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Back From Remission

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  • Back From Remission

    I'm seventeen and in my senior year of high school, but I've had IC pain since 5th grade. I was only diagnosed in 9th. Most of my teen years have been an ongoing battle with IC, but I did go into remission for two years, when the only times I had flare-ups was during my period.

    Well, since mid-January of this year my IC has been back full force. I nearly forgot how awful it was, how it prevents me from doing most things. How I have to worry about leaving the house because I know how much pain I'm going to be in. I'm going to a convention in a couple of weeks and I'm completely stressed out over it. I don't know how to control the pain, I've never known how - I've tried everything in the book to help get my flares under control but nothing works. I'm in pain every single day now, up to three flare-ups a day. It's 5:30 am right now and I've been up all night, I can't sleep.

    I wish it would just go away again. I don't want to deal with this anymore. What if I never go into another remission? What if I have to keep living with this intense pain? I've been battling severe depression over the past year, too, and my mental health has finally been improving (and if you've had depression, you know that when you're at your worst it really seems like nothing will ever get better... the fact that it is getting better is huge for me), but as soon as it did my IC seemed to come back. I've been crying a lot since then from a combination of pain and frustration and I don't want to fall back into depression, either. I'd take physical pain over mental pain, but I'd prefer neither, and I know I can't deal with both.

    I'm sorry this is so whiny, I know it comes off as immature, and I know I should just deal with it. I'm running on no sleep.
    Last edited by Klavier; 02-27-2011, 10:41 PM.

  • #2
    I am so sorry that you are having pain again. Your post isn't whiny and least of all is it immature, in fact while reading your post I was thinking to myself how mature and in self aware you sound. Most young people your age aren't as in tune with their emotions as you seem to be.
    I wonder if the stresses of your senior year were part of your IC coming back out of remission? I know that senior's have a lot going on. Are you taking any medication for your IC? depression? If not, perhaps you could see someone about getting something to help you. You didn't mention if you were following the IC diet or not, but if not certainly give that a try.
    Once again, you don't sound whiny in the least and you have every right to whine if you want to. That is what why we are here! Whine away! I would certainly hope for you that since you have had one remission that you will be able to have that again. It sounds like you are going thru one really BIG flare. Please keep us updated as to how you are doing.
    Wishing you happiness and painfree days ahead.
    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


    • #3
      I hope your tomorrow will be better. I will echo Sandra about the diet. If you're not following it, I suggest you begin today. And by all means you need to see your doctor for some help.

      Sending wishes for another remission,
      Stay safe

      Elmiron Eye Disease Information Center -
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      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.

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      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


      • #4
        I totally understand how feel. Please don't think it was whiny.. I have been very sad as well and am feeling depressed too.. Please get with your urologist and see if he can help you. I have as well been very depressed and have an appointment tomorrow with mine. Try the IC diet and see if it helps you. I can not imagine how you feel going through this as a teenager. I was diagnosed in 2001 and I was 24 years old and my gosh it was horrible. Please hang in there and I hope that you find some relief soon. Please do let us know how you are feeling and If you find some relief. Please don't give up on hope of another remission. I was in remission for 5 years and after my second child it came back and has been here since. I keep hoping that there will be another remission some where around the corner. Hang in there!!!!!


        • #5
          Klavier, I am so sorry to hear your IC is so bad right now. I also had IC when I was very young too and now I have a 14 year old that has IC also.

          I didn't think that you sounded whiny or immature. I think that it is so good that you are able to write what you are feeling. I think this is a positive way to vent.

          I agree with Donna and Sandra about the diet. I know that diets are a hard thing specially when you are a teenager but, do try hard to stick with it. It can really help those with sensitive bladders.

          I know for me getting sleep is crucial. A night without sleep and ongoing pain can take me right into depression too. I cannot function and cry all the time when I cannot sleep. Please know that you are not alone and that things will eventually get better.

