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Still Don't Have A Diagnosis

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  • Still Don't Have A Diagnosis

    Hello All,

    I am a 38 year old male going through a very depressing time right now trying to get diagnosed for whatever is causing my frequent urgency, penile discomfort, weak stream, and very limited amount upon voiding.

    I have been dealing with this for about 3 months now and the first urologist I went to examined me for about 2 minutes and dismissed it as prostatitis and said it should resolve itself in 3 months or so without any prescription meds.

    Well that wasn't good enough for me for many reasons...I'm somewhat of a hypochondriac, suffer from depression, etc. so I went to an urgent care clinic soon after and was given 10 days of Cipro 500mg to no avail.

    I followed up with another urologist who seems to be very knowledgeable and much more sympathetic and more determined to figure out my issue.

    He mentioned several things during my initial visit, one of them being "you don't have IC", however he still provided me with a brochure on the condition and advised me to research it since I could have a mild form of it, which seemed to be contradictory to him saying I didn't have it.

    He ended up scheduling me for a uroflow test, a cystoscopy (coming up next week and I'm terrified of it), and prescribing rapaflo and uribel.

    Well the uroflow test was a bust. I guess I suffer from shy bladder due to anxiety and could not start a stream even with a full bladder. The nurse gave up on me and just had me go without anything hooked up to me, so I doubt this will be conclusive for the doctor.

    I have become extremely depressed over this whole thing and don't know how I can cope with it. I have been on xanax to sleep for a couple years now and it is suddenly not very effective. I keep waking up constantly. I went to a new psychiatrist and foolishly let him sub the xanax for valium (urologist had mentioned valium can help relax pelvic floor and its a benzo, so I figured what's the harm) and that was a huge mistake since it is much less effective for sleep and causes me horrible withdrawal from xanax. I also restarted Zoloft due to my recurrence of severe depression which has been about 4 days of 50 mg, so still probably not doing much other than more hesitancy.

    I don't have pain, blood, etc. just a very frequent urge to go and very little usually comes out. I lay down in bed to rest and have to get up at times every 20 minutes or so due to a discomfort/pressure in my urethra, which subsides for a few minutes after urination. I have increasing hesitancy as well. Can take several minutes to start and sometimes have to take a shower or bath to be able to empty.

    I also find it odd that I do not experience discomfort during erection or intercourse/ejaculation. It actually provides relief. However being on Rapaflo (similar to Flomax) causes retrograde ejaculation, which is strange and more depressing. This causes my ejaculate to go in to my bladder. I am wondering if this is irritating my bladder, because the following day, I feel the urgency rate increases quite a bit possibly due to it not flushing out with one urination.

    So in closing, I apologize for dragging this out so long, but I am trying to get some feedback from folks who know much more about this than myself and probably many doctors. I just don't know what to do anymore. I will try to stay positive until my cysto next week, but as most of you know, it's not easy.

    Thank you very much for any feedback you can provide. My life is certainly much less enjoyable these days.

  • #2
    Of my 36 years with IC, the most difficult time was before diagnosis --- so I do understand the frustration you are feeling. It's difficult to accept and deal with the unknown.

    There are some things you can do while waiting to find out --- you could give the IC diet a try (you'll find a link to the latest food list in my signature below) and be sure you are drinking six to eight cups of water every day to keep your urine from becoming concentrated.

    Ruling out other possible problems is a part of an IC diagnosis --- the cysto is a part of that process. If it's a cysto done in the doctor's office without anesthesia, it will probably not diagnose IC. If you can manage to relax, it will be much easier for you.

    Sending healing thoughts,
    Stay safe

    Elmiron Eye Disease Information Center -
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    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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    Diet list:

    AUA Guidelines:

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool


    • #3
      I agree with Donna, I was one of the luck ones who was diagnosed almost from the first time I saw my uro. The hardest part of dealing with the urgency is the pain of not knowing. Hopefully you will find an answer soon.
      IC diagnosis 3 weeks ago.
      Vesicare 10 mg once daily
      IBS and Gerd-Zegerid
      IC diet
      Elmiron 100 mg three daily
      Hydroxyzine 25 mg at night
      Amitriptyline 10mg at night
      Diovan 60/12.5 daily
      Topral 50 mg daily
      Zoloft 100 mg at night
      Klonopin .5 twice daily