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16 years old, really struggling and in need of support!

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  • 16 years old, really struggling and in need of support!

    Hi,

    I am a 16 year old girl from Adelaide, Australia and was diagnosed with IC in August of 2011. I have now had IC for 6 years but went undiagnosed for 5.

    Since August of 2012 I have been in immense pain. It all started one Monday at school when I had a terrible painful heavy, tight feeling all around and above my belly button. It got worse after I ate and I couldnt understand what it was. I basically brushed it off and thought I'll go to sleep tonight and it will be gone tomorrow. Well that didnt happen and today I am sitting here on the 18th of January approximately 5 months later with the same problem. Once I realised after a week or so that the pain wasnt going anyone my mum and I did some research and tried to come up with reasons for what it could be. I wont go into detail about every little thing we did up and till this point so I will just run down the important bits. We went to the urologist who couldnt help us (she thought it was an umbilical hernia which it wasn't), we then went to the gastroenterologist who did an endoscopy and said I still had food in my stomach after fasting for 6 hours but apparently thats normal (which its not) then he finally decided to do another test and I discovered I had slight delayed gastric emptying. He prescribed me with medication but said that that was unlikely causing the pain. He then referred me to the Pain Managed Unit and the Royal Adelaide Hospital and said that they would be more helpful for me. In between all this I had been rushed to the hospital twice by ambulance in extreme pain all around my belly button and above it. This pain started after I urinated. Since then I have been to the hospital another two times with the same thing and it is something I dont wish on my worst enemy. Now I am under the care of a naturopath who says my bladder, kidney's, pancreas and intestines are severly inflamed and infected with a parasite and candida. I am now on supplements from her for all those problems and she has taken me off most foods as well. I am also still under the care of the Pain Management Clinic and I see a psychologist there weekly as I am suffering from anxiety (from fear of the extreme pain when I need an ambulance) and depression. The unit has also put my case forward to the Pain Panel Board as they feel I am such a complex case.

    At the moment I am feeling severely down and depressed. I live now in constant 24/7 pain and I stand for most of my day which makes me exhausted as it hurts worse when I sit. I am just feeling like nothing in the world is going my way and I wont ever get better. I have great support from my family but its hard as even though they sympathise they dont fully understand what I'm going through. For the last 6 years I have lived every moment of every day in pain. I dont know what its like to not have pain, to feel normal. I honestly dont know how much longer I can do this.

    If anyone can offer me any kind of support or maybe even tell me they have the same or a similar problem and how it help then it would be appreciated.

    Thanks
    Last edited by ICNDonna; 01-18-2013, 04:39 AM.

  • #2
    I'm so sorry you are having such a difficult time. I'm sending healing thoughts your way.


    Donna
    Stay safe


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    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]

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    • #3
      Rach~
      First of all, are you on Elmiron or any other medications for IC? It sounds like your bladder is very irritated. Are you on the IC Diet? Are you taking any pain medications?
      Diagnosed with IC in May 2011

      Current Medications:
      Elmiron 400 mg daily
      Imipramine 75 mg daily

      Comment


      • #4
        Hi,

        yes I am on Gabapentin for my bladder. I have also been on the IC diet since August of 2011 but find even if I eat all the right foods my bladder is still in distress. When I was first diagnosed they put me on Amitriptyline and that helped for a while but I found that now it does nothing so I was taken off of it. Thank you for your thoughts. I went to the doctors today and they put me on an anti-depressent which will also help with my anxiety. I am just praying it kicks in fast.

        I'm just not sure why my bladder is playing up so much and why it has irritated my stomach and caused me all this pain. Does anyone think it could be hormones?

        Comment


        • #5
          What dose of Amitriptyline were you on? I have read many people have to up their dose for it to keep working. What about Elmiron? It is the only medication approved to treat IC. I am glad they put you on an antidepressant, but sometimes it takes a few weeks. Many antidepressants, like Zoloft help with depression and anxiety.

          I am just wondering if you need something stronger then Gabapentin, at least for now. It doesn't sound like you are getting good pain relief. Is it possible for you to see a pain specialist?

