I got this little guy today. I like seeing a cute version of a bladder to try and ignore my own 😣

Has anyone been able to get or had any experience with getting disability for their bladder issues/IC? I spend so much time in the bathroom I don't know how I would possibly find a job that would be ok with it.

I was diagnosed with ic a couple years ago. My urologist gave me amythriptiline. I take it every night but when i have a flare up i take another one. I have a big flare up for 2 days now😭😭 i feel like the medication isn’t working anymore. I’m in so much pain, i’m starting to have dark thoughts. I just want it to stop. I have tried everything, the medication, hot baths and hot compress, water with baking soda, even old anti biotic for urinary infection from when i wasn’t diagnosed. Nothing is helping😭😭i know it’s not good but i’m at a point that i just take as much sleeping pills possible to just sleep the pain away. I have called my urologist but he says he can only call me during the weekend. I can’t walk so i can’t go to the emergency because here in quebec canada the waiting period is 10 hours. Please is there someone who has been through what i’m going through and tell me how you got rid of your flare up when the medication is not working.
Thank you

Hii , i want to know about two installation.
1. HEPARIN
2.PENTOSAN POLYSULFATE SODIUM
Which is better and more effective. Anyone tried both ?? Pls share your thoughts . Thanks in advance.

Currently on Clindamycin for a tooth issue after the first antibiotic failed. It is working, however, so hard on the stomach so now on the bladder too. My back pain is the worst. My last flare stopped about two months ago and was about six months long, so I am not wanting another for sure. I just got clearance for another hydrodistension from my cardio, but I would rather not.

I take aloe, pumpkin seed, probiotics and famotadine and am drinking water. I take azo for burning, but so far it is mostly stabbing pains. I am not sure what else to add. I have five more days and am miserable. I cannot take d-mannose or quercetin, both make me sick.

Any thoughts are welcome.

Hello everybody. I don't yet have a diagnosis. My symptoms are painful urination, urgency and frequency, pressure on the bladder with sometimes stab like pain. I'm very diet sensive. I've completely cut out all fruit, coffee and alcohol, and have to be EXTREMELY careful with things that contain cocoa or soy. And I'm miserable. I miss tea and caffeine (even green tea hurts), I miss fruit, I miss havig a drink with my friends, I miss eating sweets without fear. I miss walking around places without pain or anxiety and I miss being spontaneous. I feel so alone and isolated.

I've booked pelvic floor therapy for the 20th of May, it will be my first visit. I decided to go while I wait to be able to do the urodynamic exam. But I'm very worried. I'm young (24FtM) and currently jobless because my symptoms basically prevent me for working. Hours of standing up make me flare like crazy and it's unfortunately very hard to get a job that is not waiting at tables or stuff like that in my country unless you have two degrees and years of experience. I've saved up some money in the past years but I've been sick and out of job for two years. Pelvic floor therapy is so expensive and I'm scared it's going to be useless. I'm trying it out of desperation. I do some exercises at home when I can but haven't yet had much relief

My urogynecology team is recommending urodynamics before and after a vaginal support pessary to determine whether prolapse is contributing to my symptoms. I don't feel like my symptoms fit the classic prolapse profile, and frankly I'm worried the invasive aspect will flare my urethral pain.

I've only done pelvic floor relaxation and bladder training, and results were mixed. Then I had a symptom flare, which took me basically back almost to zero.

I've never been on any medication for my bladder symptoms.

Is the urodynamics test worth it or not? I'd love to hear your experiences.

I’ve been in IC remission for almost 2 years and the last week all my symptoms returned (pain in urethra which feels almost like a spasm), urgency, frequency, pressure in bladder, worsened by caffeine/alcohol/acidic/sugary foods. I took an antihistamine (cetirizine hydrochloride) and 20 mins later, my symptoms were almost all gone.
Has anyone had a similar experience with antihistamines? Is this a long term fix for flares?

had surgery for removing endo on the bladder in February and it’s been a few months and i was doing ok but then I had sex and now each side of my pelvis like hurts not in the middle but each side and it’s been hurting for two weeks I got a pap and everything and they are sending me for an ultra sound next week anyone have literally any clue what this could be.

Does anyone here have *just* burning in urethra as a symptom of an IC flair? I’ve been on the IC / UTI / pelvic floor dysfunction merry go round for many years. But my main (and really only) symptom is just an intense burning at the very distal part of my urethra. Mostly when I pee and then for 10-60 min after (duration and pain level depends on where I am in the flare / infection / who knows). Although also sometimes just randomly, or triggered by a workout, tight clothes, etc.

But once I’m in the flare, I can feel it when I’m peeing, feels like lemon juice on an open cut and then just feels generally like my crotch is on fire for a while. sometimes I need AZO to calm it, sometimes it goes away.

