Not dx yet, see Uro tomorrow 1st time

[Allies40]

Hi Everyone!
I've been coming to this forum for a few days now, it helps to read all of the posts although I'm confused about the lingo everyone is using. I've been going to my General Dr for 3 months now complaining of UTIs. He gave me 2 rounds of Antibiotics although no infection was showing up. He said that I probably have IC and should see a Urologist. After checking out the ICN website, I started the IC Diet immediately. For 2 days I felt a lot better, less pain, less frequency. However last night I started with the pain again and this morning I have pain and frequency issues. I've been taking prelief with my meals too.
I see the Urologist for the 1st time tomorrow. What should I expect? Can I ask to be put on some of the medications immediately? I'm assuming he'll schedule a cyctoscopy in the next few weeks to confirm the dx but I'd like to get started on a tx plan.
Can I use regular advil or tylenol to help with pain or will it make it worse? I also have some tylenol with codeine but I'm afraid it may make things worse.
Thanks in advance for all your advice!

[Roxie2007]

HI! I hope you don't have IC just because it's SO much to deal with. IF you do.....I'd definitly have a plan of action after diagnosis. Lots of us take Elmiron (it takes a while for it to work but if it works for you...it's great stuff!) Elavil for spasms and frequency (both are prescriptions). Things that you can try that aren't prescriptions, that I use are: Freeze dried AloeVera (you can buy though this site), and Azo (Azo you can get at most
pharmacies) and it's a quick fix for bladder pain as it's an anesthesia for the bladder.
Advil (any Ibuprofen product) is bad for IC. I can take Tylenol once in a while for pain but not every day or it will cause bladder pain for me.
Do you take any vitamins or supplements? Some of those can cause bladder pain. I can't take regular calcuim (I have to use the chewable type) or I get spasms. I can't take Vit. C. either.
Adhereing to the IC diet is one of the best things you can do....figure out what causes flares and what doesn't. Some things if you eat it 2 days in a row will cause flares for me.....where as if I only eat it one day won't cause any problems.....it's Crazy!!! Anyway.....There's other meds out there, see what your dr. says. Hopefully he's an IC dr. and knows what to try. Good luck!! Roxie

[Allies40]

I'm not taking any vitamins right now, I just got off of taking Cipro(which did nothing to make me feel better) and I stopped all the trigger foods. I have to take Iron Supplements because I have anemia, I don't think they are bothering me, they are a prescription one called Repliva. I'm only drinking water now, I'm going through caffeine withdrawel. I never drank much coffee to begin with, only decaf, but then I would have a diet coke for lunch. Now I'm only drinking water. Since I only started having really bad pain this week, I'm new to the diet and will have to see what works and doesn't work. I'm eating a lot of turkey sandwiches right now. Really, I'm not very hungry, being in pain kind of takes away my appetite. I'm trying to make sure I'm drinking a lot of water because I do think it helps with the pain, even though I'm running to the bathroom all the time.
My husband is not on board with this IC dx. He's out of town right now and wants to see what the Urologist says tomorrow before he's convinced I have IC. After the appointment I plan on buying some of the books at the IC shop to learn more about IC.
Thanks so much!

[lan]

Hi Allies40 - I was also treated for a UTI for about 2 months (even though I had no bacterial growth in cultures) before my uro started suspecting IC. Some of the antibiotics that he tried made me feel worse - specifically levaquin and cipro. When he started suspecting IC he had me schedule an appointment with an IC specialist in Philadephia and he prescribed Elavil. The Elavil has really dulled my discomfort and has helped with frequency. The IC specialist confirmed that I had IC and increased the dosage of Elavil. He did not recommend Elmiron for me (he said something about it taking a long time to become effective and only helping 30% or so of the people - I don't remember the exact percentage). It sounds like Elmiron has helped some of the people on these boards so I am sure it is worth asking your doctor about. Since you also live in the Philadelphia area, feel free to send me a private message if you have any questions. Sending you healing energy and wishing you well...linda.