          There are lots of different options out there to help with pain. You didn't mention if you were trying anything. Are your parents, teachers, councler's at school aware of all this and supportive?

          Hope you can get some good sleep and that your pain will let up. You will be in my prayers. Best of luck to you.


          • #6
            Thank you, everyone!

            I've been to many, many doctors and urologists before and I just got a new one last week. He gave me two different pills to try, Vesicare and Atarax, and I'm going back in two weeks. He said there are various things we can try so I'm trying to stay optimistic, at least! I've never tried a specific IC diet but I do know that foods like chocolate can be triggers so I'm trying to stay away from them for the time being (it's difficult, because I love chocolate!) I've been on different medications before (Elmiron didn't help), and I've had a DMSO instillation done which was the most painful experience I have ever been through in my life. Horrible. I don't know if I'd do it again. On top of that, over the past year while my IC was in remission I tried at least seven different antidepressants (not all at once, of course!!) None of them helped with the depression but I am wondering if they helped with the IC, now that I'm off antidepressants but in pain.

            There are lots of different options out there to help with pain. You didn't mention if you were trying anything. Are your parents, teachers, councler's at school aware of all this and supportive?
            Yes, everyone is aware of it, my parents are very supportive. I was actually in pain for two years before even telling my mom about it because I was embarrassed and thought the pain might be a normal sign of growing up.

            I'm still in pain today but it's nowhere near as awful as it was last night, so that's good, at least! Thank you everyone, I really appreciate it.


            • #7
              Some antidepressants can help with pain for sure. I do know what you mean by having to choose between mental pain and physical pain. In no way should you ever think you are whinny. Maybe one of the anti-depressants was helping your IC. Elavil is a commonly prescribed one to help with the pain. You could also talk to your uro about pain medication. You should not have to suffer in with this awful pain. You are so young, and it is a really great sign that you were in remission before.

              We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN that we may become more SPIRITUAL.


              • #8
                I'm so glad to hear that your doc has different things for you to try. That is always hopeful. I hope you are getting some relief now. Can you differentiate between the bladder and the pelvic floor pain. I know that Jill here on the ICNetwork has some videos on calming the sensitive bladder and pelvic floor muscles. Have you checked those out? I think they are helpful.

                I know I am a chocolate lover also. Have you tried white chocolate? They make white chocolate kit kats and Peanutbutter cups. Becarefull if peanutbutter is a trigger for you. Sometimes for me white chocolate can help satisfy that craving for chocolate. If you havent yet I would strongly urge you to check out the IC diet list also here on the IC network. There are so many things that can upset an already sore bladder. Share it with your mother so she is aware also. For me It was always hard to tell what bothered my bladder and what didn't. My daughter is another story, we can tell right away what bothers her. Everyone is so different. What bothers one might not bother someone else. Do try to AVOID those trigger foods and beaware of other foods. Keeping a food journal and keeping track of your symptoms along with it might be helpful. The more you understand about yourself the more control you have.

                As for the pelvic pain, what a beast that can be also, I found a pelvic therapis, she has helped me tremediously!!!!! Oh, I only wish I would have had her 20 or 30 years ago. So if you experience lots of pelvic floor issues I would highly recomend asking your doctor about a PT.

                I think it is probably a good idea to stay on an antidepressent, specially if you are depressed now. Be sure and talk with your doctor about it. I think the mom in me is comming out but, what helps me is to make a list of things I want to mention or discuss with the doctor. You have such a short time with them and it seems like if I don't have a list, I always forget something. Can you believe last time I went in I was in a bad flare and I wanted something for relief. We talked about so many other options that I forgot to get a perscription for pain relief. How Crazy is that! I use the valium suppository's. They help me with pelvic floor pain and just to calm me down and get some sleep. Maybe something like that is an option for you also.

                Oh I do wish you the best of luck, Keep your chin up. Someone out here cares about you.

                You are smarter than you think, Stronger than you seem, Braver than you know -Winnie the Pooh-