          I do think it could be your hormones. I was on the pill for yearsa nd went off it on April. My symptoms kicked in like crazy!!
          Diagnosed with IC in May 2011

          Current Medications:
          Elmiron 400 mg daily
          Imipramine 75 mg daily

          Comment


          • #6
            I was on 25 mg every night. Unfortunately not many doctors here in Australia know a lot about IC and Elmiron isn't a common drug so its very hard to get and extremely expensive ($250) The urologist doesnt think I should go on it and I am a bit worried about the side effects too, mainly hair loss. Has Elmiron worked for you?

            I definitely do need some stronger pain relief but because I am so young people are very hesitant to put me on it because of how addicting it can become. I am seeing a pain specialist at the moment at the Pain Management Unit but she said I am a really complex case.

            Well my mum and I have always thought hormones have to do with it because it started when I was ten. I'm on the pill too because of my bad periods and I have been skipping them at the moment because I just cant stand all of this pain. If it is hormones then I dont know what age it will settle down. It might not for another few years until I hit my 20's.

            Comment


            • #7
              I am on Elmiron, but have not had any side effects. I don't think it is working for me yet, but it can take months and months. I wonder of your URO would put you on a high dose of Amitriptyline. That may help. I am glad you are seeing a pain management specialist. The other thing I am wondering about is instills. Has your URO mentioned that?
              Diagnosed with IC in May 2011

              Current Medications:
              Elmiron 400 mg daily
              Imipramine 75 mg daily

              Comment


              • #8
                hi
                im sorry to hear of your pain. im not diagnose, but suspect i have ic. if im right i will have had it for 5 years. i know how depressing it is to be in constant uncomfortablnesss or in your case pain. like you i dont know what normal feels like. it seeems frustrating having no one around deal with what you feel especially if they believe nothing is wrong. i will support u in any way possible i know i dont know u but we need to be there for each other. at this stage in our lives we must chose our paths and to think about living like this forever is.. no words just anxiety. i would love to hear from u
                noelle

                Comment


                • #9
                  Regarding the Elmiron, I've been on it for 2 1/2 months. I'm one of the unlucky ones who's hair is falling out. It's not a lot but sometimes like 20 strands of hair will come out just by running my fingers through my hair. My bf said he sees hair all over out place but there's nothing I can do.
                  It's very upsetting. I'm 27 and shouldn't be losing my hair!
                  My doctor cut my dose back by 2 pills a day instead of 3. I'm going to be very upset if this drug doesn't work and I wasted all this money and have no hair!!
                  Good luck though, I really hope you get some relief!

                  Comment


                  • #10
                    Sophie~
                    I can understand that losing your hair could be upsetting, but maybe it means the elmiron is working!! Just a different way to look at it.
                    Diagnosed with IC in May 2011

                    Current Medications:
                    Elmiron 400 mg daily
                    Imipramine 75 mg daily

                    Comment


                    • #11
                      Hi. I am a 16 year old from the United States. I was diagnosed with IC November of 2012, with a long road to get there. I also suffer from Pelvic floor dysfunction. I am on narcotics just to keep my pain from being at a 10 24/7. This has changed my life dramatically and I can no longer attend a full day for school.

                      I'm depressed as well because I am tired of being in agony all of the time. Since IC is not very common with teens, I felt like I was the only one at this age suffering from this horrible condition until I saw a few posts of 16 year olds suffering from IC just like me. I wish people that I am around in my daily life and my friends understood what I was going through, but they don't. So it's nice to see that I am not the only one in this world. And I'm sure it's nice to see that you are not either!

                      Although most days I dont even want to live because my body is tired of the pain, we can't give up! My doctors and family promise me that this pain will not be forever (though it's hard for me to believe), I promise you the same. This won't last forever.

                      I can tell you that I truly understand what you are going through. It makes this ten times harder to go through this as a teenager!! I am sorry you have to go through this pain. It is hell. But there is hope and we can't give in to the pain caused by Interstitial Cystitis. We have to work way harder than normal people to achieve our goals and to just live out our daily lives, but it is also going to make us way stronger in the end! I hope I helped and I am always here for advice, to share my story, or if you just need to rant about how much this SUCKS. Hang in there!
                      -Katy
                      Katy

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