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  • #1

    New

    Hi, I was diagnosed a week ago today. Went into a state of depresssion until about Friday when I started to climb out. I plowed through the internet last week and I think it scared me. I am following the IC diet - which is challenging to say the least, and also taking prelief. It feels very overwhelming at times, and I am scared at the long term effects if the IC is not managed. I am still very emotional, I noitce I get angry very easy. I go back to the URO in a month.

    I really feel like my IC is attached to my hysterectomy 3 years ago. That was the first time I remember having the all to common pain in my lower pelvic area. Has anyone else noiticed this?

    Thanks for this forum.
    Tags: None
  • #2
    First of all I would like to say WELCOME to the group!!!

    I would also like to say that in the first 6months of been diagnosed with IC you will feel very depressed, angry, confused, relieved, sad, overwhelmed and probably terrified!!! What will life be like? What will my future be? Can I cope? etc etc!!!

    My point is that all these emotions are totally normal and you are still coming to terms with what you have been told which I know is horrible!! Please dont beat yourself up about the depression because the main this is that you are getting yourself out of it and that proves you are strong!!!

    But I can promise you it does get easier! I still get depressed, angry sad etc but I manage much easier now and life is slowly becoming more normal. I have had to adapt my life which I hated but it was the only way and this again take time! I had to get used to doing different things in life and had to try to stop myself thinking and trying to work out why I have this??!

    its not worth thinking about as you will go round and round in circles!!!

    Best thing to do is to read up on as much info as you can...but remember just read a little but at a time and give yourself time to get used to it! Dont over do it as you will feel confused and overswhelmed! use everyone on here for support and realise you are not alone!

    I cant promise you that everything will be ok and you wont have bad times again because you probably will be you will come out of them a stronger person each time and once you get your head round the diet you will find that you can manage your IC very well. Dont forget that it can take up to 6-8 months to work out what you can eat and what you cant!

    I would recomend getting the information pack of this website and also any books you can aford!
    take carex
    Started with symptoms 2004 after a severe infection.
    Was diagnosed with IC Feb 2006 after cystoscopy.
    Diagnosed with vulvodyina and PN in july 2006.
    Dignosed with ME and IBS Oct 2006.
    Currently taking Amytriptaline 50mg, regular pain killers and birth control!
    Also doing IC diet and regular use of heat packs.
    Still struggling with IC and controling my symptoms so looking for some help

    also recently had abnormal pap, CIN III and just had LEEP done 2007

    Comment

    • #3
      kimmo. I am so glad you found you way here.

      Please don't let anyone's story overwhelm or frighten you. There isn't much consistency with IC except that we are all different and suffer with different symptoms and react differently to meds/treatments. What happens with one does not necessarily mean that it will happen with the next person. Keep that in mind while you are reading the information available on this site or other sites.

      While you are learning about IC, pay special attention to all the meds/treatments that are available to us. Arm yourself with all the information you can for your next appointment with your Uro. Become a vital partner in your own health care.

      What you are feeling right now is very common. We all felt angry, frightened and emotional in the beginning. Who wouldn't?

      Sharon

      Shopping??? Did someone mention shopping? I'll get my hat... ;-)

      Where I can be found most days.



      Link to the ICN Patient Handbook:
      http://www.ic-network.com/handbook/

      Link to the IC Diet:
      http://www.ic-network.com/diet/


      IC 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

      • #4
        I am glad you found us...
        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
          Hi Kimmo! Welcome to the ICN. I'm glad you found us. This is a great place - I found so much comfort and support here when I was first diagnosed (and still do). As others have mentioned, in the beginning it can be so very difficult and overwhelming. I just wanted you to know that for me it got better with time and patience. It took some trial and error with meds and such. It hasn't always been easy and I still have some bad days, but overall I live a pretty "normal" life. I have a new "normal" now - not the same as before I was diagnosed but life is still pretty darn good.

          Once I was able to stabalize my symptoms I started to notice a huge difference in my overall lifestyle. I began to enjoy things again and found myself more grateful for the things I do have in life. I think in the beginning it was easy for me to focus on what IC has taken from my life and all the things I am no longer able to do. Now, it's different. I just have a greater appreciation for life and all the simple things I used to take for granted.

          Keep coming here for support and share as much as you are comfortable with. Ask questions if you need to. There are so many truly wonderful people here that will support you and help you.

          I'm wishing you peace as you travel your IC journey. May you find relief from your symptoms soon. I'm hoping you start to feel better too. Take care of yourself.

          Warm welcoming hugs,
          Jennifer
          I speak of my personal experience only to provide support to others who have IC. I am not offering professional advice in any way. All patients are different and may respond differently to various remedies and medical treatments. These posts are based on my personal experience and are not meant to be viewed as medical advice nor do they replace the proper evaluation and treatment by a medical professional or healthcare provider. Please seek out treatment and medical advice from your doctor and medical team.

          Comment

          • #6
            New

            Thanks Jennifer! I found your repsonse, as well as all the others very helpful. They kind of give me some hope, things seem bleak at times. The thought of having to live without those things I loved so much seems dreadful. But I think you phrase it well, that I will have a new reality. My friends always call me when they are down because I am a "the glass is half full" kind of gal, always able to point out the things that they can be greatful for - guess I need to take my own advice.

            Its funny, I feel alone in all this - most of my family or friends don't seem to realize the impact of IC. In my head I'm thinking "don't they know who serious this is"? One day at a time I guess! Thanks again,

            Kimmo

            Comment

            • #7
              to the IC Network. You are never alone with IC when you come here. I still remember how devastated I was when I was diagnosed back in 1975. It may take a while to find exactly which foods and drinks are a problem and which treatment options work best, but most of us do get there --- and most of us feel good most of the time.

              Warm welcoming hugs,
              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

              Comment

              • #8
                Welcome Kimmo!
                I just wanted to add that some great advice I got from here is to keep a journal. At first I kept up with everything! Food I ate and if it caused me any pain or freq/urg. Even my bathroom trips and how much, if I felt I completely emptied, etc. It was really tough when my frequency/urgency was every 15 minutes. Even at night I would right it down so when I went to the doctor, I could talk to the doctor about exactly was going on. I also journaled my feelings whether I felt down or in a great mood. I don't journal as much as I used to, but when I am having a really bad day with pain or another flare, I find reading my journal helped since it reminded me that the flare will end and I will have good days and feel better again.

                Tracey

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