UCPPS - Prostatitis, Interstitial Cystitis Forum

Did all you guys get tested for IC? and what tests? The symptoms all sound like IC. Having cystoscope this week and wondering if that will tell me one way or the other. I know it is rare for men to get IC but so is CPPS.

Similar symptoms but IC tends to feature painful, frequent urination.

calguy wrote:Did all you guys get tested for IC? and what tests? The symptoms all sound like IC. Having cystoscope this week and wondering if that will tell me one way or the other. I know it is rare for men to get IC but so is CPPS.

When I had my cystoscope, the uro was able to see inside my bladder and distended my bladder by putting water so He could see the walls. My understanding is the doctor can see abnormalities on the walls or signs of irritation/inflammation/ tumors etc. I think in your case, you will experience the same results as myself. Negative and everything will be normal. That will give you the piece of mind that this is likely related to tight/tired muscles that are causing your symptoms. As a result there may be foods that irritate and the whole pelvic myoneuropathy happening here.

Diagnosis of IC is made based on symptoms these days -- cystoscopy is useful, but is no longer used to rule out IC. They now call it "painful bladder syndrome." Like webslave said, the symptoms tend to be similar, except IC is associated with more urinary urgency and frequency.

You might have bladder hemorrhages, but most people here do not, even those with urinary frequency/urgency. Worth getting it ruled out, though.

In working with my PT who does a great deal of work with IC patients as well as PFD patients, she stated that the majority of the patients with IC also had IBS.

So, if you don't have IBS it may be that you don't have IC as the two seem to go hand in hand.

Regardless, there are a lot of crossovers with this whole area of PFD / IC, etc.

webslave wrote:Similar symptoms but IC tends to feature painful, frequent urination.

My good friend got IC. The symptom are bit a different. He got so many "forbidden" foods that according to him, eating/drinking the wrong stuff is like a grenade going off in his bladder. It started with urinary frequence and got worse over time..

It wasn't mentioned yet that IC is often combined with a clear and sharpe pain in the abdomen in which with chronic prostatitis / chronic pelvic pain syndrome the pain is more diffuse and "soft", but long-lasting.

A negative cystoscopy doesn't 100% exclude IC. If you want to be sure you should do a "potassium-chloride" test. First your bladder will be filled with normal water, than the amount of water where the first urge feeling and the maximum amount of water you can hold will be documented. After that the same procedure will be done by filling your bladder with this potassium-chloride mix. The IC diagnose is positive if there is a noticeable difference between the first filling.

Potassium tests aren't 100% reliable either as there can be false negatives.

Calguy

Did you have a bladder infection before getting your prostatitis? I did-I went to two worthless UROs that creamed me with antibiotics. They did nothing to help me-I ended up seeing a URO "Stanford instructor" very cool guy. I showed up in his office-He saw how screwed up I was from the ABs-My pulse was 140. He put me in a hospital cown and kept me there for two solid hours-gave me the works. Ordered blood test and determined that I actually had IC and not prostatitis from a simple visual exam-he could see the bumps on my prostrate. Over the course of time the problem has continually decreased. I went through the stage where I couldn't sit for more then 15 minutes without going to urinate. That last two weeks it has slowly diminished. I'm not experiencing any bladder pain, but prostatitis symptoms. I went from having really bad testicular pain to mild pain to nothing at all. I still get the burning urination to some degree-it almost all diet related. Drinking beer and or fruit juices-if all I drink is water I don't have the burning problem. I'm not sure which is worse IC or prostatitis. The treatments are very similar. Both conditions can be controlled. Through relaxation-exercise, PT, diet and some meds. IC is rarely progressive and tends to go in remission or even become less of a problem. I know it's rare from men to get, usually through surgery. I'm doing a lot of stretches and following the protocol for chronic prostatitis / chronic pelvic pain syndrome and having excellent results. If you find out you have IC PM me I have some good websites you can visit.

elitynski wrote:Potassium tests aren't 100% reliable either as there can be false negatives.

Agree. There is no gold standard lab test for either chronic prostatitis / chronic pelvic pain syndrome or IC, and furthermore no test to differentiate between chronic prostatitis / chronic pelvic pain syndrome and IC. The potassium sensitivity test and cystoscopy with hydrodistension do not accurately detect what urologists would call IC. Also, some IC patients have food sensitivity, and some do not.

