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6yrs of symptoms...could it be IC?

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  • 6yrs of symptoms...could it be IC?

    I realize the first answer to my question is "Go see a doctor/urologist", and I plan to do that as soon as I get home, but I'm wondering if this sounds like the right story for IC. Since there's so many people on here, I'm hoping someone can say "Well that sounds sort of like me, and I have IC!". I'm a medical student too, which means I'm immediately branded as a hypochondriac before I enter any doctor's office, so I generally avoid them (ironically).

    Okay so 6 years ago I got my first UTI, which wasn't treated with the right antibiotics and I had to go on a 2nd round. From then on, I kept getting repetitive UTIs. For 3 years I was on antibiotics every few months, until finally one doctor told me that none of my urine cultures were coming back positive for anything... all those antibiotics for nothing! So I was sent for a kidney and pelvic U/S, and then a cystoscopy. The urologist just said I had an overactive bladder because he couldn't find anything to suggest I had IC on scope (this was not a hydrodistension).

    I took that overactive bladder diagnosis and went on with my life. I still get some terrible flares, like I've been having for the last week. What I usually feel is general burning or inflammation while I urinate, and then for a while afterwards (usually an hour to a couple hours). The only thing that relieves it is if I "flood my bladder"... and I can do this either by drinking a ton of water or having a beer or 2 (honestly!). As soon as I have lots of fluid going through, the pain seems to subside.

    So I've always attributed this pain to getting dehydrated... if I'm dehydrated, less urine is in my bladder and it hurts more. If I stay over-hydrated, I might be hitting the bathroom every hour, but at least it doesn't hurt. It's still uncomfortable either way.

    And I will get this in flares. I don't know how often but generally it will stick around for a couple days and I will "flood my bladder"... then it subsides and I'll feel normal again. Unfortunately for the last week it has been on-going and hasn't let up at all, which is just awful for me. I'm doing an elective in rural medicine and it's a real bummer to feel like you have UTI all day long. Thank god I can distract myself... if I keep my mind focused on patients, I don't feel my own pain.

    I've been trying to focus on what might have triggered this week long episode and it could be a number of things. I've moved to rural Nova Scotia for a month and usually I drink Brita-filtered water, but I've just been drinking tap water... which I think is high in sulfur. So I switched to bottled Aquafina last Wednesday. I also realized yesterday that I'm drinking a lot more coffee than usual, which I plan to stop doing. My diet has also completely changed because I'm eating out a lot, and there's really nothing I can do about that.

    It doesn't bother me at night, and I've trained myself over the years not to run to the bathroom every 30min because I know it doesn't help. Instead, I just get out and do something so I'm not sitting and thinking about my symptoms. Otherwise, I don't take any other sort of pain reliever.

    So... sound like IC? Or not? And any ideas to help stop this flare until I get back home in 4 weeks?

    IC & Vulvodynia x 1 year (symptomatic for 7 years)
    Currently on Nortriptyline 20mg/daily, IC diet
    Graduate MD, 2013. Currently training to be a Family Doc/GP
    Possibly will also be a designated Emerg Physician
    Proud owner of the cuddliest cat, named Stethoscope
    Alberta, Canada


  • #2
    tdot, the first thing you can do is start the IC diet if you don't have IC it still can help you out until you're back home, if you eat out alot you can ask the chef to bake chicken with IC friendly spices, Coffee was and is a trigger for me so I drink non acidic coffee. I've only been diagnosed since March so I'm still learning. Hope you find relief 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

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    • #3
      Hi Yah sounds similar to me! I JUST wrote about my early signs in the thread "symptoms of IC" That is was what happend to me before it all started, and im only looking back on it now and going... well maby there was already something wrong?

      Green eyes is right the best thing you can do is change your diet. I personally am on the anticandida diet and that works for me, but the IC diet is good to and you can still eat sugar on it!! (something I dont)..

