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Newly diagnosed, some thoughts on interrelated conditions

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  • Martin
    replied
    Wow happy to see that it is finally hetting some action in mens department. I to tired to right my whole history at the moment, but I can say it pretty much is the smae as everyone else inhere. Infection, prostatitis, nonbacterial prostatitis, chronic pelvic pain syndrome and the last one IC:
    I am currently on Elmiron and Algonot. I dont really have any pain just frequency and some sexula issues. I think my sexyal problems has become a little worse since starting Algonot but I will hang on to it to see what is happening.
    Martin

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  • sonick
    replied
    Wow, I wish I would have seen all these replies sooner, I forgot all about this 2+ year old thread! Thanks for all the replies and info-sharing! Since I posted this originally, I like most all of you have come across the interrelations with prostate and urinary tract in general. My hydro pictures reveal a VERY crimson and angry urethra, prosatate, and urinary tract in general, in ADDITION to the telltale bladder hemmorages. The whole shebang is extremely inflammed and angry. Fugazzato found staph in my prostate fluid assessment, but nothing in the bladder. I stumbled across the "Manila protocol" while researching, and found a practitioner here in town that is willing to administer the protocol and order the correct labs to assess the follow-ups. A good thing considering my insurance should pay for most of it (I'm way past my '03 deductible already). I'm not jumping up and down about thorough, painful prostate massages 3 times a week; but if this resolves most if not all the issues of my IC I would be willing to get them for as long as it takes!!!! I think the doc is willing to let me take Oreganol instead of antibiotics during the first phases, as long as it is showing measured results. If not, we'll switch to some sort of antibitoic. I'd rather have the natural oregano oil in there killing directly rather than the allopathic antibitoics, but we'll see what happens. I'll report back.... Optimistically yours...

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  • deanvinson
    replied
    Sonick, You stated you had restricted flow and that your doctor didn't pay much attention to your comment. I too will have restricted flow from time to time. Like I said. I'm now 26 I was misdiagnosed from several doctors with prostatitis for 7 years. Since my recent diagnosis of IC I really believe thats what it is. I think the restricted flow comes from your bladder losing its elasticity. Therefore you bladder muscles are not able to contract and relax as they did prior to IC. My doc told me my bladder was smaller than normal and that its elasticity was much less than a normal bladder should be. Mostly due to IC. I just started treatment with Elmiron and Amytriptylin. I also recently started taking DMSO2(liquid MSM) from Jacobs Lab. Several people on the site contacted me about this product. I've heard really good things about it and am definitly going the give it a shot. I've been on it for 4 weeks now. If it helps I will definitly let everyone know. Sincerely, Dean

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  • spriley
    replied
    When I was first misdiagnosed as having prostatitis, My doctor told me that my prostate felt inflammed. My urologist (who properly diagnosed me with IC through hydrodistention) says that the prostate is not affected in IC. But I disagree. My prostate sometimes feels sore if I do anything like sit on a bike. I think that the prostate is somehow irritated by maybe the same thing that is irritating the bladder. Who knows?

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  • Jim in San Antonio
    replied
    J,

    A quote from a colleague of my urologist: (Journal of Urology, Dec. 2001) "Early interstitial cystitis presents variably and usually with only a single symptom of urgency/frequency, nocturia or pain. Clinicians may fail to appreciate the symptoms of early interstitial cystitis, which leads to delayed diagnosis until the patient is more symptomatic. With time multiple symptoms manifest. Bacterial cystitis, prostatitis, endometriosis and chronic pelvic pain are common initial misdiagnoses. Interstitial cystitis should be considered when laboratory documentation of alternate diagnoses is lacking or when patients fail to respond to therapy for alternate diagnoses."

    And from Dr Parsons (Journal of Urology, Sept. 2002) : "The rate of positive potassium sensitivity test results in patients with prostatitis is almost identical to that reported in those with interstitial cystitis (84% and 79%, respectively), suggesting that prostatitis and interstitial cystitis may be a continuum of lower urinary epithelial dysfunction. We suggest reclassifying the prostatitis-interstitial cystitis disease process as lower urinary dysfunctional epithelium."

    Pete: Regarding not wanting any messin' around with your stuff to make things worse: I can relate. My potassium leak test was negative for IC, but I don't particularly want to have hydrodistention or biopsy. Have an extremely sensitive urethra (cystoscope, insertion of catheter for urodynamics, and removal of catheter after prostatectomy each caused me to scream). Placement of the catheter for urodynamics was the worst experience of my life; I believe I would rather have another radical prostatectomy (if I had another prostate to give up).

    Jim

    Leave a comment:


  • deanvinson
    replied
    I was also diagnosed with prostatitis in 1995 until I recently (2002)visited a urologist in Florida. I had biopsies of the prostate and bladder and was given the diagnosis that my prostate was perfectly normal and that I had a condition known as IC. I strongly feel this is what it is. I've probably taken $3000 of anti-biotics which never did a thing. That because I never had a prostate infection.

