r/CUTI

I’m a 26 man and I had a UTI about 3 months ago. Originally when I first started getting symptoms I freaked out because I never had something like this before. I went and got a STI for panel test about 3 days after I started a symptoms and I was fully green on everything. So I went to an urgent care and explained my issue and got a 10 day course of antibiotics. I took them all and never missed a day and the symptoms disappeared for a week or more. Then I started getting the urge to pee often and soreness. This lasted for maybe a week and then kinda went away for a while. Now I still have this pressure/soreness in my bladder. I have no other symptoms besides it. Sometimes it feels like it’s going away but because I’m active at work and crawling into tight spaces or working out I feel like I annoy it and cause it to get irritated again. I wanted some advice to see if it’s lingering inflammation, Nerve sensitivity, or something worse before I try to go see a doctor again.

10 years of dealing with worsening chronic bladder pain that I always swore was an infection. I feel medically gas lit by years of negative uti tests, yet positive for white blood cells (fighting what exactly?), rounds of antibiotics that did nothing, every diet you can think of, and a bunch of IC discourse about pelvic floor dysfunction that made no sense in my case and “some people just have inflamed bladders for no reason.” I’m sorry, I just refuse to believe is the case for most of us. I’m sure it exists tho.

Anyway. YEARS. Of desperately trying to find and heal the root cause of this pain. I come across this sub and it felt so validating. I immediately started an herbal anti-microbial/biofilm protocol of allicin (garlic compound), NAC, and d mannose. Within 3 days, I’m pain free. I’m drinking coffee that’s not going immediately through me. My skin is purging a little right now, but I’d be willing to bet this bladder inflammation has been one of the factors causing my acne, because they started around the same time.

I hate that the medical field prescribes antibiotics for every single thing. I guarantee you that’s why these stubborn bacteria evolved to develop bio films in the first place.

Anyway. Sorry for the barely coherent rambling. It’s 2 am and I’m almost in tears of happiness. Bless you all. I’m on a path to healing I was starting to doubt was possible.

I am female. Within the past 7 months I have had 3 kidney infections. They have all started from untreated utis. The first kidney infection happend after an ex used baby oil instead of lube without telling me. I was completely fine before that and never had a uti. Immediately after this incident I developed a severe uti and a kidney infection that put me in a lot of pain. I was treated for it and went back normal. I continued to have sex with said ex, each time developing at least a uti, and a second kidney infection at one point. The second infection was partly my fault as I waited too long to go to the hospital. I was put on antibiotics again. I broke up with the ex and am seeing someone new. I thought that my ex was the one giving me the infections. But after being intimate with my new partner I developed another uti. I went to the pharmacy and had it treated with standard uti medication, but it still spiraled into a kidney infection. I took a different course of antibiotics from the one I took for the first two kidney infections. I still have pain and discomfort in my kidney dispite finishing the course of antibiotics, although it’s lessened. The doctor prescribed me nitrofurantoin 100mg to take each time after sex. A couple days ago me and my partner were intimate, without any penetration, and despite taking the antibiotic I started to feel symptoms of a uti. I countinued to take the nitrofurantoin twice a day for three days just in case. I started to feeling better so I stopped. And the symptoms came back. So now I’m taking it again twice a day but I’m not sure if that’s the right thing to do. I’m really upset because this could’ve completely been avoided if my ex had just used lube. I’m scared to have sex now and I’m worried for my health, I am already immunocompromised and I’ve spent a significant amount of time this year on antibiotics which is suppressing my immune system further. I’ll add some further information for context. My UTIS are rarely ever painful but I experience fatigue, odd smelling urine, and cramping, and when it becomes a kidney infection my kidney cramps and hurts and it spreads into my back. I have been tested for STDS with negative results. Despite experiencing kidney pain and cramping above my pelvis my urine test results after treatment are always negative. I am now taking d mannose, cranberry supplements, probiotics, as well as NAC. Sex is my only trigger.I eat very healthy. I’m wondering what am I doing wrong, has anyone experienced UTIS similar to mine and how did you deal with it?