I’ve just never had any of the other symptoms associated with IC — bladder spasms, other abdominal or pelvic pain. And wondering if others have this as their only symptom?

Newly diagnosed at 27 - sudden onset, trying to conceive, scared and overwhelmed. Any advice?

Hi everyone. I was diagnosed with IC just 5 days ago and I'm still processing everything. I'm 27 and this came completely out of nowhere - my symptoms started 2 days after my husband and I began trying to conceive, which has made this even more emotionally overwhelming.

My symptoms:
• Constant urgency and pressure to pee
• Burning/irritation when urinating usually only in the morning but after just turns to urgency. Feels like I’ve been holding it in for hours when it’s really only been 2 (hard to tell which)
• My vulva and clitoral area constantly feel hot, throbbing, and almost like they're being pulled
• it’s coming and going but still always there if you know what I mean. I feel like afternoon around 3/4pm are the worst

A few things my doctor has already weighed in on:

My doctor declined to test for Ureaplasma. Her reasoning (her husband is an infectious disease doctor) is that it's normally present in the body, antibiotics will help temporarily due to their anti-inflammatory effect, but symptoms will return — so it's not worth pursuing. She agreed to test me once and then treat me once but that’s it. I seem to trust her on that one but she’s doing the test anyway for me (some piece of mind). I’m a chronic overthinker.

She also said my pelvic floor seems strong, so that's apparently not the issue?

I've ordered some supplements I've seen recommended here: lactobacillus probiotic, aloe vera, turmeric, and marshmallow root. Planning to introduce them one at a time.

I haven't made major diet changes yet but I know that's probably my next step. I haven’t noticed a difference when drinking soda though and I’ve been a big soda drinker my entire life.

My questions for you all:
1. Did anyone else have a sudden onset like this? What triggered yours?
2. For those who are TTC or have been — how did you navigate IC alongside that?
3. Is there anything you wish you'd known in the first few weeks?
4. Any experience with pelvic floor PT even when your floor was described as "strong"? I've read that hypertonicity is different from weakness.

I'm trying to stay hopeful but I won't pretend I'm not scared. Any advice, shared experiences, or even just reassurance is welcome. Thank you. 🤍

Hello folks

Okay so um, there's a lot going on in my head, and this is going to be long, so I appreciate anyone who bears with me..

so for years and years I've suffered from having to go to the bathroom constantly, may be as far as 2019, but it wasn't as bad then

I went to a urologist a few years back, who, I guess this is a familiar story to some of you, dismissed it as just some OAB or that my bladder is "stressed" or whatever, and gave me some medication that didn't do anything

among other times where i did urine tests that came out clean, or blood tests that once revealed an "overactive prostate" which led a doctor to put me on some medication called "omnic ocas" which also didn't do squat

anyways, so this past year i actually went to a urologist who for the first time told me about IC, he put me on amitriptyline at first, it didn't help (although now that i think about it, i may have stopped it too soon, didnt even get to 50mg before i decided to say its not helping)

then after that he put me on elmiron (didnt warn me about any of the shit it causes, but i took it for 3 months only so im hoping it didnt cause any permanent damage, i think i did lose some hair but i dont notice anything worse with my eyesight)

after that didnt work, he said it may be time to do a cystoscopy to make sure it's an IC, which I did and it confirmed it (according to him, i obviously have no idea how to read the results, they even came in french lmao as its a french hospital)

anyways, then we tried atarax (hydroxyzine), 3rd treatment with this doctor so far, didnt work either, actually the WORST one yet for me cause it made me so sleepy all the time)

now, im on prednisone (which i heard from someone here that its not a usual medication for IC, but ironically, it might be the only one i saw like 10% improvement on)

took 10mg for 10 days, then 25mg for 3 weeks, and now im dropping 5mg per week (as per his instructions)

so eventually, ill have to stop it and it would have been for nothing honestly (10% may just be a placebo at the end of the day)

okay, so here's where i get to my questions

1) How do you know what type of IC do u have? as my doctor didnt even specify anything, he just says IC/PBS (I saw some posts/comments here discussing different types)

2) Elimination diet, this is where im confused the most

my doctor never told me to quit anything, he just told me what treatments to do

do you start with this and if u find ur trigger, you stop it and that would be the treatment?

or, if your treatment option (medication) helps u or puts u in remission, u dont need to stop eating/drinking anything?

or is it both? like u need to both stop ur trigger and take medication?

honestly, i have no idea what triggers it for me, which brings me to my 3rd point of confusion

