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HELP Do I Have IC?

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  • HELP Do I Have IC?

    Hey everyone!

    I am new to this post and wondering if I have IC? This is my story.

    Beginning at age 4 my mother took me to the doctors because I complained of burning, frequency, and was constantly holding myself. They ran all kind of tests- checking for infection, structual deformities, ect... My mother was DES so they thought it may be a deformity. They found nothing and in time the symptoms subsided. But again throughout my teenage years I started with the same symptoms again. It begins with me going to the bathroom when my bladder is full and I really have to go. After I empy out I present with the sensation that "uht oh" I feel like I gotta go again. When I do go its only drops and burns with some pressure in lower abdomen. Now in one years time. I would get it once a month, then the next month- twice, then the next once a week, then it would be gone. When I get the problem I found that if I hold the urge to go for 30 mins. to 1 hour it will resolve itself. Years ago I use to go to bed with towels between my legs because I had school in the morning and I was so tired that I could stand keep getting up and the burning and pressure was terrible. I know it sounds so unsanitary but I really was suffering. But I didn't want to go through the testing because I thought they wouldn't find anything anyways and it usually goes away.

    It went in remission for a few years then I began with occasional episodes in my later 20s. I went for urine tests which sometimes came back positive and sometimes negative. I mentioned to my pcp and he wasn't too concerned and stated to come in during an occurence, but I never did. It wasn't until my step dad was diagnosed with bladder ca and I took him to an appt. - it was in the office when I first saw the pamplet on IC and read it thinking this sounds like me.

    Now in my 30s I notice I get the symptoms more in the evening (I work 3-11) They always start after going to the bathroom and emptying my bladder and especially if I hadn't eaten. Is this weird? Is there a food relationship? My big problem is that I have no choice but to hold it while I work because I can not keep running to the bathroom. I tend to leak small amounts of urine so I have to wear a pad. Sometimes its like my butt is sweating and I get a line up the back of my scrub pants which I have to cover with a jacket or sweatshirt. Very embarrasing and frustrating.

    Presently I am going through IVF and I am taking estrogen and Progesterone hormone supplementation for possible pregnancy. My symptoms are two fold now! They happen more at work than on my days off ?maybe stress related? I've been tested by md for a uti and it was negative. I am presently on amoxicillin for another infection I encountered after egg retrieval procedure but I still have the burning, frequency ect.... so I know its not a uti.

    I know I am my own worst enemy and should have gone to the doctors before IVF but I hadn't had any symptoms for awhile and due to my age and my significant others low sperm count we had to try now. I go for my pregnancy blood test in 1 week and hopefully will be pregnant!!!!!- which I am walking on nails patiently waiting for that day! So treatment with medications and even further diagnostic testing may be out of the question during pregnancy. But I did see some of the threads stating that their IC was worse during pregnancy! This terrifies me!

    Honestly most of you are saints. I can't believe some of the stories of suffering and pain that some of you have been through and yet you are posting your stories and lending support to others. Thank God for you ALL!

    If anyone could share their thoughts or have any idea what I may have it would be greatly appreciated. My thoughts and prayers are with each one of you.

  • #2
    Well it is very possible you could have IC, To be honest you will have to wait until after you concieve to find out..Because the only way to get a true reading is with a hydro and I know this cannot be done while being pregnant, BUT.. You ask if food could be a trigger..YES!! Food is one of my biggest triggers, well and stress which you seem to be under alot of lately.. If you look at the ICN Patient Hanbook there is all kinds of great tips in there.. I will give you the link..Also keep us posted if you get pregnant...

    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.


    • #3
      Like you I think I developed IC at a young age. I haven't been diagnosed yet but Im waiting for my hydro and cysto next month to find out .Good luck and I hope you get some relief soon. I just started taking elavil 50mg for pevic pain and I have no pain anymore:woohoo:

      Current Meds
      Elmiron 300mg tid
      Elavil 25mg at hs
      Atarax 50mg bid
      Tramacet as needed
      Vitamin D 2000 iu bid
      Gabapentin 300mg tid
      Uracyst instillatons one a month


      • #4
        You might want to talk with your doctor about getting you on some medication even if you do get pregnant. My gyno is allowing me to stay on hydroxzine which calms the bladder. He told me that I will have to go off Elmiron but that I can have injections of meds directly into my bladder if I start to feel bad while we are conceiving and pregnant. I have not had a hydro but do not plan on having one unless my symptoms become worse because alot of people have pain associated with it and my symptoms have improved. Good luck on the pregnancy, I will be praying for you.
        Diagnosed with IC - March 2007
        Diagnosed with vulvodynia - June 2007
        -Lots of prayer
        -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
        -Taking Prelief as needed (stopped because of pregnancy)
        -IC diet


        • #5
          Thanks for the link! I'll definitely check it out..

          Thanks for the kind words. Glad you found some relief!

          Thanks for the info. I'll talk to my Gyno. My pg blood test is the 20th- I'm praying its positive. I'll let ya know.