Hi, IC can come on quickly and does not follow a UTI. The IC Network has great help www.ic-network.com. Diet is a huge role in managing IC, such as cutting out coffee, citrus, caffeine, chocolate and other drinks/foods that can irritate an already irritated bladder like yours. Alot of people find Elmiron helpful but it takes a while to work. There is also Elavil a low dose tricyclic antidepressant that takes away pain if you have alot of pain and drugs like ditropan xl which relax the bladder and cut down on frequency/urgency/some discomfort and pain. I think a combination of these drugs usually gives people quite a bit of relief and also following the IC diet which you'll find at that website too. I don't think I have IC but probably overactive bladder and the ditropan xl has helped alot! I don't see a urogynecologist though for a couple of months.
If your urologist is convinced, I would proceed with self-treatment. They see a lot of bladders in their work, and are able to recognize IC in it's early stages.
And that is the good news for you- the earlier you start treating it the better.
I know when I was first diagnosed I initially scoffed at all the diet recommendations. I mean, what CAN you eat or drink?!!! However, after Elmiron, bladder installations, etc. with nothing really helping I was desperate. so I tried cutting out caffeine, citric acid in ANY form, and potassium, mostly from salt. This really helped me for quite a while. Unfortunately, I was diagnosed in my 40's, and have probably had IC all my life. The damage was pretty bad at diagnosis, and even with diet I'm pretty miserable now, 4 yrs. later.
I truly believe that had I known about IC earlier I could have prevented some of the damage. My personal belief is that my urine is toxic to my bladder, the pain tells me this. If I eat or drink something with citric acid, for instance, the pain is almost immediate. Carbonated beverages are another serious pain, pardon the pun.
I hope this has helped.
You don't have to have had a UTI to get interstitial cystitis. I have it and I never had a UTI. My doctor put me on Elmiron. It helped with my pain but it caused me to feel like I was freezing down to the bone. I found out that's because it also has a mild blood thinning effect. My doctor told me to not take much vitamin C or eat acidic foods and drink because it would cause my urine to be to acidic and feel like I was peeing acid.