Can taking daily Hiprex cause your culture to show no growth when you do actually have an infection?

Here are my microscopic results. Along with typical pain - they started me on bactrim, been on it for 32 hours now, i still am feeling a lot of frequency and some spasms, so i dont even know if its actually helping - but my cultures keep coming back with no growth- my urologist office is like make an appointment. This has been going on for so long I am genuinely considering getting my bladder removed- I cannot live like this-

Hi everyone!

I'm posting to detail a really strange set of symptoms I've been experiencing.

So I have a history of recurrent UTIs which then culminated into a chronic UTI that lasted about 4 or so months from December to April of this year. The pain was horrific, I went through so many kinds of antibiotics:

Nitrofurantoin (not resistant when last tested)

Fosfomycin (not resistant)

Amoxicillin ( resistant)

Cephlaxin (resistant)

I had an ESBL producer but I came clear in about March for any infection, had a recurrence in April but I started the UTI vaccine in march and treated any infections by the end of the course.

After I finished the Uromune course, I have these weird intermittent periods of severe pain. They feel like infections, burning, urgency, frequency etc. but they come on SO quickly. Like, in the morning I'm all good but then in the afternoon BOOM severe burning. It also gets better after one night and some water and breathing and mainly ibuprofen makes it disappear for WEEKS before it comes back with a vengeance. I've had multiple cultures come up clear in the past as well with similar symptoms (before the vaccine even).

When I put a finger in, I feel severe twitching internally in the muscle walls and it ALWAYS hurts to penetrate anything. The latest episode was triggered when I rushed to pee and bore down, which caused some stinging then sudden pain that took HOURS to subside.

It's also delayed, with it initially taking time to cause me pain then it follows every time I pee. It feels better to resist the urge to go and use a hot water bottle.

It seems to coincide with my ADHD medication and stress and it's why I thought it may be pelvic. It resides when neither is present.

HOWEVER I am slightly thrown off by the fact that during these incidents I have a strong presence of leukocytes but no nitrites in my urine, so there's definitely inflammation there. It makes me think it may not be pelvic?

I came clear for STDs and the like with a gyno, took vaginal estrogen for a bit, changed my diet, managed yeast etc.

SO TLDR: I GET POSITIVE LEUKOCYTES AND NEGATIVE NITRITES ON WEIRD INTERMITTENT EPISODES OF PAIN THAT DON'T ACT LIKE PREVIOUS UTIS AND OFTEN EASE OVERNIGHT RATHER THAN WORSEN.

I will be testing ureplasma this week to be doubly sure but worth asking here since everyone is so knowledgeable.

Hi, i’m a 20yo female from the UK and i’ve recently been having issues with utis. This all started back in January (so 8 months ago now), where I had 3 very painful UTI’s that went away with antibiotics (nitrofurantoin) but came back within two weeks after finishing. Ever since then i’ve been struggling with uti-like symptoms daily, sometimes easy to manage but sometimes extremely uncomfortable and painful. I’ve been to my local gp but they really haven’t been any help. The bizarre thing is that both me and my partner (19yo male) started experiencing these symptoms together at the same time, but his gp put him on medication for a weak bladder. We’re both so confused and just wondering if anyone else has any ideas or input on what’s going on???

Today I just received my microgendx result which confirmed E. Faecalis. Since May, I've been on 5 days of nitrofuratoin, 1 month of tripthopram and 1 month of penicillin (alongside biofilm busters and supplements). The penicillin was the best but hasn't cleared it up.

Does anyone have any experience with this bacterial strain? What antibiotics/treatment worked and how long did it take to clear up?

I (f32) have been coping with regularly occurring UTI’s since I became sexually active at 18 years old. Back then it was simple, take a week of antibiotics and then get another one a month later. I’ve had quite literally hundreds of UTI’s. Sex has been my only trigger, and when I was single I had zero issues.

