Embedded/Recurrent UTI

[applecharlotte12]

Hi, I'm hoping someone can help me...

Embedded uti since last November triggered by a kidney infection, had ultra sound and cystoscopy all clear. Tried hiprex, didn't work. I take Cranberry tablets daily although the urologist said not to bother.

On a low daily dose of antibiotics (did 3 months trimethoprim now on cefalexin) but still have mild symptoms that flare into a full infection 2 x month. It's only when I take a full dose of antibiotics that I start to feel okay, but when I drop down to low dose, symptoms come back immediately.

I work full time and am hanging on by a thread - the daily maintenance and headspace is horrendous. Plus it's affected my relationship.

I don't drink anything but weak decaf tea, water and cranberry. Gave up booze (2 years ago), fizzy drinks, caffeine, sex, tomatoes, citrus fruits.

Has anyone come out the other side of this? What worked? How long did it last? I originally saw a private urologist but am now waiting to be transferred into the NHS. Any advice, guidance or shared experience would be welcome 🙏

I had the same for 12 months - it was undiagnosed type 1 diabetes!

No, I've never seen a specialist or had antibiotics. I only know it's an infection because the urine smells and I'm peeing every five minutes. It ended up in my kidneys once and I needed antibiotics for that. Be careful if you're drinking cranberry juice because some bacteria thrive in acidic conditions and the cranberry is acidic. I don't have any faith in the nhs treating it so I just manage it myself. I can't afford private treatment either. It's a constant effort to drink enough to keep the bladder flushed as well. You have my sympathies as it's a miserable state to be in.
.

Is it ok to get the flu vaccine when on long term antibiotics does anyone know? Like I’ve said, I’m scared to Google anymore.

How are you all? After a terrible September, I realised I was drinking too much water and since drinking to thirst have now been symptom free for 6 weeks. I can tolerate one weak coffee/a fizzy drink and sex (though not frequent!) so maybe on the mend. Have my review at HS next week and praying my bacterial load and wbc will reduce on the urinalysis. Would love to check in with everyone else and sending well wishes.

@MamaAlabamano idea about the flu vaccine. Did you have it? Can't see anything online to suggest a link with symptoms tho?

Wow @applecharlotte12 thats so good to hear, I hope you’re now in the road to recovery. I find if I dint drink enough water I the morning my symptoms come back in the afternoon, but they are certainly not as bad as they used to be, I feel the light is at the end of the tunnel. My appointment isn’t until 10th December, let me know how you get on with yours. I’m so pleased you’re feeling better it gives me hope x

Ps I’ve now cut out sugar as well as many other things and that’s definitely helped

I'm glad to hear things are improving @applecharlotte12 . There's something that really jumped out at me, from your first post:

On a low daily dose of antibiotics (did 3 months trimethoprim now on cefalexin) but still have mild symptoms that flare into a full infection 2 x month. It's only when I take a full dose of antibiotics that I start to feel okay, but when I drop down to low dose, symptoms come back immediately.

I'm not a doctor but I think the above sounds quite diagnostic, ie if you take full antibiotics, you feel ok, but slip back when you stop. So surely this indicates infection, and if it responds to 'full antibiotics' I'm not sure why you can't keep taking them? For any other part of the body, I suspect you would just keep taking antibiotics until things are completely clear? But I'm so glad to hear you're starting to feel a bit better

@Fornglad you are starting to see the light. Very pleased for you. Well done for giving up sugar... I know I should really but it's so hard!!! One of the few joys left! Do you still have fruit?

@SpainTodayhi - thanks for your comment. Yes, you're totally right - I've been on full dose cephalexin since June and it's made a huge difference (as long as avoid triggers!).

What's very frustrating is that NHS urologists and GPs won't prescribe the full, long term dose and only low dose as it's not in their (out of date!) treatment guidelines. I've had to go private with a chronic uti specialist to get this help. I worry about how many people are stuck in the NHS on low dose and struggling. I am much better now but still need to be careful, managing this condition takes so much energy!

Hi @applecharlotte12 yes I have blueberries and stewed apple with some organic coconut yogurt, only because it’s sugar free and I’m lactose free as well. I don’t eat any citrus fruits

Hi everyone, how are you feeling? I hope you're all okay.

I had my 6 month review at Harley Street last week and wanted to share an update! I've been symptom free for a couple of months - apart from when I drink fizzy drinks/more than one caffeinated drink, they seem to irritate. And in October I struggled to sit on my office chair for long periods, although that seems okay in November.

My urinalysis counts have gone right down - WBC are at 2 and no epithelial cells. Dr Harvey has reduced my Cephalexin dose by a quarter to 1.5g a day for the next 3 months and if my counts stay low I'll then do Hiprex only for another 3 months after that. I feel normal, although careful with triggers and planning to try my first run next week...

I'm so relieved... but know that I'll probably suffer again at some point in the future. I've started vagifem pessaries and HRT in the last 3 months also so hoping that offers protection from future infections.

I don't feel quite out of the woods yet but wanted to share a positive story as I know I searched for these when I was at my worst/lowest.

