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Does this sound familiar to anyone?

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  • Does this sound familiar to anyone?

    I'm so perplexed. Over the past several days I've realized that my bladder pain is worse in the 1-2 hours after voiding...although I feel no pain WHILE voiding. Unlike most IC patients, I don't have the frequency. Sometimes I feel like I need to go, but I know that I don't actually, so I just try to quit thinking about it. Today I went pee at 5am and not again until almost 4pm. My family and I were at Disneyland and it was HOT. I'm pretty sure I sweat out all of the water I drank. I was careful not to chug, but I was sipping ice water all day long. I won't lie, I didn't want to have to urinate because I wanted to avoid the discomfort while I was at the Happiest Place on Earth.

    So, I was feeling some irritation and had a couple of spasms this morning and on the drive to Disneyland. I took an Ativan to calm me down (I was getting really anxious) and some Azo with breakfast. I was 100% symptom free for the entire day at the park.

    I said to my husband, "I sometimes wonder if some of this is in my head....I was happy and distracted today, and so I felt no discomfort" and he replied that he agreed, but I was careful to remind him that there is NO WAY that ALL of it is in my head. No possible way. I know that this is real for me, I know my body and I know when I am in actual pain or discomfort. I just wonder if it's possible FOR ME (I know I'm a lucky one) to fight this off mentallly. Heck, maybe I'm just having a good day and it's a fluke and tomorrow I'll be miserable again. Maybe it was the combo of the meds that made me feel better today. Who knows. I just wanted to put it out there to see if anyone was in a similar boat.

    Also, why could it be that the longer I go without voiding the BETTER I feel? That's the opposite of most IC patients. I feel like after I void my bladder is smasming and shrinking or something, and that's when I feel pain. I do also have constant (although not today...) urethral pain.

    Sigh. This disease is such a mystery.

    Oh, and excellent news!!! I am now insured, effective Sept 13th!! What a great weight off of my shoulders.
    Diagnosed with IC in 2004 at the age of 19
    12 weeks of instillations (don't remember what)
    Remission from late 2005 until August 2011.
    Married in 2005 - Our son was born in 2008!

    IC acting back up after a severe UTI in June followed by another mild UTI in August.

    Current Treatment
    ~IC diet - not strict, but avoiding most things including my beloved soy chai lattes. Drinking only water and blueberry juice. No tomatoes or anything spicey.
    ~1/2-1mg Ativan per day - has been the only thing to help! Praying that my doctor will let me continue with it
    ~25mg Doxipen
    ~Azo as needed (don't really notice a difference)

    IC symptoms get progressively worse throughout the day. Sleep and constant distraction are my only refuge!

  • #2
    Hating IC

    I am having the same issues with the pain after voiding. It lasts extremely too long and I am running out of ideas to stop the pain. I'm drinking spring water and smart water; I'm taking elmiron, atarax, cystex, and prelief. I've given up everything that I know to be acidic. I don't know what else to do.


    • #3
      Pain after urinating

      Hi, I read your post and hope this will be of help to you. I was experiencing the same thing along with a flare. I would occasionaly have this but it would come and go. When I was in my most recent flare I asked my uro some questions about it and he told me that it was a circulation problem. He told me that every night before I go to bed to elevate my legs high with the rest of my body flat for one hour. I thought "Oh yeah, right!. Well, I didn't think it would hurt to try and after 4 or 5 days I noticed a big difference. It's been about 6 weeks now and every night weather I want to or not I have a wedge that I even prop up more and stay in that position for an hour. Sometimes I hate it but it has taken the pain and uncomfortableness away after I urinate so I'd have to say it works. Hope this helps you too. I might add that I am 65yrs. of age, don't know if that's an issue but I don't have any other circutlation problems, heart etc. Again, hope it's helpful for you too and if so I would like to hear back. Good luck, Judy G