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Hydrodistention- Neg or Postitive Results

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  • shelbyriva
    replied
    I had the best result from it. Have had it 4 times. I now have a different procedure with it. My urologist laser's off all the sores in my bladder and LOVED the result with that....7 months pain free and waking up once during the night.

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  • burlydurda
    replied
    So very painful

    I guess it was positive in the fact that I was diagnosed with severe IC and Hunner's. For so long I thought I was just crazy....To find out my entire bladder was covered in granulations, and razor blade like cuts. But so very bad in the fact that my doctor did it with out any medication, or sedation was horrible. I didn't know until later that most doctors give something. I was in so much pain for weeks after...I can't wait until there is some kind of other test so others don't have to experience the same pain.

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  • Tura
    replied
    Hydro

    Ill never have a cysto/hydro done again 21 days later im still having bad symptoms. Pain and going to the bathroom every 15 minutes or more. Doc put me on antis for it friday cause i thought it had caused a bladder infection cause i was in so much pain and worse urgency and my urine sample was not a clean catch wen taken on last tuesday. 3 days of keflex and if im still in alot of pain go in thursday and nurse will cath my urine to test it again. Now im thinking maybe this is just a really bad flare. I get into ic flares much easier now too. Before the Hydro i could sometimes go a full hour. Never again!! My records from my previous doc showed i had ic i wish my currrent specialist would have believed those and at least not done the hydro. He is convinced now that i have bad ic.

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  • earthlady
    replied
    The new guidelines state that IC/PBS can be diagnosed on symptoms alone after excluding other causes. I guess it depends on whatever your uro is comfortable with making the diagnosis. I went in just for the cysto to rule out bladder stones or cancer etc., but since I asked for sedation which worked really well on me he went ahead and did a minor distention. I was fine afterward, but don't think I will have another.

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  • Engtch29
    replied
    Cysto and Biopsy

    Ladies and Gentlemen:

    I'm afraid to go ahead with the hydro. Can my doctor diagnose IC via biopsy? Mast cells/inflammation???

    Lost with this one.

    Thanks!!!

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  • Tura
    replied
    Mines worse after

    Well my IC is worse after thsi Hydrodistention/cystoscopy. Thought about going in to hAVE URINE CHECKED FOR BLADDER INFECTION BUT DECIDED NOT TO. HAD IT 9 DAYS AGO

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  • Becky Jane
    replied
    It was very positive for me. I had a diagnosis and the hyrdro put me into remission for several years

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  • Tura
    replied
    Negative

    Hydro cystoscopy or both well i thought it helped cause this morning after yesterdays surgery i got up at 9 peed took anti with 8oz of water and was able to sleep 3-1/2 hours after wich im never able to do after drinking that much water. Later in day constant urgency and frequency peeing every 10 minutes. Now i find redness on face and read rotator cuff can be injured from cipro. I already have rotator cuff tendinitis. Called doc on call he said stop peryudium and pain meds cause that too can cause facial redness and take another ciproi and if its worse tomorrow stop the cipro.
    Good think even though i had had it in 1997 by another doc this convinced this doc it was correct and its real badand he thinks i may have something else going on with the bladder as well.

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  • MizRee
    replied
    Its good your new urogyn is going to take a look for themselves. My doctor now believed I had IC but said its better for to see for sure and and see how the IC is affecting the bladder for himself. Instills are good but not a cure. I have noticed relief only for 24-36 hours after them so I recieve them on Mon, Wed, and Fri and will soon learn how to do them at home because its difficult constantly driving downtown and waiting and so on.

    Overall I say a hydro is a great way to see where your at and make sure there arent any ulcers, polyps, and so on plus having a picture of your bladder is kind of neat.

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  • Nuthatch
    replied
    Hi!
    Wow! Just saw this on the hydro forum and have been reading the replies! IC is such an individually flaky disease!

    I've only had one hydro and that diagnosed IC and I carried the photo out of the hospital. The diagnosing urogyn was too surly and I switched to a urologist who specializes in IC and have been taking a plethora of meds ever since early Dec 2009.

