Why urinary pain?

[guy97]

I'm starting to discover that, as has honestly always been the case, simply urinating is the thing that causes me the most pain, and for a good half hour after each urination, as well, especially in the penile tip.

The pain only happens while urine is actually flowing (it feels like pissing acid) and then I'm left with a stinging in the urethral tip for the next half hour. Sometimes I will have to void a small extra amount after finishing (like any guy) and there will be no pain (save the typical post-urination sting) until the extra urine is actually flowing.

I'd like to understand how pelvic floor dysfunction causes such urinary pain... it might help me treat it?

[webslave]

Pain when urinating is the classic onset symptom of interstitial cystitis/bladder pain syndrome, resulting from inflammation of the bladder/bladder neck.

Acute stress can trigger inflammation in mammalian bladders.

[guy97]

I had a cystoscopy. The urologist said he'd never seen a healthier bladder. It's not bladder inflammation... Anything else?? :-(

It actually concerns me that I see very few reports of dysuria anywhere on these forums when that is far and above my main symptom.

[webslave]

Did he report on your bladder neck and urethra?

[guy97]

Yes. He said all were extremely healthy. I had the cystoscopy to look for IC, urethral tears, strictures, etc. But he said the cystoscopy showed absolutely everything was completely normal.

My physical therapist said something about "release pain," but the pain doesn't come when I release, but when the urine actually flows. And it leaves a sting for about 30 minutes... and once that's over my typical penis soreness/rectal soreness resumes.

Also, while my other symptoms fade from distraction (golf, etc.), it doesn't make urinating any less painful.

[webslave]

Unfortunately, inflammation is not always visible. Unless you have Hunner ulcers, findings may be normal, even though you still have IC/BPS/PBS. It's more a diagnosis by exclusion, based on symptoms.

[webslave]

Try to do the Interstitial Cystitis Symptom and Problem Index (O’Leary-Sant Interstitial Cystitis Symptom and Problem Index).
http://www.orthoelmiron.com/orthoelmiro ... y_sant.pdf
Also these:
http://www.uroassociates.org/pelvicpain.pdf
http://ucpps.men/1/

Dysuria (painful urination) is a onset symptom for IC, and can be associated with infection.

[guy97]

I got moderate to high results on these tests. I have constant pain, worst during urination, but no particular frequency issues; that combined with the clean cystoscopy baffles me.

Should I add Elmiron to my "list of medications to try out" (currently including tramadol, Elavil and Lyrica), despite the totally clean cystoscopy?

Is severe dysuria indeed not typically associated with CPPS?

[webslave]

No, severe dysuria ("pissing acid", as you put it) is not a typical symptom. In my own case, I only had it once, after a rigid cystoscopy (I described it as "pissing razor blades").

In general, if it is not caused by infection, dysuria in chronic prostatitis / chronic pelvic pain syndrome is associated with dietary factors. Some culprits are:

• Benzoate preservatives. Do you drink soda pop? Read labels carefully, and in general, avoid carbonated drinks.
• Very spicy food. Avoid hot spices. I also found paprika to be bad, for some reason.
• Very sweet foods. I found maple syrup was a trigger for dysuria for me.
• Very acid foods, like cranberries, vinegary foods, etc. If you are taking Vitamin C (an acid), make sure it is a "buffered" form.
• Caffeine: some people with pelvic pain syndromes report that caffeine will cause symptoms.

From our Protocol page:

IRRITANTS AND TRIGGERS

Different people have different triggers/irritants, but here are the most common you may wish to experiment with avoiding:

Food: Excessive amounts of high sugar foods, alcohol, spices, vinegar, caffeine, coffee, chocolate, sodium benzoate (a histamine release trigger), milk products, very acid foods (e.g. tomatoes, cranberry drinks), Nutrasweet. An exclusion diet will define your unique list of food irritants and triggers. Wheat (a lectin that can make mast cells more leaky and more prone to trigger) seems to be a specific trigger for many individuals, even those who test negative for celiac disease (sprue). Their stories are available on the prostatitis newsgroup archives. The issue of diet is a huge one for some men, who swear that by modifying their diets they were able to calm or eliminate the pain in their groins. These men tend to be "atopic", reacting to some foods with diarrhoea, stomach pain, phlegmy or "tight" throats, headaches, rashes, excessive sweating, depression and fatigue. If that sounds familiar, read this excellent book: Food Allergies and Food Intolerance : The Complete Guide to Their Identification and Treatment Jonathan Brostoff MD, Linda Gamlin

Sexual Activity: too much sex, too little sex. Find the right frequency for you. Be sure to avoid "Tantric" sexual practices, which involve grasping the penis tighly to prevent ejaculation. Some men have reported that this started their problems.

Sitting or pressure on the perineum. Pressure may trigger mast cells.

Marijuana

Psychological: stress. Stress in mice and cats triggers their bladder mast cells. Most likely this occurs in humans and other mammals too.

