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 🙏

Sorry for all the questions but when would you know when to stop the flare dose?

How long has it taken people to feel symptom free and then to come off antibiotics altogether. I hate the thought of what they are doing to my body!

I just stop once symptoms are gone. Usually after 3 or 4 days. This flare has lingered because I've only done the odd day on flare dose so I'm going to carry on taking 3g until I'm symptom free. I think it varies in terms of how long to stay on... some people years. Dr H told me likely 6-15 months ☹️

Any updates OP, I hope it’s good news?

@SpainToday that's for your kind message. I've written a few updates in the thread but for some reason my username changed!! Maybe from when we had to reset passwords so I have two accounts. I hope you are well and not a fellow sufferer.

How is everyone doing on this journey?

Ups and downs! How about you @MamaAlabama x

I still feel like I’m in a flare despite upping the dose. Looking forward to seeing the consultant next month and finding out what’s next.

@MamaAlabama - are you taking Azo? I find it really helps when I'm in a flare.

No im scared of medication as it is 🤦‍♀️😂

I’m on three trimethorprim a day as of if I go down to three I feel worse, I’m never symptom free but it’s getting better, I do go to the loo a lot in the night hut it’s called down in the day .i had my appointment at HS last week and my readings have gone down , he said to take folic acid and im going back in December. We will all end this journey one day xx

Gosh sorry about all the spelling checks!very tired

What was the folic for?

The folic acid is incase I get anaemic apparently you may become anaemic while taking antibiotics

That’s interesting, I’ve just had my bloods done and they’ve come back as being low in folate!

I must say I do have health anxiety which makes it worse but I’m absolutely terrified of being on antibiotics for this long and the risks. Especially of getting something like C.Diff etc

That's interesting about folic acid and great that they've pick up on this for you @Forn

I've read that developing C.Diff is very low risk if you are on one of the broad spectrum antibiotics @MamaAlabama e.g cephalexin/trim etc. I think info about this was in the files shared on one of the facebook groups (embedded/chronic UTIs) on facebook so maybe have a read. It made me feel less anxious about this outcome.

I'm really struggling at the moment. After 5 weeks of being symptom free from end of July, September has been constant low level symptoms and flares. So disheartening. After occ health suggested I work remotely over the summer I'm now expected to be back in the office 60% but I just can't sit down all day or commute in with my current symptom level. I'm going to have to speak to my manager about making adjustments again. I'm fine when working from home as can use the loo frequently and work lying down.

It's coming up to a year since my original infection became embedded and psychologically I just feel battered! So many triggers and restrictions daily to keep on top of the symptoms and keep functioning :(

If there is anyone reading this who is out of the other side of a chronic UTI I'd love to hear your success story for a boost in morale. One thing I read last night was that under HS it takes on average a year to clear it up so as I'm only on month 3 of treatment I guess patience is key...

This was me earlier in the year. I think I had/have an overactive bladder. The Hiprex made things worse. I stayed away from caffeine for a while and banned myself from going to the toilet more than every few hours. Baths made me feel worse too so I avoided those and soap. And I’ve been doing belly breathing.

the big thing for me was all the UTI symptoms but nearly always negative cultures and dipsticks. I was getting ‘better’ on most antibiotics before then getting worse but I think some of it was psychological and the stress of it all. That’s not to minimise, it was horrific and I was so stressed about not getting better. But the doctors just kept giving me pills to send me on my way. I’m still under a pelvic floor physio and she’s been lovely.

Poor you OP.

I have just got over the UTI from hell that started the day before a colonoscopy (I think the results of the prep started it).

Anyway after two trips to urgent care and me being in tears on the phone to the Dr's surgery (even though the dipstick results were on line the receptionist told me I had to wait for the results from the hospital). I went back to urgent care where they were surprised I had not been given antibiotics by my GP.

I had just about got home when I received a text message from the Dr telling me I had a UTI and prescribing the same antibiotics I had just be prescribed by urgent care.