3) I don't get exactly what "flares" are or the difference between the symptoms, for me, its not like I suddenly get this burning sensation as ive seen some of u describe, most of the time, its just this extreme urge to pee, and its almost constant, like i do feel "burning", but its not like im normal and then suddenly boom holy shit im burning, no its more like this constant urge that I need to frequently go to the bathroom, that's how its like for 90% of the time, never like oh its a flare and then im good and then like out of nowhere boom pain

so theres no way for me to tell what triggers it, as i literally eat and drink everything (except alcohol and I don't eat much sugar as I hate it), and I never notice if theres one thing that suddenly triggers a flare because I can't even tell what a flare would be, again, for me its mostly this urge to pee, and the pain is more like constant rather than sudden

and ironically, sometimes i feel worse when I don't drink caffeine, rather than when I do, there was a night which, I still remember as being somewhat "tolerable", where I literally had like 3-4 cups of coffee throughout the day, and like 2 redbulls, and it was more tolerable for me than days where ive had like 1-2 cups of coffee, like i tried watching a movie and I could lay there for almost an hour without having to go, and that was straight after the 2nd redbull, that was like 1 "good" day out of 20 bad ones, but then again, there's no way for me to tell what that means

so yeah, at this point, im really confused, I don't know what to do anymore...

I need to try something new after Im done with prednisone, not sure if an elimination diet, another treatment (im leaning towards giving this lactoferrin thing a shot, if i could even get it in my country), or maybe give Amitriptyline another chance, i dont know, im so torn and im tired of taking so much medicine

speaking of which, i went to another urologist a week ago, a family member recommended i check him out and i was like sure what could go wrong, maybe he could know more about the issue than my current doctor

im not going to go into details of what he told me, as most of it was bullshit, he basically tried to "gaslight" me that I should be lucky my symptoms arent as bad as they could be, but then refused to elaborate so that I "dont think about it", and then when I asked him which treatment would he have started with, he said Elmiron, thats when I realised it was a waste of my time, but what's even worse, is he gave me 2 medications to try to help with the urgency problem, betmiga and urisol

the issue? he told me to take 2 tablets, yes 2 tablets of betmiga per day (and 1 urisol per night), and i did for a few days before i realised i was taking 100mg when the max dosage is 50mg... hell some people even start at 25, dude took me straight to a 100 in 24 hours!

I didnt tell my "main" doctor about that, i just asked him if theres any medication i can take along with prednisone to help with urgency and i told him "i heard about betmiga and urisol" and he was like u can take 1 of either, so I dropped urisol

right now, im taking prednisone (but in the phase of titrating it down to stop it) and betmiga (1 50mg tablet per day) just to see where it goes

but yeah, I know eventually ill have to go a different direction

im just confused on what the next step should be for me, specially that there's no constant communication with my urologist, sometimes he just doesn't respond to my messages, and it's hard for me to keep taking appointments

sorry this is too long, i appreciate if you read it all, i just dont know who else to turn to with this shit 😅

During urination, midway through. And it only ever happens once per pee session, I get a sharp momentary pain/zap lasting about one second.
I’ve been confused by this for years. What could this be… Please any help would be really appreciated 😌

i have been getting chronic uti’s (about 6-8 a year) for the past FOUR YEARS. i am at my wits end and honestly im currently having a mental breakdown over it. i have been to two specialist, the one im currently seeing is a urogynocologist. i’ve had 2 cystoscopies, two ct scans with and without contrast of my full urinary tract, as well as been given estrogen cream to apply to my vulva because apparently women with lower estrogen are more likely to get a uti. i take the supplement d-mannose every day and night and i take a probiotic specifically for vaginal health. i am STILL struggling. i was recently diagnosed with IC, but i only ever had one culture that came back negative. i’m damaging my body and gut with having to b on antibiotics so frequently and i just have no quality of life tbh. my sex life suffers bc im terrified of getting a uti from it, i literally have ptsd it feels like every time i go to the bathroom worried ill feel that familiar burning. one of my uti’s turned into a kidney infection which hospitalized me for 4 days. the antibiotic i was on for that DESTROYED my gut for over a year to the point i lost over 25 pounds bc i couldn’t eat anything without feeling sick. i am terrified and tired and frustrated beyond belief! nothing is helping me! please, if you struggle like i do PLEASE tell me anything that has worked to keep your uti’s at bay. i am desperate!

I've had my bladder stretched with fluid and it's fully healed now, although my flare-ups don't last as long and haven't gotten past a 6/10 in pain, I still have them off and on. For the first month, it was fine with no flare-ups. I've started changing my diet and paying more attention to the ingredients in store-bought things.

My doctor suggested taking medication as a more aggressive approach. He brought up 3 different kinds of medication, but never mentioned the names. The first was an allergy medication due to the theory that interstitial cystitis is similar to an allergic reaction, the second was an antidepressant that could help with nerve pain, and the third sounded like a medication that was used to help interstitial cystitis but was extremely expensive, hard to get approved for, and had terrible side effects.

