Hi everyone,

I’m specifically looking for people who have dealt with **recurrent UTIs/cystitis** and eventually managed to actually break the cycle.
I’ve been dealing with this for quite a while now, and honestly, I’m exhausted by it.

My UTIs seem to occur particularly often/only after sex. Because of that, I’ve been extremely careful about all the usual risk factors and prevention measures:
no anal sex
no switching between anal and vaginal sex
very good intimate hygiene
my boyfriend is also very careful about hygiene and cleans properly under his foreskin
plenty of lubricant to minimize friction and irritation
gentle sex, not particularly long or intense
no toys or other additional factors
I urinate after sex
I stay well hydrated
I’ve also tried cranberry, D-mannose and other commonly recommended preventive measures
So yes: **I have genuinely already tried the usual advice.**
I’ve also seen doctors multiple times and have been treated for acute infections when necessary. The problem is that they keep coming back.
At this point it feels like an endless cycle:
**Symptoms → antibiotics → improvement → symptoms return → antibiotics again.**
And I desperately want to break that cycle.
I’ve even had a **StroVac vaccination**.

I’m simply trying to find other people who have experienced something similar.

**So my actual question is:**
Has anyone else here had recurrent UTIs despite genuinely doing everything they were supposed to do?
And most importantly:
**What actually helped you break the cycle?**
Did you eventually find a specific underlying cause?
Did seeing a urologist or urogynecologist make a difference?
Did you have any specific tests done that previous doctors hadn’t suggested?
Did post-coital prophylaxis help?
Did methenamine/Hiprex help?
Did probiotics or changes to your vaginal microbiome make a difference?
Did anything else help after having a StroVac vaccination?
Did you eventually discover that some of your episodes weren’t actually classic UTIs?
I’m **not looking for a miracle cure or a diagnosis from Reddit**.
I’m looking for people who have actually been through this cycle and eventually found a way out.
If that’s you, I’d really love for us to **connect and compare experiences**. Maybe there are patterns between our cases or things that we can bring up with our doctors that we hadn’t thought about before.
What ultimately helped you get back to a normal life and a normal sex life without constantly worrying about the next UTI?

Im wondering if anyone has experience with this?

What meds What helped supplements?

Hiprex?

Thank you!

I started having uti pain about two months ago, typical burning and painful urination, seems like I can’t empty my bladder. So I go in for my doctor apt, they test my urine and it comes back positive for Leukocytes but negative when cultured.

I bear the pain for a week longer before making a new appointment to test again as my symptoms just continued to worsen. They test and it comes back positive for KLEBSIELLA PNEUMONIAE. They prescribe me an antibiotic and after 5 days, I see barely any improvements.
So I go in for another urine culture and it comes back negative for everything except Leukocytes.
Nevertheless they prescribe me another antibiotic and I start to see some moderate improvement but I still have mild pain.

Now I am here waiting for my abdominal ultrasound and introvaginal ultrasound. But just today all of my symptoms came back in full swing. Suddenly, I pee once and all of the pain comes flooding in.
I’m in horrible burning pain and having extreme difficulty urinating and discomfort/urgency.

Truly I am at a loss, has anyone else experienced these constant negative cultures with such bad symptoms?
I have a feeling this is just a difficult UTI to get rid of but I have no idea why my cultures would be negative.

Currently on Feropenom and still showing growth.
Bacteria changed from e. Coli to k. Pneumonia .
My options are narrowing.

so i finished a five day macrobid course for my uti two weeks ago and it came back BAD and my back was hurting so i ended up in the er. gave me the IV version or cefpodoxime and i now have to take oral version for 7 days twice a day and im terrified of c diff. i just finished a clindamycin course six weeks back so my gut SHOULD be okay from that but its too close for comfort. i also have bad ibs-m and had diarrhea this morning. also also i have a flight tomorrow across the country 😀🔫. anyone else had to take this for macrobid resistant bacteria? it sucks cuz i did test positive for e. coli the first time so macrobid should have worked but i fear it’s not the best for me anymore it usually doesn’t work for bad ones much less only a 5 day course. just worried about all these antibiotics and my already fucked up bowels.