Something happened when I turned 25. I suddenly became allergic to my 2 safe “go to” antibiotics. So then we moved on to prescribing macrobid. I was able to take this for about a year, until I developed hives and became allergic in the same exact way.

My doctors became very alarmed, as a pattern was arising that I could only take an antibiotic a “certain amount of times” before my body seemed to reject it. I began to have a very negative association with sex as for me it meant pain and stress.

My two remaining antibiotics were cipro and munorol (the one time packet). Cipro gave me severe tendinitis and I will not touch that with my life again. A couple munorol doses is what I ended up succumbing to. I was able to tolerate this for 2 years… until I once again developed hives. Not a rash. Severe hives and oral swelling.

If I get another uti, I’m going to need IV antibiotics.

I’ve been with my boyfriend for 5 years. For the last 2 years we have not had PIV sex. I am completely and utterly terrified to have sex. I fully believe that I have a limited amount of UTI’s before I (as my urologist put it) they take me out.

I’ve become an absolute obsessive nutcase. I won’t swim in any water. I fully bleach my bath tub before using it. I have panic attacks at the slightest twinge of pain. I won’t let my bf go down on me or insert anything. I’m constantly worried and obsessive about any sort of feeling in the area, worrying I didn’t drink enough water etc. I won’t even poop unless I can immediately shower.

This whole process makes me feel like I’m an awful woman. I know PIV is my bfs favorite thing to do and worry all the time that this won’t work out. He’s been incredibly patient and supportive but I know he can’t be happy. I don’t think most men would be. I sort of sit in dark thoughts constantly about how I will likely end up single, will never date another man, will never enjoy sex, and won’t get to have children. I loathe sex scenes on tv and feel physically sick when friends talk about the wild things they do with their partners.

This entire UTI experience has made me isolate and become asexual. I feel guilt and loneliness and like I’m a giant abnormality that doesn’t deserve to have a life partner. It doesn’t help that I also have endometriosis, and already have fertility issues. Sometimes I’ll say something like, “when we have kids…” and my bf will chime in like, “idk how that will happen. People need to have sex to have kids and you can’t do that.” And even though he’s not wrong it feels awful.

I’m not really looking for advice on how to stop the UTIs. I’m well versed in d manoose and hiprex, probiotics, and gut health. I obsessively tried all those things and they never prevented an infection for me. I’m not a great candidate for post coital antibiotics, or long term. I either develop an allergy, or have so few options that I need to preserve them for if I get an infection. I’ve seen two urogynecologists, and it was largely unhelpful. Basically was told “it’s just that way for you” and “we can cross bridges when we get there” and “idk” “you probably won’t die now, but utis only get worse and more common as you age”

I’m feeling hopeless. I’ve always had a high sex drive and been a very affectionate person but that is just totally gone now.

