Non shifting UTI - feeling very low and could do with some support

[summernotwinter]

Help much appreciated.

I have now been trying to shift a UTI for two weeks after a delightful 12 year hiatus from the wretched illness. I have gone onto HRT this year and think perhaps the gap was explained by not being on the pill anymore.

I had three days of macrobid that didn't work and allowed the infection I think to get more bedded in. I am now on day 6 of a 7 day course of trimethoprim. My wee is clear now but I still have urgency and burning and the pain is just....beyond pain I have had with UTI before, in my urethra not my bladder so much. I am not at work today and have struggled so much over the last two weeks to function.

Things I am doing:
D Mannose (no difference noticed)
Sachets when the wee gets too stingy
Drinking two litres a day (GP told me off for drinking more than that and said it could be dangerous)
Mixing paracetamol with nurofen according to the GPs guidance.
I dont drink coffee and defintely won't be drinking wine/booze
Following all the diet info I've found online
Heated sacks
Trying antihistamine today from some forum advice.
I've been prescribed topical estrogen cream but I still have periods in spite of peri and am ovulating with loads of CM at the moment so can't see that is needed (and as the instructions say it can cause vaginal irritation to begin with, I am a bit loathe to start it just yet..)

I called the GP after the end of the 5 day course of trimethoprim and they gave me two more days worth, had a sample which of course came back clear, as I'm on antibiotics and drinking a lot. They said I could have codeine but nothing else - I don't respond well to that. I cannot go in this much pain so there must be something?

So - as someone with quite acute health anxiety I have gone down a right warren hole, decided this could be IC and the outlook does not look cheery. Can it come on like this from one UTI? Has anyone else had this stubborn not shifting thing and got better? Because I haven't read stories where people have or the threads just end with no resolution! I promise to update this thread so it has an ending!

Also, trimethoprim: I feel very out of it, have no appetite whatsoever and very very down. Normal?

I find azo tablets for urinary tract pain work really well to numb the pain whilst the inflammation dies down

Cranberry juice op. Cheap and does really help.

I think the next line is a flouroquinalone AB. I’d ask for another urine culture, not just a dip.

Have they sent a sample to the lab? Or just dipped it?

I had an ongoing UTI that turned out to be pelvic floor dysfunction, triggered by the original infection.. worth reading about?

Topical oestrogen and physiotherapy helped me.

I ask as I have lots of utis. Some AB don't work on the strain of bacteria you have, so they need to find what type you have. Cranberry stops the bacteria multiplying. So it's good to have a small amount regularly. The concentration of cranberry varies in juice, it's worth paying a bit more. Nettle tea is a really good diuretic if you can't empty. I get one called Cleanse from supermarkets but you can get it from health food shops. But ultimately, they need to send a sample to the lab and grow a culture to see which AB will be effective. I used to get e coli a lot which didn't show with just dip sticking.

Lemon barley water - Waitrose have it.

Trimethoprim never worked for me. Cipro does.

Though you will totally get thrush after but it does exterminate most things.

had a sample which of course came back clear, as I'm on antibiotics and drinking a lot

Not right - even if you're taking antibiotics and drinking, a pathology test will still show if you have an infection.

If it came back clear you haven't got an infection. Sounds more that you have a urethral syndrome , and since your urine is clear, that is the more likely answer . I know because I've also got it.

Here is some information if you're interested hhma.org/healthadvisor/aha-acuretsy-wha/

Thank you everyone for this! Cystitis is AWFUL and I’ve felt very alone with it all.

So. Trimethoprim ended after a week and it helped the full infection (no more smelly wee, less urgency) but I still have urethral pain. Dip test yesterday showed blood (not visible to me) and it’s gone off to the lab again. GP said if no infection or get fast tracked for bladder cancer check - is this normal?!!

I had a HORRIBLE reaction to the trimethoprim, bowels and mood.

@IndecentCakes do you eventually manage to get rid of yours? There’s a lot of doom on the internet about embedded infections and it’s freaked me out a lot.

So - are we saying that even after an infection clears, residual urethra pain is common for a while afterwards? Or likely to be something not resolved?

