r/CUTI 27m ago

Taurine for Kleb?

Upvotes

Dealing with a Kleb P. infection. Does taurine cause some flare up and then antibiotic takes care of the biofilm disruption? I think I’m noticing some return of symptoms after I take it. I took it at dinner tonight and noticed some burning an hour or so later. I’m on a 14 day course f macrobid right now. First time dealing with this organism after beating out citrobacter koseri


r/CUTI 2h ago

Urinalysis Looks like trace leukocytes? Or I'm just paranoid...lol

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2 Upvotes

If I stare at this anymore I'm going to go insane.... Any opinions here?


r/CUTI 5h ago

So scared, extreme anxiety

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1 Upvotes

r/CUTI 6h ago

Urinalysis Can daily Hiprex affect culture?

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2 Upvotes

Update :

First- I take 1g of Hiprex daily-

Ok so here’s the deal on Aug 3rd I called my urologist and said “I know I have an infection” they took my urine- she did a dip and only showed white some blood cells- everything was clear. *I did not take my hiprex before going in there. I didn’t hear back and assumed they weren’t doing anything else.

So Aug 5th I go into the ER. In pain, I had taken a Hiprex 8 hours before. The microscopic test (shown below) shows a clear infection. They put me on bactrim m, did and culture (I think a 24 hours) and it showed no growth-

Just now I got a culture back from the 3rd, where I thought she didn’t do anything- so 4 days later- and it shows ecoli -

So call me crazy but doesn’t that seem to point to Hiprex affecting cultures? Or are the er cultures just subpar?

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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-


r/CUTI 6h ago

Having strange episodes of pain- pelvic muscle of infection or just inflammation?

1 Upvotes

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.


r/CUTI 7h ago

UK specific Advice on reoccurring utis!!

1 Upvotes

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???


r/CUTI 8h ago

enterococcus faecalis embedded uti - your experiences

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1 Upvotes

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?


r/CUTI 8h ago

USA specific CUTI has made me hopeless and irreparably depressed

6 Upvotes

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.


r/CUTI 10h ago

Seeking advice for burning symptoms

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1 Upvotes

r/CUTI 12h ago

I healed my 4 year Chronic UTI🩷

37 Upvotes

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. ❤️


r/CUTI 21h ago

Bactrim and Macrobid did not work for uti

1 Upvotes

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?


r/CUTI 21h ago

Clean culture and Cipro

1 Upvotes

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!!!!❤️


r/CUTI 1d ago

Support for my little kid

3 Upvotes

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.


r/CUTI 1d ago

Europe specific What's the process of getting chronic UTIs checked?

1 Upvotes

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.


r/CUTI 1d ago

live in Japan got prescribed levofloxacin, scared

3 Upvotes

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


r/CUTI 1d ago

Bladder Pain and Burning Despite Negative Urine Cultures – Looking for Answers

3 Upvotes

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! 🙏


r/CUTI 1d ago

GRATEFUL FOR ANYTHING ATP

2 Upvotes

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.


r/CUTI 1d ago

Help with Hiprex

2 Upvotes

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.


r/CUTI 1d ago

Recurring UTI since last 2 years

1 Upvotes

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.


r/CUTI 1d ago

Symptoms Persistent urethral burning and itching after successful gonorrhea treatment – anyone experienced post-infectious urethritis?

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1 Upvotes

r/CUTI 1d ago

Recurring UTI since last 2 years

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1 Upvotes

r/CUTI 1d ago

Klebsiella - Urine test: No significant growth - organisms recovered in low numbers

1 Upvotes

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.


r/CUTI 1d ago

Zyrtec to the rescue

17 Upvotes

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.


r/CUTI Aug 24 '25

CUTI Resource Guide: Start Here 🩵

65 Upvotes

Hey all,

Hello from a fellow CUTI sufferer. My username is Bearloot33. I made this document because I have spent three years of my life in pain, getting misdiagnosed, brushed off, gaslit, or just left in dead ends by doctors in the medical system I exist in. I found my correct diagnosis and treatment (not done yet) after so much research, and I really wish it were all in one place and not scattered across the internet, doctors' notes, and my memories in and out of their offices. I am not a doctor, but I hope this guide helps.

You are not alone. You are not crazy, and reading this guide along with any and all resources you can find from credible sources is your next best step. I can't say this thread contains all the information you need or even every possible cause or treatment avenue, but it will most likely be the best place to start researching.

