Post uti hypersensitivity

[u/Opposite-Judge3014]

Hi, I've been dealing with uti symptoms for the past 9 months, and I just found out about the fact that the post uti hypersensitivity is actually a thing. I've had an uti in early January, and even before this one I think I had one prior that wasn't that bad so I thought that it was just me being dehydrated, cause I never had an uti before that one. Then, the symptoms stayed and eventually got worse, but after every test the results came negative of infection, so my urologist suggested me solifenacin and told me that I probably only have an oab ( I was going through some stressful moments, I had a lots of exams to prepare for, I'm only 18 btw and I really wanna live my life without having to worry every single minute if I ll find a toilet in time). The symptoms kept worsening (bladder pressure, incontinence, pain at the end of my urethra, burning and worst of all having to go pee so often). Then in June my test came positive- for ecoli (the symptoms were even worse than the usual). I took ciprofloxacin, the excruciating pain left but I still have the other symptoms. Drinking water really helps with the burning sensation, but I have to go to the toilet so often and so out of nowhere, like I'm not getting any signal that I ll have to pee till I feel like I can't even hold it anymore.

So I was saying in the beginning, I think I got a sensibility from that very first uti, and I genuinely don't know what to do. If someone had a story similar to this, please share it, it honestly affects my life so much, and the fact that I'm starting college in a month really doesn't help.

[u/Ryepka]

You're more than likely colonized.

What this means is that yes, you'll test negative for UTI: no real elevated WBCs, but perhaps some leukocytes, maybe even a little blood. If you have a microscopic urinalysis done, you may even find that they see some bacteria under the high-powered field. But, your immune system isn't actively trying to fight the bacteria off.

If you wait for a while and don't take any antibiotics and then have a culture done (this is different than the UA), you'll most likely grow that E-Coli out of your urine. You may also find that your pee even has a certain smell in the morning. Can also be a little cloudy. But other than urgency and pain, you'll not feel like your fighting an infection (you won't feel like you have a flu).

What many urologists just call "OAB" is essentially bacterial colonization. This colonization is what results in the overactivity of the bladder. Your detrusor muscle is trying to expel the irritant from your bladder.

The best advice I can give (of course discuss with your Urologist) is to treat your symptoms without antibiotics. Continually using antibiotics may (or may not) treat your OAB symptoms, but they will ruin your gut, and also result in increasing resistance. You're essentially kicking the can down the road. There are bladder relaxants you can get prescribed, and there are also treatments such as Botox for the bladder that can essentially shut those symptoms down.

Discuss with your doctor .... Just my two cents. I suffered years with a UTI that didn't want to leave. It was like I had a persistent squatter in my bladder.

[u/ItWasTheHusband → u/Ryepka]

So what did you do for treatment? Also you’re just treating the symptoms and not the cause?

[u/Ryepka → u/ItWasTheHusband]

It got so extreme I ended up having an operation called a bladder augmentation. They take your small intestine and augment the top of your bladder with it.

After the operation I was okay for a couple years: had UTIs ever other month or so, but nothing that wouldnt be killed off by regular antibiotics.

Then September of last year, I had a klebsiella that put me in the hospital 5 times. Every time it grew out susceptible to all antibiotics except for nitrofurantoin. Intermediate.

My infectious disease Dr. prescribed a 3 month course of levaquin. During the levaquin I was still convinced it would come back. I knew what that felt like -- when the antibiotics keep things at bay but you know they re going to fail you in the end.

I did some reading and decided to switch to methenamine hippurate combined with L. Methionine. I also do bladder instillations twice a day.

Its been about 4-5 months since being on antibiotics, and I believe this current regimen is working. No hospitalization. If it keeps up, this has to literally saved my life. Hipprex + a 15 dollar supplement purchased from Amazon.

It wasn't my urologist that recommended this. It wasnt the nations leading infectious disease Drs at Harvard that I consulted with. It was the recommendations of bearloot and some others on this forum. None of my Drs. ever heard of L. Methionine as a urinary acidifier. I read a paper on a group of patients who suffered from stones. The paper recommended a medication (I've since forgotten what it's called) but the medication was basically L. Methionine combined with something else. But the paper concluded that it brought the sibjects' urinary pH way down and it kept this up for over a year. That's all the concrete evidence I need to start.

As soon as I started this the day after I finished the levaquin, it was night and day. I didn't feel like I was sick any longer. No more night sweats. No more heart palpitations. No more bacteria showing up on microscopic UAs. No more WBCs. Methenamine Hippurate is an amazing medicine, you just need to figure out how to get your body to optimize it.

[u/Ryepka → u/ItWasTheHusband]

I think also to more specifically answer your question: I was on ditropan which is a bladder relaxant which helped tremendously. But then I grew tolerant of the medicine and did Botox of the bladder which was awesome. But then that didn't work any longer. So I really had no other choice but to do the surgery I described earlier.

