Cystitis (non-bacterial)

[littlebigmouse]

Has anyone been driven mad by bladder/urethra burning/pain... to the extent that they've paid privately for a scan of their bladder, just incase it's anything nefarious?

I have quite a full on job but my ability to work is being severely compromised at the moment. I want to try to save time for any testing or diagnosis... by using some savings I have to perhaps initially go private.

Has anyone gone this route and can offer some tips? I'm sure that I must be needing to see a urogynaecologist (which sounds pretty specialised tbh). I live in rural Wales and my GP does things very much in his own time. Rightly or wrongly... he takes an extremely conservative approach to health and will run through 10 lines of 'try this/try that' before he refers. Even when referred, people are now waiting.. infinitely long times..

So yep, just looking for all and any comments really. I'm doing everything obvious that I'm reading online to do: diet, alternative stuff.. first line stuff. Nothing is helping. It is pure hell tbh..

Have you tried d-mannose OP?

If second d mannose although if there's no actual bacteria it might not help but it won't do any harm

It sounds (to my non medically trained brain) a lot like interstitial cystitis which would probably need a cystoscopy to diagnose (bladder camera and not as awful as it sounds).

I don't have experience of IC but I have bladder issues and see a private urologist,!had CT scans and cystoscopy etc. It's been much much quickset than NHS.

Just because your results come back negative it doesn't mean that you don't have an infection. I've had years and years of this. In the end, I went to see a private doctor at my local Nuffield who specialises in cystitis and who used to be a microbiologist and she said that the tests are not accurate and Dr's should be looking at symptoms, not test results. This Dr was on BBC woman's hour recently - Catriona Anderson. Also Professor Lee (I think) is another cystitis expert who has been very vocal about the crapness of testing and treatment for women with cystitis. He doesn't believe that IC exists but that its just rubbish testing systems that fail to identify the bacteria. I also saw a urologist years earlier as the Dr kept telling me there was no infection; the urologist gave me a broad spectrum antibiotic and it cleared up in days - after being told by my GP for months that there was no infection. So basically, you need to try some antibiotics but it might be trial and error to get the right ones and you need a progressive GP.

twitter.com/BBCWomansHour/status/1420611543088058380?t=PweWHdre3xfGlsFe52eZgg&s=19

I've tried to add the twitter link to the BBC womans hour interview. Hope it works as I'm not great at this.

You shouldn't need to go private. I had a cystoscopy and urethral stretch on the nhs for this. It found lots of scarring and banding in the bladder caused by repeat infections. A lot of the urine tests dont pick up low level bacteria either. I had the stretch and 6 months daily antibiotics which helped turn a corner. I still struggle with flare ups after sex and acid foods though

www.amazon.co.uk/Cystitis-Unmasked-James-Malone-Lee/dp/1910079634

My mum had months of this the oh well theres not an infection are you depressed rubbish. She did have internal problems and ended up long term anti bio. You shouldn’t have go private but given lists at moment and in constant pain I would.

I had this for years.
Utter mIsery.
One doctor actually suggested it had nothing to do with my bladder and that I'd pulled a muscle in m back and proceeded to get me to touch my toes repeatedly (while I was begging to stop otherwise I'd wee myself). Utterly degrading.

I haven't much help to give other than empathy.
I actually had some homeopathic drops when I was in Scandinavia- which at the time I thought was literally bullshit (probably) but after a couple of weeks it was gone never to return! I've had the occasional bout of cystitis after sex or using a bad shower gel, but that's it.

You poor thing! If I don't take my daily cranberry concentrate ultra triple strength 30.000mg by Horbaach with vitamin C. I get severe cystitis, up all night, regularly with no bacteria found on urine testing. Get it online and I take x3 daily.
Hope this information helps.