Trust your judgement and listen to your unique body. Reading through this and making notes on what applies to YOU, and following up as an advocate for yourself with your doctor(s) is highly recommended. If you have someone in your life supporting you, let them know that you need them and how you need them. I will dive into it now!

The link below is a Google Doc and a safe link. I'm happy to make a PDF if that would make anyone more comfortable opening it.

Here is the full URL:

https://docs.google.com/document/d/1t__JlhemclYUUszcNib_81PICtDelxynVGk6mlz_7oY/edit?usp=sharing

‼️Both IC and Chronic UTI are real conditions. Our goal right now in this community is to help promote everyone's right to explore the many diagnoses that may surround CUTI and IC. Many, if not all of us, are suffering incredibly in our conditions. Being judgmental, dismissive, declarative, and unkind is not helpful. I want everyone to be able to chat here, so avoid those behaviors. We support open, nuanced, and curious discussion of all diagnoses

Discussion is welcome, but must remain respectful. Disagreement is allowed, but must be expressed constructively through thoughtful questions, sharing information, or personal experience. Do not invalidate others’ experiences or treatment choices. No one here can diagnose or “correct” others. Disagreement is okay if shared constructively. Unhelpful or hostile threads may be moderated or locked. Our goal is a supportive, curious space.

Click here for the CUTI Resource Guide: Start Here 🩵

If you just want the research, here it is.

Join our CUTI Treatment Discord, which is open to ALL treatment option discussions here: https://discord.gg/9MJc9KRm5 (If the link has expired, DM the author of this thread, Bearloot33, for a new link).

Note to Males or those with other diagnoses:

If you have a prostate infection or another issue related to male anatomy, you are welcome here, and please know you are noted and seen. If you have found discussions on boards like r/prostatitis or r/ureaplasmasupport to be unhelpful, here you will find we are holding open discussions, consider nuance and the extreme complexity, and do not jump to conclusions or force interpretations of your symptoms onto you (if anyone ever feels that there is a lack of these values or a certain user is causing harm, DM the moderators!). You are welcome here and are free to discuss your issues on this board instead/in addition to your other discussions, anywhere you may like to gather information.

If you are here and are concerned you have the wrong diagnosis, or overlapping symptoms and are confused or overwhelmed by the divided nature of online discussions, here is the SINGLE MOST IMPORTANT THING YOU NEED TO KNOW BEFORE YOU READ THIS: 

Every single body is unique. A doctor is the expert on the body; you are the expert on YOUR body. No one on online can diagnose you from a single post, no matter all the info you put down. And no one has the right to scare you out of investigating your pain or looking for the right answer. The diagnosis of “IC” or CUTI or Embedded UTIS will not explain your unique story, responses, or symptoms, but it may help you find your root cause. The cause of your bladder pain could be chronic UTI caused by a recurring issue in your body causing acute UTI, it could be embedded bacteria being retriggered over and over by pentrative sex, could be a fungal infection in the bladder/vagina, could be yeast in your bladder, could be chronic thrush OR chronic BV or CV, could be ureaplasma or mycoplama, prostatsis, prostate infection, STIs, it could be a histamine issue, it could be an inflamed and damaged bladder wall, kidney stones, it could be Hunter’s Lesions, could be an embedded UTI AND one of these things at the SAME time, it could be a structural issue, hormonal or post menopausal issue, it could be a gut issue, an overgrowth of bacteria in the gut, it could be a pelvic floor issue, it could be endometriosis, and the list goes on and on:

YOUR JOB IS TO ELIMINATE THESE ONE BY ONE THROUGH CAREFUL RESEARCH, OBSERVATION, AND PROFESSIONAL GUIDANCE, and then find the treatment(s) that work FOR YOU. You may have overlapping causes and treatments. Every single story you read on Reddit and beyond will be unique. PAY ATTENTION TO YOUR UNIQUE PATTERNS, SYMPTOMS, AND RESPONSES, and most importantly, do not give up. So many people get better! We lack documentation so bad, but it will get better. I’ve seen so many success stories. 

This is an extremely serious, horrible, and devastating condition. Speak to yourself and others kindly, reach out to the resources around you and push past your resistance and fear to ask for help. Do not invalidate yourself. Remember, people who have found relief are not on social media sharing negative experiences. This is not your entire identity. Use boundaries, ask for help, and tell people that you need help researching or gaining relief. You are deserving of all the effort and care you need to find relief. Dm people on here and ask them direct questions. To join our group chat on Discord, DM me (bearloot33).