In the end, whether you call it IC or chronic prostatitis / chronic pelvic pain syndrome really depends more on your overall set of symptoms, not just one. If someone has more urinary frequency and urgency, and especially burning on urination, and respond to the IC diet, I'd usually call that IC. If someone doesn't really have bladder-related problems and has more heavy pain than anything else, I'd call that CPPS. But the name you call it is not important in the end. What's important is how you treat it.

MikeinCA wrote:Calguy

Did you have a bladder infection before getting your prostatitis? I did-I went to two worthless UROs that creamed me with antibiotics. They did nothing to help me-I ended up seeing a URO "Stanford instructor" very cool guy. I showed up in his office-He saw how screwed up I was from the ABs-My pulse was 140. He put me in a hospital cown and kept me there for two solid hours-gave me the works. Ordered blood test and determined that I actually had IC and not prostatitis from a simple visual exam-he could see the bumps on my prostrate. Over the course of time the problem has continually decreased. I went through the stage where I couldn't sit for more then 15 minutes without going to urinate. That last two weeks it has slowly diminished. I'm not experiencing any bladder pain, but prostatitis symptoms. I went from having really bad testicular pain to mild pain to nothing at all. I still get the burning urination to some degree-it almost all diet related. Drinking beer and or fruit juices-if all I drink is water I don't have the burning problem. I'm not sure which is worse IC or prostatitis. The treatments are very similar. Both conditions can be controlled. Through relaxation-exercise, PT, diet and some meds. IC is rarely progressive and tends to go in remission or even become less of a problem. I know it's rare from men to get, usually through surgery. I'm doing a lot of stretches and following the protocol for chronic prostatitis / chronic pelvic pain syndrome and having excellent results. If you find out you have IC PM me I have some good websites you can visit.

On the visual exam, what do you mean by that Did you have a TRUS done so the Uro can see the "bumps" on the prostate

This is all quite interesting. I have had only frequency, with more urgency since my cystoscopy w/hydrodistention. I was diagnosed with IC, but do not seem to have any dietary triggers. Nor have I EVER had any sort of pain (at least not since the cysto.) I've started PT for PFD, as the uro. and the PT found some trigger points.

All rather confusing.....

I have never had any pain either at least in the bladder area. Mine has always been in the prostrate region.

I don't have any more urination frequency now than I did before the event. I did for a period of time the first month associated with a lot of burning and dripping.

I've never had any testing other then this URO making a visual observation and saying, "gee look at all the bumps". Then he gave me the diagnoses of IC.

What could be these bumps be? Can it be assoc. with CPPS?

I did find this surfing the web

"Cystitis in men is uncommon. When it does occur, the usual cause is an infection that has spread from an inflamed prostate gland or that has developed in the bladder because of an enlarged prostate."

For what it's worth

MikeinCA wrote:I have never had any pain either at least in the bladder area. Mine has always been in the prostrate region.

Bladder and prostate are in the same area. You cannot say it is one or the other.

I've never had any testing other then this URO making a visual observation and saying, "gee look at all the bumps". Then he gave me the diagnoses of IC.

If said during a cystoscopy, he was probably referring to Hunners ulcers or glomerulations (pinpoint submucosal hemorrhages). You should have asked him to explain exactly what he saw. Call him and get him to retrieve the test results and explain them to you in layman's language — it's your right as a patient.

"Cystitis in men is uncommon. When it does occur, the usual cause is an infection that has spread from an inflamed prostate gland or that has developed in the bladder because of an enlarged prostate."

For what it's worth

That has nothing to do with IC.

Webslave

This URO never did a cystoscopy or any other test. I was lying on a table while he did a DRE and that is when he said, "Gee look at all the bumps". I later talked with another URO in SF that is very easy going and a nice guy, which also had chronic prostatitis / chronic pelvic pain syndrome for years and is now fine. I told him about the IC diagnoses and his commit was "that doesn't sound right". He went on to commit about testing required to accurately diagnosis it. He also mentioned that men could have nodular prostrate conditions. My PSA test came back as 1.6 nor do I have painful urination. I may get up once a night to urinate-When I do get burning it may be later in the day after sitting for long hours and it's only at the start of the stream. Can the bladder be seen from a DRE?

From what I've been told a clinical diagnosis of IC (just another way of saying a diagnosis based on symptoms) is accepted by Social Security for SSD cases.