I went to a clinic telling the doctor I had been to Vietnam and picked up an infection from there. He appeared sympathetic and told me that the infection would be difficult to treat as Vietnam has high antibiotic resistance. Despite this he prescribed me first line antibiotics bactrim and noroflox. With one search you can see this antibiotics generally don’t work with bacteria from Vietnam. So he wasted my time with knowledge they wouldn’t work. All he did was destroy my stomach. Then proceeded to tell me i probably don’t have a UTI at all, and it’s Interstitial Cystitis, and if I think otherwise then I must’ve studied for years and should become a nurse. 😡 Just terrible.

a lot of information i am finding is from a year ago...I can't seem to figure out how to get it shipped and idk any doctor who will prescribe it - im in toronto if that helps.

Thank you

Hi all,

I wanted to share my experience with cytoscopy in case it might be helpful for anyone who's scared of the procedure.

I was terrified and was looking for posts like this before doing it but couldn't find any recent one - so here's my story!

It wasn't as painful as I thought - they gave me a numbing cream but obviously there's no numbing cream in the world that is going to stop you from feeling a camera going up your bladder. That part was quite painful but it only lasted a couple of seconds.

I couldn't feel anything while they moved the camera around or when they removed it. I was given 1 pill of low dose antibiotics after - fingers crossed I won't get a UTI from it.

To give you an indication of the pain, I've had IUD insertion and cervical biopsy in the past and the Cytoscopy was the one that hurt the least. By a mile.

So if you're worried you might have bladder cancer (a nurse told me I might, because she saw blood in my urine, and gave me a panic attack....) and you're thinking of getting one, go for it <3

I hope this is useful for anyone who might need one!

After waiting months, I had my first urogyno appointment to address my reoccurring UTIs. I saw an RN because the doctors were booking out even further. I gave her my history of how often I get them, the type of bacteria they are, how antibiotics work for me, and the preventative measures that I take. I already am incredibly vigilant with hygiene and so is my husband. I take d-mannose every night and a vaginal probiotic however, I still get UTIs often.

She performed a pelvic exam to check my anatomy which was good, and told me to come back in three months… I was given a standing order to have a urine culture done if symptoms pop up. I asked about a pelvic floor therapist and I was told to bring it back up in three months. I asked if any test we’re going be put in for either a culture today just to see or to check for any yeast issues or anything but nope.

I know UTIs issues can be tricky to diagnose, but I feel like this is below the bare minimum.

Anyone else have a similar experience or what was your first appointment like to address your UTI concerns?

Hi everyone,

My symptoms started around February this year. I honestly had very little knowledge about UTIs because I’d never had one before, so when it started with bladder pressure and pain I kind of ignored it at first. Eventually I started getting kidney/back pain too and thought yeah this definitely isn’t normal, for context I'm 28 and I've been very fortunate in the UTI department.

Went to a walk in clinic during a trip home, the nurse didn't send my urine off for culture but she initially prescribed 3 days of nitrofurantoin after a dip test came back with a little blood and increased white blood cells, I felt relief for a short while, but eventually the symptoms returned.

I went to my usual doctor, where she sent urine off for culture testing and got prescribed 7 days of nitrofurantoin — again I felt better temporarily, then the symptoms came back. Third time I was prescribed 3 days of pivmecillinam, and once again I had relief for a bit… then it came back. Culture testing eventually came back and said I didn't have an infection and I was confused.

I recently went back again and the doctor gave me the option of either a longer course of antibiotics or methenamine hippurate, and I chose the methenamine instead because I didn’t really want to keep hammering antibiotics but maybe I've chosen wrong.

What’s messing with my head is I genuinely don’t know anymore whether this is an actual UTI/CUTI or whether the pain has become psychosomatic because I’m so stressed and focused on it. I don’t really get classic burning when I pee, and I had a urine culture come back negative, so now I just feel like I’m losing my mind a bit.

The pain itself honestly feels more like period cramps. Sometimes it’s more left-sided, sometimes right-sided, but there’s pretty much always pressure/discomfort down the middle too. Because of that I started wondering if it could actually be something like endometriosis or ovary related rather than a bladder issue.

The doctors have referred me for a vaginal ultrasound but the NHS waiting list is around 15 weeks, and I’m honestly considering just paying privately because I just want answers at this point.