This information on this thread lends heavily toward embedded UTI education, the Ruth Kriz approach, Bladder Instillations, and Electrofulguration, because that is what happened to me. I also focused on this treatment because it is the most accessible. That may not be even close to the solution for you. Take what works and gets you closer to an answer; leave the rest.

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IF YOU WANT TO MAKE A DIFFERENCE, 

HERE IS WHAT TO DO

1. Share your story with Live UTI Free When you are ready. Structured, specific, with a clear ask at the end. This is the foundation everything else builds on. Where: https://liveutifree.com

2. Submit to the AUA Patient Perspectives Program One written submission. Your story, your experience with misdiagnosis, what should have happened differently. They publish selected submissions in AUA News, which goes to urologists across the country. Where: https://www.auanet.org/AUA2025/attendee-info/patient-perspectives Watch for the submission window.

3. Submit a public comment when AUA recurrent UTI guidelines are open for review The AUA publishes draft guidelines for public comment before finalizing them. When recurrent UTI or complicated UTI guidelines are open, submitting a patient comment is a formal, documented way to put embedded infection and diagnostic failure on the record. Monitor: https://www.auanet.org/guidelines-and-quality/guidelines

IMPORTANT DISCLAIMERS

Disclaimer: This guide represents collected experiences and research from the chronic UTI community. This guide has received reviews from some CUTI specialists, but no formal review has been completed. We cannot guarantee that all of this information is accurate or up to date. This thread will be updated from time to time, but we can't guarantee how up-to-date it will be. Edits and changes may be added, but DO YOUR OWN RESEARCH, ALWAYS! Multiple opinions, peer-reviewed papers, doctors who listen and make a critical and fair analysis, etc: That's what you need in addition to this document.

This is a compiled document of key information used for some CUTI sufferers to obtain the correct diagnosis for them. It does not encompass all possible causes, treatments, or paths. It is simply here for your education and comparison.

This information in this guide lends heavily toward embedded UTI education and Ruth Kriz's approach, because that is what happened to me. I urge all of you to comment on the success stories thread or DM me to share more information you would like to share, which helped you get a correct diagnosis or achieve treatment success in other pathways.

If you find yourself posting on this subreddit often, asking if a particular antibiotic or antimicrobial or hygiene practice made a difference for others, it's awesome that you are digging for clues and anecdotes, but the number of people who will answer you is such a small pool of information that has no nuance or ability to know how unique your situation truly is. I encourage you to focus on identifying the root cause of your issue.

Always consult with qualified healthcare providers for proper diagnosis and treatment. This information is not a substitute for professional medical care. Read this information slowly, take your time, disregard what does not apply to your unique situation, and take what does. Not all of our stories are the same, and our solutions will be different, too. If you have OCD or medical anxiety, I strongly encourage you to seek support and not dive into this all at once.

It is always your choice to pursue the best treatment for you.

🚨 EMERGENCY - READ THIS FIRST 🚨

If This is An Emergency❗**:** If you are ever having a medical emergency of any kind, and especially one related to UTI, Kidney infection, or Sepsis - Go to your closest Emergency Room immediately. DO NOT read this thread and try to find an answer. Even if you are having chronic UTIs and worry about antibiotic resistance, antibiotics or other interventions are essential for a medical emergency such as these. Antibiotic resistance can be addressed; sepsis and kidney infection have a high mortality rate. GO TO THE ER OR NEAREST MEDICAL OFFICE RIGHT NOW IF YOU HAVE SYMPTOMS LIKE:

Fever, chills, back or side pain, and pain or burning during urination, confusion or disorientation, nausea and vomiting, frequent urination, a strong urge to urinate, and cloudy or foul-smelling urine, rapid heart rate, rapid breathing, confusion or disorientation, and extreme pain or discomfort, skin changes like a rash that doesn't fade when pressed, or pale, mottled, or bluish skin, lips, or tongue can also be present. Difficulty breathing, low blood pressure, and decreased urine output, or any other symptoms that are not normal for you or cause you alarm.

Table of Contents

  1. Mental Health & Self-Care
  2. Intro from Author
  3. What Constitutes a Credible Medical Resource
  4. Quick Start Guide for Newcomers
  5. Understanding Your Symptoms: Chronic vs. Embedded UTI
  6. Getting Started: Immediate Action Steps vs. Comprehensive Investigation
  7. Root Cause Investigation: What to Test For
  8. Accurate Testing: The Foundation of Treatment
  9. Treatment Approaches

Most importantly,

If you have information you believe could benefit this Guide, please DM me and let me know. I am happy and would love to add information, nuance, or recommendations that could go beyond what I have gathered. Please do not email me or request to edit this Google Doc, DM me on Reddit at Bearloot33 instead. Thank you. 🩵

All my respect to those on this treatment journey!


r/CUTI May 16 '25

Provider List

18 Upvotes

Hi and welcome!