I get problems now and then, had ALL the cancer investigations, nothing sinister. A daily low dose antibiotic (macrobid) helped, and you need to be scrupulous about hygiene, not using perfumes or fabric conditioner etc.

Also the tests they do aren't that sensitive. I constantly got 'no infection' back, but Cipro got rid of it.

Cranberry tablets are brilliant, much better than the juice as more concentrated

I really feel for you. I have suffered with reoccurant UTIs for the past 25 years and I am now on a low dose of antibiotics to keep them at bay, though I still get around 3 to 4 full UTis a year and they often take multiple courses of antibiotics over 2 weeks to get rid of them - 9 times out of 10 my tests come back clear. My consultant said that the lab tests they do don't always pick them up, especially if you are on antibiotics. It sounds like you need another course of antibiotics. If the Trimethoprim has helped, it sounds like another course and it would clear it.
If you get desperate, you can buy Trimethophrim from an online chemist which may nip it in the bud.
The cancer checks sound unusual but at least they are doing more indents tests.
I hope it clears soon for you

Trimethoprim never worked for me, you may need different AB. I also second cranberry tablets instead. They worked really well for me. It's so horrible. You have my sympathies. X

How old are you? I ask because often low oestrogen (even if you’re not menopausal age) can cause UTI type symptoms and we have oestrogen receptors in our bladder so often internal localised oestrogen can help - I use Ovestin oestrogen cream 2/3 times a week and find it really helps. I have lupus and sjorgens syndrome and have severe vaginal dryness (google both of these things to see if it rings any bells) and this really causes bladder irritation. I use Replens non hormonal internal cream on the days I don’t use Ovestin. I also asked to be referred to urology and they prescribed me cefalexin 500mg to be taken at night long term - I’ve been on it years now- and this has been the biggest defence against UTIs. I up the dose to 3 a day if I feel an infection coming and this combination of things seems to help.

@Fuzzyduckduckyfuzz

I find azo tablets for urinary tract pain work really well to numb the pain whilst the inflammation dies down

These are brilliant, I've always got some in stock.

I’d reconsider the topical oestrogen, OP:

twitter.com/jfitzgeraldmd/status/1415837133269606409?s=21

Keflex antibiotics are very good.

Hope you feel better soon x

I had this and needed a 2 week course of a really strong antibiotic. The lab tests are really inaccurate, my consultant said about 50% accurate. I was referred to a urologist. I really wouldn't worry about bladder cancer at all.

Our GP surgery has stopped prescribing Trimethoprim as it's so ineffective. I had one last year that lasted for nearly 5 weeks, I was almost beyond my limits by the end.

GP told me to throw the D Mannose in the bin; cranberry juice is full of sugar and guaranteed not to help either (it's a complete old wives tale). I ended up having 2 courses of Nitrofurantoin which made me feel horrendous but eventually shifted it. I'd say it took a good 3 months for my bladder function to feel "normal" again. You have my utmost sympathy OP

I had this cultures came back negative but I have blood and leukocytes on the dip. The thing that worked for me was a 7 day treatment course for macrobid followed by a three month low dose. This was after a number of ABs including a previous course of macrobid....three days is not enough!
I was referred to urology who told me I had IC but after the 3 months macrobid I felt there was no infection there but I still had so much bladder pain. I was told this would never get better and would have to be controlled by diet. However after a number of months I am back to normal I think my bladder was just so inflamed from 6 months of being infected.
I read a lot about it at the time and the information I read shows IC is normally just an unresolved infection and the tests in the lab are not accurate enough. I was lucky to have a gp who treated me based on the results of my dipstick.
You have my sympathy as it was the hardest 6 months being in constant chronic pain.

Yep op. It's normal if you get them for GP to refer you to a consultant who'll arrange for lining of the bladder to be checked to ensure all is ok. They might also suggest treatment if you still have infection. Both consultants I saw and a bladder physio suggested d mannose and cranberry actually, so they must believe in it's use. I can stave off the beginnings of an infection with them myself. It helps as you then don't need the AB, which you get immune to after a while. Again, you need to know the type of bacteria to know which AB will work. Different ones work for different types of bacteria. Some AB are not recommended for longer term use. Nitrofurantoin is one you shouldn't have long term as it can cause fibrosis of the lungs.

D Mannose works really well for me.