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Thought it was IC, but maybe not

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  • Thought it was IC, but maybe not

    I have not been diagnosed with IC, but my gynecologist suspects it and referred me to a uro-gynecologist.

    Since an hour after I had urodynamics for a leakage problem 11 months ago, I have had pain while urinating. Sometimes bad, sometimes not so bad, but virtually every time I urinate.

    I had a hysterectomy and bladder and rectal prolapse repairs done by a uro-gynecologist a month after the urodynamics. I don't have leakage anymore, but I still have the urination pain, frequency and sometimes urgency.

    That uro-gyno kind of threw the kitchen sink at me for urinary pain - PT, ProSed, Valium suppositories. None of it really worked (and now I know that wasn't the kitchen sink, just a drop in the bucket).

    I saw a new uro-gyno Thursday. He did a pelvic exam, said the surgery looked good. He did a bladder ultrasound and I seem to be emptying it OK.

    But he said I have blood in my urine (never heard that before) and I remember him talking about white blood cells and red blood cells but for the life of me I can't remember what that was about, but I think he's going to call me after lab results.

    He also scheduled an office cystoscopy and is getting my records from my pcp (who treated me for a bladder infection after a positive culture in October - before the hysterectomy) and from the hospital where the surgery was done.

    Yesterday I developed a new symptom - my urine is foamy. Of course I looked that up and it seems that means protein in the urine. They'll probably find that in the urinalysis from Thursday, but I'll call tomorrow anyway. Weird, I've never had that before.

    Does all this sound like IC? I really thought that it did until I started reading on this forum yesterday. Now I'm not so sure. I know there are a lot of things on the IC diet that do not aggravate my bladder pain, but of course I can't say none of them do.

    I liked the new doctor and it seems from my reading here that he is probably doing the "right" things. He came out to the reception desk when I was leaving and patted my hand and said, "We'll figure this out."

    I could have had the cystoscopy this Thursday but I have a conflict, so it will be Tuesday morning. I guess I'm just looking for reassurance until then.

    Thank you.

  • #2
    Could be IC, but then I am no expert either. Sound like you have a good Uro,! I hope you find answers soon!!!

    I had a Uro tell me it wasnt IC that I had, and I have never been "officially diagnosed" either, so I am still not COMPLETLEY sure either, but as far as I know this is what I have. ( Lots of the time they (Uros) are NOT helpful!.. and they can never give a straight answer.... but then again, there are just some things they don't know... Still frustrating!

    Bladder issues SUCK!

    Hang in there though!

    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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    • #3
      It does sound like you have a helpful dr. for sure. I don't ever recall a dr. telling me not to worry that we'll figure this out. I had several different opinions as to what I had and I still sometimes wonder if the current diagnoses is really correct. Hope your appt. goes well and leaves you with some answers and suggestions. Having a dr. willing to treat this condition is a god send.

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      • #4
        I have to agree that it sounds like you have found a good, caring doctor.

        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

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        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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        • #5
          Thank you all for responses, and for contributing to the incredible wealth of information on this site.

          The uro's office called yesterday to say the urinalysis showed an infection, so I was to go on Cipro for a week. Then they put the doctor on the line and he said he had already received my records.

          He is going to do the cystoscopy on Tuesday, but he is concerned about a graft put in the wall of my vagina in October. He wants to look in my bladder to make sure Dr. X "didn't put something in there that she shouldn't have."

          I found that an incredible statement coming from one doctor about another. Unfortunately I've dealt with a lot of doctors in my life, and in my experience they cover for each other.

          I've learned from this forum that an office cystoscopy isn't diagnostic for IC, so I'll just take it one day at a time and see what he finds

          At this point I'm just hoping his expertise is equal to his concern.

          Thanks again,
          Debbie

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