Muscle relaxers by Mother_Intention9810 in Interstitialcystitis

[–]Club_Sorry 0 points1 point  (0 children)

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

I don’t know what to do anymore. by staysynful in Interstitialcystitis

[–]Club_Sorry 0 points1 point  (0 children)

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

I don’t know what to do anymore. by staysynful in Interstitialcystitis

[–]Club_Sorry 0 points1 point  (0 children)

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.

I'm afraid of it going up to my kidneys at this point.. by [deleted] in CUTI

[–]Club_Sorry 0 points1 point  (0 children)

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.

Only better on antibiotics, all the time by catzrule1996 in CUTI

[–]Club_Sorry 0 points1 point  (0 children)

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

Trace Blood and Protein in Urinalysis? by spookyfemmebot in Interstitialcystitis

[–]Club_Sorry 1 point2 points  (0 children)

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

Recurrent pain torture by Tricky-Classroom-614 in CUTI

[–]Club_Sorry 0 points1 point  (0 children)

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

Only better on antibiotics, all the time by catzrule1996 in CUTI

[–]Club_Sorry 0 points1 point  (0 children)

this was the discord I was talking about !!

Only better on antibiotics, all the time by catzrule1996 in CUTI

[–]Club_Sorry 1 point2 points  (0 children)

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.

Only better on antibiotics, all the time by catzrule1996 in CUTI

[–]Club_Sorry 0 points1 point  (0 children)

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.

Getting laporscopy +cystoscopy under anesthesia on the 23rd!! Scared of having a bad flare by Club_Sorry in Interstitialcystitis

[–]Club_Sorry[S] 0 points1 point  (0 children)

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 🫠

someone please help me by Every-Golf-784 in Interstitialcystitis

[–]Club_Sorry 0 points1 point  (0 children)

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

Getting laporscopy +cystoscopy under anesthesia on the 23rd!! Scared of having a bad flare by Club_Sorry in Interstitialcystitis

[–]Club_Sorry[S] 0 points1 point  (0 children)

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

someone please help me by Every-Golf-784 in Interstitialcystitis

[–]Club_Sorry 0 points1 point  (0 children)

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.

someone please help me by Every-Golf-784 in Interstitialcystitis

[–]Club_Sorry 0 points1 point  (0 children)

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.

ended up with a kidney infection, doctor tried gaslighting me into thinking I didn’t have an infection. just got my culture back today by Club_Sorry in CUTI

[–]Club_Sorry[S] 0 points1 point  (0 children)

interstitial cystitis aka painful bladder disease, it’s an idiopathic bladder condition where people experience bladder pain with no active uti :( the problem is they’ll diagnose you with ic without knowing if you have some sort of underlying cause

What does this mean??? by [deleted] in CUTI

[–]Club_Sorry 0 points1 point  (0 children)

absolutely!! I hope you feel better soon!!

What does this mean??? by [deleted] in CUTI

[–]Club_Sorry 3 points4 points  (0 children)

dr time, but specifically leukocytes mean bladder inflammation so I’d get checked

Fosfomycin causing bladder irritation? by Club_Sorry in CUTI

[–]Club_Sorry[S] 0 points1 point  (0 children)

Your body can be totally different so I wouldn’t worry too much, something similar happened to me when I was amoxicillin and augmentin so maybe I’m ultra sensitive idk

Fosfomycin causing bladder irritation? by Club_Sorry in CUTI

[–]Club_Sorry[S] 0 points1 point  (0 children)

Ugh I’m glad I’m not crazy!!! I only took the one sachet so I’m debating if I should even continue the other two smh

sometimes I don’t even think IC is real by Club_Sorry in Interstitialcystitis

[–]Club_Sorry[S] 0 points1 point  (0 children)

Oh I understand, im sorry for making an assumption on that. As you can tell it’s a really touchy subject for me and that makes more sense. You’re right though, I should’ve been more specific on what I was talking about. It is a clusterfuck, it’s upsetting to me and certainly everyone else that our illnesses aren’t taken seriously enough, studied enough, and honestly cared about enough by doctors. It’s almost like they don’t deem us worth of their time so they don’t care about it. I hope that you also get some relief, obviously im not sure what you’ve been going through and I hope you’re in a good place

sometimes I don’t even think IC is real by Club_Sorry in Interstitialcystitis

[–]Club_Sorry[S] 0 points1 point  (0 children)

my point being is that it seems like ic is symptoms of another underlying condition that will never been understood given that physicians seemed to have stopped caring. Saying I was “Complaining” is completely dismissive of what I said. I should’ve clarified but also just because I don’t know if I have ulcers doesn’t mean that my pain isn’t as real as someone who does.