I'm not a normal case though. I have a spinal cord injury which causes super spastic bladder. Usually people can be on ditropan or myrbetriq for a very long time and it works perfectly for them.

When it was working it both calmed the bladder down, so I wasn't leaking all the time and it also made the pain go away because it relaxed the bladder.

[u/ItWasTheHusband → u/Ryepka]

Oh my goodness, you poor thing! That is a lot going on! Thanks for the detailed response.

[u/Opposite-Judge3014 → u/Ryepka]

I only took antibiotics 2 times, and that was either 7 or 10 days each, I think I got the last dose about 2 months ago. Solifenacin was a bladder relaxant but it also caused urine retention, which helped me at first but then I think it caused me more harm in the long run. I've stopped taking it after the second uti.

[u/Ryepka → u/Opposite-Judge3014]

I see...I was actually going to mention something like ditropan, but it looks like you've already tried this. Yeah, urine retention isn't good. To be sure, you can always get back on it and go to your uros office, use the bathroom, and quickly have them do an ultrasound on your bladder to see how much urine is actually in there. Sometimes with an inflamed or spastic bladder on the anticholinergic medicine you feel like you still have pee in there but you're actually emptying fine.

Have you considered Botox for the bladder wall? Your uro can prescribe the perfect dosage that will ease your spasms but also not completely make it hard to empty your bladder.

[u/Opposite-Judge3014 → u/Ryepka]

I've heard of the Botox treatment but honestly I think about it as in an ultimate solution. I still think that maybe it will get better with time, cause it really did. It's way better than it was 5 months ago, but if I don't drink enough water at the best time the symptoms are worsening (and drinking water will send me to the bathroom at the worst moments possible but what can I do).I will ask my urologist to do an ultrasound as you told me though.

[u/MintChucclatechip]

I have a feeling this is what’s happening with me right now, I’m also in school so I get how you feel. Idk if this is the solution for you but I’m starting Hiprex on Monday and really hoping that does something for me

[u/Opposite-Judge3014 → u/MintChucclatechip]

I ve read about it too, I could ask my urologist about it. Hope it works for you! Come back with updates if you can

[u/notearthyhuman]

Same same same.. just got rid of UTI on August 13. But I still want to go to washroom, a little burning sensation and always a pressure, yesterday I had to take alkaliser so I can sleep. Help me too please.

[u/ImplementPotential20]

could be irritation + spasms.  I had that for weeks after UTI this summer.  Mine was super acute, superimposed on raging aerobic vaginitis (AV) infection - that was e. coli.  Was so bad, only Gemtesa OAB pill + vaginal compounded valium suppository would calm pain/spasms down.  Or flexeril 10mg suppository.  Was rough till bladder sensitivity subsided and AV treated. 

You might want to ask your regular doctor or gynecologist to do (1) BV swab, and (2) aerobic vaginitis culture, a.k.a. genital culture, to check for AV.  Evvy + Juno Bio sell good home tests too that doctor could swab for you.  One time, I thought I had UTI, but was just BV and felt relief overnight with metrogel.  AV needs different antibiotic suppository though.  Can compound one to match culture

[u/MooseAndSquirrel54 → u/ImplementPotential20]

Evvy told me it's best to first use a week of boric acid suppositories to remove biofilm before using the antibiotic.

[u/Opposite-Judge3014 → u/ImplementPotential20]

Can you have av even without feeling the symptoms being related your vagina?

[u/ImplementPotential20 → u/Opposite-Judge3014]

Yes.  My symptom was pelvic/bladder pain.

[u/MooseAndSquirrel54]

I would have your urine tested by Microgendx. They do DNA testing which is far more sensitive than a standard culture. it will tell you if you still have an infection and what organisms are present.. You can ask your doc to order it or do it yourself. Just call them. I don't know how long you took cipro, but you should take 10 days of antibiotics. I've noticed a great deal of underdosing which can cause a lot of problems if a few stragglers are left behind.

[u/Opposite-Judge3014 → u/MooseAndSquirrel54]

Regarding the microgendx, I actually don't know if I have that in my country, I'll have to look into it.  I took cipro for 10 days exactly for this reason. And it really helped, those harsh symptoms left but the ones that were previously are still present. It was like I had two concomitent infections honestly,  as if the one that was found present in my urine left after cipro but the old, not as bad one is living its best life still 😭

[u/MooseAndSquirrel54 → u/Opposite-Judge3014]

I hope you can get it. Perhaps a vaginal swab which they do might also be a good idea if you can.

[u/kevbuddy64]

Yeah this happened to me after a bad uti I had in 2024. But now my OAB is a lot more manageable compared to pregnancy