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still bleeding but doc says ok

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  • nogo
    replied
    I had the results in 48 hours.

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  • GriffsMommy
    replied
    Very true Ronda, it seems it came back very fast.

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  • leelee88
    replied
    Nogo,
    How long did the results take to come back from your biopsy? usually they take about 2 weeks.

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  • nogo
    replied
    Griffsmommy, I did get a bladder biopsy and it was normal according to the doctor. I simply can't understand why I am having such severe urgency. My daughter is looking for an apt. today and one other daughter is moving into hers tomorrow and I can't help because I am so tied to bathrooms. It is a time in their lives when we should all be happy for them and helping out and I"m useless. That aside, I have to find the answer to this or go mad trying. It seems the docs have just thrown up their hands and don't know what else to do. I'm just saying lots of prayers.

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  • GriffsMommy
    replied
    Nogo,
    When he did your hydro did he also do a bladder biopsy?

    The reason I ask is because when I had mine done my uro came in to the recovery room and said that my bladder looked normal!! I started crying right there on the spot. I thought I had to be crazy, I have all these problems but my bladder looks normal. He told me that he would see me in the office in 2 weeks and that we would see what the biopsy showed.

    When I went in for my post-op and he had the results of the biopsy it DID show that I had IC. He said there were dones of mast cells in all of the samples that he took. This confirms IC. So even if you're bladder LOOKED okay that doesn't mean that it is. If you didn't get a bladder biopsy and he doesn't believe that you have IC but your'e having all these problems, then maybe it's time for another dr. Hope you get some relief soon.

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  • nogo
    replied
    the bleeding has finally subsided and I'm back to a rather bright yellow. I guess I haven't been drinking enough because I always feel llike the last thing I want to do is go to the bathroom more and water goes through me in seconds, so I tend to avoid it lately! But, with a hx of kidney stones, it's not a good idea not to drink. Talk about caught between a rock and a hard place! Thank you all for talking me through this post hydro bleed. The doc said the MRI showed one area in L3 or 4 that was compressed, but it wasn't an area that should be causing this polyuria. So, he doesn't know what to do next and he said let's just wait and see what happens. I think he has basically written me off since he had no absolute physical evidence of IC. If not, then WHY AM I GOING SO CONSTANTLY????? and why do I feel horrible and constant pressure to the point that I have to sit side saddle in any chair. Why do I pee all night long?????? Sorry, just frustrated and don't feel like the doc's are listening. I'm sure they think it's in my head. Right, I WANT to be totally incapacitated by my bladder restrictions, pain and pressure. I could just scream with frustration and I know you guys understand. Sorry about the rant.

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  • callie0767
    replied
    i agree with donna.i just had my 12th one 5 weeks ago.i am a long time icer-since i was 18 years old and now almost 40 next month.not looking forward to that. i have tried every med and or procedure known to man and the hydro is the only thing that helps me.i usually get relief for 6 months .it makes me feel almost normal. i could go three hours yesterday between bathroom trips and only got up three times last night compared to 10 to 12.
    i realize a lot of you had bad experiences from it but it does work for some . i was going to say something else but won't . but just because it didn't work for you doesn't mean it won't for someone else.

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  • sami4
    replied
    with all due respect

    With all due respect Donna, you are one of a very few who actually feels a benefit from cysto/hydro. I have read the studies and the percent was very low, which is why insurance companies and urologists are rethinking this procedure and its use as a diagnostic tool.
    Please do not take this personally, it is not meant so. I greatly value your opinions and posts, I just think you are a minority in this case.
    Sammi

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  • ICNDonna
    replied
    I just had a hydro one week ago and I feel much, much better than before the procedure. The last time I had one it gave me 15 months of relative comfort --- well worth being uncomfortable for a few days! I absolutely do not think the procedure is barbaric --- in my instance, I would call it life saving.

    Donna

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  • stac7_8
    replied
    Sammie I'm with you on that one.

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  • sami4
    replied
    Ignore me

    My personal opinion on the whole cysto hydro thing is that it is the most barbaric procedure I have ever heard of. Common sense would tell you that if you distend a fragile bladder to "see how much it could hold" that it would bleed. In fact even a normal bladder would bleed. And to tell you what? That you have probable IC? Geez, some pretty famous docs in the IC field diagnose IC by symptoms only or possibly a potassium test. And how does it then effect the treatment plan? OH, you mean you just try one thing and then another to see what will work? The standard Elmiron, Elavil, Atarax? Well, that effected the treatment plan huh?
    To rule out what? Bladder cancer? You can take a pee test for that.
    This practice is going the way of the model T car as more insurance companies are refusing to pay for the test as a diagnostic tool for IC.
    Ignore me, I am just opinionated.
    Sammi

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  • jen74
    replied
    Maybe it is possible that when they stretched the bladder, it really irritated it and that is why you are bleeding. Did he say how much water he used when he did the hydro? Any amount of blood in the urine is not normal at all. I also dont see how a small biopsy would bleed like that especailly after a week.
    I would keep an eye on it. If there is only a small amount of blood then I would not worry so much, but if it is alot, then I would be concerned. Hopefull the MRI results will come back soon. Hope you feel better soon.
    Jen

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  • nogo
    replied
    continue to bleed

    Still passing claret colored pee, but doc says it is still OK. I can't imagine that is an ok thing, but if he says so. I am drinking plenty of water, hoping to turn the color to chablis or blush at least. LOL! Urgency is better...every 15-30 now instead of every 5. What a HUGE difference in comfort that makes. I'll take it for now.
    MRI results will be back in next day or so. Will post.

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  • nogo
    replied
    thank you for asking. I am actually about to leave for my MRI. The urgency has lessened somewhat albeit still not normal, but the heavy claret colored urine is still present with each trip to the bathroom. I am going to give it one more day and if it hasn't at least turned to a blush color, I will have to call the doc back. I will let you know what the MRI shows. I very much appreciate your concern.

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  • charmedx3
    replied
    How are you doing today? Please keep us updated

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