New here with CPPS

Male pelvic pain, prostatitis, IC
24_7
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New here with CPPS

Post by 24_7 »

My story starts when I was in the hospital for a elective surgery back in 2004. I was urinating in a catheter.

Ever since the recovery of the surgery, I have had an increase in urgency and frequency. Last year, it got really bad (needing to go every 5 minutes at night) and I saw my family doctor. I had the urine test, which turned out fine. My symptoms decreased after a point. It got bad again some months later, and I requested to see a urologist. I had a kidney ultrasound - everything was fine. Urologist gave me an antibiotic. Symptoms decreased and I was normal for a month. Came back - I had a rectal exam. Went back again to see urologist and he suggested the cystoscopy.

After reviewing all the results, My urologist said it was just prostate inflammation, or chronic prostatitis, and it was possible the inflammation started after the surgery and catheter. He gave me samples of Detrol LA and a prescription script.

I decided not to start taking it right away. I was fine for about two weeks, after my cystoscopy, and without any medication. But, of course, it came back, so I started with the medicine. I believe I'm allergic to chocolate (moreso chocolate bars...than say a chocolate flavored protein drink), as on two occasions I had bad flare ups (increased urgency and frequency). Once eating 2 dove bars.

I stopped with the chocolate, and take very little caffeine. Most days I'm without it at all.

I'm currently on Detrol LA - however, it is not very effective. From the commercials, it seems more for overactive bladder, and OB symptoms are still different from what I have. For me, I can hold the urine in, and it's usually a small amount. However, it's very uncomfortable doing that, or having to go after every 10 minutes.

I currently am not having real bad flare ups, but I'm still needing to go, over 15 times a day, atleast as of yesterday and today. Tomorrow maybe different.

And, usually after I go, I don't get the satisfaction that I used to. I feel a slight sting and I know I'll have the urge to go again in about 10 mins or so. That alone is depressing, especially when I'm trying to fall asleep at night. However - once I'm asleep, I don't have to wake up to empty my bladder usually.

I'm seeing my urologist again in April. As I've already given up chocolate and caffeine and am taking Detrol, what would be the next approach to trying to relieve my symptoms and cure myself? I still take the Detrol as a safety, just to prevent a really bad flare up day and night.

I'm going to try more exercise - possibly swimming again. I have read about avoiding wheat - but its a staple diet item for me, as I'm vegetarian, and I don't think it is the problem anways. Any help would be appreciated. Thanks.
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webslave
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Post by webslave »

I'm not sure I agree with your chronic prostatitis diagnosis. Urgency and frequency on their own do not suffice.
Good News! The great ProstaQ is BACK at last! You must try it.

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carld
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Post by carld »

Did your Urologist do an EPS ( expressed prostatic secretion) test to see the WBC (white blood cell )count? This test can be a strong marker for prostate inflammation. Do you have any discomfort, like burning in your perineum or pubic area? An inflamed prostate can contribute to feeling like you have to pass urine and frequency and decrease in stream and flow., cause a burning feeling etc...

Have you read the book a headache in the pelvis?

Do you suffer from any form of anxiety/panic/stress?
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
scoobysnacks
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Post by scoobysnacks »

how old are you. So they ruled out an enlarged prostate?
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex
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Post by kevin »

24_7: As someone who has very similar symptoms, I feel for you. Your observation about overactive bladder is right -- urinary frequency is a different phenomenon.

The first thing would be to try the Stanford/Wise-Anderson Protocol. Have you gotten your pelvic floor checked out?
I have read about avoiding wheat - but its a staple diet item for me, as I'm vegetarian, and I don't think it is the problem anways.
I would never have expected wheat to be a problem for me either (I didn't have any acute symptoms after eating it), but after deciding on a whim to go off it for two weeks I realized that many of my 'vague' symptoms went away.

Good luck. Let us know how you progress.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.

Not medical advice. Consult your doctor.
24_7
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Post by 24_7 »

carld wrote:Did your Urologist do an EPS ( expressed prostatic secretion) test to see the WBC (white blood cell )count? This test can be a strong marker for prostate inflammation. Do you have any discomfort, like burning in your perineum or pubic area? An inflamed prostate can contribute to feeling like you have to pass urine and frequency and decrease in stream and flow., cause a burning feeling etc...

Have you read the book a headache in the pelvis?

Do you suffer from any form of anxiety/panic/stress?
I don't think my urologist did an EPS, unless its part of the urine test.

I get some slight burning at my penis tip after I urinate. I don't think I have anxiety/panic or stress causing my symptoms. My bowel movements can make a difference - especially if I have to push. But as far as pyschological, usually, I'm better off in the daytime when I keep my mind busy with other things. I noticed if I hold my urine in for awhile, sometimes after an hour, the pressure actually reduces. I wonder if its something at the penis side, where the feeling of urinating is there, and not the bladder side.

But from a rectal exam and cystoscopy, the urologist said it was prostatitits. I thought that was enlarged prostate?

As far as medication, I just feel the Detrol LA isn't effective, and I shouldn't be wasting my money on it. However, I wouldn't mind paying for something that I feel can help.
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24_7
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Post by 24_7 »

kevin814 wrote:24_7: As someone who has very similar symptoms, I feel for you. Your observation about overactive bladder is right -- urinary frequency is a different phenomenon.

The first thing would be to try the Stanford/Wise-Anderson Protocol. Have you gotten your pelvic floor checked out?
I have read about avoiding wheat - but its a staple diet item for me, as I'm vegetarian, and I don't think it is the problem anways.
I would never have expected wheat to be a problem for me either (I didn't have any acute symptoms after eating it), but after deciding on a whim to go off it for two weeks I realized that many of my 'vague' symptoms went away.

Good luck. Let us know how you progress.
I don't think I had my pelvic floor checked. Is that invasive? Just had a cystocopy.
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24_7
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Post by 24_7 »

scoobysnacks wrote:how old are you. So they ruled out an enlarged prostate?
26 Isn't prostatitis, prostate inflammation, the same as enlarged prostate?
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kevin
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Post by kevin »

Pelvic floor therapy is the bread and butter of treating CPPS. Order the book A Headache in the Pelvis and go through the literature on this website.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.

Not medical advice. Consult your doctor.
24_7
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Post by 24_7 »

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