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  • Hopeless

    I was diagnosed with IC a month ago. I feel that my life is over. I am unable to work, take care of my kids, be a wife. The pain is at time so unbearabel laying down with a heating bad is all Im able to do. All the simple things we do on a daily basis I can't do and know one seems to understand what I'm going through. I never thought I would be a 37 year old women who has to wear a catheder or on a good wear a pad in case I pee on my self. The diet is very difficult. I know I need to give the treatments time,but it is so hard to see the light at the end of the tunnel. Help I need some one who knows how this feels.

  • #2
    I'm really sorry to hear you are feeling this bad. There are many people here who can relate to this, so you are in the right place for support. None of us thought we would ever be in this position. The sudden lifestyle change is sometimes overwhelming. You didn't mention if any medication or treatment you are on is helping. Do you have a dr. that is helpful and knowledgable about Ic? Have you tried the diet that is listed here?

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    • #3
      I strongly relate to what you are going through, it is diffinently a life long change. Hopefully your uro has you on a treatment plan where your pain subsides. It is hard for other people to understand what we go through no matter how hard we try to explain. I am glad you found this forum because everyone of us do understand. This is also a good place to get alot of info, I hope and pray you feel better soon.
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      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
      </center>

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      • #4
        I understand totally. It's just too difficult to imagine how I can be working out in one moment and unable to stand from the pain in another. I don't know how this happened so fast. What warning signs did I miss? I still can't believe it myself.
        Widowed at 44...and now IC!

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        • #5
          I can relate. I went to bed fine on July 9, 2003 and woke up July 10, 2003 very sick with IC. I had some fatigue and insomnia in the weeks preceding it, but nothing that would have fortold this. Those first few months were horrible, voiding 60x a day, unable to sleep more than 20 minutes at a time, unable to wear jeans, exercise, travel, attend church or movies, barely able to work (I probably shouldn't have been working, but I was scared that if I stopped, I wouldn't be able to return.) It took awhile, but I got my life back. The hardest part was that first year as I learned the diet and tried medicines one by one.

          I do want to tell you that I also was very afraid I'd lost everything & couldn't get it back. Today, I work fulltime, wear jeans every single day, exercise (when I'm not too lazy), attend church, go to the movies, travel. I still have IC, still follow the diet faithfully, take my medicines, do home instillations. BUT, I have good quality of life again and it's worth it to me to take care of myself with those treatments.

          Hang in there, how you feel today is not forever (even though it feels that way). Seek out second and third opinions if necessary. Follow the diet for at least 4-6 weeks, carefully with label reading. And most of all, don't give up hope. Most IC patients get better and return to a good quality of life.

          Wishing you better days soon,
          Kadi

          -------------------------------------------------------------
          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.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "


          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

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          • #6
            Originally posted by brna View Post
            I was diagnosed with IC a month ago. I feel that my life is over. I am unable to work, take care of my kids, be a wife. The pain is at time so unbearabel laying down with a heating bad is all Im able to do. All the simple things we do on a daily basis I can't do and know one seems to understand what I'm going through. I never thought I would be a 37 year old women who has to wear a catheder or on a good wear a pad in case I pee on my self. The diet is very difficult. I know I need to give the treatments time,but it is so hard to see the light at the end of the tunnel. Help I need some one who knows how this feels.
            Did you have alot of urinary tract infections prior to being diagnosed with IC?
            <center>
            <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
            </center>

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            • #7
              I do understand. Many of us went through the same thing when first diagnosed. It can take some time, but most of us do find effective treatments.

              I know it seems like forever, but if you stick with the diet and work with your doctor, you will have better days ahead.

              Warm 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

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              • #8
                (((((((hugs))))))))) Go to the remission board and read all the past hopeful stories!! You will not feel this bad forever. hang in there.


                wife, mom to three, theater professional
                diagnosed- "mild" IC Feb 10, 2011
                symptoms started on and off Nov 2010
                urgency, frequency, general bladder discomfort,itching, and other nasty feelings
                I am going completely holistic with herbs and diet to heal

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                • #9
                  brna - I have been trying to reply to your pm but I can't seem to get it to send. This is a tricky program on replying to private messages. I will try again but the last time I wrote a reply I ended up sending it to myself! lol I didn't want you to think I was ignoring your private message.

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