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Am I just different? (sorry..a bit long)

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  • Am I just different? (sorry..a bit long)

    I was diagnosed with IC about a year ago...and have been in denial until about 3 months ago. I evidently was experiencing a 'flare' when diagnosed and was put on Elavil. The elavil didn't really seem to do much but I did evidently go into a 'remission' phase where I only had some symptoms every now and again. I learned that as long as I was drinking water and lots of it I would be fine, or hot baths and heating pads...until about 3 months ago.

    Evidently I went through another flare period where every evening I was in extreme pain (not urgency..just pain and mainly external). Funny thing with me though is that as long as I have a full bladder...there's no urgency. The urgency feeling comes when I empty my bladder. So I usually go hours (sometimes 9-10) without going to the bathroom and only go when I absolutely can't hold it anymore . Which is usually when I get home from work. However the pain during this 'flare' was bad when my bladder was full and more extreme when empty. I called my Urologist that I first saw because the night time pain would get pretty bad and water, hot baths, and heating pads were no longer doing the trick.

    Unfortunately they couldn't get me in for a few weeks and by the time I went in the really bad pain had passed. They did an ultrasound that showed that I wasn't actually emptying my bladder evidently and prescribed Flomax and Lidocaine cream for the pain. The flomax makes my eyes feel like they are going to bulge out of my head so I have stopped taking those and the lidocaine only works if you consider burning searing pain in your nether regions a 'fix' for the other pain I was having. Of course...when you feel like your hooha is on fire you tend to forget the other...so I guess in that respect it worked..

    Anyway...all that to ask if the following is 'normal' or at least something other's have experienced:

    1. Full bladder is great! Empty bladder = pain and lots of it ? (seems like most ICers can't "hold" it to get to a full bladder??)

    2. If in the event that I have pain in the AM, drinking coffee actually makes the pain go away...although isn't coffee on the "no-no" list??

    3. I admitted to the Dr. that I had taken some lortab pills we had in the house during my latest flare (my boyfriend had sprained his ankle last year and was given the pain meds) and it helped to at least dull the pain so I could sleep...however I don't want to sound like an addict or just trying to 'score'...but lidocaine is not the answer for me!? What's the best way to approach the topic of pain control...are there other options? (I am currently in another period of 'flare up'....)

    4. Does this get worse with age? I am only 32 and it's really not cool that I am having to put hot compresses on my hooha and sleep with a heating pad between my legs...I feel really old and just want to know if this is going to get worse?

    Thanks for bearing with me through the long post...I have so much to say and ask with this...I just don't know where to start...

  • #2
    Ic

    What are the treatment plans the uro had you on? because everyone is different I have the DMSO treatments which so far work with me and I stick with the ic diet. wish you the best pray for a cure.
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    • #3
      It's not unusual for an ICer to have more pain immediately after emptying the bladder; it happens to me when I'm in a flare.

      I do have a couple of suggestions --- the first is to work with your urologist to try to find a treatment option that works for you. The second is to put yourself on an IC diet to see if it helps. You'll find the link to the latest food list in my signature below.

      Sending healing thoughts,
      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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      • #4
        hard headed

        Yeah, I guess I am just hard headed and still in some form of denial. I'm being like a child and stomping my foot sayiing "I don't want to follow a stupid diet"... Especially given that all of my favorite foods are on the not allowed list... (you should see how many cans of tomatoes, tomato sauce, tomato paste, tomato juice, I have in my pantry...)

        I am 32 years old, weigh 105 lbs, and all else being equal very healthy - and have to be on a diet...

        Plus I have no self control to stick to any kind of schedule...even the one elavil at bedtime was too much for me to stick too...I tend to forget...or the flomax...

        Now, the one glass a wine at night..hmmm...that might be a regimen I could handle however red wine isn't exactly on my approved list...

        I know...I know...hard-headed...

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        • #5
          Yes, Lido is cream - perhaps I will ask for gel at my next appt. (next week).

          I was using AZO last year with little effect. That is when I was diagnosed. It was a little comical really since I kept asking doctors why if I skipped lunch I suddenly would feel as though I had a UTI (I think they all thought I was crazy... ) But after being on antibiotics twice in a row and nothing showing on my cultures but me still complaining of symptoms - they finally sent me to the urologist. Each time I was on antibiotics I was also taking AZO without any relief (which was very strange for me since I have a history of UTI and AZO always provided relief before...)

          I originally wanted the lido to help with intercourse, mine is almost all but stopped because of my fear of the pain that follows the next day...plus it is so not romantic to 'finish' then quickly jump up for a warm compress and heating pad... unfortunately the lido has not provided any of the hoped for relief...

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