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So confused

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  • So confused

    Well I was diagnosed with IC in July 2011. I have been in so muh pain and it has only gotten worse. The docto told me that I have the orst case of IC that they have seen. My bladder has very bad spasms and it is just so painful and uncomfortable. I was put on so many medications. Last week I was peeing straight blood, called my urogolist an they had me come straight into the office. The did a urine test and told me my bladder was infected. The doctor said I think that its time to go in and do a Cystoscopy & Hydrodistention. He also reffered me out to a specialist GYN to see if they thought that I needed any further testing done while I was put under so she agreed to check for endometies. She did an ultra sound, and said everything looked normal and fine, but that I should do the procedure while the urogolist was doing the Cystoscopy & Hydrodistention. Well I had these procedures both done yesterday and of course I was out of it but they talked to my husband and paernts, the GYN said no endometies everything looked fine, and the urogolist told them that my bladder looked healthy. I am so clueles to what is going on How can I go to being his "worst case" to a healthy bladder. I am still in so much pain. my post op visit is next wednesday and I am begining to wonder if I should go get a seond opionion. I know my body and have lots of pain and its coming from somewhere. I have all the syptoms of IC go to the bathroom more than 50 times a day. I just wondered what anyone else thought.


  • #2
    A hydrodistention is not 100% in making an IC diagnosis. If you're not feeling comfortable with what you are being told, I recommend getting a second opinion.

    Warm hugs,
    Stay safe

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    • #3

      Thanks Donna. I am just so completly to a loss right now. I just can't understand what all this pain would be coming from. I go back for my post-op with my uroglist on Wednesday. I am curious to see what he has to say, after he told my husband that I had a heathy looking bladder. I just keep asking myself over and over, what are they missing. I know my body is nt acting right. However, I did do some research and found a doctor that speciales in IC and Pelvic and bladder pain, and all that area. I am highly considering asking him to reffer me to this specialist for a second opionion. Thanks for your response, it's good to hear from someone cause my mind as been to a lose right now.

      Thanks Alot,


      • #4
        It may be worth a second opinion, or even a third if necessary. A lot of us have gone to several drs. before we felt comfortable with a diagnosis or treatment. It seems there are so many different variants in what causes pelvic pain that it can sometimes take a good while to figure out where it is coming from and why. It's so very frustrating in the beginning because we want someone to give us an answer to why we have this pain, or blood in the urine, or frequency etc. and we don't always get the answers right away. It's one of the things that makes this condition so hard to deal with sometimes. My pain was very bad in the beginning and my cysto/hydro showed a normal bladder also. I am now in some type of remission and pain free with only slight frequency at night, so no matter how much pain you are in now it is possible in time you will be feeling a whole lot better.