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, so sorry you are going through this. I have experience of the same struggle. I cannot tolerate even decaf as it’s not entirely caffeine free so I’d try cutting that out and the vitamin c and sugar content of the cranberry may not help. I stick to herbal tea and water - sad as that is. I would highly recommend Bladapure a supplement from Holland and Barrett, it is life changing! You take it at night before bed and I’m now infection free 18 month! Read the reviews and see what you think but you won’t regret the price tag :-).

Hey @applecharlotte12,
Has your urine been cultured to identity a specific bacteria?

Who have you been referred to in the NHS? You need someone who really understands this condition, many urologists (most, in fact) are woefully ill informed.

There are numerous ways to tackle this:

Long term antibiotics, low dose tends not to work, high dose is necessary for a good length of time. It’s very important to look after your gut health on this treatment, the best probiotics you can find, kimchi etc. Digestive issues caused by antibiotics can stop and thwart treatment. This happened to me.

Hiprex, often in combo with antibiotics, although it can work alone, but can take a long time to work. Not sure how long you took it?

Instillations of antibiotics done directly into the bladder, you can do these at home. Often resorted to by those whose digestive systems can no longer cope with high dose oral antibiotics. They can work, some people have great success, but they’re considered not as effective as oral antibiotics.

The uromone vaccine - this has a very variable success rate, some get no benefit, some are helped or get rid of symptoms altogether.

Some have success treating hypertonic pelvic floor which can mimic uti.

If you’re menopausal, using vaginal oestrogen is critical in case urogenital aspects of menopause play a role. For some people this is the root of their issues.

Treating thrush, common with antibiotic use, is critical, as thrush will exacerbate uti symptoms.

There are also a myriad of herbal remedies that have some evidence of efficacy.

From your post it looks like high dose oral antibiotics were working for you, you just need to be on them longer and you need a urologist who supports this. Some urologists in the embedded uti field don’t believe in testing as they think the actual bacteria causing the issue might be ‘hidden.’ In my experience, testing with one of the labs that does advanced testing has been helpful in guiding which antibiotic is likely to work, look at Focus labs or Regenerus. NHS tests are hopeless and often give false negative results.

There are some really helpful forums on Facebook, although some are very fixed on only one way of treating being the right way.

Feel free to DM me if you like.

Thank you all for your helpful replies and support. It's actually nice to to talk to others who understand and have some next steps to take from your suggestions.

@CrystalBlueWaves I will try Bladapure, I'm at the point where I'll try anything regardless of cost and the reviews are great! Appreciate the recommendation. And yes, I do need to cut out decaf tea/cranberry/vit c and see if that helps too, thanks for the kick up the bum. Will start today.

@Covidwoes nothing shows up in my urine tests and I've done monthly ones through the GP and when seeing an out of hours doc with an infection. They just come back normal. The only time I was showing to have a mild infection was just before my cystoscopy in hospital (I'm assuming because they are more sensitive tests there) and when I had my original infection in November.

@NeonGiraffe thanks, loads of useful thinking in your post. I've been referred to Dr. Chowdry at Whipps Cross but it's an 18 week wait. I've been on Hiprex since mid December. I have been taking daily probiotics and these have helped keep everything balanced and I've avoided thrush or stomach issues so far. Thanks for the private lab recommendations. I will look at doing a urine sample through them.

The urologist I was seeing said the next stages of treatments would be installations or a procedure to stretch my urethra. But I don't feel like these are new infections I'm getting, just a nasty old one that isn't clearing up so the latter treatment doesn't seem relevant.

Oh forgot to say, I'm 45 and no menopause symptoms yet so doctors ruled that out.

Re your current urologist, I’m wondering if the former suggestion isn’t relevant either. Installations don’t necessarily mean antibiotic installations, they can be bladder washes of steroid or IAluril that don’t treat infection. In your shoes I’d check if the doctor at Whipps Cross knows anything about (or believes in embedded uti) and if not save yourself the months of waiting to be fobbed off with ‘bladder pain syndrome ‘ and useless treatments. How sorely let down cuti sufferers are by the nhs/healthcare is much better explained in this short talk by Professor Jenny Rohn about chronic embedded uti , how and why it happens and how little training medics have. Most urologists are lagging years behind as women suffer.

There are about five urologists or departments I know of who treat this in London. I waited a year to be seen on the nhs, only to be fobbed off with a bogus diagnosis, told I had no infection and all the while the original infection this started with embedded further. I did my research and now see someone on the nhs who takes it seriously. I booked in with him privately originally.

@NeonGiraffe sorry to hear you were so poorly let down. It's ridiculous that so many women in this day and age are fobbed off.

Yes it was the washing with antibiotics that my original urologist was talking about. He diagnosed me with recurrent uti's but based on everything I know/feel I fit the embedded category perfectly.

That's great advice about asking straight up if my new urologist believes in embedded utis. I will def do this. Looking at the new urologists profile he is the lead for benign urology at St Bart's but no mention of embedded UTIs (mostly overactive bladder).

Thanks for sharing your experience with me. I'm pleased you found a great urologist who has helped.

It feels like such a hopeless and isolating condition. A couple of people seem to think I just have cystitis from not washing properly! Or assume I'm not drinking enough water. It's frustrating having to disclose such a personal condition (especially at work, "sorry I need to work from home as I'll pee myself if I need to commute in" 😫) and then to not be believed that there is a real infection... so sick of it.

I just wanted to come back and update since @NeonGiraffe @Covidwoes @CrystalBlueWaves were kind enough to reply and also for anyone else who, like me, is scouring the forums for information and support on embedded utis.

