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  • sandy1020

    hello,from a newly diagnosed IC patient in which my urologist is'nt quite sure that is my true dx. I've been to 3 urol, one sure I have it but not compfortable with him,one at Northwestern hosp in Chicago is not sure and the one I'm dealing with is treating me with Elmiron 100 mg 3xday and elavil 25mg at night andwas giving me vicodin every 4 hrs then told me to decrease it then stop. I kept telling him it felt like every second as my bladder filled as I drank only water it felt like acid pouring into my bladder. So I saw my reg GP he told me to tell my urol that he would manage my pain with the vicodin. My urol did a cystoscopy/cystogram since I have a history of uretal reflux but after I came out of surgery he said everything looked fine and he took one biopsy. I later obtained my medical report which statedThere were a few small cystic lesions typical for cystitis one lesion was biopsied. The renainder of the trigone had a few small cystic lesions as well. I guess that sounds pretty normal but then the Pathologist's report read "Dx Fragment of polypoid bladder wall showing sqamous mucosa with focal atypia.Comment The squamous mucosa with focal changes suggestive of koilocytotic atypia.Follow-up reccomended" Does this sound normal? All 3 of my urol state there is no definite way to truley confirm IC. Then why did I go thru all that?
    have a history of uti's since childhood becuz of my reflux corrected at age 5. I then had many throughout life but antibiotics always helped. Beginning of Dec of 06 I truley had a urinary infection that pyridium coudn't touch. No antibiotic would help. Tried macrodantin,bactrim,doxycycline.levaquin,noroxin, and after 4 mo of unbearable pain I was taking cipro but after 4 mo my UA's were clear. Now I still feel that burning acidic pain more to the right side of my bladder with the urgency to urinate every 15 min.I have no life. I was an O.B. nurse in the nusery for 19 years but had to quit.Does it sound like IC?
    help,Sandy

  • #2
    Hello and
    You can get a true Dg for IC..But you have to be put under to do this. and it has to be done in the hospital..

    Cytoscopy with hydrodistention

    A cystoscopy is a telescopic examination of the bladder. This is an out-patient hospital procedure that is done with either a local or general anesthetic. A flexible tube with a fiberoptic camera called a cystoscope is used to view the inner wall. During this examination, the cystoscope is used to fill the bladder with water. This stretches the bladder (hydrodistention) and allows the surgeon to see the wall of the bladder clearly.
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN 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.

    Comment


    • #3
      Hi Rhonda, I did have an outpt cystoscope w hydrodistenion and he said averything looked o.k. but he can't figure out why i\I'm in so much pain. I also had
      CAT scans w and without infusion that were normal I also had an ultrasound of my ovaries,bladder and urethra,and kidneys.all normal and a normal IVP.Why all the pain and urinating every 15 min? /thanks for responding. I'm new at this.
      .

      Comment


      • #4
        Sandy did he do a biopsy on your bladder?
        We have a few people here on the ICN who had the hydro where it looked normal but the biopsy showed mass cells which prove you would have IC..
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN 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.

        Comment


        • #5
          Hi Sandy,
          Rhonda is right.The mast cells may only show up in the biopsy.
          Ic a sure thing with the mast cells.
          GoldSeals
          54 year old male
          Diagnosed with IC in 1994
          Had symptoms since 1992
          Three cystoscopies.One biopsy with hydrodistention.
          This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
          Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
          Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

          Comment


          • #6
            Hi Sandy. I am so sorry that you are not feeling well. Maybe when your doctors told you "there is no definite way to truely confirm IC" they meant that IC is primarily a diagnosis of exclusion. The way I understand it - If all of the tests rule out all other possible causes for your discomfort, and you still have bladder pain, then you could be diagnosed with IC based on your symptoms. I hope your doctor will find something to help you feel better. Keeping you in my thoughts...Linda
            Sudden onset of UTI like symtoms on Dec 27, 2006.
            Diagnosed with IC on March 12, 2007.
            Current Meds: 50mg Elavil
            "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

            Comment

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