the most. That's what makes me think that that really can';t be the cause of all of this for me. I think he just had to make the cut in order to actually get the cystoscope inside. Other than some 'cramping' pains (like a stomach ache) for a number of hours after the procedure, I really felt very little pain, because I did the procedure while I was put under. I don't think I could have done it with the local anesthesia in the docs office while awake! I may go ahead with the MRI in a couple of months if my symptoms continue. I must say that overall my symptoms have improved greatly compared to when this first started for me. At the worst point in this, I literally thought I was going to have to go to the emergency room because I was having such sharp pains down my penis, and the inside of my legs/groin area. At the present, its more of an inconvenience and nuisance, but nothing as severe. I hope it stays that way and continues to get better. It is weird that when I do get a flare up, the muscles in my hip flexers and my hamstrings get very sore, again pointing me to think this could be a muscle related issue. Thanks for the insight...

[snoopy]

Che,

If you want to get the MRI to rule out obvious disease go for it. Stanford will only perform a routine urological exam, hopefully this would include a culture of prostatic secretions. THe PT will check your external and internal musculature for problems and TrPs. If there is pain, you are mostly assured that the painful areas are where your problem originates, especially if palpation of these areas recreates pain or refer/create pain in other areas.

Best, Snoop