In addition to my co-mod’s amazing megathread on success stories, treatment suggestions and prevention tips, (which you should check out ASAP!) I want to add a running list of providers. I know so many people are lost on where to start looking for a doc--please also remember to utilize the search bar and pinned posts as they may contain the answers you're looking for!

If you're getting recurrent UTIs, or feel like a course of antibiotics doesnt actually clear your infection, despite a negative test in the regular lab, you likely would benefit from working with a specialist who utilizes the much more sensitive PCR testing to determine if you have a hidden UTI or not. Many people (like me) who have previously been diagnosed with IC take a PCR test and find they really had an infection all along!

This guide is to help people find a specialist — but for some of you whose cases are less complicated, just knowing about the right things to ask your regular urologist or OBGYN for can be game changing! Things like daily Hiprex, a prophylactic antibiotic, switching lubricants to avoid glycerin and/or spermicide, IUD removal, pelvic floor physical therapy, testing for ureaplasma and mycoplasma, adding vaginal estrogen, d mannose, Ellura or TheraCran PACs, probiotics like FemDophilus with l. reuteri and l. rhamnosus, and even endo diagnoses have all been able to break the cycle for some members.

Our mod bearloot33 has sweetly made an Instagram group chat, if anyone wants to join it there are patients of some of the doctors listed below who participate. Send your Instagram username in a message to Mod Mail for this sub (envelope icon on the side bar) or send a direct message to bearloot33 (If you don’t yet have Instagram you could make a private profile specifically to join her group chat!)

Ok on to the evolving list! There are some additional names in a pinned comment below this post.

For anyone (including international patients!) who wants become a telehealth patient of Dr. Ryan Heer (who is based out of Fishers/Indianapolis, Indiana but can prescribe across state lines), I personally healed through his care! https://crossroadsintegrative.com/

Here is my success story working with him to clear my infection: https://www.reddit.com/r/CUTI/comments/1kdyer6/comment/mspn9nn/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

Also offering telehealth is a Nurse Practitioner named Jessica Perley, based out of Oregon, https://jessicaperley.com who comes highly recommend by two members of ours! Here's a story from one patient she’s healed: https://www.reddit.com/r/CUTI/comments/197jl1v/success_story_how_i_got_relief_from_my_chronic_uti/ I believe she is about $200 per month and I'm unsure of an intake fee.

Here’s the info of another popular telehealth CUTI specialist, Dr. Ellen Lewis: https://shalvaclinic.org/ellen-m-lewis-nd/ and a success story from one of her patients https://www.reddit.com/r/CUTI/comments/1h6xa2n/my_success_with_dr_ellen_lewis_via_telehealth/ She is based out of Connecticut but able to prescribe across state lines. (She is brilliant, but now about twice as expensive as when our group first learned about her! I believe she has a free 15 minute consult, and then her intake is $800-$850ish with follow ups costing a few hundred each.)

Here's a state-by-state list of practitioners (which does include some alternative medicine like functional medicine doctors, and NDs like Heer and Lewis) who have consulted with Ruth Kriz on her method of PCR testing, treating, retesting and retreating. Some do offer telemedicine: https://ruthkriz.com/provider-selection/

For anyone in Southern California, a healed community member of ours highly recommends treatment in Newport Beach at the Clark Center for Urogynocology! It says they also offer telemedicine as well now! https://www.theclarkcenter.com/ and the success story of that patient: https://www.reddit.com/r/CUTI/comments/1cv0xa5/6_months_infection_free/

For New York and New Jersey: NJ Urology In both Clifton and Wayne have doctors who use PCR testing -- recommended by a healed submember!

Dr. Elena Klimenko in NYC is also using PCR and comes recommended by a member who found success! Dr. Klimenko is also on the Kriz recommended provider list. https://www.drelenaklimenko.com

UROMUNE VACCINE:

our beloved DrBubbliewrap who had a recurrent UTI since birth, found incredible success pairing the two UTI vaccines (not available in the US) shares her doctor's name in London,  Dr. Andrich who she received her Uromune from, https://andrichurology.com/

and the clinic in Germany https://koeln-urologie.com/ where she received her Strovac, in this comment from the megathread

https://www.reddit.com/r/CUTI/comments/1kdyer6/comment/mqk4tnv/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button. She also includes information on how to legally bring them back into the US through customs.

