Relief from urgency/frequency finally!

[liz25]

I am in a research study on urgency/frequency and have had a "bion" implanted inside of me.(I have spoke of this in my other posts) The bion sends stimulus to the nerves that control my bladder, similar to the interstim excect it is only about 2in long probably not even an inch around. I got it implanted Oct. 1 and got the stimulus turned on in Nov. and I have noticed a huge change!!! :woohoo: I can actually sleep through the night most of the time and it has helped with my pain too.(pain is my worst IC symptom) Hopefully, this will end up being FDA approved so everyone wit IC can get relief! :)

[ICNDonna]

:dance:

That's great.

Donna

[ICLori]

Liz, I'm so happy for you! I'm still being a coward about the surgery for implanting it, I'm dreading it and looking forward to it at the same time (I want the relief but am scared of how bad it will hurt when they implant it while I'm not knocked out).

Did it take you THIS long to start noticing some relief, or did you start getting relief for the frequency/urgency fairly soon after it was turned on, but didn't get pain relief until just now? Or....?? I was under the impression it was supposed to start working pretty much as soon as they turned it on, then you get better results the longer it's turned on and working, so that by month 6 you are in better shape than month 1 if that makes any sense.

I still don't know when they will implant me, the latest word is maybe by the end of February, or by mid-March at the latest. I hope they haven't secretly decided that they don't want me in the study and are blowing me off! That wouldn't happen, would it? Wouldn't they have to tell me up-front if they were dropping me from the study?

I know, I worry about everything.

Anyway, I'm so glad it's working for you, and I hope it will work for me too (my worst symptoms are urgency/frequency/continual full-bladder feeeling) and then if it works for us I hope it will work on many, many, many IC patients in the future and will keep working.

Blessings, and thank you so much for sharing this, it makes me so much more hopeful,

Lori

[vm]

Awesome to hear!!!!! :woohoo:

[liz25]

Lori,

I was in the group that didn't get stimulation first. After the implant you are either in the group that gets their bion turned on but, set to zero, or turned on with the stimulation. They don't tell you which group you are in because it's research, so you are either turned on 1st and then after like 45 days you get it turned off to zero and the other group gets turned on. (It explains it better in the paper work you signed with your consent) I got mine implanted Oct. 1 and turned on with stim. Nov.30. I know you can do this Lori, I know it. :kissing: Don't worry about the surgery, like I said they give you stuff in your IV that pits you in like a twilight sleep. When they need your input on where you feel everything they just call your name acouple times and you "wake up". They don't "wake you until the whole surgery is almost done. :) I really am optimistic that this could give you some relief from either one or all of your symptoms! I will be here to give moral support when ever you need me!

[ICLori]

P.S. How long did you wait, between when you had the trial, and when your surgery was? Just curious.

Blessings, Lori