Not sure about IC diagnosis...

[vaughan]

I have had frequent urination sometimes with burning, dribbling after urination, kind of a gnawing discomfort and burning in my penis most days, and occassional reddish burning scrotum for going on two months. The first urologist called it prostatitis, gave me cipro, doxycycline, and even azithromax with no change. Urine tests are always clear, and a urine culture proved negative. A second urologist did a cystoscopy (ouch!) and said it was normal. He has me scheduled for a urodynamics test in a week. With no infection being found, no swelling detected in prostate, and symptoms continuing, the second urologist diagnosed me with IC.

Are my symptoms above typical of other male IC sufferers? Especially the annoying urethral burning discomfort?

Do you think the second urologist has misdiagnosed me with IC?

[statesboro]

I want to start by giving you a welcome first of all. I will state that I am another dude second of all. I did not go to the urologist complaining of pain, but I was told my prostate must be inflamed at first. I was on antibiotics for 2 months without any change.(then more for another 2 months without change)(and again) OK. I finally had the cystoscopy with hydrodistention and got told severe IC. If you have been on cipro, doxycycline, and zithromax without any change, then I would be thinking IC. Of course, I don't know your age now. I was diagnosed back in 1997 at age 31; therefore, I was not thinking my prostate should have been messed up. We are all different in ages, gender, symptoms, and medications. Yep! You did state the prostate is not swollen and that cystoscopy hurt.(as in ouch) OK. I am just figuring IC sounds right. Some of us do want to question the diagnoses sometimes. Oh! We don't enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Besides, some male IC'ers have mentioned burning in the penis.(and painful ejaculation) OK. You should get other replies as well.

[vaughan]

Thank you, Statesboro. You're right, I do want a correct diagnosis. I just had the urodynamics test done last Friday. The urologist will tell me the results next week. The urodynamics test was very painful! I felt it was much more painful than the cystoscopy, and the uro test took longer! I have never had a catheter in my penis before, and it was excruciating to me. I don't think I can endure a catheter again unless I am sedated! I have a low tolerance for pain, and I admire (and envy) all those who claim it is only "mild discomfort." As before, I continue to have the daily somewhat annoying pain/burning in my penis and also in the area between my scrotum and anus. I still have the urgency to urinate and do experience burning after ejaculation but NO burning during urination. I cannot wait to see what the urologist will tell me on my next visit to him when he tells me the results of my urodynamics testing. I will let you know what he says. I just pray I do not have to have another catheter! I wanted to scream bloody murder and actually could have cried ou loud!

[statesboro]

I had figured you would have more responses by now. I am still glad you did update and that you plan to further update. Besides, we don't have as many males coming on here. Of course, I am not ashamed to admit that I have got a chronic illness at all. I may not look like I have got one, but I do want more people to be aware there is such a disease/chronic illness as interstitial cystitis. Yep! I was diagnosed at a time that it was still being called a womens disease by many people. OK. One thing that I don't like is reading an article, or even someone's post, where any individual that reads it could get the feeling that it is a womens disease. Regardless, some of us know better. Yep! I do realize more females have been diagnosed with IC by now. I just want to state one more thing right quick. I am a 44 y/o man, but I do know my tear ducts work well enough. Yep!

[sherwood]

As an alternative view point, and many urologists still ignore the following, many of the symptoms you describe can be referred pain from neuro-muscular tension and trigger points. Information about this can be found at: http://www.pelvicpainhelp.com/

with a list of symptoms in men:
http://www.pelvicpainhelp.com/index.php#men

and specific referred pain can be found here (scroll down to see specific pain sites): http://www.pelvicpainhelp.com/physical_therapy.php

sherwood

[ICNDonna]

I'd also like to say :welcome: to the IC Network.

It's not unusual for a bladder to appear to be healthy and normal when viewed by a cystoscopy in the doctor's office. I know mind did. It was not until it was distended under anesthesia that the IC became visible.

It does sound like you have found a doctor who is up to date and willing to help you identify your problem. I hope you don't have interstitial cystitis, but if you do (It does sound like a distinct possibility), it's good to know so you can take steps to help you feel better.

I think it would be a good idea for you to give the diet a try just to see if it helps. I suggest you begin right now and not wait for a diagnosis. You'll find diet information at the link in my signature below.

Sending healing thoughts,
Donna

[KarenNielsen]

I agree with Sherwood; you sound like you have a case of male pelvic floor dysfunction (PFD). This can include IC and/or neurogenic bladder, but these are for PFD patients just part of a complex of symptoms related to overall hypertonicity and spasticity of the entire pelvic floor musculature.
In addition to the link already supplied you; you might benefit from looking at the "pelvic floor therapies" section of this Board and also looking at www.pudendal.info to see if you think you need to be examined for pudendal nerve involvement.

[sshannon74074]

vaugn,

I was treated for chronic prostititis for 1.5 yrs with all kinds of antibiotic with no help. My doctor did a quick and dirty cytoscopy and said my bladder looked fine but my prostate was inflamed. This was tremendously painful since I was not under general anethetic. So back on the antibiotics to no avail again. Went to another doctor and had another cytoscopy/hyrodistention with general anesthetic and this doctor said I had IC with no prostatitis. That was 1.5 yrs ago so I've had the problem for 3 yrs. So my gut feeling is that I have both from time to time as it comes and goes and they are both caused by one underlying factor. I just don't know what that is. I would talk to your doctor about cystoscopy/hydrodistentions. This way they can expand the bladder to see the condition and bleeding occuring. (I had blood in my urine for 2 weeks afterwards)

Right now I'm putting my faith in the PFD theory and staying on the IC diet

Scott

[sshannon74074]

vaghn,

your pain almost sounds like a urethral stricture with more pain in the urethra than bladder. I have IC and pain in my bladder. It hurts when I apply pressure to the bladder area.

Do you have a great deal of urgency?

When you did the cystoscopy did it hurt initially or when the probe passed the prostate

For me it initially did not hurt but passsing the prostate :cussing:

[vaughan]

The urologist now says I have BPH and has put me on Uroxatral with Prosed DS as needed. He re-assessed my IC diagnosis after looking at my urodynamics test results. He does not believe I have any infection because urine tests and urine cultures are negative. (I believe he should do a prostate secretion culture, but he disagrees.) Plus, he said if I had had any infection, STD or other, that the Azirthromax, Doxycycline, and Cipro would have gotten rid of it.

I will go back in August to see the urologist to see how the Uroxatral is working.

I'm taking Prelief and have cut out all diet soda. I just got the prespcription for Uroxatral, but haven't taken it yet because I've had two days with minimal burning discomfort. Today the burning came back, so tonight I'm taking the Uroxatral to see what happens.

Sometimes I think the doctors really don't have a clue! I can't understand why the doc won't just take a prostatic secretion culture to check for infection. After the tremendous pain I endured with the cystoscopy and the Urodynamics test, I think the prostate culture would be relatively simple.

I just pray every day that the annoying burn subsides for good!

[sshannon74074]

Yes I know what you mean about the doctors. Sometimes I think they know more than they are telling us but they want to string us along for the money.

I tried uroxatral too and it didn't help but it may for you. sounds like we have different problems though because I don't have any urethra pain other than a sharp phantom pain that lasts just a couple of seconds and goes away.

My symptoms are bladder pain, increased urgency and frequency to urinate. when they did the hydrodistention I had blood in urine for two weeks. Thats telling me my bladder wall was cracking apart when it expanded. Ive tried a lot of medicines but I haven't tried the pre relief yet. I'm ordering some tomorrow.