Hope things are improving for you all too...

@applecharlotte hi

I and so pleased you have had a good appointment and your counts are low. What a relief and also that you are going for your first run, gosh you’ll feel better after that. I long to go back swimming.

i do feel I have massively improved, Im still off sugar etc and still get agitation down below but nothing like before, maybe it’s the hiprex but I’m determined to stay on them and try and get rid of this.

im also on the pessaries, and that does feel better but I do need to go for a smear which I’m dreading. I have my appointment at HS on the 10th so may ask Dr Malone lee what I should do about that. I’m actually looking forward to my appointment to see what my readings are. What a year we’ve had!

good luck x

@applecharlotte
ps I’d also like to thank you for starting this thread which encouraged me to go to Hs and give me confidence to call them, it’s literally been a lifesaver xx

@Forn thanks for sharing your update. I'm so pleased you are improving!!!! Delighted for you. Fingers crossed symptoms continue to disappear and count go down. Let me know how it goes on the the 10th. I finally have an nhs appointment with the NHS urologist next week... no idea what will come of that! It was a 10 month wait to see someone and I've obviously been seen by HS in the meantime. Probably a waste of time as I have already had a cystoscopy and scans earlier in the year. Anyway, I'm about to have a cup of coffee (seem to be able to tolerate one a day now!). It feels brilliant to be almost back to normal. Sending love to you and any other fellow sufferers on her.

Ps still haven't tried a run yet... can't blame anything but laziness and how cold it is for that tho!!

@applecharlotte itll be interesting to see what the NHS say and Hope you’ve managed your run!
I don’t know why I always have symptoms in the afternoons. Anyway off to HS next week so hopefully I’ll have better results xx

@applecharlotte12 so unfortunately my results have gone up. I did wonder, after feeling better in September and then it’s been inching its way back. HS have changed my antibiotics and I’m off hiprex to see if that’s bothering me. Back to square one :(

Marking place, so much useful info here, thank you all.

Hi @YogaLite welcome to the thread. Are you suffering also? Feel free to share your story if it feels helpful.

@Forn so sorry to hear about your counts but hopefully switching antibiotics will help and start to treat your infection. Did they say they thought it was just the wrong antibiotic for the bacteria? I hope you start to feel better soon.

I'm doing okay. I'm pretty much symptom free day to day but still can't exercise or have sex as those seem to be triggers. Dr. Harvey did say that it was unlikely still an infection but more that my bladder is sensitive from the original infection and needs more time to recover. I can tolerate coffee now which feels like a huge win. Two months ago I couldn't drink one weak coffee or tea without feeling awful.

I finally saw a urologist at Whipps Cross. They have suggested that I do some bladder instillations - one a week for 6 weeks. Not with more antibiotics but with something that will help my bladder lining recover. No idea how long it will take to start... I'd be interested to hear if anyone on this thread has had that treatment and their experience of it? When I ask chat gpt it says that it's 60-70% effective at minimising cystitis symptoms after a chronic infection but it doesn't work for everyone so probably worth giving it a go - although I'm not looking forward to it as :(

Sending well wishes and symptom respite to all.

Hi @applecharlotte12
So good to hear you’re doing so well, it gives me hope.

Dr Malone Lee said maybe I’ve become immune to Trim but to be honest I had very few symptom free days. Coming off the hiprex I think has helped with the irritation and I’ve slept a bit better. TBH I’m shattered after a year of this, I have my last two catering jobs to do today and then I have a break and I really feel I need it. I feel I’ve just been surviving. Apart from a few easier days and sort of convincing myself I felt better, it’s been a long year!

live heard of these bladder installations , I think on fb on the CUTI page they talk about it. Will you go back to HS?
x

Hello @applecharlotte and others, thank you for the welcome.

It's not me, it's my son age 33 who suffers from urine retention which now causes frequent UTIs, catheter is looming but that comes with increased UTIs, can't win.

Just finished Trim and not even sure it cleared it so will be retesting.

Anyone with experience of urine retention (especially in men) and any ways of avoiding catheterization are welcome. Must read the whole thread, never wanted to become an expert on urine retention or UTIs 😕

Hi @YogaLite
Im sorry to hear about your son, it’s so hard this illness. It may be a good idea to join the embedded/chronic UTI support group on Facebook. I only dip in and out but they’re very supportive and there’s a few chaps in there struggling as well xx

@Forn thank you, never thought of looking on FB, such a lonely struggle.

@Forn pleased to hear you have some time off now. I think it's easy to forget that this is a chronic illness that takes sooo much out of us. Rest and minimising stress is so important so our immune systems can keep fighting, it's truly awful. I get very focused on how I feel day to day but it's an ongoing battle - even on good days we use so much mental energy managing it and then there's the anxiety of a flare up being on the horizon. I really hope your new antibiotic works. I am resistant to Nurofurantoin after years of many short term courses.

@YogaLite so sorry to hear your son is suffering. There are some men on the fb groups who might be able to offer support and insight. I don't know about bladder retention I'm afraid, is there medication that can help relax the muscles so it can empty properly? Sending well wishes to him.