Trying to get bladder issues diagnosed since 2013

hiwas wondering if anyone could shed light on this In 2012 I used to get UTIs - all cleared with antibiotics - except for one that persisted - I visited GPs a thousand times - who eventually referred me to urologist - was told then apparently I had interstitial cystitis - my symptoms were not too bad - so I declined any treatment they offered me - but they threw aggressive powerful medication at me - without even considering me as a person who has other health issues..anyway fast forward to 2015 and suddenly I had acute onset worsening of my symptoms without any reason - and my bladder frequency and pain suddenly became severe It has stayed that way for 18 months now - gets worse when I have my period (is my hormones the issue here ?) and improves whilst not on period - but still not normalI moved to uni in sept - up north - where obviously I managed to get a LOT of tests done under NHS - as less people up north I had cystoscopy again + had my bladder capacity measuredI was told I was misdiagnosed with IC - my bladder looks absolutely fine - my bladder capacity is fine - and it empties itself normally - and they essentially can't tell me what is wrong with me - as everything is normal and there is no abnormality my other General history includes:IBS - which also worsened 18 month agohad optic neuritis 2.5 years ago (not diagnosed with MS or any other autoimmune disease)every blood test or any test whether it is MRI - CT- ULTRASOUND - is NORMAL for me I am going back to GP *(now back down south so going to a clueless GP who I have to present my notes to..)how can I get doctors to take me seriously and do something for me as for them the buck stops for them as every test result is NORMAL....

Endometriosis is plausible - mention the symptoms to your GP as being monthly and ask for a referral, or try the pill to see if it helps. Could be part of your IBS too - IBS symptoms can be worse with periods, and can extend to the GU system. Unlikely to be MS etc if the bladder empties normally.

Btw, i get you're pissed. But with the number of referrals and expensive investigations you've had you can't say that they aren't 'taking you seriously'. And what can they do if they have tried medication that you refused, and there is nothing to find on any investigation?

I doubt it is a 'deep seated infection in the bladder' - that seems like crazy talk and there would have been some evidence of it in blood tests or cystoscopy or urine sample.

Maybe, since you're pissed with the NHS, you should just take the plunge and go private. I know you said you don't want to, but sometimes if your convictions are that strong despite the evidence that you're not being taken seriously and having enough investigations you have to risk being 'ripped off' by someone who will just do whatever investigations you want to be done. You never know, you might even be right.