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  • You won't believe this>>>

    AAAAAAAAAAAARRRG! We traveled 6 hours again to be sent home from the hospital. This urologist is driving me nuts. I was preped, in my gown etc. and waiting in surgery for 1 1/2 hours. I went in to get my cysto. and this guy says, "come back in 2 weeks, you need a cysto and a urodynamics" OMG! The equipment was repaired for cysto but still down for urodynamics. He finally read my file that me GP sent him and decided last minute that I need a uro. test done, too! I even phoned his office the day before and his secretary told me to come for the appointment. I asked him why his secretary told me to come and he said that she does not know anything!!! OMG! He did not even book me in as having an appointment. Apparently he books 10 cystos every Thursday and tells another 20 people to just show up. The hospital does not even know you are coming. Wonderful! I was not the only one. I felt aweful for all the older patients that were turned away - people in their 80's that had to get a hotel and everything. We never heard such disgruntled staff. The nurses were shaking their heads. The Operation Room booking clerk told my husband and I privately things that we did not want to hear. She said she could loose her job for telling us that kind of stuff. I can not believe they put up with this guy! I am going to write a letter to the hospital. What do you think?
    Interstitial Cystitis: Elmiron and Hydroxyzine
    Depression/Anxiety: Remeron, Cipralex and Clonazepam

    *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
    * 2 hydrodistentions :

    * currently on "Nabilone" for pain management

    Taken the following:
    Gabapentin no relief but could tolerate it
    Lyricano relief but could tolerate it
    Cymbalta severe depression/anxiety etc.
    Topamax severe nausea and weight loss
    Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

    What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

    Other conditions...
    Vulvadynia (amytriptaline cream - no longer using to to irritation)
    Severe IBS
    Chronic Sinus pain (nasal rinse as need)
    Migraines
    Lower back and sacroiliac joint disfunction

    Allergies: Erythromycin, scents and detergents

  • #2
    I would write a letter to the hospital and also change doctors!!
    Good luck!
    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.

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