Exercise: strenuous exercise can provoke flares for some by triggering mast cells.

Medications: avoid those which can cause urinary retention. Be careful of decongestants and antihistamines such as Sudafed, Tavist-D, Contact, Afrin etc. Some people report problems with SSRI antidepressants (Prozac, Zoloft, Celexa, Paxil etc). Some men say their condition was caused by thermogenics (Xenadrine, Hydroxycut). Several men have reported their condition being triggered by androstenedione, a direct hormone precursor of testosterone, which is used (abused?) to build muscles in bodybuilding. Dr Shoskes says he has seen many men report getting symptoms after taking testosterone. Some men experience bad effects from drugs like Prilosec, Lipitor, Lescol, and Aciphex. One man reported Sectral to cause symptoms.

[guy97]

• Benzoate preservatives. Do you drink soda pop? Read labels carefully, and in general, avoid carbonated drinks.
• Very spicy food. Avoid hot spices. I also found paprika to be bad, for some reason.
• Very sweet foods. I found maple syrup was a trigger for dysuria for me.
• Very acid foods, like cranberries, vinegary foods, etc. If you are taking Vitamin C (an acid), make sure it is a "buffered" form.
• Caffeine: some people with pelvic pain syndromes report that caffeine will cause symptoms.

None of these (I despise almost all carbonated drinks and spicy food, I don't drink coffee), and nothing else that you mentioned, either. Yikes.

I had the pain before the cystoscopy, and after. I have had no relief from Pyridium.

So I seem to have a bizarre undiagnosed issue. It could be simply that the urinary pain (which was originally my only symptom!!) is causing the allodynia that's leading to everything else? But where does the pain come from if my cystoscopy showed a totally healthy bladder... ? Should I try IC meds and see if they help at all?

I'm so confused. I really appreciate your telling me that dysuria is uncommon here, because I'm starting to notice that I may not have as much in common with chronic prostatitis / chronic pelvic pain syndrome patients as I originally thought. Some things, for sure, but...

Blarrr. I'm confused. Thanks for everything you're trying to help, but the fact that my symptoms don't match anything is burning me as badly as my own urine.

[webslave]

I'd be interested in knowing if you are regarded by yourself or others as highly strung, or nervy, or neurotic, or obsessive, or have ever had treatment by a psychologist or psychiatrist.

I'd also like to know what you eat and drink.

[guy97]

Not really. My main faults are generally seen as over-enthusiasm and over-gregariousness, over-talkativeness, and occasional insensitivity/foot-in-mouth-disease borne out of rambling too much. My only obsession is also my main relaxation: golf.

I had a few brief sessions with a psychiatrist almost a decade ago for social awkwardness; that's all.

I eat a balanced diet, albeit one of cheap foods. I do probably get a little more sodium than some doctors might like. I tend to have waffles with peanut butter and jelly for breakfast along with some fruit, a meat-and-cheese sandwich along with carrots or other veggie for lunch, and maybe a frozen pizza and a bag of frozen veggies for dinner. I'll snack on Cheez-Its, hard-boiled eggs or baby carrots. I don't really cook, hahah!

My only stress comes from being single, and from fear that my condition will never abate. The first is minor; the second is the reason I am here in the first place!

Again, just a reminder: this started from a UTI that I probably contracted sexually (idiot, Guy, idiot, idiot, idiot...)

[webslave]

Over-enthusiasm may point to excitability and a highly strung, "sympathetically-dominated" personality. People who predominantly activate their sympathetic nervous system (Type A personality) tend to suffer from stress related symptoms such as heart problems, high blood pressure and insomnia. And CP/CPPS

Your treatment for social awkwardness may indicate an element of social phobia, an anxiety disorder. Anxiety is almost the norm in this patient group.

Your diet is full of processed foods with innumerable ingredients and preservatives (again, search for benzoates!). Not ideal.

As for the initiating infection, what was the bacterium involved?

[guy97]

Yes, I am very excitable. But I have normal blood pressure, a normal social life at this point (I grew up and stopped being a teenager), and I sleep like a baby. (Then again, I'm 23.)

As for the bacterium, unfortunately, we don't know. At the time, I had no idea how serious this would turn out to be. They simply found elevated leukocytes and gave me a 10-day course of Cipro. They never identified a particular pathogen. Subsequent tests were clean seven days after I started Cipro.

... come to think of it, I've heard reports of fluoroquinolones causing nerve damage... Ugh, if that happened?

I need to get myself some pregbalin/Lyrica.

Incidentally, if I haven't made this clear, almost all my pain is in the penis/penile tip.

[webslave]

So no infection perhaps, but the usual WBCs. That's par for the course.

I highly doubt you have quinolone damage.

Penis tip pain is usually isolated to the insertions of the levator ani, which lie behind and around the prostate.