    My experience of the one hydro so far was positive and all the medical personnel were very kind and patient with me. I am a survivor of childhood sexual abuse and do have panic attacks when dealing with medical stuff in this area of my body. The post-op nurse was particularly wonderful and told me very explicitly what to expect and what would warrant a call to the doc in the weeks following the procedure.

    Since the procedure I've been on meds for IC and have been attentive to diet and I have learned some more Mindfulness-Based Stress Reduction techniques for dealing with pain. All of this has been helpful and I've stayed pretty calm and cool. I've finished 3 instillations in the office and will have 3 more beginning this next week.

    I was informed at my last instill that the urologist wants to do another hydro because the urogyn did not do biopsies and he wants to see the bladder himself and make sure we're on the right track. I was a little ticked that the urogyn did not do the biopsy thing when she was there. Obviously they have to rule out cancer and since both my parents have serious urological issues--including bladder cancer--DAAAA!-the urologist is major-league concerned!

    I can't have the next hydro until April 23 so who knows what we'll do in the meantime. My symptoms, particularly pain are much worse in the last week--snow shoveling through two blizzards has not helped--but I will see the urologist this week.

    Sorry this is so long! You asked a simple question and you got much more information than you could've ever wanted!

    Thanks for this thread! It is very helpful!
    Nuthatch

    Leave a comment:


  • MizRee
    replied
    I had my first Hydro in Dec 07 along with cystoscopy Dec 07. I did make me feel better for about 6 months then I had a flare up. Well Dec 09 I had another Hydro along with pudendal nerve block and laproscopy (to diagnose Endometriosis) and it made me so worse. My bladder started retaining and I had to stay in the hospital for 2 days then was discharged with a Foley for another 4 days. After talking to my doctor afterwards he said that Im someone who should never have one again, my bladder is so bad right now all a hydro will do is make it worse. Usually it does calm down the bladder and is another way to diagnose IC. If you havent had one before and the doctor wants to see your bladder its a great way of doing that. I know have update photos of my bladder (and entire pelvis) to keep on record for future use. So im 50/50...first time worked second time didnt.

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  • dnursek
    replied
    newly diagnosed

    I go bac to my urologist next week and he wants to talk about doing a hydro... any info to help prepare???? very nervous....

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  • JaniceB
    replied
    Hydro

    My Hydro was in March 2008.

    I did use amitriptilyne for about 6 months, but I had to stop because it would give me heart palipatations.

    Fortunatly by then, I had also been on Elmiron for 6 months, which apparently was enough time for it to start to work, because after stopping the amitriptilyne, I didn't need additional pain medication.

    I still have symptoms, some days worse than others. Mainly, my symptom is frequency and pressure. Thats been my main complaint all along, though before I was diagnosed, the pain would get bad to, sometimes direct bladder pain and/or just an all-over "ill" feeling. Now, I have alot of very good days when the frequency isn't bad at all, and I haven't had any bladder pain to speak of for some time now, probably 2 years or so (except for immediatly after the hydro of course).

    But like I said, after 6 mos on the Elmiron, I was lucky enough to see enough improvement on it that things did not go downhill once I had to stop the amitriptilyne.

    I did notice alot of improvement, about 3-4 months after the hydro. Whether it was the hydro, elmiron, or the combination, I'm not sure. But I definetly have many more good days than bad now.

    Janice

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  • Snowden1
    replied
    Janice,
    Do you have any symptoms now? How long ago did you have your hydro. I also noticed you were in the amitriptyline study, but don't have it listed as one of your treatments. Is this because it didn't work for you or that the Elmiron has worked so well?

    Leave a comment:


  • JaniceB
    replied
    Hydro

    I think mine helped. Now I'm talking about my actual hydrodistention done under anthesia and with pain medication afterwards. My cystoscopy that I had done by a uro that apparently didn't believe in IC, was hell. that was done in-office, no pain medication, fully awake. It only made things worse!

    I had alot of pain when I woke up after the hydro to, and that first couple of days. But I think overall, it did help.

    I think Elmiron has helped the most though. I might consider another hydro if my symptoms got to be unmangeable again.

    But for now I'm sticking with staying on Elmiron.

    Leave a comment:

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