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10/25/2010 05:40 AM

instillations

helpgertiehelp
helpgertiehelpPosts: 8
New Member

how do instillations work for some of you? how many do you need? how often? what does your doctor tell you is next? what about hydrodistention? interstim? thanks, helpgertiehelp (HGH) (gretchen)
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10/25/2010 09:08 AM
blondee8257
blondee8257  
Posts: 1140
Group Leader
I'm an Advocate

i have never had but the one instill and that was during the testing for ic...some of the other ladies im sure will be along shortly that has had more experience.

10/25/2010 11:18 AM
AutumnSunset
AutumnSunset  
Posts: 1262
Senior Member

Hi Gretchen! Welcome to the group!

I was diagnosed with ic a little over a year ago. I received my first instillation when I received the KCl test, to help determine if I had ic. My GYN sent me to a Nurse Practitioner in his office who specializes in the treatment of ic. In the beginning I received 2-3 treatments each week for about a month. (I can't remember exactly how many for how long.)

As my bladder improved, my instillations decreased. I believe that I started my instillations in September/October 2009. In February 2010, I began receiving instillations only when I need them. Since February, I believe I've only had 2 instillations. I have to go again this week; that would be my 3rd. (Stress and/or certain foods are my main triggers for my ic flares. My son got married a week ago, and I was the wedding coordinator behind-the-scenes. Yes, it was stressful, but I enjoyed being a part of the planning and ceremony - even though I'm now paying for it!) Wink

Because the instillations worked for me, no further treatments were discussed. I was also placed on Clariton daily. I would like to point out one more thing. Sometimes my pain and symptoms are worse the day of and/or the day after an instillation, then I begin improving.

Post edited by: AutumnSunset, at: 10/25/2010 11:23 AM


10/25/2010 12:33 PM
shamarie6
shamarie6  
Posts: 2805
VIP Member
I'm an Advocate

Hi, Gretchen! I haven't had any instillations, but I've also not seen my uro in almost 9 months. I have moved & more than likely will go back to my original uro. Not sure what he'll want to do for me. I've been doing pretty well up until about a week ago. Begenning to flair again, I'm afraid. Hope you find some answers soon!

10/25/2010 02:45 PM
helpgertiehelp
helpgertiehelpPosts: 8
New Member

thanks, everybody (am i talking to EVERYBODY in this discussion now?) and thanks for the input!!! now i need to digest it all and see where it puts me! think i need another urologist/second opinion. though i like this guy a lot, i don't think i agree with the infrequency of instills????

10/25/2010 02:47 PM
helpgertiehelp
helpgertiehelpPosts: 8
New Member

in case i wasn't talking to all of you with my other quick reply, i'll repeat myself a little here. mainly wanted to say thanks to all for sending input. i need to go over it all and think about some of it. also think i need to see another urologist or gyno=uro. like the guy i'm seeing but don't quite agree with the infrequency of instills. also want to think about some of the other stuff. anyone had hydrodistention? gretchenSilly

10/25/2010 04:45 PM
tracy6878
tracy6878  
Posts: 575
VIP Member

gretchei ust had my rodistention and i would recomend you try it at least once to see if it helps you...my first didnt do much, the second one had a delayed kick in but did seem to offer some relief and the 3rd was 2 weeks ago and im not seeing any good signs yet, but it did take the 2nd time to work too...

i cannot do installations at all due to an allergic reaction to a base substance...how long have you been getting them? you need to stand up for yourself if they arent working and demand a new direction for your treatment...dont let your dr run all over you, they tend to try sometimes...be your own advocate! im so glad you joined us! welcome!!!<3


10/25/2010 07:01 PM
AutumnSunset
AutumnSunset  
Posts: 1262
Senior Member

I agree with Tracy, if a treatment is not working, you need to try something else. And what works for one person may not work for another. Or, a combination of treatments may work best for you. It is all trial and error to find what works for you. It is important to find a doctor that is willing to work toward what is best for you - some doctors get "stuck in a rut" with a treatment, and it is just too bad if it doesn't work for you.

The first urologist that I went to was a DUD!!! I was in severe pain, and he just couldn't understand why I "thought" it was my bladder that was hurting! During the 2 months that I went to him, he never once mentioned the possibility of me having ic. I think he was irritated because the treatments/meds he was prescribing were doing nothing for me. I even had a cystoscope, and he said my bladder looked fine - as if there shouldn't be any pain/problems since it looked "fine." (I really do try not to share my frustration with this doctor, but it just "slips" out sometimes.) Whistling Wink Whistling

I discussed my problem with my GYN, who sent me to a Nurse Practitioner in his office. She is fantastic!! I'm thankful that I kept searching for the "right" doctor, because if I had stuck with the urologist, I would probably still be in severe pain! Sick

Oh, I did want to point out, when I first started the instillations - I did not get immediate relief. It took about 2-3 weeks before I started seeing very much improvement.

Good luck in your quest to find the right doctor and the right treatment.

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