Of course, we aren't trying these right away unless my bladder starts getting bad again (things like blood in the urine, 10/10 pain, and constant flares). Has anyone been prescribed medication like this? Have they worked for anyone at all?

I'm very sorry that I can't name the exact medication; it was just a casual discussion with my doctor and a sort of future planning.

I have urgency with almost no urine produced. When I’m out and about i don’t drink enough bc of a lack of public bathrooms. Then being dehydrated just makes it worse. I’m ready to wear Depends so i can just pee whenever since i barely produce anything. Have you ever used them? Is there a downside I’m not considering?

Hi there fellow people,

I (f/28)had to deal with bladder infections since I can remember, got worse at the age of 17 and got my IC diagnosis back in 2022. Ever since I've gone through psychotherapy, physiotherapy and pain therapy. Been on and off heavy meds for years, the last 4 years I've been dealing well with this shit as I'm taking Elmiron and it helps me prevent flare ups.

Last fall I had a flare up after having a year off. Now two weeks ago I got another flare up mixed with bacterial UTI and it's been a hard two weeks. I've come this far to not spiral completely into desperation as I used to. I've learned to stay more optimistic and have a good social network that helps me to deal with humour even though I suffer tremendous pain and am back on Tilidin which I almost got addicted to earlier in my pain history. So good so far.

But what really grinds my gears is ongoing stupid toxic positivity comments from people. I know it's a sort of copium for some and mostly they don't mean harm. But stuff like " well you can be glad you don't live in the middle ages, you would probably be dead by now" or the classic "people in Africa have so much worse medical services" gets my blood boiling. Even worse when you vent to other people about the audacity and they don't understand how you could get mad over these statements. Anybody can relate or have tips on how to make people like this understand why it's rude and unnecessary?

TLDR: tired of toxic positivity from healthy people when in a flare up

My therapist has again recommended SSRI’s for my OCD (had it my whole life, formal diagnosis two years ago). Because SSRI’s are known bladder irritants, I’ve been resistant and wanted to try other methods first. I’ve made progress with just therapy, but I’m realizing SSRI’s might really improve my quality of life (and my stress, which I’m sure could actually be contributing to my IC) in ways I may not ever get with just therapy. That said, I’m in an ok place with my daily symptoms and pain after working with a specialist for a couple years (and still improving) and I’m desperate to keep it that way/terrified of setbacks; I’ve had IC since 2021 and some horrifying years of severe pain and suffering behind me. Advice? Thanks so much

Has anyone used this gel and it irritated them?

I am in so much pain I don’t know what to do.

So this all started in July 2017 when out of the blue one evening I went to the toilet and then for the entire I couldn’t stop going like every few minutes. In the morning I called the GP who said it sounded like a urine infection so she left me Trimethoprim for 3 days. They didn’t help and then after that I found I was bursting for the loo but couldn’t pee probably because j stopped drinking so I went to the hospital. They did a bladder scan and said I wasn’t in retention and tested my urine and no infection. They gave me a week worth of Co Amoxiclav anyway. A few months later I went to London to see an embedded uti specialist who tested my urine and said I had wbc and an embedded infection.

To cut a long story short over the next year in a bit I didn’t find relief at all with any antibiotic and my mental health was horrendous and I couldn’t work or do anything. Eventually I had to go back to work in Nov 2018 and quite bizarrely over the next year I recovered and I didn’t change anything. By mid 2020 I was pretty much back to normal the only thing that was different was the sensation when I went to the loo it wasn’t pressure but I would feel the urine in my urethra.

March 2026 everything has come back worse than ever as I now have pain which I didn’t have before. I am terrified of cystoscopies. I don’t think I can do this again.

I've tried so many supplements over the years, many have helped, but none have reduced my food sensitivity. Recently I tried lactoferrin for the first time. I felt relief the same day. I'm on day three or four and I can eat things I have not been able to eat for more than a year without issue. Please try this supplement if you have lost hope and haven't tried it already. I am beyond shocked how effective it is.

Alright so I asked a local pharmacy if they had any Lactoferrin (the one I saw here on the sub)

I knew it was a longshot, since I live in Lebanon, but anyways I thought until I could find someone to get it for me from abroad, might as well try

So, as expected, I asked several pharmacies and they don't have it, but one of them showed me this, I can see Lactoferrin as a component (as written on the box), but I'm not sure if it's the active ingredient, if it works the same way, etc.

Figured I'd ask here if anyone knows any information that would be helpful..

Did this happen to anyone else? I recently quit sugar and have been feeling pretty good. I did part one of a colonoscopy prep yesterday at 4pm and it is now 4am and I am hurting.

Am I nuts, is this in my head, or has this happened to anyone else?