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I'm one of the "silent" men on the forum.....

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  • I'm one of the "silent" men on the forum.....

    Here's my story in a nutshell: I'm a 34 y/o man, diagnosed with IC in Feb. 2007 following cystoscopy w/hydrodistention. My symptoms are frequency and urgency (mild pain only started AFTER the cysto.) I'd say I first noticed them in late 2004. It flared up in July 2005, and then calmed down on its own. Same thing happened in July 2006 (I had just gone on vacation both times). My urologist put me on Flomax at the time, which helped somewhat. Then, in December 2006, everything came to a head. I am currently in my third month on Elmiron (400 mg/day).

    I am convinved that all of this has been brought about by unremitting stress and anxiety, particularly in the last four years (without going into details, I am a member of the clergy, and live where I work -- not always the most pleasant set-up, but it's out of my control). I have been following the IC diet, more or less, but don't seem to have the food sensitivities that others have. However, I do note my urgency increases when I am more anxious.....

    My urologist said that I have large bladder capacity, and is confident that things will get back to normal. The thing that bothers me is that I have had some discomfort and pelvic pressure only since the cystoscopy. I hope that this, too, will lessen over time.

  • #2

    I'm glad you finally posted. Hopefully you will have at least some of your questions answered here. Flomax is one of those medications that helps relax the smooth muscles --- it might be that an antispasmodic would be a real help to you. The one I have had good luck with is hyoscyamine. And since elmiron can take up to six months or longer to become effective, you should know soon whether it will be the answer for you.

    Sending healing thoughts,
    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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    • #3
      to the ICN. Stress is a big factor in my IC flares. The smallest thing can set me crazy. I tend to be a worry wart and that isn't good with IC.

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      • #4

        I agree with Leslie stress can cause major flares for me..But I know its hard to stay stress free when you hurt so bad.. You know I never had pain in my pelvic area either until my hydro, but after months things seemed to settle down, hope this is this case for you to..
        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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