The video and advice you shared were a bit of a light bulb moment @NeonGiraffe - huge thanks. I went down a rabbit hole about chronic/embedded utis and was 100% convinced this has been the issue.

Since my post, I've been getting weekly flare-ups which have been horrendous, and the low dose of antibiotic has had little effect. I kept switching antibiotics after a week which didn't help at all.

Today I had an appointment with Dr. Harvey at Artemis Cystitis, one of the few clinics that specialises in Chronic UTIs. They did a fresh urine test as soon as I arrived and looked at the results under a microscope (when you do them at the doctors and they send them away there is too much of a time delay to pick up the infection which is why they always come back negative!). This confirmed that I have 3 different bacteria and white blood cells present (at a low level) that would indicate an embedded infection. He said my story (UTIs since childhood) and symptoms are textbook and started treating me immediately.

He has put me on a high dose of Cefalexin (1g twice a day) and I am going to carry on with the Hiprex and take D-mannose and Vitamin C. Recovery takes a while, and most people he treats are on the full dose for between 6-15 months before then reducing down. He said it's normal to still have flares, but these should lessen, as should the daily symptoms over the coming months.

It was an expensive appointment, but totally worth it, I feel so validated and relieved that there is a way forward. The paperwork he shared after the appointment explained embedded UTIs in depth and the research that they have completed that supports a high dose of antibiotics as being the only effective treatment. I have a follow-up in August where they will measure the count levels in my urine again in the hope that they slowly decrease.

Thank fuck, I didn't get my urethra unnessarily stretched!

Anyway, fingers crossed things improved. Thanks again for letting me rant last month and replying to my OP. I was desperate for answers and Mumsnet came up trumps!

That is such wonderful news! I’m really pleased for you ☺️. Thanks for the update. I plan to look into this more myself. How are you feeling on the strong antibiotics?

Decaf still has caffeine so I’d avoid. Remember there’s caffeine in food like chocolate, ice cream, matcha, cereal and some painkillers. It’s best to avoid all these sources of it too.

That’s great news @applecharlotte12! NHS tests usually don’t pick up embedded UTIs, so many women are gaslit into believing it’s anxiety, or they’re making it up! Terrible. Really glad you’ve got a treatment plan in place.

Thank you! I've only just started the higher dose today and will continue to take a daily probiotic to avoid thrush. I'm feeling hopeful but he said it's a long recovery time and I'll still get flare ups. DM me if you want any info. They emailed me a really helpful general report after the appointment about their approach, the evidence base that I'd be happy to share. It stated that the average patient is in their 50s and has had the condition for 5 years!

@Covidwoes one thing they said was that urine cultures shouldn't determine if there is an issue, a women saying she has symptoms of infection is meaningful in itself and should be acted on. In the report they talk about patient care and that many of their patients feel let down and angry due to previous encounters with clinicians, and being dismissed. It was all very reassuring.

However, It's a terrible state of affairs that you have to go private for this info and approach. How many thousands of women are stuck in the nhs with this kind of condition and suffering? I recognise my privilege. It's grim.

Only just seen your updates, really happy the video helped, it feels validating, doesn’t it. Hope your treatment goes well :)

Thank you for posting all this info. I have been suffering from uti’s and getting nowhere for the last 5 months , the tests always come back negative, I’ve gone onto estrogen pessaries but I’m still sufferings from uti’s. I’m also taking d mannose.
i think i will have to go privately as well, I’m glad i found this post.

@NeonGiraffe thank you :)

@Forn - so sorry to hear you're in the same boat and have suffered all these months, it's absolutely awful. I was reading that D-mannose is meant to be very good for sorting out the e-coli bacteria.

I recently discovered these painkillers that are specifically for UTIs that have really helped during my last flare up: https://vitamingo.co.uk/product/azo-urinary-maximum-strength-24-tablets/ I find normal painkillers (paracetamol and Ibprofen have no effect so thought I'd share (although they are out of stock at the moment.

You might also like to joining the Embedded/Chronic UTI support group on Facebook - there are some interesting files and lots of support there too. I hope things improve quickly for you and if it has only been a few months you might avoid the embedded part all together...

@applecharlotte12 thank you so much, I feel scared constantly and am so grateful for all your advice as well as from @NeonGiraffe

@Forn - just to let you know the Azo pain killers are back in stock.

@applecharlotte12 thank you, I’ve been in contact with the Harley street doctor to get an appointment, I’ve also ordered to do a test at home but see they do it there. How long did you have to wait for an appointment?

I think only 10 days, it was pretty quick. I've had a flare up this week but it was milder than normal.

Hope you're feeling okay.

Thank you @applecharlotte12 ive got a appointment on Monday, I also sent of my urine test to a company bladder uk recommended as I thought the appointment would take ages as I have was having a bit of a panic. A bit silly really to do that but couldn’t believe when I phoned yesterday I could get an appointment on Monday. Fingers crossed.

I hope the flare ups get milder and milder and the disappear for you, thank you for all your help

Hi @applecharlotte12
how many times a day do you take d mannose please

so sorry @Forn i've not been back to the thread. How was your appointment? I take DMannose at bedtime 4 capsules.

how are you feeling?

Hi
thanks for replying, I do appreciate it.
yes a good appointment, I went to see Matthew malone Lee and he said I did have a uti after never having a positive test.
im on antibiotics for four months and starting hiprex in two weeks, feeling sick at the moment with the antibiotics, hoping that will pass, hoping this will work.
hope youre feeling better

Also sorry to keep asking questions, he said 4g of vitamin c, what do you take and how many.
many thanks