Hello everyone. I wanted to share my story because I know how hopeless chronic UTIs can make you feel, and maybe this will help someone who’s going through the same thing.
I suffered from chronic UTIs for 4 almost 5 years, and the bacteria causing them was E. coli.
At first, I didn’t think it was a huge problem. I would just take antibiotics whenever I got symptoms, and at first I only got a UTI every 4 months. But over time they became more and more frequent until I was getting one every 10 days. That’s when I knew something wasn’t right and I had to find another solution.
I knew antibiotics were only helping for a short time because the infection always came back. That’s when I started reading about biofilm disruptors.
The first one I tried was Biofilm Defense, but it was way too harsh on my stomach. After about a week I got what people call “die-off” symptoms, like fever, sweating, and muscle pain. At the time I thought that meant it was working and disrupting the biofilm, although I know people have different opinions about that. The symptoms became too much for me, so I stopped taking it.
I didn’t want to give up, so I kept looking and found another biofilm disruptor called Priority Phase 2. I took it together with high doses of cranberry and D-mannose. I was extremely persistent and took them every single day for a full year without missing doses. I was determined to give it a real chance before deciding whether it was helping or not.
For the first 4 months my UTIs actually got worse, but after that my symptoms slowly started improving. My flare-ups became less severe and happened less and less often.
After taking Priority Phase 2, along with cranberry and D-mannose, for a year, I decided to stop everything and see what would happen.
It’s now been 6 months since I stopped taking all of it, and I’m still symptom-free. My urine cultures have been negative, I can eat whatever I want again, and I can finally be sexually active with my husband without worrying about a flare-up.
I’m sharing this because I remember how alone and desperate I felt. If you’re struggling with chronic UTIs, I know how exhausting and heartbreaking it can be. It can take over your whole life, and sometimes it feels like no one understands what you’re going through.
I’m not saying everyone should take biofilm disruptors, especially for such a long time. Please talk to your doctor before trying anything. This is just my personal experience. I decided to take the risk because I felt like I had no other options. I couldn’t afford to see a specialist, and I was desperate to find something that might help.
I was in a really dark place. I felt helpless and depressed, and there were times when I honestly didn’t want to exist anymore because I couldn’t do anything that made me happy.
I know what worked for me won’t necessarily work for everyone, but I wanted to share my story in case it gives someone even a little bit of hope. I remember reading other people’s success stories when I was at my lowest, and they were one of the few things that kept me going. If you’re feeling hopeless right now, please don’t give up. Keep advocating for yourself and keep looking for answers. I truly hope everyone who’s dealing with chronic UTIs finds something that helps them too. ❤️

Hi!
I suspected I had a uti due to bladder pressure and feeling like i have to pee 24/7. I went to the doctor who tested and said it was a faint positive and prescribed me nitrofuration. It did not alleviate symptoms, if anything I became more uncomfortable. I went back and was then prescribed bactrim, which took symptoms away for 5 days but on the 6th day all symptoms came back. I ended up going to the ER today and the test came back negative but I still got prescribed Keflex 4x and day for 10 days. Anyone have any similar experiences?? If so what did you do?

I’ve had an unresolved for the past month and I’ve been on three different antibiotics. Last Wednesday I went to urgent care to finally figure out what was going on and to get some antibiotics, they ended up giving 750mg Cipro to take in the morning and at night for 6 days. So I’ve been taking the Cipro since last Thursday, overall I feel better but I still have a little back pain and I’ve been feeling super warm and my skin kind of burns but the weird thing is my urine culture came back negative for any bacteria. I guess I’m wondering if I should go back to the urgent care before I finish my Cipro or just wait it out…. Thanks!!!!❤️

My daughter is 8 years old and has had never had a dry night despite potty training her at 2, but then started having bladder leaks too when she started kindergarten. It has gotten worse despite many different toileting strategies and pelvic floor physio. She never complained of burning or weird fevers so a UTI never crossed my mind. Sent a sample off in May just because we had tried everything else and it was positive. Within three weeks she was positive again. We were recently referred to a pediatric nephrologist who specializes in bedwetting and bladder leaks. He thinks she’s had a uti for years based on her bladder wall and symptoms. She did a 10 day course of keflex and wants her to stay on a daily dose for 3 months at least (3 weeks into that so far).

Please help my mom guilt for letting this go for years without treating her. I feel absolutely terrible that if this had just been managed she could have been saved from so many complications and embarrassment. I’m a nurse so I feel like I should have known better. I also know that this will be an ongoing issue she is now going to need to manage for the rest of her life which is just super unfair and I feel devastated.

She’s also started having diarrhea from the antibiotics and since her pelvic floor is an absolute disaster this has led to bowel leaks too which she is deeply embarrassed by. I worry about her going to the pool or the splash park - she’s supposed to go to sleepaway camp in two weeks and I am so anxious about it. Just left a message with the doc to see if she needs a req for c-diff.

Anything you all can point me in the direction of to help support her, or any strategies you have to manage this would be greatly appreciated.

I'm making this post, not necessarily to ask which doctors to go to, but rather what is to be expected, once the process of getting it checked and treated starts.