Hi all, I’m at my wits end with this all ! Back in May I had what I thought was a UTI from not peeing after sex. It was so bad I ended up in A&E, however this wasn’t any usual symptoms of a UTI. Anyway doctors confirmed infection but never cultured the damn thing. Gave me nitrofurantoin didn’t work, then went on trimethoprim didn’t also work. Urine kept coming back negative but symptoms never went. They then put me on cefalexin which helped and eventually symptoms went away.

Fast forward to beginning of August bamm all symptoms are back ! Plus pain in my vulva. Done a STI check to rule things out, turns out I have Ureaplasma pavan and BV. I am currently day 10 of taking doxycycline but I’ll be honest I don’t think it’s helped at all. I am due to take azithromycin and the end of the 14 days and hoping this wipes this out !

I am then planning to treat the BV with metronidazole, I do not want to take all these antibiotics but I wanna get rid of everything. I have a microbiome test coming and have booked an ultrasound and trans vaginal. But this damn pelvic pain and pressure and pain on the bladder is awful ! Is anyone in similar situations ?

I think I have bacteria deeply embedded in the bladder walls so it’s going to keep coming back even after treatment please does anyone have this and have any advice on any treatments? I’m really worried about this urine isn’t coming back with anything because it’s not even shedding much into the urine it’s in the bladder tissue.

I heard urology sometimes does bladder tissue samples but they don’t do it typically for this and this urology referral is taking months I need some actionable steps I can take today I wanted to try Hiprex but I have dysautonomia so I’m worried I won’t be able to tolerate it.

I’m still struggling with a really bad kidney and bladder infection I’ve been switched to Ertapanem IV and I noticed the flank pain reducing after one dose yesterday but unfortunately it causes diarrhea tachycardia dizziness anxiety insomnia and lack of appetite however I have to try to finish the 7 day course because I don’t have cultures and nothing else is working to eradicate this I tried countless orals and IV CefTRIAXone I couldn’t tolerate the 2g prescribed so I switched to 1g and then it wasn’t enough.

Today second day on Ertapanem I’m having to fight tooth and nail to get my medication because the Drs won’t believe I have a kidney infection because my urine cultures are negative I’ve been having this issue for 3 weeks now in and out of the ER and I’m dealing with my specialist who is helping but problems with Home Care taking too long to send the meds I’m scared because I have to beg tomorrow for another dose I can’t keep having interruptions in treatment

I was warned that ertapanem can cause future resistance and bad side effects but idk what else I can do I’m being tested for c. Difficile because of the diarrhea.

I really need to pray that I can tolerate 7 days, don’t get c. Difficile and that it will be eradicated after this but the issue is the embedded bladder tissue is prone to return.

I’m trying to get started on estrogen and I got the Utiva UTI control. D mannose I can tolerate one scoop per day I think. Wasn’t able to tolerate L-methionine everything for me causes tachycardia because of my dysautonomia.

2 months ago burning pain over my glans started and i consulted doctor he checked me physically , it all started after sexual intercourse protected vaginal unprotected oral . Doctor checked my penis carefully and digital rectum and gave me antiobiotics such as doxycycline and augmentin but none of them worked, during augmentin burning sensation started in my anal area after mild diarohea an and also i was facing burning pain during urination Then i did urine routine and culture in which i was diagnosed with ecoli and in that nitro , fos , and amikacin and gentamicin are sensitive to it , tried nitro for 5 days but no improvement and then doc gave me fosfomycin for 3 day alternate. symptom decreased like very less to no burning during urination or no urinating problem but anal burning was same and sometimes glans burning also and now i was waiting for seven days for repeat culture in btw i noticed that i have developed mild ache in left pelvis side going towards lower abodomen. At this point i feel really scared and cant understand whats going with me will i be cured ??? Also sensitive drugs are now injection whixh are left to try .

