What’s wrong with my bladder?
August 12, 2022 11:17 PM   Subscribe

I had a UTI two months ago that got better after treatment, but now I have the same symptoms and tested negative (including culture). WTF do I do now? Special snowflake details inside.

I know, YANMD, but the situation is such in my city that I don’t have a family doctor and have to advocate for myself at walk-in clinics to get medical care.

32yo cis female here. I’ve had the same male partner for 4 years, all monogamous. I’m not on birth control and use fertility awareness so I use condoms sometimes but not always. We used to have sex weekly or more but haven’t done it so often lately because I have been under a lot of stress.

Less than 2 months ago we had sex two days in a row after a long while and I developed a UTI for the first time in years. I think previously I’ve had like 2 in the past decade. It seemed not unusual given the circumstances and I tested positive for white blood cells and nitrates and was given Macrobid. They didn’t do a culture, but I was back to normal a few days after finishing the antibiotics.

Then last weekend we had sex again for the first time in a while…and 2 days later I started feeling the same symptoms. Constantly feeling like I have to pee, a cramping feeling and a sore feeling from the urethra area. This time though all the tests were negative. I was given Macrobid again and asked for a culture but it came up negative.

The urgent care that diagnosed me only called and told me to stop taking the antibiotics.I think I need to see another doctor to try to get this figured out.

What tests should I ask for? Already tested negative for chlamydia and gonorrhea.
What could be causing this? I’ve read about interstitial cystitis and I’m kinda freaked out. I’m pretty uncomfortable right now and worry that things aren’t going to get better.
What should I do while I wait for answers? I’ll probably ask to be referred to a specialist but that is likely to take several months.
posted by anonymous to Health & Fitness (17 answers total) 2 users marked this as a favorite
I can't help on the tests front, but as someone who struggles with this my immediate recommendation is to get these two things in your medicine cabinet stat: D-mannose supplements and this Cystex. (I got both of these recommendations from previous Ask MeFi threads and they're a game changer!)

I've had multiple conversations with my doctor about low grade UTIs that don't register in tests, and she's at the point where it's just "it is what it is." I'll be watching this thread!
posted by kinsey at 1:29 AM on August 13 [6 favorites]

42 year old cis male. Had almost the same experience and it turned out to be kidney stones. An infection at first, treated with antibiotics.

Following episodes have *felt* like the same infection each time until the stone passes.

I had to go get an ultrasound to see how many I can expect in the future. It looks like it may be a chronic thing for me, and the episodes are quite bad, but knowing it's not an infection has helped, and there's medicine to help ease their passing.
posted by jpziller at 3:18 AM on August 13

Somewhat similar experience: for me, it’s interstitial cystitis exacerbated by a lot of uterine fibroids. Dietary changes can help (functionally, cutting acids and highly spiced foods — no tomato, citrus, pineapple, limit coffee/tea, no Mexican, Indian, or Thai). Some things can be an issue for IC sufferers: sex, stress, tight pants, long car rides, riding bikes or horses. Plenty of information at that link!

Edit: I hope you feel better soon!
posted by verbminx at 3:44 AM on August 13 [3 favorites]

Despite a lack of vaginal symptoms, vaginal clotrimazole cream fixed that for me. Apparently it's good for all inflammation around the vulva.
posted by I claim sanctuary at 3:49 AM on August 13

Yes, I get kidney stones, and the symptoms can similar to a UTI, especially if it's a small stone. Doctors, especially urgent care etc, tend to only expect kidney stones in men, so women can go undiagnosed until you get the unmistakable unbearable pain of a big stone. One sign of a small stone can be blood (but not bacteria) in the urine. The best way to actually detect a stone is imaging.
posted by hydropsyche at 4:38 AM on August 13

It is possible that it could be a muscular/nerve thing. I had a similar experience that took forever to get diagnosed properly (and for a while was diagnosed with interstitial cystitis) and eventually more or less resolved with physical therapy. It was/is frustrating and aggravated by stress, so worrying about what on earth was wrong with me made it much worse.
posted by chocotaco at 6:50 AM on August 13

I remember reading on here about a particular bacterial infection that doesn't show up on UTI tests, have you searched through the other UTI questions? Gosh I wish I could remember the name of it! But I had something similar and my doc just kept throwing antibiotics at it until one of them worked. Not my favorite solution in general but it did work eventually.
posted by ananci at 8:32 AM on August 13

Another point to consider - spermicide can be very irritating and for me, caused UTI like symptoms.
posted by bahama mama at 9:52 AM on August 13

