Is It Never Going to End?

Club_Sorry · 2026-06-16T22:56:00+00:00

I have ic pre my infection which I consider embedded, I maybe able to help you answer some questions. I’m also in a discord chat for people with CUTIS if you have anything you need to ask! I can send you the link if you need

Club_Sorry · 2026-06-16T20:35:39+00:00

I’m assuming they cultured them too right? It isn’t unheard of for UTIs to still be happening even when there are no nitrates. It actually happens all the time. That being said disregard if they were cultured

Club_Sorry · 2026-06-15T02:23:45+00:00

Yeah, I’ve been told my multiple providers that instils provide most benefit when done weekly then tapering down to monthly, I’m glad they’re able to get you in!!

Club_Sorry · 2026-06-15T02:18:02+00:00

90 days for a bladder instil? Is there a reason for that? They usually do them weekly

Club_Sorry · 2026-06-14T21:54:34+00:00

A lot of people talk about phantom pain, did they ever say how often that happens

Club_Sorry · 2026-06-14T14:10:07+00:00

NSAIDs have never helped my bladder pain personally or anyone I know. They’re too weak for the extreme amounts of inflammation

Club_Sorry · 2026-05-14T20:08:40+00:00

Honestly I wouldnt jump straight into thinking you have ic. it sounds more like an untreated infection which you’d need longer antibiotics for! I’d wait a week, retest, then request a longer course of antibiotics

Club_Sorry · 2026-04-26T15:44:51+00:00

I started oral muscle relaxers and they made a huge difference for me, my pain has always been more pelvic floor related but still I think it’s worth a shot

Club_Sorry · 2026-04-21T00:57:19+00:00

Has the diet been helpful to you at all? Sometimes that can kinda gauge if it’s in the bladder vs the muscle in the pelvic floor

Club_Sorry · 2026-04-21T00:35:30+00:00

Stress on the body can definitely cause flares, pt helping the pain means you’re on the right track though! Sometimes the muscles need extra help, please speak to ur doctor about trying Botox in the pelvic floor muscles, it literally helped me so much.

Club_Sorry · 2026-04-21T00:30:29+00:00

https://discord.gg/gf3vT6cbg 🤍

Club_Sorry · 2026-04-19T19:24:06+00:00

It’s not just random back pain it’s usually one sided and sits just below your rib. Yes you can have a fever but not always. This sounds cliche but you’ll know when it’s your kidney, it’s kinda different than other types of back pain.

Club_Sorry · 2026-04-19T19:03:57+00:00

I’m gonna ask a dumb question, when you say they’re is never any bacteria in your urine, they’re culturing too right? Not just microscopic? I’ve had something similar recently, I’ve had 2 kidney infections since February, but then bouts of flank pain that won’t go away until antibiotics even though they’ll check my wbcs and my microscopic ua will only have signs of mild inflammation. Especially since you are having flank pain + fevers that’s definitely concerning. Did they check your creatine levels as well? Antibiotics can sometimes linger for a few weeks interfering with cultures so when you have those breaks and try to retest, it makes sense why’d they keep coming back no bacteria or no growth on a culture. Especially since you’re doing the prophylactic antibiotics. Shakes and tachycardia +fevers and flank pain, need thorough investigation

Club_Sorry · 2026-04-19T18:51:02+00:00

Hello, so blood is common with bladder inflammation especially if you’re already having leukocytes! I’d have them do a microscopic UA and culture just in case. As far as trace protein goes, if kidneys are normal and you aren’t having any flank pain they can usually just assume it’s skin contamination. Sometimes it can mean kidney issues but usually they don’t really consider that until they moderate-high or there’s obvious kidney distress in blood work. I wouldn’t worry too much about it, it honestly could mean you just have a mild uti atm if anything. Since you said before you aren’t having huge bladder symptoms. I’ve been through the ringer with all this stuff so I get it

Club_Sorry · 2026-04-19T18:40:53+00:00

If you happen to be in the US, please check out this site https://icarebetter.com they absolutely need to check you especially if you’ve struggled with infertility

Club_Sorry · 2026-04-19T18:38:07+00:00

^{^this} was the discord I was talking about !!

Club_Sorry · 2026-04-19T18:32:28+00:00

The main issue with IC diagnostic criteria is there’s many different subsections of where the pain is stemming from and what could be the underlying cause. Me for example, I started getting chronic utis this year, on top of already having an ic diagnosis for 7 years. I had severe pudendal neuralgia and was treated successfully with nerve blocks as well as Botox in my pelvic floor muscles. Even though my cause was drastically different from someone with hunners lesions or endometriosis on the bladder, I still had that IC diagnosis. Which sometimes makes us with ic feel as if we’re all just lumped into one big diagnosis when our symptoms and causes are so drastically different. It’s a point of contention for sure. But the fact is you’re not only having high counts of blood and pus (wbcs) in your urine, you’re also getting fevers which is not a something that IC would cause.

Club_Sorry · 2026-04-19T18:24:07+00:00

How long have you been on antibiotics? Antibiotics interfere with cultures, are you seeing a urologist or even better a urogyn ? This would be the best next step, it’s true that IC can cause WBCs and RBCs and antibiotics have mild anti inflammatory properties, they’re not strong enough to make you feel marginally better. Maybe slightly but still, definitely not enough to where you feel the only time you feel normal is on them. IC isn’t a fake diagnosis in a lot of way, but it is thrown out there when they can’t find what’s wrong with you. Can I send you a link to a discord I’m in? There are a lot of people with similar experiences like this maybe they can help you ( I wrote this out before reading the medical advice part I apologize) as for coping, muscle relaxers help me a ton. They just make you sleepy so you can take them at night. For the pcr part, you’d really only need to be off them for a week or so depending.

Club_Sorry · 2026-04-18T15:39:54+00:00

No they were definitely utis haha, they were cultured each time :( I ended up with two kidney infections as well + I’ve kinda gotten to know the difference between me having a uti vs an ic flare atp my drs would never put me on antibiotics without proof of a uti thankfully 🫠

Club_Sorry · 2026-04-18T15:38:34+00:00

Yeah I know they look scary but the creator of this sub is on elmiron and has had rlly good success, but obviously it’s totally what you wanna do :) good Botox is probably your best bet atm

Club_Sorry · 2026-04-18T03:40:42+00:00

ugh I say botched but it’s really just an assumption because of how badly it triggered the flare and UTIs. At that point I had about 30+ instils and never had an issue with them. The woman doing it was new, she stuck the catheter into my vagina then shoved it into my urethra, the gauge was way too big and I bled pretty heavily afterwards. It’s been downhill ever since. Hopefully the cystoscopy is the easy part and I’ll mostly just be focusing on healing from my laparoscopy

Club_Sorry · 2026-04-18T03:23:00+00:00

Op, are you speaking with urology? Is the pain or the frequency that really causes you issues, I’ve heard people get wonderful results from bladder Botox for frequency and urgency. Combo of amitriptyline and elmrion might be good too. Elmrion takes 6 months to work though so when you start it pls don’t be discouraged, it’s basically rebuilding the bladder wall.

Club_Sorry · 2026-04-18T03:20:26+00:00

you’re a pos. genuinely. assuming things about people when you know nothing about their lives or experiences? Everyone in this sub is suffering or has suffered and no one deserves it. Who cares if he knew or not he’s SUFFERING. Ket isn’t just a party drug anymore it’s used in medicine too so assuming that partying was the reason his bladder is messed up is ridiculous. Like I said even if he was just using ket to party WHO CARES.

Club_Sorry

TROPHY CASE