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    hi, my name is amanda. I was diagnosed with vulvadynia in oct and now im on lidocane cream and a premarin cream trial.
    I occasionally have frequency, particulary after applying the lido cream, and urgancy. i have dipped my urine at work (im a pedi icu rn) and had a few UAs done...everytime i have red blood cells in my urine. i was sent to a gyno that specializes in endomietrosis (which i have) and he did a cath, but they didn't get enough urine! and we didn't see eye to eye so i haven't been back to him. I did though get referred to a gastroenterologist for my chronic pelvic pain and was worked up for heirshprung's disease by lots of testing ending with rectal biopsy's, which was thankfully neg, but i was diagnosed with IBD-C. i was put on meralax, which i don't need to take anymore (YIPPY). But i continue to have horrible gas (i can make my boxer dog leave the room...they are gassy dogs) and bloating to the point that i look preggers. its so uncomfortable...i am more regular than ever before, but its still uncomfortable.
    i recently saw my vulvadynia gyn last week and told her about the frequency, she wasn't sure what it was about and sort of blew it off. she attibutes the occasional burning with urinating with the vulvadynia.
    Should i push more for more testing for IC? oh i should also mention that we think my mom had it...she has had the dye(?) thing done. When i was sexually active i had severe pelvic pain and after it felt like i was peeing liquid fire for a few pees. i would hate to go after. and even being a nurse and having a "nurse bladder" when i gotta go, i gotta go!!

    any feedback would be welcome!!
    Thanks in advance!

    32 years old
    Symptoms started after a mole removal and flu shot. Diagnosed after 3rd opinion and cystoscopy with hydrodistention. Now attend a pelvic medicine clinic with my gyno and uro every 2 months.
    Also I have migraines, vulvodynia, endometriosis, IBS, eczema, severe seasonal allergies, PFD, chronic yeast, primary raynaud's, and a shoulder full of scar tissue from a mole removal

    Current treatment
    Zantac 150mg twice a day
    Topamax 75mg twice a day
    Trazodone 50mg before bed
    Atarax 25mg before bed and as needed
    Elivil 25mg before bed
    Zyrtec 10mg once a day
    Ogestrel continuously
    Lidocaine cream as needed
    Estrogen/Testosterone cream three times a week
    Gabapentin cream daily
    Valium vaginal suppository as needed
    Pyridium as needed
    Physical Therapy for PFD treatment
    Acupuncture every other week

  • #2

    Just having frequency does not mean you have IC, Do you have any other symptoms, Like pain, burning? If you do not want to get a hydro done you could have a pottasium test done and if it burns really bad , that could be a good sign you might have IC.. I would talk more to your dr though and try ruling out other things

    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:

    Diet Reference Sheet:

    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.