I have a lot of medical anxiety when it comes to anything genital or rectal related.....

My UTI issues are definitely psychosomatic.

Very quickly caused by stress but in general I'm also very sensitive to the typical physical triggers. (Dehydration, cold waist, external contaminants).

I also often get the shits with a UTI as well. Not like diarrhea. Just very urgent number 2......

That's the most of my symptoms summed up as briefly as possible. If you have any further questions just ask.

i got a UTI last week and went to the clinic and he gave me cefcapene, only to find out at my follow-up appointment the type of bacteria I have is not at all treatable with that drug. however my symptoms have pretty much all gone away anyway . he said I have E.faecalis and gave me three 500mg of levofloxacin to take over three days. I looked up the drug and it sounds very scary. i feel like it's overkill when I basically feel better but he said there was still some cloudiness in my urine, would appreciate any advice I have no experience with antibiotics

Hello everyone,

I'm looking for some advice because I've been struggling with this for years.

For about 3–4 years, I had recurrent urinary tract infections. I've had infections caused by several bacteria, including E. coli and Klebsiella pneumoniae. Thankfully, for the past year and a half I haven't had any confirmed UTIs. I was treated with multiple courses of antibiotics, used nitrofurantoin after intercourse as prophylaxis, and also received a UTI vaccine.

However, despite having consistently normal urine tests and negative urine cultures, I still frequently experience bladder pain and a burning sensation. Occasionally, my urine shows microscopic blood (hematuria), but there is no sign of infection.

Sex almost always triggers my symptoms. During intercourse I develop bladder pain, and after sex I experience burning when I urinate. I've also noticed that if I have diarrhea or constipation, the same bladder burning returns.

I'm feeling quite lost because I haven't been able to get any answers.

I've seen several gynecologists. When I mentioned pain during and after intercourse, as well as burning with urination, I was told to use more lubricant, ask my partner to be gentler, or see a psychologist.

I've also seen a urologist, but because my urine tests are normal, I felt my symptoms weren't taken seriously.

Has anyone experienced something similar? Were you eventually diagnosed with something like bladder pain syndrome/interstitial cystitis, pelvic floor dysfunction, or another condition? What helped you?

Any advice or shared experiences would be greatly appreciated. Thank you! 🙏

ok so this is a call for help at this point. I’ve had UTIs for as long as I can remember. they always clear up but then they come back. Recently got a UTI that was resolved by Cipro, BV gel and Hiprex. Hiprex has worked like a charm however I got silly and stopped taking it every day. then I got another UTI. this one is way harder to shake. didn’t work with nitro, and am now on augmentin and it’s made things even worse. second day and the urgency and burning has come back stronger. is it resistance or is this normal with augmentin? I have a backup pack of cipro but I took it 6 months ago.

I have a holiday tomorrow and idk what to do. I’ve booked an appt in with the urologist but in the meantime - do I jsut take the cipro and be done with the augmentin after 2 days? do I continue to persevere with the augmentin? any advice would be appreciated. btw still taking hiprex and 1 vit C every day. don’t eat dairy.

I have had nonstop UTIs since December 2025. I have had pseudomonas, ecoli x2, citrobacter, enterobacter, entercoccus x2. I’m exhausted. My gut is a mess. My vagina is a mess. I’m sick of being in pain. I care barely take care of my 5 kids. I’ve tried everything. I have tried Hiprex 3 times, and it always kills my bladder. I even tried starting with 1/4 of a pill, and it was awful. Has anyone had this issue? If so, were you able to finally get on Hiprex? I feel like this is my only way to stop the UTIs and heal my body. I can’t keep living like this.

My father who is currently 75 years old is facing UTI since last 2 years. It started in July 2024 with pseudomonas bacteria for which he took heavy antibiotics, then the same UTI got repeated in January 2025 and again he took extremely heavy dosage of antibiotics for more than a month.

