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Cystoscopy - Hydrodistention again

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  • Mothergoose
    replied
    Glad it wasn't too bad for you,

    heal fast MG

    Leave a comment:


  • wizbe
    replied
    Had the procedure

    Hello Everyone:-)

    Just to update - I had my hydrodistension done on Tuesday of this week. Tuesday evening I was definitely in a lot of pain, Wednesday I flew home and had people come get me to drive me home the 5.5 hour drive. I rested Thursday and today. The frequency of course have increased but I expected that for the first three weeks at least - every twenty - thirty minutes, not so bad today. I hope it will gradually get better. I am still walking slowly - but I was in a huge flare before I went and felt the same way then.

    After surgery I was told that they did the hydro, plus urethal dilation, and they burned a couple of ulcers off my bladder. He said it will take about six weeks to see if this works again. I am positive.

    I have to tell you though - it was stupid what they were giving me after surgery. After you get out of recovery and move to the discharge room - they give you liquid. Well the choices were - (1) water and (2) apple juice. So I asked for water and tasted the water and could taste the chlorine so I refused to drink it because it does really bad things to me and then they gave me apple juice. Not thinking, I drank the whole bottle of apple juice - I paid for it later. The next morning I got up after hardly sleeping all night and thought suddenly - drink loads of water - so I drank water water water and that helped tons.

    I took notes this time after the surgery - so that I can remember the next time (if there is a next time) what to expect and what not to do. It's hard to remember these things although it's my third time in 18 months LOL.

    Thanks for all of your support,
    Wizbe

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  • lizzie_71
    replied
    pain no relief or minimal at best

    after reading wizbe's post and her list of meds. Well, it just keeps on and on twith the similiar stories of continued pain even with significant pain meds ordered. However, I realize some are probably in a worse state or condition in their bladder and involved areas.
    I'm on hydrocodone from my other DX's but the script isn't enough to get me thru another month. I'm going to call my Uro. again. Due to my daily pain and for about a month now I'm also having some kind of rectal spasms along with the bladder and perinial pain.
    My heart breaks to know there are so many of you with I.C. and still in mod. to severe pain. What's up with the Drs. I know they need to be treating the pain better.
    The last thing I was offered was flomax ( for men ) anyone ever tried this one and had relief of pain and frequency. Please let me know . I won't have another cysto-with hydrodilation soon, because I only had 6 weeks of relief. And I bled about 200cc every 90 min. the next 20 hours following the procedure. I was so weak I should have gone to the E.R./
    Hugs for everyone .
    Lizzie_71

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  • babygirl1071
    replied
    I think I might give that a try. Today I'm feeling quite a bit better. I don't know if it's the cortizone shot I got in my foot for an injury or if I've turned a corner. So, I guess I'll see if I continue to feel better.

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  • ICNDonna
    replied
    Babygirl, you might want to stop the cranberry for a week or two to see if that helps.

    Donna

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  • Melanie526
    replied
    I just had a cystoscopy with hydrodistension last week...I can't believe how much my pain has eased up since then (I still hurt, but the pain is much better)...I say try it!

    Also...I use a TENS unit every night...it helps a lot too!

    Leave a comment:


  • mary124
    replied
    I have hydros done about every 6-8 months. They usually work for me. Last one that I had was back in March.

    Leave a comment:


  • babygirl1071
    replied
    I do Nature's Bounty. I've been taking it for years. None of my docs have said anything about it in a negative way.

    Leave a comment:


  • ICNDonna
    replied
    What kind of cranberry are you taking --- cranberries can be a huge problem for an IC bladder if the acid hasn't been removed.

    Donna

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  • babygirl1071
    replied
    I quit drinking coffee, tea other than chamomile, alcohol, caffinated drinks, fruit juices, watch the citric acid and no chocolate. Food doesn't seem to bother me, I just flare on and off for some reason. As far as meds go, I am on oxybutinin, hydroxyzine, amitriptiline, aloe vera, cystaprotek, cranberry, and just started colostrum a little over a week ago. I am thinking of going to see a doctor where I live that specializes in female problems and see if he can help me. He does things with a holistic approach. Otherwise, I will see what my family doc has to say.

    Leave a comment:


  • ICNDonna
    replied
    babygirl, are you following an IC diet? On any medications for your IC? There are many other options you can try.

    Sending encouraging hugs,
    Donna

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  • babygirl1071
    replied
    I had one done April 19th and felt good until the first part of this month. Now I am having some burning and discomfort again. I saw my family doc this past week for my yearly checkup and mentioned this to him. He said I should either do DMSO or another hydro. I really can't afford to do either right now since I am working and can't take a day off. I also don't can't afford to spend thousands of dollars for a month of relief. Is there anything else I can try?

    Leave a comment:


  • ICNDonna
    replied
    If it helped before, it could help again. I just had one done on May 16 and it seems to be working well for me again.


    Donna

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  • wizbe
    started a topic Cystoscopy - Hydrodistention again

    Cystoscopy - Hydrodistention again

    well... I went to the specialist yesterday. I have been flaring off and on pretty bad since April. Tried some things - works for awhile, then bad flare and I am following the diet.

    I sort of expected my uro to say "here's another medication, try that"... however, he suggested that we do another cystoscopy/hydrodistension. I had one done in October - I found it to be very helpful until about a month and a half ago. He said we could wait for three months if I wanted. I wanted to wait until it got worse and he concluded that might not be a good idea... why suffer pain you do not have to suffer?

    What do you think? I am scheduled for July right now.

    Any advice... this is my third cystoscopy/hydrodistension in 18 months.

    Thanks
    Wizbe
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