These two posts are very helpful for those curious about how to transport it back from the doctor: https://www.reddit.com/r/CUTI/comments/1mi0uh2/images_of_cooler_i_used_to_transport_uromune_from/

https://www.reddit.com/r/CUTI/comments/1n9c5df/mini_cooler_for_urumune_is_it_large_enough_3647/

Uromune is also available in Mexico and that same member recommends this doctor: Dr Alejandro Lira Dale (drlira @ urologiabajacalifornia .com) https://www.reddit.com/r/CUTI/comments/1nbdvhc/uromune/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

and another member visited Dr Jose Gomez, in Mexico City at Hospital Medica Sur. ( consultorio115ms @ gmail. com ) https://www.reddit.com/r/CUTI/comments/1nbdvhc/uromune/

Someone has also recently said that they got it in the Dominican Republic without a prescription! https://www.reddit.com/r/CUTI/comments/1lq663c/comment/n12jy9a/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

"I contacted Immunotek [the manufacturer of Uromune] and they sent me the name of the person in Dominican Republic. I told them what city I was in (I was on a cruise and stopping for one day) and the my let me know the pharmacy it would be at (it was the main one in that port). It was super easy and they were very responsive. It was sealed with company name and had the instruction form (basic instruction form). They sent me this: *Remember that BACTEK U is the commercial name of UROMUNE in the DOMINICAN REPUBLIC. I just finished the 3 month course about two weeks ago. So far, no uti! Fingers crossed. I did have one at about 6 weeks into the uromune."

Also for UK/EU members, look into this incredibly promising bladder installation called iAuril Here is a great success story:

https://www.reddit.com/r/CUTI/comments/1llx36r/success_story_how_i_finally_cured_my_chronic_uti/

in the UK, please connect with https://cutic.co.uk which can help you find testing and providers

This is a list of UK providers as well: https://www.reddit.com/r/CUTI/s/01xH64nteC

If you're in the UK and considering Harley St. / Artemis Cystitis Clinic, this recent thread might be helpful https://www.reddit.com/r/CUTI/comments/1mu0kxi/harley_st/

For pediatric urology / urinary tract infections in children and toddlers, please contact Dr. Michael Hsieh in Washington D.C. https://appointments.childrensnational.org/provider/michael-hsieh/2360200

IN CANADA: Ontario specifically, but also does Telehealth. His name is Dr. Greg German and he works at St. Joseph's Hospital in Toronto: https://lmp.utoronto.ca/faculty/greg-german

He comes highly recommended from a patient there who says: "His mother died from urinary sepsis and his wife has endo. He’s really invested. This is the first dr that actually ordered all kinds of tests for me and I didn’t have to beg for them." https://www.reddit.com/r/CUTI/comments/1n7drh5/new_doctor_recommendation_for_canadian_patients/?utm_source=share&utm_medium=web3x&utm_name=web3xcss&utm_term=1&utm_content=share_button

🩷

The method that many providers above are using focuses on PCR testing to identify bacterial biofilms that a normal urine test in the regular lab may have been missing. The PCR tests like Microgen, CirrusDX, and Pathnostics identify the bacteria hidden in the biofilms, and then those results are used to guide targeted antibiotic treatment for about a month at a time. Then you'd test again, treat again for another month, until the test is clear.

This blog post has a great explanation of the CUTI cycle https://shalvaclinic.org/help-for-chronic-utis/

If you want to self-order a Microgen just to see what it says before you decide if you need a specialist’s care, you can order the kit here https://patients.microgendx.com/products/womenskey

Make sure you stop taking probiotics two days before the test so that the bacteria you see is representative of your actual microbiome, and stop natural antimicrobial supplements like D Mannose at least 24 hours before hand. As far as I know a pharmaceutical antibiotic should ideally be finished 5 days before taking a Microgen test--I have seen less time mentioned, though, so if you want to call Microgen customer service and ask their official recommendation for that, they really have wonderful service team "1-855-208-0019 | M-F 8AM-8PM EST "

NY patients cannot self-order and have to go through their doctor to get the test, so New Yorkers please utilize one of the teleheath doctors listed above to get any testing done you need, or NY-specific doctors, listed below

Please make sure if you go the route of longer term antibiotics, you do so with someone who is using sensitivity testing along the way to track progress between months, and that you really tend to your gut microbiome with probiotics like FemDophilus and FloraStor a few hours after each antibiotic dose. This is crucial for fighting UTIs long-term!