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  • Terrified....

    Sorry if I'm posting this in the wrong forum but I just need to vent. This all started about 9 months ago (September 2006) the day after I went swimming in a chlorine pool I started to get burning with urination and burning at opening of urethra when not urinating. I had previous episodes of occasional burning with urination off and on, but usually it was after showering and putting soap in that area. Well I went to my general doctor who said it looked like a UTI and put me on Cipro. Well the Cipro didn't do anything nor did the 2nd antibiotic he tried, and when he got the results of the culture back it came back negative for bacteria so I never had a UTI in the first place. I then went to go see a Urologist who told me that it still could have been an infection or maybe my urethra was still irritated from it. The urine culture at his office came back clear. In the meantime I saw gynecologist who tested me for everything (ST disease) and it all came back negative. Well still was having the burning 8 months later and decided to make an appointment with urologist who can't get me in till June 18th now. Well about 1 week ago I was testing my urine ph several times in one day and I would start urine flow then urinate into cup to take test. Later that evening my urethra started feeling sensitive and jabbing type irritations when touched or when I sit down. I thought maybe it was an irritation from constant voiding but then I started getting a dull ache in groin area near urethra and pain down left leg into foot. A couple months ago I was getting shooting rectal pains and saw my gastroenterologist that thought it could be due to muscle spasms in that area. Well my menstrual cycle started and as its now coming to an end I feel fullness in my bladder....urgent needs to urinate (even when I don't have to) spasms in bladder and urethra before, during and after urination and sometimes the dull ache in left side of groin that travels to leg. I thought maybe I developed a UTI but I took those AZO at home test twice and both times it came out negative for nitrates and WBC.

    I keep trying to get in sooner with urologist for cystoscopy but they don't seem to be able to get me in. I'm just so scared that I have bladder cancer or urethral cancer that I'm unable to eat and worrying constantly. I'm sorry this is so long but I don't know where else to vent. No one seems to understand what I'm going through and my friends and family all know I'm a hypochondriac and worry about every disease, but these pains and discomfort I'm feeling are real and I'm not "working myself into it." I have not completely tried the IC diet because of the bowel problems I have I drink prune juice every morning and that burns my urethra really bad. I have not been able to give that up - I don't know if that is why this hasn't healed?

  • #2
    I understand what you're going through. The time before diagnosis is the worst time. You might want to look for an alternative to the prune juice for a while to see if that helps.

    Warm hugs,
    Stay safe

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    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
      Yep, we all understand here, and funny, all the things you described - sensations-wise - remind me of me before diagnosis. I had shooting pains in the rectal/vulvar/vaginal area, sometimes at work or home I'd have to sit propped up on my feet so that those areas didn't have any pressure on them from sitting etc. My whole vulvar area would feel "swollen" and throb - I told my gyno (before IC diagnosis) that it felt like I had been kicked in the crotch, lol. My urethra was the first to start the spasms, ugh. It was horrible. Some days felt like I was peeing broken glass, then got to the point where I'd be standing there and it would feel like someone reached up, grabbed my urethra and pinched and pulled, ouch! Lastly, my bladder got into the game, after a UTI. And the funny thing is this crazy collection of symptoms were never put together... When the urethral troubles started, I was put on Ditropan to help that out, but did nothing for my increasing frequency, then eventually after that fateful UTI we decided to treat for IC. Bingo. Once I started my treatments and the diet things, started to steadily improve, slowly, but it was improving!

      Hmmm, yep that prune juice may be aggrivating things, have you thought about a daily fiber regimen or something like that until you can get things squared away with the other things going on??

      Oh, and stress is a HUGE trigger if it does happen to be IC. I know it's easier said than done when you are faced with a collection of symptoms that have you scared silly and no doc appt any time in the next week - but do try to relax. As my husband tell me - don't worry until you are given something to worry about! Worrying doesn't change things etc. all it does it layer on added stress - which could be over something sooooo simple. So just take a deep breath and try to keep yourself occupied with other things until that doc appt!!!

      BIG hugs,
      How do you eat an elephant? One bite at a time...

      Harry arrived 2/23/09!

      *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      IC Diet Cheat Sheet:

      IC dx'd Nov 2004
      Lymphocytic Colitis dx'd July 2005
      Possible IBS
      Current IC Meds
      Vistaril 25mg in the evening
      Previous IC Meds taken:
      Cystoprotek - 2 caps 2x's a day
      Elmiron, 100mg 3x's a day
      Ditropan, 5 mg 3x's a day
      Wellbutrin 150mg 2x's a day for Anxiety/IBS
      Pepcid 40mg a day for GERD
      Zytrec for Nasal Allergies
      Align Probiotic daily for IBS


      • #4
        i have pretty much the EXACT same symptoms as you girls. mostly urethral and "kicked in the crotch" feeling. i find the lower urinary pain (urethra and surrounding area) to be worse than the bladder pain. afterall, when you sit down, you are putting pressure on all those areas. i can barely wear undies anymore!

        i would not be scared about cancer though, unless you're an older smoker, its quite rare. still good to check though.

        sounds a lot more like IC
        diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
        frequent UTIs
        No frequency, just urgency and pain!

        tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

        Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

        TENS may help a little

        Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

        fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

        Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)