Bladder pain and urgency- no UTI. desperate for answers!

[sunshine05]

So I've had urgency and frequent urination and intermittent bladder pain for a month or two now. Initially I thought it was a UTI and urine test showed some bacteria, doc gave me antibiotics but they did nothing and the test came back from the lab as normal. So now I've got a private referral but it's in a months time and I'm in pain and so uncomfortable. I don't know if it's an irritated bladder, or the horrible interstitial cystitis or something else. I have a blood test booked for this Friday to rule out more sinister possibilities. I swing from not being too worried to thinking that something awful could be wrong with me. Yesterday I had a eureka moment thinking it could be the sweetener in my protein powder I have in my shake after workouts but now I'm thinking it's unlikely- although I'm going to cut it out and see. Side effects of sucralose (amongst other horrible things) is bladder irritation/problems so it's worth a shot. But I'm just so fed up and miserable. At the moment the pain is quite severe. I don't know how I can cope with this for a month before getting more tests done. And I'm terrified that this could become a chronic illness that I will have to live with for a long time. Anyone else had similar issues, positive outcomes? Anyone have any ideas/thoughts??

@Chas23 There isn’t a cure for IC, but there are lots of treatment options. You may have to try a few.

I was diagnosed 13 years ago, age 23. I’ve been on a combination of amitriptyline, solifenacin and famotidine for about 10 of those. I can live a normal life and only really notice my IC around my period (bearable) and if I get constipated.

This is after spending a year in bed. There is hope.

Thank you for your response, i appreciate it.
Are you still taking those medicines or did you quit taking them, if so, how long did you have to take them?
I am trialling taking antihistamine which seems to help a little but i know that when i stop taking, bladder pain will come back. I just wanted to know if there is hope for a normal life, a healthy/healed bladder without relying on drugs long term.
Thanks.

@Chas23
How long have you been on antibiotics for?
Cystitis pain is an infection until proved otherwise. Don’t go down the path of other drugs, pain/ depression drugs without a good long course of antibiotics and Hiprex.
I had full strength Co Amoxiclav for 3 months, nitrofuratonin for 3 months, both with Hiprex. Stopped antibiotics, still on Hiprex. 3 days of antibiotics after sex.
Would consider myself cured but intend to stay on the Hiprex etc for life.

https://www.chronicutiinfo.com/chronic-uti-facts/guide-for-sufferers/

@Chas23 Chrisinthemorning is right. There’s a difference between chronic/ recurrent UTIs and IC. It was only after a year of investigation, including cystoscopy under general anaesthetic and biopsies, that my urologist would diagnose the latter. No sign of any infection at any point. (There are some people who believe that there is always an underlying infection, and who knows, maybe they’ll be proved right one day, but we definitely couldn’t find it!)

I’m still on the drugs, but honestly, I marvel at how such an easy solution (no side effects) has given me my life back.

There was a period of time where I went completely into remission, and came off the medication, but my first pregnancy ended that quite some years ago. Maybe it’ll happen again one day, but I’m too busy living a normal life to think about it. I had thought my quality of life was shot forever.