Does this sound like CUTI/interstitial cystitis/pelvic floor dysfunction/etc to anyone? Or does it sound more gynae related? Should I try and see a CUTI specialist privately or wait for the ultrasound first?

Has anyone been through something similar? I genuinely just want some clarity because this has been dragging on for months now and it’s exhausting.

Any help/advice is appreciated, thank you!

Hi all,

My doctor has asked me to track my urine at home due to consistent +blood (~250), ++protein, and high pH on routine tests, been consistently negative culture. It’s been hard to get in for follow up and to reduce urgent care visits I’d love to log when I’m symptomatic and see if there’s any trends

I know these aren’t the most reliable and I will still trust my body and more clinical testing. These will just be a useful tool

Does anyone have brand recommendations that are accurate and consistent? Also open to ones to avoid.

Thanks in advance.

Has anyone else here spent way too much time trying to figure out why their body hurts… only to leave appointments with no real answers?

VULVAi was created for people dealing with chronic pelvic and vulvovaginal symptoms who have struggled to get clear answers or effective support through the healthcare system. That includes recurrent UTIs, pain with sex, vulvodynia, pelvic pain, recurrent vaginal infections, and other ongoing symptoms that are often dismissed, misunderstood, or difficult to diagnose.

Founded by board-certified urologist Dr. Maria Uloko, the platform is designed to help users better understand symptom patterns, organize their health history, and access evidence-based educational guidance that supports more informed conversations with healthcare providers.

This is not intended to replace medical care or provide diagnoses. The goal is to give people clearer information, better symptom tracking tools, and more support in navigating conditions that are frequently overlooked.

The team is currently seeking feedback from people with lived experience navigating:

• recurrent UTIs
• pelvic or bladder pain
• vulvodynia
• pain during or after sex
• recurrent vaginal infections
• ongoing symptoms without clear answers

Beta testing takes approximately 20–25 minutes, and participants will receive free lifetime premium access once the platform launches.

Signup form:
https://forms.gle/MGkYKY1aSpx9eVSc7

Questions are welcome in the comments, and thank you to the mods for allowing this post.

Full Text (since paywalled):

Farrah was fed up with her vagina.

For the past two years, the 29-year-old dancer from Ohio had been dealing with severe pelvic pain and vaginal odor. “It was like 8/10, horrible core pain,” she says. “I couldn’t lie down. I couldn’t even work an office job. It was bad.”

When she visited doctors, she told them what she thought the culprit was: an allergic reaction to soy oil in a vat of water she’d swam in during a pirate-themed dinner theater performance. But they didn’t believe her. “They attempted to fix it with antibiotics,” she says. “And they just did nothing.”

So Farrah (who requested we withhold her full name to speak freely about health matters) started Googling her symptoms. That’s how she stumbled on NeuEve, a vaginal health company that provides supplements, suppositories, and at-home vaginal microbiome testing kits.

She ordered a test from the company for $150, and it came back with a diagnosis: aerobic vaginitis (AV), a bacterial infection caused by an overgrowth of E. coli or streptococcus. She ordered supplements the company recommended, and she says the pain abated almost immediately. “I was just so glad to actually know what was wrong,” she says.

Farrah is one of a growing number of women who have used at-home tests to self-diagnose issues with the vaginal microbiome—an ecosystem of bacteria growing inside the vagina; the presence of “good” bacteria correlates with lower risk of STIs and other types of infections, according to numerous studies. The industry got a shoutout when the Silicon Valley entrepreneur Bryan Johnson recently posted on X that he had just given oral sex to his girlfriend, Kate Tolo, then followed up with a screengrab of her Tiny Health vaginal microbiome report. He proclaimed that she scored “100/100” and that hers was in the “top 1% of all vaginas” due to the dominance of Lactobacillus crispatus, a type of “good” bacteria found in the vagina.

Johnson’s thread garnered widespread mockery, with many questioning why Johnson would publicly quantify his partner’s vaginal health in such a fashion. But it also received replies from women online who are tracking their own vaginal microbiomes to treat their bacterial infections, to boost fertility, or just out of interest. Some even posted their results.