      You bought aquafina water you said.... many people dont know but lots and lots of bottled water and tap water for that matter are acidic.. I alway test my urine when I go and make sure to keep my body as alkaline as possible (the less acidic the less your bladder is bothered sometimes) You can keep it super alkaline by eating veggies. LOTS of them lol. I was drinking just tap water for SO long and because it was water I always thought it was alkaline anyways... well its not!! My water here was a 5.5 PH..... the good PH that your body should be is about a 7. I try and keep my body at about a 7.2 ish.

      Having said that I went out and bought ESKA water that has a PH of 7.8. Made all the difference The water that I KNOW has a high PH is evian, fugi and eska. Others like Dasani and aquafina are actually close to the same a drinking acidic tap water....so maby its worth a try to get a different brand?

      Hope you feel better soon! There is soooo much to learn! At least your in the right place. We will all get you on track

      Jenn
      28 yrs old,

      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



      Me in my graduation gown!

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      • #4
        I can't say if it's IC or not, but I can tell you it sounds exactly like me.

        I was 'diagnosed' in the same way with OAB. I took Detrusitol (Detrol in USA), which helped for 1.5 year. Flares have been back for almost a year, and Detrusitol and other OAB meds aren't helping. So I wonder if your uro prescribed any OAB meds?

        Also, do you have an appointment for when you're back yet? Sometimes, the waiting period can be quite long, especially in summer, although I don't know the situation where you live. So it might be a good idea to pick up the phone today, and make that appointment in four weeks.

        And isn't it annoying, to know that you've been on antibiotics endlessly for nothing? I'm on them right now, because this flare might be a genuine UTI, but I have no relief yet, I'm just getting as sick as a dog and a terrible headache on top of the bladder pain. Yikes!

        A way to deal with the pain that helps me sometimes is taking a hot bath. Definitely avoid thight jeans, and try to find cotton underwear.

        Hang in there, and good luck!
        Not diagnosed yet

        More than a decade of 'bladder issues'
        Main symptoms: burning pain in urethra, urgency, frequency
        Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
        Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
        Starting physical therapy soon

        Getting married 7/7/2012

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        • #5
          Thanks everyone!!

          The good news is I think I'm improving (knock on wood!!). The last 36hrs have gone pretty good... no major concerns at all. I'm not sure what did it because I eliminated 3 thing at once, but I had to try it all at once just so I could be functional out here. So either it was coffee, tap water or canned soups... hmm... I'm not too eager to introduce any of those right now to determine what it was, so I think they will just stay out of my diet until I get home.

          And I'm making an appointment with my obs/gyne for when I get home anyways, so I'll have him refer me. I can't go to my first urologist anymore because I no longer live in that city (nor do I even remember his name). My obs/gyne is a great doctor and may have an idea on how to control it himself.

          And JinnyJean: what I wouldn't do for some Evian water!!! I'm in a very small town of Nova Scotia though, there's only Aquafina at the grocery story

          I'll keep my status updated, but I'm pretty sure I have IC. Like honestly, if someone with my symptoms presented in my office, I would diagnose them with IC. It's just so much harder to admit it to yourself than to tell a patient...

          IC & Vulvodynia x 1 year (symptomatic for 7 years)
          Currently on Nortriptyline 20mg/daily, IC diet
          Graduate MD, 2013. Currently training to be a Family Doc/GP
          Possibly will also be a designated Emerg Physician
          Proud owner of the cuddliest cat, named Stethoscope
          Alberta, Canada

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          • #6
            It does sound like IC is a possibility, but as you say, you will need to see your doctor to confirm.

            Warm hugs,
            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            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.

            Patient Help: http://www.ic-network.com/patientlinks.html

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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.
            [3MG]

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

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            • #7
              That's good news, let's hope it stays that way
              Not diagnosed yet

              More than a decade of 'bladder issues'
              Main symptoms: burning pain in urethra, urgency, frequency
              Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
              Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
              Starting physical therapy soon

              Getting married 7/7/2012

              Comment

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