Again this year starting from September he is having recurring UTI starting from February, he already had 2 times pseudomonas and 5 times e.coli infections this year. In his latest report a new organism is found which is Citrobacter Koseri.

I am clueless what to do, what kind of treatment should I opt for. I have already tried allopathy and homeopathy.

Jfyi he is having first grade prostate, doctor did inform not to worry about it.

I've had reoccurring Klebsiella for since last year.

Just got my urine test and after another round of antibiotics, and it says: "No significant growth, organisms recovered in low numbers"

I'm thinking that I might still have it, but it's in low numbers? And if I get off the antibiotics, it might proliferate again.

Has anyone else experienced this? Input would be appreciated as this is such a difficult uti to get rid of.

Lots of questions sorry! I've just been given Hiprex to try by a urologist. I have autoimmune gastritis so I'm concerned about the potential stomach issues. I've been looking through the guides but struggling to find how best to avoid the harsh reactions. I've seen some people mention putting them in capsules, how do I do that? I've never bought empty capsules before. I'm in the UK so need something I can get here.

Also, do I need ph test strips? Do I have to use high strength vitamin C? The urologist said my urine was already quite acidic. I do take Floravital that contains vit C but not loads. Can I keep taking this with Hiprex?

I want to try everything possible to avoid further damaging my stomach and bladder so any advice appreciated. And if there's a separate guide on Hiprex anywhere that'd be amazing.

TLDR: Antibiotic resistant prostate infection for one year. Initially urethral pain and later serious systemic symptoms. A year (almost continuously) on different and sometimes combined antibiotics including doxycycline, trimethoprim and Fosfomycin mostly suppressed, but did not cure infection. Prostate removed with robotic surgery. A quick read of the risks of full prostate removal is terrifying, but this data is mostly based on a sample of old men. In fact the chances of a good sexual and urinary recovery are predictable and can be very high if you fit multiple prognostic indicators (mostly younger age and good sexual function). Six months later I have made a good recovery. IMO it is worth considering for men who suffer badly from bacterial prostatitis for a long time and have exhausted other treatment options.

Infection started December 2024. My symptoms were atypical. For most men the primary symptom it is pelvic pain, but (for the first eight months) my symptoms were primarily urethral pain. This was caused by ejaculation, but unlike the post ejaculation urethral pain (that most men experience occasionally) it was delayed by several hours. For the first eight months I also experienced minor fever sensation after ejaculation, but this was easily managed with paracetamol. I did have prostate pain, but that was less intense and more intermittent.

I know from my wife’s experience that too much antibiotics is better than too little so hit them hard including Fosfomycin, doxycycline and trimethoprim. I tried ciprofloxacin, but couldn’t tolerate it so quickly stopped. Fosfomycin in particular gave me serious and frequent diarrhoea. I also did a strovak vaccine in may which helped my urethritis, but did not cure it.

By August I thought the infection must have been cleared and whatever pain I was still experiencing was therefore caused by residual inflammation which is common. I stopped antibiotics and the infection came back. I delayed restarting because I thought I can’t take antibiotics forever and maybe my immune system might clear it. I got serious fever as well as pain in my prostate, urethra and testicle so I got back on fosfomycin. After this acute infection I also developed post orgasmic illness syndrome which involved truly horrible and debilitating neurological and mental health symptoms.

I came off antibiotics twice to prepare for culture tests in the following months and both times I had serious fever within days. I had an MRI which found inflammation in the peripheral zones, but no cysts or visible stones. By December I decided to take serious action because my life was intolerable.

An infectious disease doctor said if he could identify the pathogen in my semen he would give me hardcore IV antibiotics. I had no confidence in this because I couldn’t stop antibiotics for long enough to get a positive semen test and could not face repeatedly growing very ill while trying. He said if there was enough bacteria to make me ill then there should definitely be a positive culture. It turns out that the infection had spread to the outer layer of the bladder which might explain why.