    Leave a comment:


  • MRA
    replied
    J,

    in response to your ad, i was diagnosed with chronic prostititus first and it came and went for about 4 months...then never left and was diagnosed with IC.

    I can share with you more details through the ic email.

    mra

    Leave a comment:


  • Teresa
    replied
    hi guys,

    wishing you less
    pain

    the people here
    are good listeners

    i'm glad you felt
    comfortable enough to
    share

    i've found the chatrm
    to a very supportive
    place-as the msg brds
    are

    hope to see you
    in the chat room
    when i'm having a
    bad time i fine it
    uplifting to hang
    out-

    huggs to you all

    tt :p :cool:

    Leave a comment:


  • Pbraidis
    replied
    Hi:

    I was diagnosed with chronic non bacterial prostatitis in 1993. After almost a year, a doctor told me to take strong doses of Motrin for 6 days--it worked--and it was gone for 5 years--now its back with a vengence--Don't know why and don't know if that's what it is--went to a top uro at Temple University in Philly and he said "its difficult to treat but it will go away" great help huh? Anyway, might go see Dr. Hanno at U of P who specializes in IC--but I don't want any messin around with any of my stuff--I don't want to be worse--and I'm really afraid of what he might do--I'm on Elavil and Neurontin--doesn't seem to help much--I'm trying the diet--but I don't think I'm doing it right--anyway, I'm just another guy--but it did go away for 5 years so I'm hanging on to that--Hope to chat with you again--and God I hope we all get better!
    Pete

    Leave a comment:


  • Teresa
    replied
    hi,

    just wanted to say we'd (i) be happy
    to talk any time

    hope to see you in the chat room

    it's a good group of people.

    huggs to you
    take care
    tT :p :cool:

    Leave a comment:


  • Murph
    replied
    Sonick:
    I believe that IC and chronic prostatitis are all part of the same disease affecting the urinary system in men. I have mild chronic prostatitis, severe urethritis, and classic IC (Hunner's ulcers). My IC as in most men was misdiagnosed for 3 years as chronic nonbacterial prostatitis that I was told that I would have to live with. I was also told that the pain I reported was minimal and that I was unwittingly making worse in my mind. Finally, the 4th uro ( a female) tentatively diagnosed IC on my 1st visit and then confirmed it via a hydro 2 months later. I have occasional problems with urinary hesitancy and flow, but I think it's more a result of pain, spasm of bladder, and trying to void small amounts on a frequent basis. Cardura, hytrin, and flomax did not help any. I used to think it was the prostate, but now I am positive it's the IC. Urologists and men have been conditioned to believe every urinary problem is related to the prostate and that's not the case especially the younger you are (I'm 38). Also, I think there's a whole industry that has sprung up around treating prostate problems. Uros like to do TURPs', prostate removal, or any other procedures that purportedly offer a quick-fix. And, I think alot of uros purposely ignore IC since IC patients are a pain to treat and there's no cure. Pay closer attention to your voiding patterns and you may find that what you thought to be obstructive uropathy is really just the bladder spasming, trying to contract on small volumes of urine, or pain inhibiting urination. That's just my two cents worth. Hope you get to feeling better.

    Leave a comment:


  • teresa
    replied
    hi,

    just wanted to say we're here for you

    this is a good group, it helps when you

    have others to talk to,

    i don't have any sage advice for you

    personally, just wanted to say hi, glad

    you're not alone w/this anymore,

    the chatroom is a good place to get support

    and info when they have chat nights.

    Leave a comment:


  • Kathi
    replied
    I know my uro group is diagnosing more men with Ic that was once diagnosed as chronic prostititis. It seems that many men get the dx first & when conventional treatment doesn't work they look to IC now. You are not alone. Welcome to the ICN. Men's night chat is last Thursday of the month.
    Smiles, Kathi

    Leave a comment:


  • Newly diagnosed, some thoughts on interrelated conditions

    Greetings,

    I am a newly diagnosed man (hydro 2 months ago), and have been lurking around the site for awhile. It's great to see so many people converging to support eachother as we suffer via this horrible condition.

    A question for the guys: Have you also been suffering from what could be construed as chronic prostatitis ? I presented the symptoms of obvious flow restriction to my uro but he did not seem to lend much credibility to it, as a colony count did not reveal any growth. I subsequently sent samples of prostatic fluid to a microbiologist in South Dakota (Fugazotto) and he observed a staph infection after a more advanced broth culture.

    The bottom line I guess is this, after endless research of whatever i can get my hands on, it seems as if prostatitis and interstitial cystitis in men could be tightly interrelated. Does anyone else have thoughts on this ?

    J
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