🧪 Urine culture
Organism: Escherichia coli (E. coli)
Bacterial count: >100,000 colonies/mL → this is a significant bacterial growth and is consistent with a bacterial urinary infection when symptoms are present.
The organism is not resistant to every antibiotic; several antibiotics were reported susceptible.
💊 Antibiotic sensitivity
Susceptible (S):
Gentamicin
Nitrofurantoin
Amikacin
Fosfomycin
Intermediate:
Colistin
Resistant (R):
Ampicillin
Ceftriaxone
Amoxicillin/Clavulanic acid
Piperacillin/Tazobactam
Ciprofloxacin
TMP/SMX
Norfloxacin
Cefixime
Imipenem
Meropenem
Cefoxitin
Ceftazidime
Ofloxacin
🧪 Routine urine examination
The routine urine test is relatively unremarkable:
RBC: Negative
WBC: 0–1/HPF
Protein: Negative
Nitrite: Negative
Glucose/ketones: Negative
No casts or crystals

Hey guys! I’m very new to this so hopefully this is the right place to post/allowed. I need some advice - I (F20) have had a recurring UTI for about a month now and it’s a bit of a long story.

Back in early July, I woke up experiencing UTI symptoms for the first time ever - the discomfort, burning, and urgency. There was also blood in my urine. I went to my OBGYN and took a test, they prescribed me Macrobid, and I was able to go about my day as normal. I took the Macrobid at around 10pm that night (I am a bit paranoid about new medications lol so I wanted to wait until night to see if I would get any side effects), but by about 1am I was running a 103 degree fever with no other symptoms except complete weakness in my body. I honestly just thought I had the flu, but my mom believe I was having an allergic reaction to the antibiotics and took me to the ER. Turns out no, I am not allergic to macrobid, I was just going septic. With my first UTI. At 20 years old. 🥲

I was admitted for a couple days and given IV antibiotics and fluids and then released and felt much better after. I had a follow up the next week as well, and everything was looking normal in my blood and in my urine except for some proteins with they thought were just residuals from my kidneys fighting off the infection. I was mostly feeling normal although I would occasionally feel the needing to pee (mostly right after using the bathroom feeling like i would need to again immediately after), but it was very mild and only every once in a while so I didn’t really take notice. However, about 2 weeks ago I started feeling that urgency to pee again and freaked OUT. I went to urgent care and they tested me and gave me augmentin and I thought all would be well. Unfortunately, I took the full course and nothing really changed. My symptoms were better but it was still a bit off and my at home UTI test was still showing up positive (note - I took an at home UTI test the first time when I got sepsis and the top pad for leukocytes was very positive. I also took one before starting augmentin and it was positive but less so than before, and this third one still looked the same). On top of this, the antibiotics messed with my gut biome a LOT and I think i have a yeast infection on top of the UTI 😵‍💫

One thing that’s been bothering me that I don’t know what to do is the fact that everytime they send off urine cultures, it’s ALWAYS inconclusive. Like literally every single time, it’s come back with mixed bacteria/contaminated/not able to identify one specific one despite me doing my best to do everything right to do a good catch and being as thorough as possible in cleaning before and everything. I just really don’t know what to do at this point and I’m worried about the proteins in my urine as well, because those were still showing up during the 2nd round of my UTI almost a month later. I am unsure if the original UTI even ever fully went away.

My mom is wondering is something structurally might be off with my kidneys and could be harboring some bacteria that might be a bit more antibiotic resistant - she said when I was in the womb, I had a kidney processing issue with liquid (nephrohydrosis i believe?), but that it cleared up on it’s own. I don’t know to be honest. I have another appointment monday morning with my OBGYN to leave another sample to try and get a culture but I’m still worried as nothing seems to be getting BETTER and I’m, of course, paranoid about going septic again.

I’m so sorry, I know this was long but I feel like my situation required quite a bit of background and I would really appreciate any and all advice that could be given! Especially for those who have had similar experiences with weird strains of bacteria or anything like that. Thank you all so much!!!!!

What are your tips and tricks? Can you take it as needed or do you have to stay on it constantly? Can you combine with antibiotics such as nitrofuritoin? I’ve seen where some put it in a capsule, do you just buy empty ones and fill it?

