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  • #1

    I'm new here

    I diagnosed myself 2 months ago (my internist thought I had a bladder infection for 3 months). I went to an urologist and found out I did have IC. I am on my 4th weekly treatment. I don't know much about this. This sight has really helped me learn more - and I have ordered much info from the ICN shop. I am in a lot of pain - especially after my treatments. I just feel all around yukkie. I often wonder if everything I am going thru is normal. I have headaches, urgency, pelvic pain, sleeplessness, exhaustion - I also have bacteria. Is all this normal? It sounds like IC can cause many other problems and I am just plain scared.

    I have had bad health for about 10 years now. I've broken my neck twice - father died in a plane crash, suffer from depression, and now IC. My family is great support, but I need more. I feel very alone. I'm glad I found this sight.

    Thank you, Jill.
    Tags: None
  • #2
    You are definitely not alone. It sounds like you have had a hard time. I don't have much advice, just wanted to say Welcome. I hope you find a treatment that works for you. I have had IC for one year now and I do good most days. There are still days when my bladder acts up but I live a normal life. Sometimes those of us with IC just have to fight a little harder! And appreciate the days when you are feeling good. I pray everyday for all IC patients and for a cure. I know it has to be coming soon! Take care.

    Comment

    • #3
      i'm sorry

      i'm sorry to hear what you are going through, i myself am going through the same thing, i was diagnosed with ic, pelvic floor spasms, and depression and anxiety. I have constant pain and so far nothing that the doctors have tried has worked! Half the time i can hardly move the pain is so bad and i have 3 children under the age of 5 that i need to care for. It is very hard to have to live with this cronic pain but it is always helpful to talk to people who know exactly what you are going through

      Comment

      • #4

        We are glad you found us..
        This site is a very caring and helpful site.. The people here will do everything in there power to help you..

        I do know as far as all your symtoms I have the same, but you mentioned bateria? I think that would be an infection somewhere..what did your doctor say about that?

        I also know that being depressed makes my symtoms worse, so I try to stay as positive as I can even though I am in pain most of the time. The way I cope with IC is I have tried to learn as much as I can about this disease and I ask lots of questions, so when something pops up I know how to treat it fast before it gets to unbearable..

        Well I am sure others will chime in and also help you.. Good luck and remb I am always here even if you just want to vent..GOD BLESS YOU
        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.

        Comment

        • #5
          I am so sorry. I am currnetly going through a similar situation. I lost my step son(10) to a car accident three months ago and I also have been just diagnosed with IC. The pain to me is disabling.I have two other boys that I sometimes just feel useless to but I keep telling myself that the need me and so does my husband.I know just reading a few of the stories on here has made me at least question that there is a positive outcome.I am glad we have this site and support.Write if you need to talk. Catherine

          Comment

          • #6
            New here also

            Originally posted by Laura Williams View Post
            I diagnosed myself 2 months ago (my internist thought I had a bladder infection for 3 months). I went to an urologist and found out I did have IC. I am on my 4th weekly treatment. I don't know much about this. This sight has really helped me learn more - and I have ordered much info from the ICN shop. I am in a lot of pain - especially after my treatments. I just feel all around yukkie. I often wonder if everything I am going thru is normal. I have headaches, urgency, pelvic pain, sleeplessness, exhaustion - I also have bacteria. Is all this normal? It sounds like IC can cause many other problems and I am just plain scared.

            I have had bad health for about 10 years now. I've broken my neck twice - father died in a plane crash, suffer from depression, and now IC. My family is great support, but I need more. I feel very alone. I'm glad I found this sight.

            Thank you, Jill.
            I am new here also, and don't know how to generally post for info.
            Is this the way to do this/
            BobPain

            Comment

            • #7
              hey!

              AND

              I am so sorry to hear about the hard time you are going through. I actually went through some tragic circumstances right before a diagnosis as well. Maybe there is something to that? Anyways, This indeed can be tremendously overwhelming and scary. But that is why we are here for one another. Because, even when everything is so Bad and no one else could ever understand the way we feel, we have one another. So that is what matters! For so long, I was a member of this site, and never posted on the message boards. While I learned so much about I.C. I did feel very alone until I came here!! I hope you continue to find the same comfort and I hope for you no question is unanswered!! I also hope, you find great success in challenging your fears together here with us, so that one day we all may be able to claim that we have beaten the I.C.!!!! warmest regards, and all the best to you!!!
              Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

              Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

              Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

              Comment

              • #8
                Hi Laura, and Welcome to this wonderful board. It sounds like you have truly had a rough time. I am very sorry that all this has happened to you. Please know that so many of us on this board are here to listen and support you.
                As you know; time has a way of easing some things, but it is a battle at other times.
                IC can be managed ( as you know) and it sounds crazy, but if one has to have IC, it is the best time yet, to be diagnosed, because the research is getting better all the time. There are many options for meds and many Docs now who understand this illness.
                It is also interesting that what works for some, does not always work for another, so there are plenty of sweet people here that can share their experiences with you.

                Good luck to you and stay in touch for your own sanity's sake. Hey, we all need to lean on each other and this is the place. You need the support, and you have us as friends and having friends who know about IC is a gift since we are all gonna get better some day....I believe!
                Love,
                Katheryn

                Comment

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