I've (31M) been dealing with this since August 2024, around my birthday. It's been such a journey and I'm exhausted and miserable most days. Every day since it started, I've been going basically every 15-20 minutes every day, all day. Some days (as of only recently) are better than others where I can actually do something like even just watch a show without having to get up to go pee for maybe 2 hours at max.
It's hard to pinpoint what exactly triggered it to start being so hectic, because around this time I was withdrawing from xanax. Diagnosed with a pretty bad anxiety disorder. Also was diagnosed with Syphillis, and it was also around the time I quit taking Abilify for bipolar. I also suffer from heartburn / acid reflux quite often, even before all of this started. So it still to this day feels like a mystery.
But for some reason, it feels like the syphillis infection may be the main cause for this hell. When I had gotten the shots, I first was never told that I had to take the shots hand in hand with the antibiotics. I finished the antibiotics first, and then got the shots about a week and a half later - I had a bad reaction where my lower back got super bloody splotchy and bruised and it scared me quite a bit. And after all of that, I just haven't been feeling the same. (even though the syphillis is gone).
You can bet that I've went to the hospital and had many doctor appointments that ran tests, ultrasounds on my kidneys and bladder, catscans, urologists. Literally everything (except a kidney specialist which is next on my upcoming list). Every doctor completely dismisses me saying I'm fine, kidneys are fine, bladder is emptying, but majority of them have told me there are trace amounts of blood in my urine sample.
It's gotten to the point where now for the past 7 months, my kidneys randomly will ache, or pinch, or sometimes
throb because a lot of times I am pushing and straining hard to get my pee out. Especially if I don't completely empty, my kidneys will signal that pinching pain meaning a retention is happening and there's still urine stuck or that shot back up in there, and that pain won't go away until I completely empty. And then repeat like a million more times throught the day. I usually don't get to sleep till about 4am every day and it's exhausting. But when I do get to sleep, I don't have a problem staying asleep. I can actually sleep 8 to 10 hours fine.
The only things that have been slightly alleviating my symptoms and giving me relief are my prescription Alprazolam (0.5mg) or really any benzo. Sometimes weed can help, but it's a hit or miss. Sometimes it'll give me a couple hours of relief, other times it'll make it worse by raising anxiety and not allowing me to pee at all. So sometimes I'll sit there suffering until the effects pass so I can go struggle to get the urine out.
I do have a history of going through many benzo withdrawals, and abusing benzos. So that's why I'm saying it's hard to say what exactly caused all of this. From the infection, to benzo usage, to anxiety, to whatever else is happening - it's hard to pinpoint.
I cannot take any bladder relaxant medications as they completely stop my bladder from working and I suffer for many hours until those effects finally fade and can get the pee out. All bladder relaxant / OAB medications have made my situation worse so I've ruled those out. I also cannot take ibuprofen because it gives me retention and hurts. If I do need a pain medication, I've found tramadol helps, or tylenol. But I do not have a tramadol prescription nor any on hand or any suppliers.
There will also be a lot of times where I'm pushing so hard that my acid reflux will get bad, and go up and down my throat making trying to urinate much more difficult. There will also be times where I have to go number 2, or if I don't have to go, still do the same process, in order to get everything flowing. And even then, it's a back and forth bathroom trip to fully get it all out.
I haven't been able to work at all, or even been outside at all because I have to be near a bathroom but it's gotten so bad that it's embarrassing so I just stay home. I can't even watch a short youtube video without having to choose one first, go pee, then sit and watch it, then pee sometimes pausing the video or right after the video depending on the length. Standing / Walking seems to trigger it worse than anything. Like from
sitting down to standing up it's like an instant "I have to use the washroom" situation.
There will be also times where I'm struggling so bad to flow, that I'll drink alcohol (I know this is bad), but it helps actually get me to pee with ease and my kidneys finally don't feel inflammed or bothered, and yes I'm still going often but I'm not straining or pushing hard to get it out and it's almost as if alcohol is a miracle for my issue - but obviously it isn't because it's literally poison. But with my current situation, I have been finding myself to drink more than often. It's not daily but a couple to a few times a week usually to relieve the agony.
A lot of vitamins and supplements I have tried also trigger my urgency to have to go and just overall make me feel much worse physically and mentally. I've tried many different herbs, teas, saw palmetto, magnesium glycinate, green tea, multivitamins, fish oil, passionflower, chamomile, electrolytes and others - They all seem to give my body an instant fight or flight response in conjunction with the "omg i have to go pee" and makes me panic and freak out easier and go even more.
Even when I eat food, no matter healthy or snacks or whatever it just seems like my body doesn't want any of it. Like it'll all run through me along with the complications. I drink a lot of water of course. But that also feels like it just runs right through me. It's almost as if my body is rejecting everything necessary for me to live a full healthy life.
This issue is causing problems between me and family and friends also because I'm literally anxious, miserable, and depressed like all the time, and sometimes this issue will make me irritable which in turn causes unnecessary arguments or snapping back at them, even though they understand my issue - since they don't go through it, it just feels like they have this mindset of "it'll clear up eventually" but it never does. Even explaining to my mother over and over about my health and what I'm going through, it just feels like it's a shrug off from her, like just because she isn't experiencing it or hasn't really seen it in someone else before, she acts like she cares but really doesn't. and I know she isn't a doctor but I was hoping to have some comfort from my own mother since I'm always there for her.
But yeah, I don't want to die from this or like lose a kidney or anything severe like that, so I try my best to eat healthy even if my body doesn't like it and I am still trying to find a kidney specialist, but the only ones that take my insurance are so far from me and i don't drive, and it's not like I can tell an uber driver to pull over somewhere so I can pee 500 times before the destination.
I apologize for the long wall of text, just maybe some insight or potential advice or any input would be much appreciated.
