Don't know what to ask for for embedded UTI

[Chancery]

Hi, I've had the same bladder infection since (I think) at least May, possibly longer. Possibly going back years. But this current manifestation, I had five courses of antibiotics, but it didn't clear up properly. Last couple of weeks, I thought it had finally moved on, but I woke up this morning and it felt wrong, and behold I need to pee all the time again and it's slightly sore, etc, etc. (My urine has stank for months now, It's really strong and has never improved.)

It isn't a full-blown UTI, although it was initially, but it really impacts on my life. I find I hardly go out and when I do, I go on the bus and only to places where i know there's toilets.

My only test during this time was negative (I'd already had antibiotics when it was done so it wasn't surprising) but I know if they test it again now it will still be negative. It's just not virulent enough to show, I don't think.

I tried taking some Doxycycline I found tonight (I'd been given them for a sinus infection but never used them as they are contraindicated for oesophagitis, which I have) but the packet warning is correct - they've hurt my oesophagus really badly and I doubt I'll be able to, or should, finish them.

My question is how do I get this treated effectively on the NHS? In my experience, if you have negative culture tests you can f**k off. Even women doctors don't take you seriously. I don't want to be dismissed with interstitial cystitis because I do NOT believe that's what this is. I think it is an undertreated embedded infection.

Anyone who has had this, what did you ask for? What can I reasonably demand from my docs? I don't even know what to suggest to them. I am completely at a loss as to what I am supposed to do here. I can't take useless antibiotics forever. Any help most profoundly appreciated. Thanks.

P.S. I've got a lot going on just now health-wise and am completely overwhelmed trying to deal with new strong drugs (anti-convulsants), and just having had a severe allergic reaction to an unknown substance (I lost all the skin on my neck), so I don't want to take on my docs from a weak, ignorant position. I need to ask for a treatment with some authority. Thanks.

[Jhshl512]

Hi, Chancery. I have mentioned this on this site before and will continue talking about it. I have what’s called interstitial cystitis. I’ve suffered over 30 years with this. I have many symptoms of an uti. Through my urologist I found a supplement that has helped me tremendously. It’s called UQORA. Go to their website and do the research. It all makes sense. The pills are about $26 dollars a month. My pain is now gone. I have been taking them for about 4 months now. I take the bottle that says Control on it. Sorry this email seems so rushed, but I have an appointment. I just wanted you to know about this before I left. Best of luck!!

[Chancery in reply to Jhshl512]

Thanks for that. I've had a look at it and it doesn't seem to be available in the UK, but I see its main ingredient is D-Mannose, which I have at home so I've taken some of that.

[Shoeysmum]

Hello Chancery. I empathise with you as this happened to me a couple of years ago. For 6 months I was to and fro to the GP/nurse practitioner having decided to make a nuisance of myself. Eventually I was referred to a urologist who arranged for a cystoscopy (camera in my bladder). However it was discovered that there was a problem with my urethra and I had to have a procedure to stretch it. After that no more UTIs.

I was also referred to my local continence clinic where I discovered that the nurse there was a specialist in female bladder problems and knew a hell of a lot more than most GPs. I was already on medication for cervical atrophy (a pessary) and she (the continence nurse) switched me onto a cream equivalent and also advised me to use Replens vaginal moisturiser which is available without prescription.

Maybe you could ask your GP to refer you to a urologist as well as your local continence advisory service.

Fingers crossed that you get this sorted soon.

[Chancery in reply to Shoeysmum]

Hi Shoey, I've just asked for an urgent request of Nitrofurantoin from the docs and while checking my calendar in order to see when it all started I discovered I've had it since January! That's 7 months! If I either don't get this prescription or it doesn't work I shall make an appointment and get this dealt with properly.

[soppysokes]

If it is an embedded bladder infection hiding beneath the more usual ‘just ecoli’, - after years of being treated several times a year with the usual antibiotics the thing that cleared it up here was finally an interested hospital doctor who insisted cultures were taken and prescribed gentamiacin (by IV infusion and fosfamiacin, both very strong but worked. If they find no other reason for your situation personally I would push for those to be considered.

[Chancery in reply to soppysokes]

Thanks Soppy. The day I meet an interested doctor is the day I'll meet elves, fairies and possibly God herself. But thank you for the info. I shall keep it in my checklist.

[soppysokes]

yup, they are very few and far between!