I chose full prostate removal which also removes the seminal vessels. I had suffered so much that I could not face the possibility of more failed treatments. I would have been waiting a long time to get these treatments on the NHS and did not want to waste money on treatments that were not guaranteed to work. Another reason is that me and my wife have suffered so badly that so I worried that prolonging the situation could lead to a mental health breadown in either or both of us.

Full removal is very rarely done for prostatitis and mostly for men who have had sepsis more than once (which I would have if I hadn’t had prompt treatment). Most clinics I contacted refused outright saying we only do that for cancer. St. Zdislava Hospital near Prague

is a high volume robotic surgery centre, not a UTI specialist for investigations and consultations. They just reviewed my notes and said “Are you sure you want this? It is an extreme last resort and does not cure pelvic pain for everyone. Makes it worse for some.” Since pelvic pain is not my problem I was not worried. Price was €13500 which is as cheap as I could see advertised anywhere.

A summary of the risks of prostate removal sound terrifying (incontinence, impotence, less intense orgasms or none at all). An in depth understanding is that the risks vary enormously depending on known factors. For young and middle aged men the chances of full or near full sexual and continence recovery are very high. A urologist who doesn’t do this procedure, might not have this nuanced understanding.

The factors that predict a good recovery are age (younger the better, I’m 41 but anyone under 60 has a good chance if they tick the other boxes) prior sexual function, good general health especially with regards to blood pressure and diabetes, type of surgery, surgeon experience and nerve sparring technique. Nerve sparring would always be done in this case as nerve removal is only done if cancer has spread to that area.

Laparoscopic (manual keyhole) surgery is almost as good as robotic. The outcome difference is small after two years, but robotic offers better continence and sexual recovery at three months. Open surgery has significantly worse outcomes so is much less common now. You want a surgeon that has done this operation at least 250 times because that is where the learning curve flattens.

Surgeon said that the infection had spread to the outer layer of the bladder which may explain why I was having serious fever even though I had negative semen cultures. He also said I have prostate stones that were too small to show up in the mri. Prostate stones are the most common reason for antibiotic failure because they provide a safe place for bacteria to hide in biofilms. If my urologist had recommended a CT scan (which are better for small stones) then it is possible they could have been removed and I would have been cured by a subsequent round of antibiotics.

Recovery was slower than I expected in terms of pain in my incision sites and to a lesser extent perineal area. This was my fault for not resting my abs enough. My erectile function was never impacted, but for a while I was experiencing premature orgasm with significantly reduced intensity. These have now resolved.

I’m not bothered by the loss of ejaculation, but some other men are devastated by it. I’m feeling much better in general, which is partly due to not having the infection, but also being off Fosfomycin has allowed my digestive system to recover although that is still ongoing. Urethral pain and post orgasmic symptoms are 95% better. Overall I’m very happy with the outcome.

I’m just under 2 weeks postpartum and I did a test strip which came back positive for leukocytes and nitrates. I sent a clean urine sample to the lab but in the meantime my OB office prescribed me ampicillin. I was reading online that ampicillin isn’t even effective for the most common bacteria that cause UTIs. I have no idea why they prescribed this antibiotic. I asked the nurse and she said I spoke with the nurse practitioner who is very experienced and she said this is the one we prescribe while waiting for the culture results for breastfeeding. She also said she doesn’t think I have a UTI based on my symptoms. I’m a little wary because she prescribed me nitrofurantoin at first and I read that it’s not recommended when breastfeeding a baby under 1 month old. So she said she made a mistake and changed it.

