Chronic UTI flare

[Okaaaay]

Hello - I’ve been battling a chronic UTI for 18 months now. I’m under the care of the late Prof Malone-Lee’s team. I take a combination of hiprex and trimethoprim.

I’m currently experiencing the worst flare. It feels like the worst I’ve had - I’m so gutted and scared by it. I’ve managed to come off all medication twice in the 18 months but seems to go 4/5 months symptom-free and then have a huge flare that lasts for weeks. What’s more, my last two samples (done in clinic) have been clear. My doctor thinks it’s a nervous response I.e. the area has experienced so much inflammation that the tiniest thing can set it off. The latter bit is the scary bit - there is no infection but I’m in so much pain.

Generally looking for a handhold and support from anyone who has / is experiencing something similar. Would love to know whether you continued with significant flares, whether eventually you got better. Also, one of my symptoms (in addition to the aching bladder and hot urethra) is bloating (lower abdo) - is this usual? Thank you.

So sorry you’re in the midst of a horrible flare. I went to the same clinic and was given another antibiotic to take during flares. I alternated doses of Cefalexin and microbid throughout the day till the flare settled. The late Prof M-L said to do that as soon as a flare starts up. It seemed to help. I just take Hiprex now but have a supply in of both antibiotics for any occasional flares. Stress definitely seems to be the main thing that causes mine but they are few and far between now thank heavens. I think the symptoms sound normal bearing in mind your bladder will be inflamed. The sensation of tenderness and discomfort around the urethra and bladder were definitely what I had. Really miserable. If you don’t have another antibiotic to add in for flares can you contract the clinic and ask for some?

I also remember being told flares at first could feel really severe and then gradually start to reduce in length, frequency and severity over time. That was certainly what happened with mine. I was on full treatment for 5 years though as the infection i turned up with was one of the worst he had treated.

How long have you been on the hiprex? I found I had to stop taking it as it caused bladder inflammation that caused similar symptoms to a flare up.

Thank you both. @Sugarplumfury I do wonder if I need something more / different. History would say that this will settle but it’s miserable in the meantime. I’ve been discharged though on the basis that I was without infection on the two previous visits and know how to manage flares. My flares are weird, I guess because there isn’t bacteria there, it takes ages to calm the inflammation.
@Mastersstudent83 I’ve been on hiprex 18 months on and off.

What did they advise you to do during flares? Was it to go back on the antibiotics till it settles down again ? I think 4-5 months symptom free between flares sounds like you’re doing pretty well, though you won’t feel like it at the moment I’m sure. I got lots of flares which is why I ended up on the full course of antibiotics for a lot longer than many of his patients. And they did feel awful to start with which was really scary and demoralising. But now if I do get one the antibiotics sorts it in less than a week. I’m sure you’ll get there but my goodness the symptoms are just horrible and I hope it calms down very soon. I’m sure at the worst, the clinic would advise you again despite discharging you.

@Sugarplumfury yes the advice is to go straight back onto the antibiotic (which I’ve done). I’ve been discharged before and then gone back after a bad flare so that’s fine. I think I’m having some sort of inflammatory response as a long term effect of the infection - it takes about 6 weeks to settle each time. The timing in between isn’t consistent with the bladder shedding and new bugs coming out. Going to try reducing stress and inflammation and go from there. Thank you for your support.

You poor thing. I really sympathise. Stress is definitely the thing that triggers flares for me. Along with wine. I really hope that in time you find the gaps between each one get longer and they become a lot milder and easier to get rid of. Bad flares are so depressing because you just feel you aren’t making progress and will never get rid of the sodding thing. I can’t believe mine is as good as it is though . I never thought I’d get there as my whole bladder was covered in ulcers according to the rigid cystoscopy the NHS did before I gave up and went privately in desperation. I do wonder if the clinic might think adding another antibiotic to alternate with the trimethoprim during bad flares would be worth considering? I know every case is different but that is what I was prescribed . I alternate 2 doses of both each day till it’s settled. I rarely have to do that now but that was what I did for ages when flares were at the really horrible stage. I hope you soon start to improve 💐

I've had something which sounds similar since my 20s. Never any infection.
However, I had a series of UTIs last year and now things seems permanently irritated. I also went private, had my second urethral dilation and biopsy and finally have a diagnosis of chronic inflammatory cystitis and trigonitis.

Just having a diagnosis has helped enormously. I also recognise that there are triggers - alcohol (the worst is prosecco), tiredness and stress. Sex also irritates.

I manage it now with anti-inflammatories and a combo or buscopan/mebeverine. I don't take antibiotics without confirmation that it's an actual UTI (generally it isn't, the symptoms just mimic it). I'm already resistant to trimetheprim it seems, but have ciprofloxacin to self start (and my own dip tests).

It really sucks, and hard to explain to anyone who has never experienced. I do also find hormones play a huge role - it flares in the lead up to my period. I also use oestrogen pessaries to try and calm things down!

I've suffered with this issue for around 15 years. I've had times that I've been literally suicidal. I was looking into options to have my bladder removed at one point in my early 20s, only for them to advise even that wouldn't end my suffering as I could have phantom pain still.

I have less flares now but I get so panicky whenever one starts. Stress makes mine so bad, but its a vicious cycle as whenever I flare up I get so stressed!

Ive had bladder instillations, distensions, loads of antibiotics etc. I now just take d mannose every day and antibiotics at the first sign of a flare. I also use sodium citrate to keep things less acidic and painful. It's so miserable. I really feel for you.