Very, VERY long shot, but... many years ago I had a UTI that got intense. I was treated with antibiotics and it went away. Shortly thereafter I started feeling the same, just lower-intensity, symptoms.. but tested negative - so I was referred to a urologist. The urologist did a bunch of tests and was going to do a scope (I can't remember the exact details) but first sat down to chat with me about various dietary/lifestyle things. He noted that my recent addition of a daily smoothie containing pure cherry juice - a known bladder irritant - along with a bunch of other foods/drinks that are known bladder irritants, could be the culprit. My bladder was already irritated by the infection so likely wasn't fully healed. I cut out the cherry juice and.. problem solved.
posted by VioletU at 9:55 AM on August 13

As someone with health-related anxiety, I've also been down the interstitial cystitis rabbit hole with similar symptoms. It's probably best to avoid all those searches for the moment. Like VioletU, in my case it seems like sometimes my bladder just gets irritated, whether from foods or alcohol, or from being dehydrated. I upped my water intake, took some ibuprofen, and things would feel fine again at some point. I also checked into pelvic floor exercises, because it seemed like strain related to that could also be a factor.
posted by bizzyb at 10:56 AM on August 13 [1 favorite]

Echoing the kidney stone suggestions. I had the standard UTI symptoms, got the antibiotics, and then after one particularly painful bloody pee, everything was absolutely fine. I finished the antibiotics, but I had zero symptoms after the stone passed. Having one is a sign that you might have more, so it's worth checking out, esp if your bacterial cultures are negative.
posted by gingerbeer at 12:39 PM on August 13 [1 favorite]

I went down the interstitial cystitis rabbit hole when trying to explain a UTI that seemed impervious to antibiotics. Please don't go there. I have medical anxiety and that diagnosis seemed especially crafted for someone like me.

I definitely had a UTI per the lab work but long after the lab work was clear, I was still experiencing a sense of having to pee all the time, pressure in my pelvis, a pain that seemed centered on my urethra. I was so anxious that the UTI would never go away and that my life would be forever ruined by feeling like I had to pee all the time that I ended up going back on Prozac with a side of Klonopin.

Once my anxiety was under control, I was able to see that, yes, my symptoms were improving and there were many hours of the day when I forgot about them altogether. If I focused on them, they came right back. I can't tell you how much of this was psychosomatic. I did have a verifiable UTI, after all, at least at the beginning of what was a several weeks' episode. But the anxious reaction to it that caused me to hyper focus on the symptoms, thus magnifying (creating?) the symptoms, that was likely my brain being a jerk.

Interestingly, since this episode, I do notice that certain highly acidic foods will sometimes give me the 'have to pee' feeling.
posted by MissPitts at 3:44 PM on August 13

A pelvic floor PT can work absolute wonders. Strongly recommend asking for a referral!
posted by Bottlecap at 5:01 PM on August 13

If you have a hand held shower for washing your vagina, make sure you don't spray directly at your urethral opening, spray over, or put a clean finger over that spot, to prevent blowing surface bacteria up into your bladder. Washing up after sex is a place in the chain of events where you can put a biome foreign to you, where it doesn't need to be. Probiotics are good.
posted by Oyéah at 8:01 PM on August 13

I’d take a deep breath and be kind to your bladder. Avoid bladder irritants (acidic foods, spicy foods, caffeine, and carbonated beverages). Stay hydrated. Try some pyridium, which is available OTC. Try a heating pad. Make an appointment with a urologist for follow up care. Most point of care urinalyses test for blood, so if your urine is negative for blood I have a hard time believing your passing a stone - but I’m not a doctor, just a cis lady with a delicate urogenital system. I have IC and while I do have frequent flares they are manageable with behavior modification and some guidance from the urologist. Feel better soon.
posted by OsoMeaty at 8:14 PM on August 13

I've had recurrent UTIs. Sometimes they would test negative, but I'm still convinced they were UTIs – just low level and a bit transient. I was sent to a urologist and having described them he agreed they were probably UTIs and wasn't concerned. My doctor gave me a standing requisition and some spare pee cups to check if it came up again.

So I would not take the negative test as a guarantee that your problem is not still a UTI.
posted by lookoutbelow at 1:05 PM on August 14

I had an interstitial cystitis diagnosis with some associated treatments about 10 years ago. The treatments only gave temporary relief, but in recent years, the symptoms seem to have resolved. I found this article very interesting, saying that interstitial cystitis may just be a form of embedded infection that isn’t picked up by urine cultures. Basically the tests they use for diagnosing UTIs is based on outdated, incomplete research and they miss a lot of infections that can’t be picked up by pathology.

I'm not saying that what you are experiencing is IC, but just pointing out that diagnostic science around bladder pain is not very advanced. I would definitely get a referral for a urologist to investigate further, rather than just relying on urgent care or your GP's experience treating UTI.
posted by amusebuche at 4:41 PM on August 15

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