[pelvicpain123]

Hi Chancery. I believe I have an embedded infection and referred myself to see a private specialist in Harley Street (Proffessor Malone- Lee's team). They believe that embedded infections can be treated with long term antibiotics. It can take a few different ones to get it right, I have been in treatment now for a few months and have noticed a difference. Unfortunately, treatment times depend on the bacteria patients have and some could be on long term antibiotics for over a year. The alternative is to ask your Urologist to do a referral to LUTS at The Whittington hospital (NHS). They use the same protocol as Proffessor Malone Lee and will be free (although I imagine the waiting lists are very long).

[Chancery in reply to pelvicpain123]

Hi, today the doc arranged for me to hand in a sample tomorrow morning. I imagine it will be negative as I've just had Trimethoprim. She says if the culture comes back negative she's going to refer me to a urologist. Really don't want go to one of those (God knows how long the waiting list is currently anyway; I waited almost a year to see a rheumatologist, who was useless), but needs must.

I am, however, going to run something past her. Apparently Klebsiella Pneumoiae is the second most common bacterial UTI and I wonder if I have some kind of overgrowth of it. I very recently had a weird and quite severe allergic reaction to alcohol (I lost all the skin off my neck). I am not allergic to alcohol. In fact, I have no known food allergens but have lots of drug ones. KP is one of the bacteria responsible for auto-brewery syndrome (where people get drunk from eating carbs). I wondered if maybe the two things were related and I have too much of it in my system and it's got into my bladder. I thought we might try an antibiotic designed specifically for KP. It wouldn't hurt to try it while I ma waiting for a urologist.

[Gotroot in reply to pelvicpain123]

Hi, I too have been dealing with bladder and kidney pain/burning for over a year now after a kidney infection that was not properly treated, and just found out about embedded uti but not sure how they can detect the bacteria. In your case, how did the doctors know that it was an embedded uti vs. a regular one? In the case of embedded since the bacteria is not floating how does it show in a urine culture? Did it show in your case? How did they know what antibiotics to try? Sorry, for the many questions, just trying to understand it better from the experience of someone who has been diagnosed and treated. Thank you

[Chancery in reply to Gotroot]

Hi, I'm really sorry, but I can't help. I haven't been diagnosed with an embedded UTI. At the time I posted this I was still trying to figure it out and I did see a urologist who put me forward, allegedly, for a cystoscopy, but there is a 73 week waiting list i.e. about a year and a half. If it's cancer, I'm dead! I've been on Solifenacin and now Mirabegron and they help with urgency but don't stop the pain of flares. Just for your info, embedded infections don't show in cultures. They can do more advanced testing but that isn't available on the NHS (I'm in Uk). Sorry i couldn't be more help.

[Gotroot in reply to Chancery]

Thank you Chancery. I am in Canada and I do not think they have the advanced tests here either but I will definitely ask my doctor. That is an incredibly long waiting time! I hope all goes well for you.

[Chancery in reply to Gotroot]

Thanks, and right back at you!

[pelvicpain123]

That sounds painful . I hope that you get seen quickly and that you get an answer asap. Getting a referral to Urology is a good start though. They will hopefully have more of an understanding of an embedded infection and how to treat it than a GP would and you could always ask for a referral to LUTS when you see them (I think only Urology can refer you there anyway). Thinking of you ♡ x

[yeslad92]

Hi there, To be honest, from the symptoms you disclose it sounds more like a possible STI. I would ask the GP for a full bloods including STI’s and Urine and Swabs. Very often antibiotics can minimise symptoms and also produce false negatives. Smelly urine is more common in STI’s than UTI’s from my experience.

[Chancery in reply to yeslad92]

Hah, you gave me a good laugh. Trust me, it's not an STI. I'd have to have sex for an STI.

[CMR22]

Hi Chancery, I hope you have had someone take you seriously about this now, and some positive results. I also strongly suspect I have an embedded UTI, following some years of acute recurrent UTIs. I have the pain and exhaustion but the bacteria and cloudy urine never show up anymore (I think a nutritional therapist helped rid me of the acute UTIs), but a test detected blood in the urine so I have been referred to a urology clinic and for an external and internal ultrasound. I wanted to get in touch because I actually had an embedded chronically infected tonsil which was only solved by removing it, not by antibiotics, so I think you are right to be sceptical about them. I think my plan is to insist that this be investigated as an embedded UTI and biofilm bacteria (what I had in my tonsil, where the bacteria group together and become harder to treat, I have read happens in the bladder too), so maybe you could try that.I'd be interested to know how you are getting on, and hope you have seen some improvement, I know how difficult it is to live with.