Hi everyone, I'm very glad to stumble across this thread, though sorry to read that so many of you are suffering.
My story:
I'm 42 and have suffered with recurrent UTIs since the age of 17. This was investigated with an ultrasound at around age 19 then again at around age 34. All clear. Before going on prophylactic antibiotics, signs of infection were picked up in the urine dip tests but nothing has ever been grown in a lab from one of my samples.
My infections are always nasty (rapid onset, a lot of visible blood, absolute agony) but earlier this year I developed the most severe one yet and ended up at A&E with a suspected kidney infection. In total, I was in varying amounts of agony for a full six weeks and had five lots of antibiotics. I'm still suffering some low level irritation that flares up every now and again. We had a big holiday planned and have had to move it to next year as I wasn't well enough to travel.
Various GPs have started making noises about Painful Bladder Sydrome (PBS)/Interstitial Cystitis so I was referred to a urology yet again and opted to go private upon finding out that the NHS wait is 54 weeks in my area. I'm already off work sick with a chronic illness (POTS) and even without that wouldn't be able to work when my bladder is flared up. The private urologist carried out a rigid cystoscopy yesterday and he saw nothing to indicate PBS. Which is surprising to me but good because it means it really is atypical infection presentation and we can hopefully at least move towards better management now. He did take some biopsies so I will find out when I have my follow-up appointment if that showed anything. He did say something interesting at my initial consultation, which is that sometimes problems are caused by a proliferation of MAST cells (histamine related) in the bladder lining. This is interesting because I have hEDS and POTS and strongly suspect MCAS (MAST Cell Activation Syndrome). I have many of the symptoms of MCAS and it commonly co-occurs with hEDS and POTS. I also found some research to suggest that women with hEDS are less likely to produce a positive urine culture even with active infection, which I think could be relevant here, and will be showing him this research as he seemed very interested in my comorbidities and very open to listening.
Other details that are relevant but don't fit above: Cefalexin is the only antibiotic that is guaranteed to work for me, Trimethoprim and Nitrofurantion are hit and miss. More miss usually. I've been on prophylactic Cefalexin for years at a high dose (500mg per day), which worked a treat. I reluctantly agreed to reduce it to 250mg per day and that's when the problems restarted. Unfortunately, the GP I spoke to when I developed the most recent infection decided that the Cefalexin wasn't doing anything, stopped it and prescribed Hiprex instead. The Hiprex caused the worst burning I've experienced in my life and made everything a lot worse. And guess which antibiotic eventually cleared the infection? Cefalexin of course. But it had progressed so much by that point that I needed a huge dose of 3g per day for 10 days to clear it. I suspect that the ongoing flare ups I've had since then are simply because the infection was so bad and my bladder and urethra are just incredibly angry. Oh, I've also been prescribed Ovestin in case the recent problems are peri-menopause related. I'm not convinced but have persisted even though the cream causes... yep, you guessed it - burning! I've put it on hold until I recover from the cystoscopy as I'm currently peeing ground glass (well it feels like it anyway!) and can't deal with anything adding to that.
Final interesting (to me!) thing: When I have an active infection I have the usual symptoms of burning/stinging with urination, which eases somewhat after emptying my bladder. The lower abdominal burning then increases again as my bladder fills, along with needing to urinate as often as every 20 minutes. When the infection is severe the pain is severe and almost constant but there's still the cycle of it being slightly improved after emptying my bladder though it ramps up again very quickly. The recent discomfort, after the infection had cleared, was completely the opposite. Pain with and after urination, which eventually fades then restarts with the next passing of urine. No overactive bladder and nights are comfortable unless I wake with a normal urge to empty my bladder, at which point the pain cycle restarts until the burning fades allowing me to get back to sleep. If I'm careful with liquid intake before bed I can get through the night only getting up once or even sleeping through but that's not possible with an infection, as I'm sure you all know! When I have an infection, nights are dreadful as I'm frequently (easily six+ times) being woken up by the pain, burning and need to urinate. This also did make my suspect that it was just irritation rather than PBS/IC as my understanding is that the symptoms are more like that of an infection.
Anyway, apologies for the long story, I did try to keep it short believe it or not! I just wanted to share my story but also to say that if anyone here has any of these comorbidities, or suspects them, they could very well be relevant to your moody bladder issues, especially if your cultures repeatedly fail to show anything yet everything else points to bacterial infection.