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Anyone diagnosed with IC? Anyone diagnosed with IC?

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Unread 02-02-2010, 09:03 PM
Anyone diagnosed with IC?

I went to the gyno today, and have been told I most likely have IC, the bladder problem. Anyone else had this diagnosed after a hysto? Also, she told me that my stitches at my cuff are still there, and I can go ahead with the deed. AAAAHHHH. I hurt so bad in my belly, I don't even like the idea at all.

I have read that with IC that you can have the stomache bloat. I am also going to have a referral to see a gastro doctor. I have to go back to the gyno on the 25th to do some kind of test to make sure that I have IC. Anyone else with this problem? All I know is that I am in a lot of pain
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Unread 02-02-2010, 09:55 PM
Re: Anyone diagnosed with IC?

I was diagnosed with IC maybe 6 mos ago. I started teatment and meds right away. What worked with me were "instillations"...they put a tiny catheter in, drain the bladder and then fill it with a cocktail of stuff that makes it feel better. I did 10 in all and along with the meds and figuring out what foods triggered bad pain, have dealt with it. I though after my Hyst it would get worse, but I feel okay so far.I found a lot of info online and realized diet was a big factor....but it's insane for anyone to think they can give up every single thing that might bug you. I find caffeine and carbonation are my biggest triggers. Look it up online--there are aLOT of helpful sites out there. And you can find relief...I promise. Get some info, talk to your doctors and come up with a plan that works for you. I'm pleased that I actually don't have to take the IC meds at this point because I got it under control w/ the dr visits and diet!
Wishing you well--and don't let this stop your post op recovery!
Unread 02-03-2010, 07:42 AM
Re: Anyone diagnosed with IC?

Thanks for the input! My gyn is going to be doing a test on me on the 25th to make sure that this is what I have. I have noticed that the urethra(sp) is very painful also when I urinate. I had to basically push out the urine this morning. Very painful!!!! I have seen some of the diets that you can do, you are right, I cant cut all of the food out!!!!!!

Does it hurt when they do the cocktail thing in your bladder? Anything to make it feel better. I have a script for vesacare(sp) to help with the spasms. I need to get that filled today. I swear, if it isnt one thing, it is another!!!!!!
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Unread 02-04-2010, 12:04 PM
Re: Anyone diagnosed with IC?

For me, the instillations didn't hurt but were uncomfortable. The first one was probably the worst as I didn't quite understand what was happening but then I got used to the procedure and actually looked forward to the relief they brought after. I have found if I have an IC flare I need to look at my caffeine intake--including chocolate
Soda or anything bubbly bothers me soon after I ingest it. Also, my DR lets IC patients call for instillation appts anytime they are having a flare and in pain, so that helps too. He put me on Elmiron and Elavil though I stopped the Elavil a while ago because it was making me nutty (a mild anti-depressant). I took the Elmiron up til my surgery date and havent since as I feel pretty good and am taking pain meds still. Oh--an ice pack helps discomfort as well!
Hope you get some answers soon and are able to be pain free!
Unread 02-04-2010, 02:58 PM
Re: Anyone diagnosed with IC?

Forgive my ignorance, but what is IC? I've been having bladder problems and am on antibiotics for UTI.
Unread 02-04-2010, 03:33 PM
Re: Anyone diagnosed with IC?

IC is an abrreviation for interstitial cystitis, which is a bladder issue. It's often seen in women w/ endo and usually goes undiagnosed for a long while. (According to what I've read). In my case I suffered from bladder probs, uti after uti, kidney infections on top of the severe endo. From what I understand some women develop IC after a hysterectomy or bladder issues become more troublesome.
Unread 02-04-2010, 09:05 PM
Re: Anyone diagnosed with IC?

Thanks for the info. What are the signs/symptoms of IC?
Unread 02-04-2010, 09:37 PM
Re: Anyone diagnosed with IC?

I am interested too.
Unread 02-04-2010, 10:15 PM
Re: Anyone diagnosed with IC?

me too
Unread 02-04-2010, 11:32 PM
Re: Anyone diagnosed with IC?

I actually probably had symptoms for a very long time---diagnosed with UTI's over and over even when nothing really grew on the specimen, pain in lower left side (bladder), needing to pee alot, pain with intercourse. You can see how I just attributed all these symptoms to my already diagnosed stage 4 endo! What finally got their attention was when I woke up in the middle of the night in excruciating lower left pain...I mean I thought an ovary was rupturing or something. After an unltrasound and it didn't show anything my regular GYN referred me to another GYN who specialized in IC. He gave me this page of questions and my "score" indicated I probably had IC. He then did the first instillation, had me call the next day to tell him how I was feeling. Sonce I felt a little bit of a difference he had me come in 2-3 times a week for a month. When that all but took the pain away, he knew for sure I had IC.

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