More Pain

[sabstory ICN Member Find all posts View Profile Close sabstory]

I have only been treated for IC for about 5 months. I am so frustrated right now, because I was beginning to feel a bit better until today, and it is horrible, unending pain again.
I am taking Emiron 200 mgs twice a day, Elavil 75mgs at bedtime, zoloft, prelief, and phenergan (because of nausea from elmiron), I have seen the uro for instills for about 2 1/2 months, a couple of weeks we did 2 instills, and he just moved me back down to 1 per week last week. Tonight I took Lortab for the pain, and it barely helps at all, I have no idea what to do. I have my heating pad on, and it still just throbs.
Does anyone have any ideas, what should I ask for when I talk to the doc? I hate that IC is so unheard of, nobody at my work really understands what is going on, I try to explain why I need so many breaks, and my boss just looks at me like I am insane. Sorry, I think this turned into a rant, I just want some advice on treating the pain. I thought I was getting better, but I still haven't had a pain-free day in well over 6 months.

[turnaround ICN Member Find all posts View Profile Close turnaround]

Flares are depressing and scary for sure. When I have a very bad flare, my uro gives me as many as 3 rescue instills in a week. They always seem to help. I also take long hot baths, take baking soda 3 x a day and really follow the diet more closely. Hope you feel better soon.

[Linda May ICN Member Find all posts View Profile Close Linda May]

Follow the IC diet completely and yes ask the URO about more instills.

Are you on DMSO instills or Rescue treatments? there is a difference.

Find out as much as you can on treatments for IC either on this forum or on the net.

You need to write down everything you want to ask your URO before seeing him.

Has he suggested AZO? that helps calm the bladder.

With you getting sick with the elmiron maybe it is not doing you any good.

[ICNDonna ICN Staff Find all posts View Profile Close ICNDonna]

It may be that you need instillations more frequently. You might talk with your doctor about learning to do them at home. Lots of ICers self instill daily or even twice a day.

I hope you feel better soon.

Warm hugs,
Donna

[sabstory ICN Member Find all posts View Profile Close sabstory]

I am doing rescue instills with the elmiron in them. My doc said that none of his patients do at home instills, but I didn't really ask if he thought they were a good idea. I am going back to see him on Fri, but the interim has me a bit concerned.
I can't bend over at all, even the seat belt is agony, leaning forward feels like a bomb exploding.
All I wear is yoga pants, I can't stand jeans, or even dress pants. I have a bit of Lortab left, but it really doesn't help much. I get sleepy eventually, so it must help some because I struggle to sleep without it (when it hurts like this, not when I am doing better).