Anyway I finally saw a lovely new (to the surgery) Indian lady Dr, I am convinced all gynaecologists and anyone dealing with female health care should be an Indian lady Dr. I have never had a bad one.

Anyway she put me on cephalexin and as I'm post meno she also prescribed vagifem a twice a week HRT.

Finally I think some of the time I was trying to pee a bit actually did come out because the area around became red and inflamed. I took some antihistamines for that, I don't know if it had any effect on the UTI.

I know you are on the right track OP but I think different women's experiences add to the general knowledge about UTIs.

I'm not saying we are all experts but between us we have tried different things, it might help someone else.

@MamaAlabama hi I haven’t had my bloods done but I must , thank you for the reminder. Yes I just bought the folic acid over the counter and have started on that .
@applecharlotte12 have you upped your antibiotics, I’m sticking to three a day as if I go down I flare. What did HS say?

I’m so sorry to hear you are struggling so much. It is still early days in your treatment though.

I too have been disheartened by recent flares but I’ve only been on treatment since July. I can still manage to work at the moment though. Sending a virtual hug. It’s a truly horrid, isolating illness.

Im on Nitro so not sure if that’s a broad spectrum one? Scared to Google anything as it sets my anxiety off something rotten!

@sashhand @EnglishRain- thanks for your comments. It's so true that we are all different but I take huge comfort in hearing other peoples experiences (whilst being sorry and hugely empathetic that others are suffering too).

Chronic UTIs is such an under researched and misunderstood illness - it's nice to communicate with other who understand. Plus my partner and family are very kind and caring but I must sound like a broken record after so many months

@MamaAlabamayes that falls under the category so you will be fine, I'm sure. Do try Hiprex too - lots of great feedback and outcomes from other women using it.

@Fornannoyingly when I saw HS in August I had been symptom free for 5 weeks so felt great! I have been upping to flare dose for a day or two which seems to help but then when I drop back down the symptoms increase. I think I need to do what you're doing and stay in flare dosage for more days.

Im actually feeling a bit better today. I must try and remind myself that 'this too shall pass' when I'm having those dark moments like yesterday.

love to all.

Ironically, I'm a psychologist but am struggling more with the mental health challenge of having a chronic uti then the physical impact (although that's bloody awful as well!)

I totally get this. It leaves you feeling very vulnerable. I think because the treatment is so long it’s seems never ending.

I have interstitial cystitis and suspect I have embedded bacteria present as if I slip up even just once with my drinks, it triggers a uti. I treat these myself with uva ursi tincture.

What I learned over the years is that I can't drink any black or green tea. I absolutely have to stick to Redbush or herbal tea only. Ordinary tea, even decaffeinated is no good. The tannins irritate the bladder lining.

Instant coffee is another killer. I can only now manage a small cup of decent filter coffee a day, but it took time before I could tolerate this.

No alcohol.

No fizzy drinks.

No fruit juice, although I can manage some cloudy apple.

I can drink plain soda water.

No citrus fruits.

Please think about cutting tea and coffee. I don't think people realise how irritating tea is. Again, the caffeine content is irrelevant, it's the tannins. They're awful, highly irritating.

Get some Vogel Uva Ursi in. I've even got rid of a kidney infection with this, it's very effective. It acts as a urinary disinfectant. It's what they used to use before antibiotics were discovered. I suffered for years with infections, but managed to get on top of things through trial and error.

@smallglassbottlethank you. Sorry to hear you have been suffering long term also.

I have cut out all of your list as they are also huge triggers for me - inc decaf versions. Additionally, I can't drink soda water. The only things I can tolerate are caffeine free herbal tea, water and sugar free cranberry juice.

I do have some some UVA Ursi in my fridge that I did take before starting long term antibiotics but I wasn't sure if they helped. I will start that again, thanks.

Have you seen a Chronic/embedded uti specialist and had full dose antibiotic treatment? Also, do you stick to an IC diet with food and if so, does it help? Sending well wishes to you.