The market for at-home vaginal microbiome tests is growing—Tiny Health, the startup Tolo used, claims vaginal health testing sales spiked 2,000 percent within the first 48 hours of Johnson’s post—and similar companies include Juno Bio, which partners with Neueve; the UK-based Daye, and Evvy. But some experts believe there’s not yet enough research to support the long-term validity of such tests. None of the at-home kits on the market are approved by the FDA. There are also questions as to whether they empower women to take their health care into their own hands or simply create more anxiety for them.

Twenty-eight-year-old Samantha (she also requested a pseudonym given the sensitive nature of this topic) developed an interest in vaginal microbiome testing after experiencing a bout of bacterial vaginosis, or BV. She ordered a testing kit from Evvy upon the recommendation of the Facebook group Beyond BV, which offers support for women with recurring vaginal infections, and where they often post their own results.

Samantha found her test results useful, but she also noticed a distinct strain of paranoia within the group. For instance, when many women receive their results, they tend to focus on whether they have enough Lactobacillus crispatus, or “good” bacteria, in the vagina. “I'll read posts where women are freaking out if they have like 97 percent crispatus and then they'll retest and they'll have like 60 percent and be really disappointed and scared,” she says. The opposite also holds true. “Women will post about having 100 percent crispatus and other women in the comments will just be like, ‘Oh, I'm so jealous, I'm having so many issues, I hope to be you one day.’”

In internet communities like the subreddit r/Healthyhooha , which has more than 100,000 members, women regularly discuss their ratios of “protective” to “destructive” vaginal bacteria, often trying to optimize the former. Some take vaginal microbiome tests multiple times, as a preemptive measure to avoid future infections. Research indicates that 50 to 80 percent of women who get BV once will get it again.

Longevity researcher Kayla Barnes-Lentz tests her vaginal microbiome about twice a year and publicly posts her results. (She also uses Evvy and acts as a paid adviser for the brand.) She started testing it not because she has any underlying health issues, but because she wants to do everything in her power to try to boost her numbers—for instance, she says she got her 97 percent protective bacteria score up to a 100 percent by taking vaginal probiotics.

“We know that decline occurs as we age, and I want to be as protected against that as possible,” she says. “I’m always striving, and I’m always in competition with myself.”

Evvy founder and CEO Priyanka Jain says the company has served more than 100,000 patients since its launch in 2020. She says that while the vast majority of her customers struggle with preexisting vaginal health issues, 10 percent take the test out of “curiosity,” and more than 50 percent are regular subscribers, taking the test every three months, either to track their fertility or prevent recurrence.

There’s a paucity of research surrounding the vaginal microbiome in comparison to the much better-known gut microbiome. This is in part due to gender bias within the scientific research community, says Hana Janebdar, the founder and CEO of the vaginal microbiome testing startup Juno Bio. Historically, “there has been this huge amount of research and commercialization into every aspect of microbiomes except how it pertained to women's health,” she says.

But even though recurring BV infections among women are a legitimate issue, some researchers say the utility of taking an at-home vaginal microbiome test is debatable—especially when one is asymptomatic, as Barnes-Lentz and Tolo were.

The vaginal microbiome is ever-fluctuating and can vary depending on factors like diet, sexual activity, and whether someone is pregnant or menstruating, says Jacques Ravel, a vaginal microbiome researcher at the University of Maryland. (Ravel is also listed as a scientific adviser to probiotics company Seed.) “It’s a very dynamic system,” he says. “Knowing what happened at one point in your life won’t really tell you much about what’s going to happen even two weeks from now.”

Vaginal microbiome diversity also varies by race and ethnicity: Black women, for instance, are statistically more likely to have less Lactobacillus crispatus, the protective bacteria, than white women of European descent, but that doesn’t necessarily indicate a problem with their vaginal health. And some women can have little to no lactobacillus and be perfectly healthy.

The tests also typically suggest treatment protocols like antibiotics or probiotics, some of which can disrupt the bacteria ecosystem in the vagina if introduced unnecessarily. “You're going to maybe end up with something that might not be optimal for you, and all of a sudden you're going to start having problems,” such as worsening irritation or discomfort, Ravel says. “I think that’s dangerous.”

