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  • #1

    not diagnosed but going crazy

    Prior to my hysterectomy/pelvic reconstruction surgery on Oct 17 of this year i had urgency/frequency bad.....

    doc said that my surgery would not help that at all.....but it did, it seems my bladder capacity has grown, when i pee i feel like i am actually peeing a full load BUT

    6 weeks out from surgery i ended up in ER one weekend with what i thought was a severe bladder infection but nothing was wrong with me. Moderate to severe pain before and after peeing, stomach pain that had me doubled over. An aching in my bladder and pelvic area all the time. i usually feel like i want to kill someone.....when i saw my doc and they did a cath to test for infection i just started sobbing as that complete emptying was incredibly painful

    Now thinking back on my pre testing and looking up these symptoms they could never fill my bladder very full for the tests as i would get horrible pain, i always thought the nurse was using the cath wrong

    i had the severe pain for 3 weeks and then all of a sudden it went away....yeah pain free for one week and then beginning of this week it is back, went to doc to rule out infection and nothing

    taking tylenol with codeine in the day and something stronger at night

    this time my feet are also aching everytime my bladder is really bad. feel like i am generally falling apart, very depressed, want to either cry all day or sleep

    doc will do a cystoscopy at my 3 month check (from surgery) I am on total pelvic rest until then, i can't imagine having sex with this pain,

    does a cystoscopy in the office even make sense? can you diagnose from that or just the one in the hospital with the bladder distenstion?

    starting monday i am going to do the diet
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  • #2
    Yes the doctor can do the cystoscopy in the office. He will be able to take pictures of your bladder and show them to you. If you have IC, it should be pretty easy for him to tell by looking at it.
    I think you should just wait and see. It wont hurt to do a bladder healthy diet. Because the acids in some foods and drinks can irritate the bladder. Since you just had the hysterectomy and the pelvic reconstruction, some of your symptoms may be related to that. So I would wait and see if the doctor thinks you have IC. Hopefully, you don't and these things are just happening because of your other "female" problems. Sorry you are so uncomfortable.

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    • #3
      An office cystoscopy will not necessarily diagnose IC. My bladder looked completely normal and healthy when the cysto alone was done. However, it can be an important part of the ruling out process when diagnosing IC. My IC was apparent when the hydrodistention was done.

      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
        donna, thank you that is what i wanted to know, my one done in the office earlier was perfectly normal but i didn't have pain then, so i don't imagine i got cancer or something else in that period of time, i don't want to pay for a test that wouldn't tell me definitely one way or the other

        i will call doc and see what he thinks

        and Tara yes i am hoping this is other female problems or a side effect (short term) from my surgery

        up tonight with bad pain that tylenol with codeine did not touch

        Comment

        • #5
          my bladder looked normal under an office cystoscopy. I finally went to a doctor who knew more about IC. She performed a cystoscopy w/ hydrodistension and glomerulations were found on my bladder wall. From what I have researched office cystoscopies are not a diagnosible tool for interstitial cystitis.
          Last edited by gatorgal; 01-02-2011, 02:31 AM.
          current meds- ditropan 5mg xl, neurontin 300 mg. zanaflex for pelvic floor spasms Most meds, IC meds included, cause me bladder pain

          previous med- elmiron( nothing after 8 months), atarax ( to sleepy), ditropan ( retention), Cymbalta, cystoprotek( worsened flare) has helped many others, aloe vera ( worsened flare), lyrica( irritated bladder.

          interstim implant (reduces my ic pain)January,2007

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          • #6
            then i read from other people that the cystoscopy with distention caused them to have horrible side effects that lasted for a long time and they don't recommend it. Not sure what to do.


            I already inadvertantly had the distention./wink....mistake at the hospital after my surgery. My cath got a kink in it and the nuse wouldn't believe me until i started crying that something was wrong. When they finally believed me i peed out two entire bags full. UGH

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