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Mark -
IC can cause all of the things you're describing and been through. Trouble urinating, blood in urine (even urinating what appears to be pure blood), the feeling of having to go constantly, a feeling of peeing razor blades and/or glass, stomach pains, back pain, abdominal pain (and severe enough to where you cannot walk, sit or stand), it also is the number one mimic of a UTI. Its what most IC sufferers think they have continually and what drs continually treat for, even though they dont have one.
I suggest being tested. you just had a cystoscopy done - do you know if they did a hydrodistention with that? Its where they fill up your bladder with saline to look for pinpoint petechial hemorages, its a classic sign for IC. They do have other means to test now a days, but a cysto with a hydro is the BEST method to confirm IC out there. They can also perform a PST test.. very simple but not as accurate as a cysto with hydro, but it will show markers. Also many IC patients have urethral constriction and spasms, which adds to the pain of it all (the urethra can be dialated with physical therapy, but should never be cut to open it further due to scar tissue...ever). Most IC patients also have PFD (Pelvic floor disfunction) which is a vicious cycle of pushing and locking up of the pelvic muscles...they need to be retrained, again through physical thereapy. It takes time, all of it does.
In the mean time, they can do several tests on your urine to check for markers (mast cells and other cells) that only IC patients have. Think of mast cells like allergic reactions in your bladder. If you can take a small daily dose of Benedryl (like a childs chewable), see how you feel...it does help by blocking the histamine thats released in the bladder. Also - if you can, stay away from acidic foods and soda, coffee, etc. They are killer on your bladder and any red/orange dyes. Try to take baths with epsom salt and baking soda (it helps). Try to eat 2 Tums a day (the baking soda in them help de-acidify your urine - which IC patients have very high acid - it burns their bladders its so high). If all else fails and the pain becomes so great - and you can stomach it - you can mix 1 teaspoon of baking soda in an 8 ounce glass of water and drink it, but only if you dont have high blood pressure as it will make it rise if you do. I cannot stomach drinking it so I can do the Tums (easier) and you get added calcium. AZO tablets over the counter and Uristat (yep, the stuff that turns your urine orange) work pretty good for helping with burning as well. AVOID CRANBERRY JUICE AT ALL COSTS! its a myth that it will help...it actually damages your bladder if you have IC... and since you dont know for sure yet... dont drink it, ever. There are a ton of meds out there that can help as well - from homepathic to modern medicines (been there, done them all) so..you have alot of choices.
Please get back with your urologist as soon as possible, if you dont have a urologist - get one. IC is very complicated and no 2 patients are alike. When men get it, its even worse because its so uncommon in them vs. a woman. And above all else - do not let ANYONE tell you its in your head because its not, trust me. I've been through every treatment known and unfortunately...I've got such a bad case of it, nothing works for me, but there are thousands of others that do not have it as bad as I do (like I-Have-What posted..she has it and apparently can control it with diet
thats awesome!) - so dont dispair if you do have it. There is light at the end of the tunnel for many.
Please make sure you get checked for it, I know the cysto was unpleasant but if you tell your doctor to do a heparin/marcaine/lidocaine instill before, during and then immediately after following up with marcaine again, you will feel so much better should they have to do another one with a hydro/cysto combo. You wont have all that pain/burning when you wake up.
Again, all of the above is to be done only if you have IC - do not do it if you dont have a confirmed diagnosis. Of course, the first thing you should do before getting to see the doctor is modify your diet..write down everything you eat and pay attention to see what foods irritate you. You'll be surprised how many do. Go from there, keep a daily journal of how you're feeling, how much you go, what you've eaten, if you hurt after eating certain foods/drinks, etc and present it to your urologist when you go, that way you'll be ahead of the game.
I wish you all the best.
