What is the real cause for my ongoing cystitis?

Hey verity, I'm sorry to hear you're in a bad way, it sounds like you've been through crap. I'm 22 and have had very similar symptoms to this since starting to have sex when I was 18. I get cystitis about once every two months or so but the intensity is a bit different to yours. Right now anitobiotics do work for me but I know they don't for all women. Straight up: It sounds like you're doing all the right things in terms of treatment and I know from experience it can be SO frustrating to be a good girl about it all the time and STILL suffer. DON'T give up. It's great you're seeing a urologist, some people can leave these symptoms for ages and not do anything about them because they're too scared or too embarrassed. Keep going and you'll find answers.

I was also recommended to see a urologist because they wanted to test me for interstital cystitis. I reckon they'll probably want to test you for IC and if they don't suggest it you might want to be asked to be tested for it as some of your symptoms match. Whichever way it goes it's good to either know you have it, or know you don't, because you'll get a conclusion either way.

You read a lot of bad stuff on the net about IC but I know a girl who suffers from it: she was 20 when it started and although it does affect her life in some ways (she has to take the odd day off work and has to be careful about the ways she has sex and when she has it), she lives with it, is a chirpy person in general, and it is treatable. I'm not saying you definitely have IC but I reckon they'll want to test you for it and I was scared to be tested for it too because the net makes it sound like it's the end of the world!! I turned out not to have IC but a different kind of complication (it's a tricky thing the old female abdomen) which at the moment, is not responding to treatment. So don't feel like you're totally alone and everyone else's vajays are all normal, so many women have problems like this we just don't talk about them enough!

When I was tested, I had a consultation with the urologist first and he said he wanted to test me for IC. We scheduled in a date and they put me under general anaesthetic because I was in a lot of pain (but they don't always do this: it can be done under a local). Then the urologist does a cystoscopy: he puts a camera up your urethra, fills up your bladder, has a look around at your bladder inside, and sometimes takes a very small biopsy sample, then he drains your bladder and it's over. It all sounds a bit gross but I was under GA and I didn't feel a thing, had no memory of the op and the only post-op problems was a little bit of bleeding and a bit of sharp pain when weeing for 24-36 hours after the op (and if you've had bad cystitus before you're like "Hey that's no problem man, that's every day life for me!"). Basically: it was no big deal and nothing to be scared of. My understanding is that if they don't offer you GA for this kind of op, you can request it if you want. 

I hope this answers some questions for you and if there's any other info you're looking for do ask. Don't give up: women's health is going through a real turn around at the minute and there's new answers and new treatments being found every year. I know it can sometimes be scant comfort, but we're lucky to have these problems and be our age! Young women with these problems in the 60s, the 70s, and the 80s, even the early 90s, had no one to turn to and there was bugger all research about it: most of them remained untreated or are only being treated now. Unless you had a load of money for specialised private healthcare not much could be done. Nowadays it's not the same and there's a lot to be done, no matter how tough the case, so keep going.