The pain IS awful.
Let's put it this way. I lived through ulcerative colitis at the same time I developed IC. Hands down, if I were told that I had to choose to have one of them, even though ulcerative colitis can have much more dire and truly life threatening outcomes longterm, I would choose UC. The constant pain of IC was beyond the pale for me, not to mention the pain of feeling some 40 times a day that I HAD to void with much of the time there being nothing to void, or a tiny tinkle accompanied by pain I can't even really describe.
For me, very quickly, the IC pain was ever present. Let me be clear: it was never not there. For me, it was gripping, sort of nerve-like pain centered in my bladder area which also frequently caused constant aching pain that radiated into my legs.
What helped? Prior to the IC developing is when I had laid on all my weight over a period of about 3 years. I had also begun to have constant vaginal yeast infections which were very difficult to clear up and would recur within a month.(I was peri-menopausal, in my early and mid-forties at the time.)
Cutting to the chase, I went on a VLC diet. Within less than 6 months or so, this stopped all the vag yeast infections. I went through a long waxing and waning period with the UC, which went into complete remission inside of 3 years, and got much better year by year within this period.The IC also waxed and waned. It was not until I got very serious about a specific IC diet that the IC went into remission. That diet axed what seem now, per some research, to be the BIG offenders for many: coffee, all caffeinated beverages, teas, spicy foods, tomatoes, anything CARBONATED including stuff like "good" carbonated waters, and any alcohol whatsoever. Any choco late and nuts were also problematic then for me, though chocolate was a great rarity. I also stayed away from cured foods. I was basically a non-alcohol drinker anyhow, so that was inconsequential. I also drank LOTS of water constantly and still do. Given that I was low carbing, I wasn't eating citrus anyway. But in the past, prior to diet change, had been a substantial cranberry juice drinker, which most find horribly irritating with IC. There is a long list of foods which can be possible offenders with IC, but starting with the above may be a good first intervention.And the value of "eating clean" goes without saying!
I used Ibuprofen with excellent response. This doesn't mean that the pain went totally away, but, would get down to a level where I could work and get some sleep. I also used benadry and vistaril sometimes along with ibuprofen, at bedtime. I refused opioids as it was clear to me that there isn't enough opioid in the world for IC and that spells high risk for addiction from the get-go with a chronic condtion, even in those who like myself, have no addictive history. That is simply my opinion and I certainly don't lay it on others.
I also took very high quality omega 3 and titrated it up over a year to about 8 grams. It is my opinion that this had a substantial healing effect on both the UC and IC, as well as accompanying depression, but I don't KNOW that, as in I can't prove it. I have continued to take O3 at a 2-3gm/day level since about 02-03, now more often 2 than 3. I also was a very clear cut case of estrogen dominance for many years with severe PMS -->PMDD, and began using progesterone cream on a peri-menopausal schedule, prior to going low carb. How this may or may not have affected the IC/UC, I do not know. I also took DHEA, the dose of which I cannot remember,(under 50mg) for one year in the beginning of dietary change. I was targeting depression and also have no idea of how this may have affected anything else.
There's alot more good info out there on IC now. I like the following link, in particular the "About IC" and "Living with IC" sections which branch off into alot of good stuff.
My IC has been gone since late 02 or early 03.
IC is rated by WHO or CDC, can't remember which, as producing disability on a level with cancer.