A long time ago I saw a thread on here about IC, I'm sure it's long gone so I thought I would start a new one in the hopes of finding support and some help.
I was diagnosed in 1990 - at the time many docs said it was a UTI until a specialist did a cystioscop (sp??) and found out then when I was under general anastesia I was still releasing. I was given DMSO injections about every 4 months and the prescription elavil to make me sleepy at night.
In 1996 I moved to a new state - never found another urologist - and realized the elavil was addicting - if I didn't have it I would flip out, so I stopped taking it.
So basically from 1996 thru 2007 I never had any treatment for my IC. I just sort of accepted the fact that I pee all the time and never sleep. I must get up 6x a night - maybe less -- each time I just get a tsp out. The worst time is when I'm preparing for sleep, brushing teeth, checking in on the kids, etc. Sometimes I go every 3-4 minutes --- just in that short time while I'm getting ready for bed. During the day it's not as bad -- even though it's "there"...I was told you are more quiet at night and that is why I feel it more.
Whew - I know this is getting long - bare with me. Late last summer - I was going all the time -- and when I wasn't going - I was in pain. I saw 3 urologists in one week - none of them were really much help. One said he did not think I had IC, rather he thought I had something else -- that is usually found in men. I was so frustrated. Then one night I could not get off the toilet, I thought I'd have to sleep in there with a pillow - just tiny squirts were coming every 10 seconds and I just had that IC pain - I had my husband take me to the ER....they were really of no help. They did not call the urologist "on call" - they gave me a shot in my butt for pain - and gave me prescription pain meds to "sleep it off", I was in bed for about 3 days, and finally felt better.
These days it still bugs me - that pain is always there - sometimes worse than others, but I have been eating things I shouldn't - like caffine. I am prepared to give that up 100%. Long story short -- where do I go from here. I want to start seeing a urologist on a regular basis. What questions do I ask?
What meds should I be on? Nobody has talked to me about Elmiron, and I haven't had a DMSO injection in over a decade....will those things help?
We are taking our first family vacation in a couple of months and I would flip out if I was in a lot of pain during that vacation. On a daily basis - I muddle thru -- I take my kids everywhere - swimming pools, parks - play dates- etc, I go shopping and do normal activities -- the pain is not always bad -- but when it is -- I get so depressed about it. That is why I know I need to stop drinking COKE. (yes coke)...and soda - I love soda...and I love chocolate.
Now what? I know this is a very long post --- I'm very sorry -- I'm just trying to find some other IC patients who are more responsible - and might have some great advice on what to do from here on out?
Thanks!
ETA: I guess I should also mention I never feel like I've truly emptied my bladder.