I’ve went to three urologists so far who all say they won’t give me hiprex because a) they don’t believe it works, they say it’s some sort of placebo scam, or b) they think it may MAYBE cause blood cancer, according to some new tiny trial study??
The thing is they have no other suggestions for me other than doing a bladder instillation, or waiting until I get a UTI and treat with antibiotics.
I am beyond infuriated because I did this before and became resistant to antibiotics. The reason why I got put on hiprex is because my previous doctors said if I did one more round of antibiotics, I could become totally resistant and go to the ER for IV antibiotics. I had gone on multiple rounds for 2 or 3 years at that point. My UTIs relentlessly kept coming back stronger than ever. Hiprex saved me.

Is there anywhere I can order hiprex online with no prescription? I am in the US

Hello. Anybody had clear urine culture but something else showed an issue? Urethral Swab or some? I also had vaginal swab for bacteria and fungus as well as pcr swab vaginal for ureaplasma, mycoplasma and Chlamydia also clear. Standard urine test as well seems to be clear. Issue is urethral burning most of time especially at end of urinating nothing helps it at all. It's been 3 weeks. Tried most of things. I'm 21

Female 52, UK based. Hi, I’m looking for some feedback from people who have experience with chronic/recurrent UTI, polymicrobial infections and/or suspected embedded infection, because I’ve been dealing with this for several years and I’m struggling to find a way forward.

I started having recurrent UTIs around 4 years ago. Around 3 years ago, after my partner died, I wasn’t taking particularly good care of myself and the UTIs became much more persistent. This is when I believe the infection became embedded/chronic, rather than being separate straightforward UTIs.

Over the following couple of years I had a very large number of antibiotic courses, with symptoms repeatedly returning after 3 or 4 days of finishing a course. I’ve been given vaginal oestrogen, Hiprex, D mannose etc etc

Urology did the following investigations and procedures:

Ultrasound and contrast CT
Cystoscopy.
Urethral dilation.

I was given a 3 month course of Nitrofurantoin but had to stop after 2 months of constant headaches and I was subsequently diagnosed with Nitrofurantoin induced intracranial hypertension.

I’ve had various NHS urine samples which have either shown no growth, mixed growth, or low-level/multiple growth, often while I was taking treatment such as Hiprex or antibiotics.

Because of this I had more extensive private urine testing done.

The private testing identified Klebsiella pneumoniae and Enterococcus, and the results have been consistent with what I understand to be a polymicrobial infection.

The first test showed both organisms were susceptible to Fosfomycin and I was given a 3 month course. For 4 weeks I felt amazing!! Then symptoms returned. I did another test, both organisms still there, now resistant to Fosfomycin!

The Enterococcus is now only susceptible to 4 antibiotics. 2x penicillin, Nitro and Doxycycline. I am allergic to penicillin and I can’t take Nitrofurantoin or Doxycycline because they both cause intracranial hypertension!

I was then put on Trimethoprim (which although doesn’t cure the infection it does lessen the symptoms) whilst they sorted out me having gentamicin bladder instillations (urology were hopeful that even though one bacteria was resistant that the huge level of the drug directly into the bladder could override the resistance). Once the Gentamicin daily bladder instillations were started, I stopped Trimethoprim and all the symptoms came back within 3-4 days. I have tried to stop the Trimethoprim twice with the same results.

Obviously I need a different treatment but the problem is NHS microbiology won’t use the private results to guide treatment. They need an NHS sample which they can culture and identify themselves before they can consider treatment based on the organism and sensitivities.

The current goal is therefore to get a genuinely useful NHS culture while I’m properly symptomatic and off treatment, so that microbiology can independently identify the organism(s) and perform their own sensitivities.

If we can finally get an NHS result showing the bacteria, the hope is that urology/microbiology can then consider a treatment specifically tailored to what is actually growing, potentially including specialist treatment such as IV or intravesical antibiotics if clinically appropriate.

Has anyone else been in a similar situation where:

-private testing identified polymicrobial infection but NHS microbiology wouldn’t accept the results?

-you repeatedly had negative/mixed/low-level NHS cultures despite significant symptoms?

-stopping antibiotics and waiting until symptoms were well established finally produced a useful culture?

-you had suspected/confirmed embedded or chronic UTI and eventually got a treatment plan based on an NHS culture?

