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 🙏

Hi @applecharlotte how are you? I hope your road to recovery is good.

I’ve had the cold etc going around, it wasn’t too bad but I’ve since had a flare, I feel I’m back at square one, I’m going to up the cefalexin today as I wasn’t sure if I was reacting to the cefalexin or what! I’m better without the hiprex for now. Feeling at the end of my tether again though. The one good thing is I had 6 hours sleep last night which I haven’t had for over a year. But When will it end I hate it effects my family as well as I’m so tense all the time. Anyway night about me that’s boring in itself xx

Hi @Forn how are you doing? Have things improved? I really hope so. I have my 9 months review on the 24th. I seem better and anticipate that they will take me off antibiotics and leave me on Hiprex after that appointment. Feel nervous about that but overall just grateful to not be feeling how I was back in May when I started the thread.

Hope other sufferers on the thread are doing well too. 💐

Hi @applecharlotte12
so good to hear you’re improving let me know how the 24th goes please.
im still battling with it, I’m better without the hiprex as I think I was too inflamed for that. But I’m up a lot in the night and do have horrid flares but not as bad as before!
fingers crossed!

Can I ask for any reassurance people can offer? I havw visible blood in my wee, on and off -quite dark and stringy in a cycle every two to three weeks for two months. Sometimes white blood cells. I have a cytoscopy on Thursday to rule out anything sinister but does anyone else get this? I have been taking nac and dmannose and haven’t had any mucus come out in my wee since taking that. I had pcr analysis of wee done and all it showed was gardnerella in my wee (and in my vagina). I am now taking metronidazole to get rid of it but not sure whether it can cause this symptom or not. So frustrating. Glad to hear some people are feeling a bit better. 🙂

A deafening silence! 😱 I have found a case online with same bacteria as me in wee and blood in wee like me. I have the right antibiotics for this so hopefully it will clear up and cystoscopy will show no cancer. 🤞

I’m also having a cystoscopy on Thursday - I have always been prone to UTIs but in recent months I also get invisible blood in my water (you can’t see it, but it shows up when the surgery tests it). I know the most likely causes are infection, inflammation etc but I’ll be glad when I can rule out anything sinister.

I had a CT scan of kidney, bladder, urethra in September and nothing showed up. The doctor thought I may have kidney stones but obviously not.

Update-no cancer. I have a urethral cabuncle which is a benign growth caused by bloody menopause. Spain-I hope your cystoscopy goes ok. Mine was difficult because of this growth-made it hard to get the scope in. Staff were lovely though and I gritted my teeth.

I've been reading this thread and stories with interest as I'm going through my own version of similar symptoms. In a nutshell, my story so far is:

-Severe UTI 7 months ago, antibiotic drip in A&E, lots of blood in urine, vomiting, 10 days antibiotics

-Symptoms never fully cleared, constant pain, doctor said bladder probably irritated by infection and needed time to recover.

-Repeat UTI 3 weeks later with upper UTI symptoms - different antibiotics (even though no bacteria could be cultured)

-Again, symptoms never fully cleared. Constant pain - lots of tests, ultrasound, CT - nothing found

-Another repeat UTI, more antibiotics, pain never clears, no bacteria cultured "mixed growth"

-Tried vaginal oestrogen, but terrible side effects (deep depression and hair falling out) so came off after 2 months

-Go through periods of more moderate pain (always there at a base level) punctuated by a few days of severe pain which can only be managed by codeine (on prescription).

-Recently, GP tried to refer me to urology for cystoscopy, but referral was refused as no blood in my urine. Advised by urology (without having seen me) to try Solifenacin. GP says they are unable to make another referral to urology unless I give it a try, even though I have no symptoms of overactive bladder.

-GP does know about chronic UTI and agrees that it may very well be what I am dealing with, but their hands are tied in terms available referral and diagnosis pathways.

I'm now debating whether or not to try the Solifenacin - has anyone on here used it? Did it help? I understand the side effects can be unpleasant.

I'm also weighing up the possibility of a private clinic. I've looked at the Artemis website, and can see the cost of the consultations, but I'm a bit concerned about all of the other costs that might be associated - prescriptions, further tests for monitoring etc. Can anyone give some idea of costs involved? I'm happy to communicate by DM if you prefer not to talk about amounts directly.

Apologies for the long post - I'm sure you are all used to similar stories of frustration and feeling at ones wits end.

Honestly I would try the test I linked to at digital microscopy. £249 for urine only. It will detect the dna of any microorganism in there and suggest treatment. They are super helpful and answers all of my queries really quickly. I would do that before any consultants. You can take your results to any consultant if you need to.

Happy to chat more by dm and send you the report I got about my wee I also pad for the vaginal swab).

Thanks, @Haggisfish3 - will seriously consider that.

https://www.digital-microbiology.com/

this is them. I had gardnerella in mine which doesn’t show in any nhs tests.

Also, if you are anywhere near peri or
menoouase, get the vaginal oestrogen cream and start applying it. I had no idea oestrogen was so important to bladder health.

As I mentioned above, I had very bad side effects with vaginal oestrogen cream and had to come off it after two months.

Sorry, I missed that. ☹️

No worries - I realise my reply sounded more terse than intended!

yes, I was very disappointed that they didn’t work out for me - so many people have reported success using them

So glad to hear they didn’t find cancer.

My cystoscopy showed inflammation which may or may not be cancerous. I’m having the dodgy bit removed under anaesthetic next week and it will be tested.

The nurse said most people with bladder cancer are diagnosed with stage 0 or stage 1, which is treatable.

As I mentioned earlier, I had a CT scan in September (kidneys and bladder) which was clear, so I’m hoping whatever showed up on my cystoscopy was either not there in September, so it’s now very early stage, or is so small that it wasn’t picked up.

Oh I hope so too. I was thinking of you on Thursday.

Sigh. My saga continues. I have more visible blood in my wee and has lost a
stone in weight since dec. I don’t trust the diagnosis. Everything I have read suggests these growths are on outside of urethra and mine is on the inside of my bladder. I have asked gp for a second opinion re referral under two www wait again. I am seeing gp tomorrow so will update then. I am so worried it is bladder cancer that has been missed. It was a registrar who did the cystoscope and not a consultant.

I'm so glad you are seeing your GP again

I Paid for ultrasound today. Most lovely ladies. 4cm cyst on right ovary which is causing pain. No sign of cancer in bladder. I’m going to ask for cyst to be drained. And will ask to be re referred for bladder if bleeding continues. she couldn’t see a lump in the bladder so I am more confident now that it is a caruncle, in the urethra, and that the bloke was just spectacularly crap at explaining it afterwards. I’ll see what gp says tomorrow.

That’s a lot more encouraging!

Having said all of that it has bled again, more heavily than before. I am going to insist on a second opinion and a biopsy. Ideally on two week wait again. Will keep posting Asa diary for myself if nothing else!

But at least if it is anything unpleasant in the urethra, hopefully it can be taken out if needed! 🤞

Hi @applecharlotte12 how was your appointment at HS?