Blood in urine, no infection, other symptoms ...

[Lovemusic33]

I have had problems on and off for 4 years, frequency to go to the loo, waking up in the night to go, stomach pain and back pain, all have been getting worse, I am now getting up 2-3 times in the night and have to plan going out around where public toilets are located. A few weeks ago the doctor found blood in my urine so gave me a cause of antibiotics (again), today tested again and blood still there so sample being sent off to lab, if no infection then they are booking me for a CT scan and then possibly a camera and biopsy ( sorry, not sure what it's called ).

I suffered with UTI's send kidney infections as a teen but this doesn't feel like infection.

I know I will have to wait weeks/months to get the answer, I am fed up of planning my life around toilet stops, fed up of the cramps and fed up of being fobbed of with 'oh it's a uti, here's some antibiotics'.

Anyone else experienced this? What did it turn out to be?

[hellhasnofurylikeahungrywoman]

I am at exactly the same stage as you are, blood in urine (+ leukocytes at this point) and am waiting for a scan. GP said yesterday if it were just blood then stones could be an explanation even with no pain. I have had blood since November, sometimes visible, sometimes not but always there.

[Lovemusic33]

It's frustrating.
I had a scan a few years ago due to the same symptoms, no stones were found and I gave up going to the GP only to be given antibiotics ( which made me feel ill ). Hopefully this time they will get to the bottom of it.

[lozwil]

Snap I am almost at the same stage but I was referred to urology this week but told would take a while as I wasn't an emergency case I have had blood in urine not visible for last 3 months getting up for loo a few times in the night and pain in my lower back on one side so u have my sympathy it's a nightmare but my gp did say that it is unlikely to be serious x x x

[TreeHuggerMum1]

I am the same. Blood and protein in my urine for last God knows how many years. Following numerous tests and scans I was diagnosed with Loin Pain Haematuria Syndrome.
No cure or treatment except painkillers when it's sore.

[nmg85]

Could possibly be Interstitial Cystitis / Painful Bladder Syndrome. Not entirely sure why a CT scan would help as the usual path of this type of symptoms are ultrasound and then a cystoscopy which is where they put a camera into the bladder.Don't let them keep giving you antibiotics as it can make the condition worse, try and force a referral to the urologist to get the scans you need. I got a diagnosis pretty quickly although trying to find a treatment plan that helps at all has been a much longer process. If you want to chat then feel free to PM me, also check out the COB Foundation, it can be a scary prospect and some of the stories are terrifying but they have some really helpful information and you can order things such as a 'can't wait' card to help when there are no public toilets etc.

[Lovemusic33]

Apparently they don't do ultrasound for this anymore ( I did ask as this is what I had last time ), a cystoscopy was mentioned. I do suffer from cysts in my ovaries so I may be prone to them elsewhere?
I went into town this morning and had to quickly find a toilet, I hadn't even had a drink but had to go 3 times before I got to where I was going

[nmg85]

They do where I am from. It has nothing to do with any cysts it's an inflammation of the lining of the bladder. I know the feeling about needing to go often. My record is about 80 times in a day. Make sure you still drink as this can actually make it worse.