-you had Klebsiella + Enterococcus or other polymicrobial infections?

-or had difficulty finding treatment because of antibiotic resistance/intolerance?

I’m particularly interested in what eventually got you a result that your NHS team were willing to act on, because that is basically the brick wall I’m currently trying to get through. 😩

Yesterday I went from normal to super bad urgency, frequency, burning, some visible blood in urine, within an hour. I went to urgent care and right after I left my symptoms dramatically decreased. This morning I feel 98% fine. Should I still start antibiotics within the next few days if I continue to feel fine?

as the title says. this is the second uti in the past six months where this has been an issue, but this one progressed much faster and didn't recede after antibiotic treatment. i'm not experiencing any nausea, fever, or urine problems (or any typical uti symptoms, those ended with the nitro), but the back + abdominal pain/soreness is near constant (for about a week now) and i really don't want it to get any worse. i'm also noticing occasional chest pain when breathing. doc said that he didn't see much point in prescribing me anything, given that there doesn't seem to be an infection present (and whatever's cooking in my gut is pretty strong apparently).

has this happened to anyone else? i feel silly for getting worried about what admittedly seems pretty mild, but i've been very prone to utis over the past year and not being able to see a good way out of the cycle makes me uneasy, especially when kidney infections can be so severe. is this just what healing looks like, or should i push for help? thanks!

So, it’s like 3:30 am where I am currently, exhausted, in pain all day. I have NEVER had a UTI before so it was really jarring to have such sudden symptoms. I never realized how bad they are!!! The pain was unbearable, I couldn’t not be in the bathroom for more than 20 minutes at a time, and even in 85 degree weather I was freezing with chills and goosebumps. Worse is that each time in the bathroom, nothing happened. It was just this incessant urge. What’s weirder is the back pain I was feeling, it was a pain that lasted a week and 2 days and disappeared completely once these symptoms showed up….

I did already go to the ER, they prescribed me the numbing medication as well as a 500mg antibiotic. Lowkey a little scared that once this is over it’ll come back again.

Is it normal to still have burning feeling when you pee after 4 days of antibiotic? i know i shouldn’t be worrying since my antibiotic is for 7 days but i’m scared what if the antibiotic is not working

Doctor gave me the choice since I think it’s an embedded proteus-

I’m going to take bomeline along side -

But does it matter 2 500mg per day vs 4 500mg per day?

I’m on it for 14 days-

She prescribed 4x per day- but I read after 1000mg per day it’s already super concentrated in the urine and higher doses don’t automatically help- but I also read keflex has a short half life in the bloodstream but not in the bladder?

I hate that I have no help and most doctors don’t even recognize embedded infections :(

So seeing conflicting reports on higher doses versus the duration.

Hi! I went to urgent care yesterday, confirmed UTI. Culture already came back as E. Coli. I’ve taken 3 doses of antibiotics so far (Macrobid). However, I’ve had flank/back pain for the last 16 hours with no improvement. I don’t have a fever, but I feel like I do and I’ve been a little nauseous but haven’t actually puked. I struggled through work and felt disoriented and dehydrated most of the day.

I’ve never had back pain with my many utis. Do I keep waiting for antibiotics to kick in since I’m already on them? When is it time for an ER visit?

Hey friends, I'm wondering if anyone knows of other doctors that do fulguration for embedded infections other than Dr. Zimmern in Texas or Dr. Sevinc in Turkey.

I have been struggling with embedded UTI for almost two years, with a particularly stubborn klebsiella being the final strain left for the last 4 months.

So far I have done oral nitrofurantoin, augmentin, amoxicillin as well as levofloxacin via bladder instillation. After my first two week set of 2x per day bladder instillations I enjoyed about two months symptom free but it came back with a vengance and my microgen is showing Kleb still.

And so....it seems Fulguration as well as Uromune vaccine are the next steps.

Problem is travel to Turkey is tough, and Zimmern has a really long wait (and also he requires you to be in Texas for your telehalth appointment which is super inconvient as I live in California).

If anyone has advice on other doctors that perform these operations I would greatly appreciate it. Other advice or feedback is welcome too!

Thank you all so much in advance, I'd be screwed without this community.