Just had a cysto with hydro and diagnosed today.

[versefaerie]

Well. Got up at 5am this morning...did all the pre-op stuff...
went in for a cystoscopy with hydrodistention (under IV sedation) at 7am..

I hear my husband was in the waiting room, and my Urogyn came out and said
"she's ok!"..my husband replied "You mean, she doesn't have IC?"
and the Dr. said "Oh no...She DEFINITELY has Interstitial Cystitis...but I mean, she's ok in the recovery room".
(at this point she pulled out pictures, pointed out a couple glomerulations, etc).

My husband is just glad I don't have something cancerous or scarier than IC
(I've made him read up a little on IC when I thought that was what I might have).
And my primary doc can never, EVER tell me again that I have "medical-school-itis" !!!:loco:

I, myself, am RELIEVED to know what I actually have. I'm sad that this is a chronic disorder at the age of 25, but I feel like I was a whole lot more sad months ago when the symptoms started. I feel like now, since I'm already doing the diet strictly, and taking a lot of meds for the symptoms (cystoprotek, aloe vera, amitriptyline, and ditropan), I can move on, and try to manage this (expecting good times, and bad times).

My follow up is monday, and I am really interested in starting Elmiron and possibly hydroxyzine since 1. I do have an established problem with my bladder wall and 2. I am notorious for medication allergies and horrendous seasonal allergies. I hope my UROGYN recommends these to me. I will ask, though.

Is there anything else I am forgetting to talk about at the follow up?
How long does the dysuria and "burny feeling" and abdominal cramping last after a cysto with hydro?:toilet:
Thanks a bunch!! This board is a lifesaver.:)

[Goldfinch]

I'm sorry you have IC but I'm glad you have a handle on the various aspects of treatment and a positive attitude; both go a long way toward helping eliminate your symptoms and feeling good again.

I suggest reading up on all treatments here, as you clearly have started to do. Elmiron and Atarax (Hydroxyzine) are often prescribed in tandem, and it sounds like taking an antihsitamine might be a good approach for you if you have allergies. My uro likes pairing them.

Adding these two meds to what you are already taking is a lot of meds, and it might be hard to figure out what's really working for you and what isn't if you are on so many at the same time. Do you have the sense that the Elavil (amytript) is helping? Are you unsure whether any of them are doing you good? I find that starting with only one or two meds at a time is helpful in determining a long-term treatment plan.

Oh, about post-op. Being cathed can increase your chances of getting a UTI, so you might watch out for that if you were not given a prophylactic antibiotic after the procedure.

[vm]

Glad everything went well and that you have a name for all you've been experiencing. Hope this gives a good direction to your treatment and that you are feeling better soon. :)

[Briza]

Is there anything else I am forgetting to talk about at the follow up?


I would ask for a copy of the post op report, biopsy (if taken) report and a copy of the bladder photos...I have found it to be good and helpful (esp when seeing other drs) to have a copy of all those reports and the photos myself. Just asking for copies of the post procedure results, my drs have never charged $.:)
I hope you have a fast and uneventful recovery!

[Mrs. Peel]

Welcome to the sisterhood, then. I'm glad you're here. I'm also fairly new.

Your attitude sounds great, but don't be caught off guard if you find yourself doing the stages of grief. Sounds like it was caught early, which is good.

From what I've read here, the burning lasts a couple of days, and then your bladder feels better than before the test. Taking azo for those two burny days is a good idea (but wear panty liners). That's how it was for me, but the improvement was moderate.

I'm on Elmiron 100 three times a day. I've been setting my cell phone to remind me, because you have to have an empty stomach for an hour after taking it, and it seems important to take it two to three hours after you eat.

So much for my grazing days.

I must be in a bad mood. I'm usually more fun. Sorry. Hope you heal up quickly and find your flares so you can get back to being a swingin' chick.

[SharonA]

I find, for myself, knowing is always better than not knowing. I hope the post procedure symptoms subside quickly and you feel better very soon. (((hugs)))

[MommaWuzzi]

There is a relief in knowing, and you have a great attitude! Hope you continue to keep moving forward in controlling this! :)