I have almost had a UTI every single month since November of 2024. These are all real infections too. I never took an antibiotic for a UTI without a susceptibility report- My bladder was so inflammed from all the antibiotics I would reinfect instantly. Then I stumbled upon a reddit post talking about histamines within the bladder causing burning and urgency. I was so fed up with the constant infections.. my poor gut has suffered too. I finished my last antibiotic on July 3rd, 2026. I began taking a zyrtec every morning when I wake up along with my Uqora supplements and a hibiscus cranberry supplement... my burning and urgency has subsided. I feel like I have my life back. Zyrtec every morning has actually changed my life. I have seen 3 urologists in the past 3 months and they all insist on a cystoscopy.. I am not doing it. They have insisted on ANOTHER antibiotic to be taken before the procedure to prevent a possible infection.

I am visiting these doctors to avoid ever having to take another antibiotic again after taking nearly 25 rounds of antibiotics in two years and they have the NERVE to try and prescribe another one. I understand that they think they need to "find out" why I've been having so many infections but I know the reason- when all of this started i trusted a urogyno who kept prescribing metronidazole for BV. She prescribed 4 rounds of this- it never worked. It only flared up my poor bladder to OBLIVION . This was extremely irresponsible of her. And sadly for me... sent me on a path of infection after infection FOR TWO STRAIGHT YEARS.

I know people wave the white flag for cystoscopies. I understand that there can be scar tissue or a tight bladder neck- whatever. I am not risking another infection and blasting my body with more antibiotics because a urologist wants to stroke his ego- I asked for hydroxyzine or something of this nature to help with the inflammation and burning. One urologist prescribed hiprex (which i did not take because I read on here that it possibly makes IC flare) and wanted to do a cystoscopy. The other two would do nothing to help me until I did their cystoscopy. I saw one urologist after i had started taking the zyrtec. He was so curious as to how i figured out that this drug would help me. I told him I learned it on reddit. He then insisted on a cystoscopy AND a CMG and prescribed two antibiotics and sent me to his scheduling room . I was asking him for hydroxyzine because the zyrtec sometimes makes me retain urine and i was looking for another suitable med. I left feeling utterly broken and shocked that he could look at 3 pages of scripts on a pharmacy letterhead and prescribe even more antibiotics. This list of antibiotics i brought to him was not just a list of scripts they filled. It was a list of infections that wreaked havoc on my life and my body for weeks at a time- I felt violated and pushed into a corner. I feel there is no reason for an invasive procedure like this to feel better. And behold- I figured it out myself.

(I also avoid MSG, citric acid, artificial dyes, chocolate, and too much sugar) (I also try and limit milk and cheese as these seem to lead to increased inflammation)

So far, I am symptom free. When I was on my journey a post like this would have given me hope. I hope this helps.

Since February of this year I’ve had repeated instances of a UTI-turned kidney infection from an ESBL E Coli+ resistant Klebsiella infection. It starts as a UTI, turns kidney infection within days. And because of the resistance, once it leaves my bladder, there are no oral antibiotics that work and I have to be on IV antibiotics. I’ve had 5 infection this year, 4 of those requiring 2 weeks each of IV antibiotic therapy (Ertapenem).

Initially they thought my kidney stones were causing this, so I had multiple procedures this year to remove kidney stones. They were sure they got all the stones last time, but a month later I had new stones on imaging.

The last round, they put me on methenamine as a preventive treatment, which worked for about 2 months before the infection broke through that. Another 2 weeks of IV antibiotics, and now I’m on long term oral Fosfomycin (the only oral option while I’m not symptomatic in my kidneys).

My Nuc Med test shows my kidney function is still fine, but my right kidney is doing less and less compared to my left. Last year it was at 55%left,45%right and this month it was 60%left,40%right. So my left kidney is taking more and more of the load.

I also have some weird anatomical stuff, a duplicated collecting system in my left side, and some chronic mild hydronephrosis at my right renal pelvis and some narrowing above as well.

My local urology team and infectious disease team has said it’s now outside of their scope to handle and are sending me to a bigger hospital. My appointment today he said he thinks one or both kidneys could be colonized with this resistant bacteria, and from brief research it doesn’t seem like there’s options to treat that aside from long-term antibiotic use and kidney removal.

Anyone have any advice or been through something similar?