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So Miserable and confused.. :(

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  • So Miserable and confused.. :(

    Ive recently been diagnosed after 5 months in and out of hospital, 8 courses of antibiotics and a lot of other diagnoses. Ive read a lot of other peoples stories and it is amazing to find other people going through what I have described for months and months without anyone understanding.

    I am still confused about a few things as to how mine is so severe, my stomach is constantly swollen, sometimes increasing to the size of being 6 months pregnant, I have heard other people say this but since having this it has never gone back to how my stomach was? Im still urinating 40 odd times a day and the pain is so strong.

    I am struggling with the diet A LOT, mainly because I lived for convenience and ate a lot of pre packaged snacks. I miss practically every food I cant have and many foods still seem to cause a severe flare up.

    Many people say they go around their normal lives day to day? I dont know if mine is more severe but so far I have had to give up my job as a personal trainer, giving up all major exercise, even walking atm is painful, i feel as though I cant go out anywhere to eat/drink with friends ect.

    I know this is all new to me but im feeling very overwhelmed and miserable. If anyone has got any advice/suggestions it really would keep me going

    Hannah xx

  • #2
    Hannah welcome to the IC family, sad that you were dx with this however you didn't mention if the doctors has you on any meds, if so what do they have you on? As i'm sure you've read we're all different in our symtoms, meds what works and what don't. I'm on Vesicare and doing weekly instills, I too have just been rececntly diagnosed. I've read that water with baking soda helps alot, I do use over the counter Tiger balm pain patches which help with my pain however my pain is more of a nagging ache now since I've started the instills. I do hope you find relief soon.
    IC diagnosis 3 weeks ago.
    Vesicare 10 mg once daily
    IBS and Gerd-Zegerid
    IC diet
    Elmiron 100 mg three daily
    Hydroxyzine 25 mg at night
    Amitriptyline 10mg at night
    Diovan 60/12.5 daily
    Topral 50 mg daily
    Zoloft 100 mg at night
    Klonopin .5 twice daily


    • #3
      Hang in there!

      Just wanted to say hang in there. I've been/am going through this for 8 months now without a formal diagnosis, but we get out of bed everyday and continue to live our lives, knowing that relief will come upon meeting the right person with the right answer!

      I'm hoping that mine comes when I go for therapy this Wed for pelvic muscle spasms--if not, I need a bladder biopsy.

      We're all in this together, no matter where we live!

      Blessings to you!


      Current medication: Soul-searching

      Vitamin D and B, Green smoothies, infrared sauna use, walking, cleansing, still seeking doctors to help find THE CAUSE of this--autoimmune or infection.


      • #4
        Hello Hannah,

        Welcome to the ICN. I am sorry that you have IC, it can be very difficult in the beginning. I am like you and have a lot of pain. Unlike you, I don't as much frequency as you do. I was also wondering what, if any meds you are on. If you are on meds and not seeing any changes you really need to let your Dr know. There are so many treatments to try. My signature has a link to the patient section of this site and I think it will help you a lot, you can find info on medications, the diet and lots of other helpful things for a newly diagnosed ICer. I hope that you see some results soon and start feeling better.
        Link to the patient information, everything from What is IC? to Disability

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


        • #5
          I have had IC for 8 years. You sound just like me when I was first diagnosed. I will tell you that for me everything did begin to calm down and become a little more stable. I do still have pain and see a pain management doc every month and I do still have frequency/urgency and have the interstim that helps with that outside of flare ups. When I was first starting out I would have people ask me when my baby was due because my belly was so swollen and I was pretty slender. I would just make up a date and move on! I no longer have that swollen belly on a daily basis. Only during a flare up. Really I think it takes time to find the right meds and wrong foods and right treatments. Once you can find these things you will not feel so out of control. For me though the ability to work has not come back. I am still waiting for that but in the mean time have begun the process of applying for disability.

          While you will always deal with IC there will come a time where it is not the boss of you unless you are in a flare up and will not feel like you are in a constant flare up. That has been my experience and a lot of others on here. Hang in there and feel free to hang out here!
          Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!

          DX: IC - November 2002 after hysterectomy
          Interstim implanted March 2006 - died May 2011
          Interstim replacement June 2011
          Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
          Docs: Pain management doc, urologist, family practice


          • #6
            to the IC Network. I do understand how you are feeling. Back in 1975 when I was first diagnosed, I felt like it was the end of the world. It did take time, but with the help of a caring urologist, I did find treatment options that work for me. At that time, not much thought had been given to a diet connection, so I had to figure out my food and drink triggers on my own. I would have been so thankful to have the food list that's available now.

            Hang in there. You will have better days.

            Warm hugs,
            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            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:


            Diet list:

            AUA Guidelines:

            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.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              I figured I would give you another welcome as well. I do know you have gotten some good responses by now. None of us enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Yep! I can understand the feeling of being overwhelmed and miserable. Hey! I was diagnosed back in 1997 and just felt lost for a while. Of course, there was not as much information back then. Besides, I am a male that was diagnosed while it was still being called a womans disease. Oh, yeah! I have never read about any male IC'ers complaing of the "IC belly".(and not me) Also, some of us have been able to do some things that we could not do, or as well, at first. Oh! I can't say too much. I had to stop working because of degenerative disc disease after I actually hit the clock with IC at least 13 years. (and got on disability retirement) (and use a cane sometimes) OK. I actually feel overwhelmed at the moment as well.