When asked about such critiques, the CEOs I spoke with take issue with the idea that the tests provide zero insight into long-term vaginal health, arguing that results fluctuate far less than Ravel suggests. While Kimberley Sukhum, the chief science officer at Tiny Health, agrees that unnecessary treatment such as antibiotic intervention “can be harmful,” she says biomarkers such as lactobacillus dominance are “not fleeting signals. They reflect the underlying character of a woman’s vaginal community at a given point in time and are associated with real health outcomes.”

Regardless of the long-term utility of the tests—or, at the very least, the ludicrous idea of a woman having a “top 1%” vagina—their popularity undoubtedly points to a larger issue within the women’s health space. Until 1993, researchers were not legally required to include women in clinical trials, contributing to a massive gender gap in data. The women who regularly test their vaginal microbiomes are trying to find their own answers within a medical system that has largely failed them.

“We have not done extensive research or funded enough for extensive research to come up with new medicine to solve this problem,” says Ravel. “For almost 50 years, we have not come up with a solution to help women. And I think that’s very, very sad.”

Has anyone also noticed that they don't have get any UTI during their periods. I have had UTIs for years, several times a year, but whenever my period show up, slight burns instantly stop and never transform into a UTI. It never does at any other time of the month. Isn't it crazy?

Help please 🙏 all started in December this year , i had a pain in my tummy thought i had a hernia as i had one before and was same location. I got this checked via scan and was nothing. Then things progressed hurting when i wee and stabbing pain in my penis , went back to doctors got antibiotics for UTI soon as they ran out it was back again but worse now with back ache and balls going full and sore. Ive had 4 rounds of antibiotics i had cystoscopy , CT scan but all shown nothing now urgently referred to nephrologist but not till July 😬 I'm in pain every day 😢 what could this be please!!

Hi everyone, so I (F29) frequently get UTIs after sex, but this time it’s been much worse than usual. I’ve been dealing with what seems to be a pretty bad UTI for several days now. After about a week of symptoms, I repeated my urine test because I was having intense burning, constant urgency/frequency, going to the bathroom all the time, pelvic discomfort, and pain.

The results came back showing some abnormalities consistent with a urinary tract infection. I’m currently waiting for the urine culture and antibiotic sensitivity test, but the results won’t be ready for another two days.

In the meantime, I started taking ciprofloxacin on Sunday, but I honestly don’t feel any improvement at all. It’s already been 3 days on Cipro and the symptoms are still very strong. Having to wait two more days for the culture results feels unbearable at this point...

I really don’t know what to do anymore. The discomfort is intense and it’s becoming impossible to function normally like this.

Has anyone here gone through something similar or have any advice on what helped while waiting for culture results?

I was also considering trying D-mannose because I saw some posts saying it helped them, but at this stage would it even make a difference?

Any advice or experiences would be appreciated.

That urgent need to go when I have to leave the flat, has started up again. Thankfully no burning but surprise surprise the recent sample showed up without anything.

Can you all share what truly helps?

I’m thinking of going down the Ruth Kriz route. Can anyone recommend a practitioner who’s local to London?

TIA

I went to Tijuana for uromune. I have had a rough first few days with it, but the oddest thing has happened. I have had a hole in my ear drum from where I had a tube. The hole has been there for years. The past few days I’ve been having some issues with my ear. I have a little ear camera and I looked & the hole is getting smaller! I think it has something to do with my immune system getting stirred up. It’s nearly closed now. The other side had a hole. It didn’t take years to heal, but it didn’t start healing until after I got the flu.

I read living UTI free today and it talked about how Ruth Kriz often does bladder instillations to breakdown biofilm.
Has anyone done this and if so was it affective?

Wondering if anyone else has a lot of frequency on an empty stomach??

It’s like any amount of water I drink goes straight to my bladder, and I need to pee very often. After a meal, I can hold it normally for several hours and feel pretty ok. What’s the mechanism of this?

Have been like that for months after two UTIs and treating ureaplasma, it’s driving me crazy. Have done lots of private testing and unlikely to be an infection now but will still retest in summer.