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IC LETTER...again

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  • IC LETTER...again

    Hi all i have posted this before but i am posting it again to share with the newbies .. hope you like it!

    here is a letter to people without ic....

    Hi, i hope you will be kind enough to read every word of this letter to the end. it means a lot to me that you understand how i feel...

    I am still me. but i have this painful chronic bladder disorder called interstitial cystitis (IC) It is a chronic inflammatory condition of the bladder. Its cause is unknown. "Common" cystitis, also known as a urinary tract infection, is caused by bacteria and is usually successfully treated with antibiotics. Unlike common cystitis, IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy .the cause of it is unknown and there is NO cure. all i can do is to live with it for the rest of my life and try to cope.

    Imagine, i need to go to the toilet every 20-30 mins. i can't hold my urine as it is extremly painful --it is just like you are having hot burning lava in your bladder and you JUST have to go!!! i spend alot of time in the toilet.

    everytime i go in the cubicle, i have to brace myself for a 'volcano eruption', painful pee session and when i pee, i get all tensed up, my face turns red, i break out in sweat, i need to bend over , curl up and grap onto anything like the toilet rolls holder and let out the HOT BURNING LAVA PEE....and when it's done, i have to make sure there is no second round of pee/leakage, let the pain relieve slowly and then i can zip up and get out... not to mention i will be BACK after 20/30mins...

    Each pee session is so torturing for me and i even have to wake up every hour or so when i sleep to pee hot lava!!!

    when i am not in the toilet, there are timeswhen i get a flare, and i have this terrible burning pain in my GROIN area and i just can't move or even think properly. Do YOU even have the MOOD to do anything when your vagina/penis is burning with hot lava???

    on top of that, i am depressed. how can you be happy when you have this kind of pain?? i can't even do normal things like sit through an entire movie!!i never know when i am going to get a flare and it affects my entire life!!i am scared and i don't want to be a burden to anyone... I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too. „« Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal

    that is my life and i am struggling to cope with it. i don't expect you to help in anyway as you can't. i just hope that you will be more understanding and patient with me when i am in pain, when you have to wait for me when i am in the loo, and be sensitive when i am depressed!

    sometimes i feel so left out! it's like i don't belong or i am weird or something. sometimes i just can't take it anymore and don't even feel like living.i will never be fine or ok... but it is comforting and nice to hear you utter words of concern to me once in a while. i really appreciate that. i hope you will be here for me just as i will for you. thank you and God bless.

  • #2
    You got that right! Said it as it really is Thanks for that..
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
    Tried DMSO instill- had 5 out of 6
    Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6th 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Metformin (prediabetic)
    Sinequan (depression)


    • #3
      Gwynn, so glad you posted that again. It really explains IC, and how it feels. It really is so true, take care, and so glad you are back, hugs Iris. hi grouphug
      Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


      • #4
        Hi Gwynn: hi

        Your letter is quite impressive and touching. It sounds like you have given up hope in getting better. There are many types of treatments out there that have helped many IC patients. They may not be cures, but they may be effective treatments that can help make life better. If you haven't already, find an IC specialist in your area. There are oral drugs and bladder instillations you could try for pain, urgency and frequency.

        There are also natural alternatives as well. Since I haven't had great luck with medical treatments, I'm looking into herbal remedies. Herbs that might be helpful include marshmallow root, mullein, and aloe vera. These are suppossed to act as anti-inflammatories and to help soothe and heal the bladder. I just started trying the aloe vera capsules the other day so it's too soon to say if they're working or not. I need to give them at least a month's trial. There are also books about IC from this website and on that could give you further insight on what to do.

        Also, I'm now learning that our mental outlook can also make or break our healing plan. If we focus a lot on the negative, more negative will come. If we focus on something positive (loving, healing affirmations, etc.) then our physical health is more likely to go in a positive direction. It's not easy to be positive, I know, especially during a flare. I, too struggle with that but I'll keep trying.

        I'm glad you found this message board. Know that you are not alone with IC and that you can come here anytime to vent. Before I found this message board last month, I also felt alone because I didn't know anyone with IC. There are many wonderful folks here to talk to. grouphug

        Good luck to you, Gwynn and don't lose hope! People tell me that often. I send you some positive energy kissing

        Take care,

        Zanni2 angel


        • #5
          Gwyn, grouphug grouphug grouphug

          Your letter really explained this nasty disease we share, ic. I've found that sometimes azo-standard, over the counter at drug stores can sometimes help ease the intense burning. My doctor recommended.

          I am concerned when you say sometimes life isn't worth living. I guess I'm trying to say, your just saying that and not thinking about doing anything, are you? There are so many of us that understand and you can post any time.

          Please notify your doctor immediatedly as there are medications that can help ease your pain. I know the constant run to the toilet is the pits.

          Please post and let us know how you are. In the meantime take really good care of yourself. kissing grouphug angel