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Is this normal?

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  • Is this normal?

    I had my first Hydrodistention with cystoscopy over a month ago. When I woke up I was in pain and felt the need to urinate. After many minutes I was able to pass quite a bit of blood into a "hat" that sits over the toilet. I tried to urinate again but it was more difficult and still thick blood. The nurse then tried to cath me before I was sent home. She could not get the cath in and I went home. I was able to get small amounts of bloody urine out over the next day. I called the on call dr. and was told that I was not having an emergency and should have only called for an emergency. The next day I could not urinate at all. I went to my local emergency room and three different nurses made several attempts to cath me but couldn't, then the er doctor came in and tried, he couldn't either. He called the local on call urologist and that doctor said to try one more time and if they were not successful that he would come in. The team tried a couple of more times and finally were able to cath me. I wore the foley cath for three weeks. My operative report states that I have "moderate glomerulations present in her lateral walls." Coincidentally that is where my pain is, my left side and right side of my bladder. The worst is on the left side. My pain is daily and is brought on by food even though I am on the strictest of bland food and only drink water. I would like to know if passing large amounts of blood after this procedure is normal. I would also like to know if glomerulations present in the bladder mean anything in regards to IC. I was just informed today by the dr. that healthy bladders have glomerulations. I have severe pain in the exact area of these glomerulations. (I had also asked for photos of my bladder before the procedure, and was told I would get one copy, but none were taken. When I met with the dr. for a pre op visit I asked for the photos. ) I have several complications with muscles in my abdomen, back and legs due to pelvic floor dysfunction but that will be a story for another day. I was just wondering if I could get some info on glomerulations in regards to IC.

  • #2
    I know some people do have problems with a lot of blood. What is strange to me is they wouldn't even think of letting me leave the hospital until I could void on my own. It took me quite a few tries and I was there for a long time before I was allowed to go home. I am surprised they let you go like that. Sorry you have gone throught this. I thought glomerations were indicative of IC. They didn't take any pics or they didn't give them to you. I thought they always take pics for your records. Maybe you should ask for your records. How long have you been seeing this uro. Not being able to urinate sure sounds like an emergency to me! A lot of us have problems with pfd from all the pain of IC, so we can relate to those issues as well. Hopefully someone else that has had the blood issues will post, I personally did not have that problem.
    Link to the patient information, everything from What is IC? to Disability

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


    • #3
      Hi SailAway,

      Thanks your reply. I thought pics were always taken too. I met with this uro dr. for a pre op visit and I had read Brizia's list of questions to ask before the procedure. The first thing on my list to ask was can I have a copy of my bladder pics. I was told by the doctor "YOu can have one copy and then from that make as many copies as you like." He denies that he ever said he would give me pics and I was told that none were taken because he saw nothing to take pics of. My report states moderate glomerulations on both sides of my bladder wall. (I would like to have seen pics of that.) He said thats normal. I went through hell with this procedure and now I have to do it again if I want pics.


      • #4
        Strange, because they usually wait till you can void so many cc's that is why the hat. I know there has been a few times with myself that I either was told that I didn't have to measure my urine and/or that I didn't need to go that if I had problems once I got home to call the doctor. I do not know - I think its (medical care) only going to get worse.