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How many times do you go when not flaring

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  • How many times do you go when not flaring

    Just curious about how many times you go when not flaring. I have recently been strict on the ic diet and have gone from 20x a day now to about 5-6. Hope it stays this way. I have stopped all supplements including fish and flaxseed oil and have stopped coffee after 30years. But it is worth it. Leslie

  • #2
    I go 15-20 times without a flare, and with the ic diet. Beleive it or not the IC diet helped alot. I have lots of problems with my frequency and im currently looking into treatments as the pills bother me(vesicare, detrol la and the like) because I have IBS with constipation. Hopefully my uro will help me out if not, im finding another. Good luck

    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control


    • #3
      I got anywhere from 2-3 times to 10 times and am on Ditropan XL.

      Medical "Issues":
      Tachycardia(resting rate is 125-130 )
      Tramadol-as needed (IC)-50mg
      Elmiron 200mg twice a day
      Levsin .125mg 1-2 pills 4 times a day


      • #4
        I go about 15 to 20 times a day, when im not flaring..

        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.


        • #5
          Trying to PM you, but your mailbox is full

          Hi Ronda, I tried to PM you with this info, but your mailbox if full so here it is. Clear some messages so we can write back.

          My husband says he's all for meeting you and your husband sometime. What's been the most stressful has been his constant TDY's and military deployments. It seems like every time he has one that comes up, I get sicker. It might be just my psyche....I don't know.

          We have just been married for six months as of February 12. In the six months we have been married and the year and a half we have known each other, we have been through SO much: Hurricane Katrina (Aaron lost EVERYTHING), one of Aaron's friends treating me like crap over a Thanksgiving holiday and trying to come between us--ironically this same girl is friends with me now, my hospitalization and subsequently Aaron totaling his car coming to visit me in Mobile at the Hospital, Aaron's first deployment over the holidays to Afghanistan (made it back on Christmas Eve), then in May 2006 Aaron underwent surgery for a deviated septum and had a lot of complications (one time, he bled so much that he had to be admitted to the hospital because he lost so much blood that his blood pressure bottomed out and he had to be admitted through the ER), then the week that he proposed (the day he proposed, he had to go TDY to Korea), then we married in August 2006 (let me mention that the week before we married he had a TDY to Japan and got back in the nick of time--just two days before our wedding), then there was right after our honeymoon, he had a TDY to California to Beale AFB and I got sick. I got so sick I ended up in the ER three different times and he flew me out there to be with him so my stress would calm down. As if this isn't enough, Aaron was deployed AGAIN to Afghanistan December 10th of 2006 and it was said to be a four month deployment (so the orders said)...we couldn't talk as much as his last one because of where he was located. He had no access almost to a phone and limited access to about stressful. But then, by the grace of God, Aaron and his team fixed the problem and were able to return home on December 22nd. Since then, I have had SO many ER visits and Aaron has been there for EVERY ONE of them. He has been the most amazing husband a woman could ever ask for. Now, the latest admission for a week with this infection. And, on January 18th of this year I was diagnosed with IC and this has hindered our love life so much. Anyway, I know that whatever happens, given what we have already been through...we can make it through anything and if our vows did not convince me, these circumstances have.

          We look forward to meeting up with you. Please let us know when you guys will be in the area. I am not allowed to travel for three to four weeks because I am on steroids and have to limit exposure to a lot of people because of the risk of infection.

          But, we'd love to meet up. We live off exit 44 on the Coast Coliseum/Cedar Lake Road exit in Biloxi.

          Write back soon...
          Diagnosed in 2007, but had IC symptoms since 2002. My current regimen includes: home instillations of Marcaine, Heparin and Solu-Medrol plus vaginal valium suppositories nightly. I also use Tramadol for pain as needed.