I don’t get the “burning pain” that i see so many talk about. I just get a deep ache as it starts to fill and makes me go pee very, very frequently. I get relief after peeing until it starts to fill again.

Since i don’t see many with this symptom, those who DO have it, what works for you? What gives you relief?

I genuinely want to cry and need some support.

I have been on Ketamine since May and my doctors have been thinking it is IC induced from therapeutic mental health ketamine.

It has been scary what I have been going through and painful. I went on Ketamine and Spravato pages to you know warn them because this is scary, painful and nobody deserves this.

People told me:

Your fear mongering

Your story doesn't add up

I'm a man in my 40s and I never had bladder issues

60 mg wouldn't do that

Well you know what doesnt add up spending a month going from doctor to doctor going nowhere because American healthcare is a joke. I know Ketamine is a wonderful drug for mental health, I noticed the side effects.

Complelty downplaying and invalidating my experience

I'm so hurt I thought people on reddit were nicer. I deleted my posts because I couldnt bear the bashing I just wanted to help

for the past 7 years, i’ve had constant, 24/7 pressure in my bladder. to spare you the details it’s been a living hell. but could this be something that is an endo symptom? this is what my family is looking into now and i wanted to know if it’s a possibility.

Has anyone had any experience with their bladder involuntarily spasming during the bladder installation process and causing the entirety of the medication to leak out eventually? I had my first instillation today and I had some leakage during the injection of it but since it was my first one, they had me wait 15-20 minutes to make sure I tolerated it and in that time, I ended up progressively leaking out pretty much the entirety of the medication (when i went to the bathroom, basically nothing was in there). Trying to figure out any possible solutions to avoid this happening again. It’s also not painful (other than some pain from the catheter) when it happens, it’s just involuntarily leaking out

Hi All,

Looking for some help as I’m going through my first serious flare in 6 years (yay but BOO) I forgot how demoralizing this is 😔

I think I caused the flare by taking Advil cold and sinus for 4 days straight - has anyone had a similar situation? And how did you get it under control?

I went to a urogynocologist and he was AWFUL and just dismissed me and did urodynamics for no good reason - I’m in so much pain so could really use some support and tips. Thanks all so much in advance. 💛

waiting for cystoscopy but think I may have IC. I’ve had bladder issues for years that aren’t uti. I was good for months but recently it began again. I had started running again does anyone know if running triggers it? I notice if I stop and rest few day I improve. also notice if I get stressed tingling immediately returns like within minutes pressure and tingling but don’t know if this is in my head or what bc it’s like so quick can that be real. I live with pressure low in abdomen plus a nerve type pain that extends from low ab to big toe like constant ache not sure if related. I have 20 blood number ( microscopic ) I never see blood but on numerous labs last couple years.

burning? bladder filling pain? urgency? frequency?

i go next week for my first one & nervous

Its been 2 days and i am having cramp in my lower right abdomen side (like uterus area). Its not burning sensation when i pee but cramp, only on my right side tho. I don’t think its a UTI, never had it before, but not sure. I don’t have other symptoms either just cramps when i pee and a little when i don’t. I am also ovulating so it might be ovulation cramp thing? Any suggestions or help.

So I tested negative finally for c glabrata by a swab culture , but still having itching , bladder pressure and frequency, did anybody have lingering symptoms for a while after treatment ? I have intersitial cystisis so it may affect how my bladder feels but I’m also concerned I have a fungal uti, has anyone felt like this for a while after and it cleared it? I’m hoping I don’t have a fungal uti , I’m gonna get checked for it Thursday along with another swab culture

I don't know what to do anymore. Driving to work is not so bad for some reason, but the drive home is SO stressful to me. I drive 40 minutes to work and 40 minutes back. I pee before I leave the house and I pee before I leave work. In the morning, I'm okay. On my way home in the afternoon, I am tense and sense an impending time bomb on my bladder. If that makes. Do you think it's cause I stopped doing yoga? Does that help with calming the nervous system? Is it because I don't get enough sleep? I live with my family still and there is a lot going on and it's hard to be on a strict routine. But I HAVE to figure this out. I hate not being able to go anywhere! Please help me.

Hi fellow IC sufferers,

I have been diagnosed with IC last year, after 15 years of chronic UTI's.
Like many of you experience as well, every time I feel my bladder is flaring, I go to the doctors to test my urine to see of it is just an IC flare, or a bacterial infection.
80% of the time I have a real infection, always with E.coli.

In the past 3 months I have taken 4 antibiotic courses, 3 for 1 infection that wouldn't go away. After the third course however, my urine came back clear: no more E.coli in my urine.

I felt good for a couple of weeks, only to have symptoms AGAIN. Since I didn't think it could be another E.coli infection I assumed it was just a flare and decided to sit it out (which it didn't ofcourse).

I tested my urine yesterday and it came back positive for E.coli. I'm at my wits end.
I eat so clean, I shower everyday, I wipe front to back. I try to avoid anything dirty coming near my urinary tract.

I actually start to think that it might be the microbiome of my husband's private parts that are carrying E.coli?
In the past we had anal sex often, something that we don't do anymore because of all the UTI's coming back. But I wonder if E.coli can stick to the skin and re-infect me over and over?
Have any of you ever had your partner treated? Did it help?

Thank you!

Hello all, this is my first post in this sub after suffering severe difficulty with my bladder for years now and getting nowhere in it being explained. I honestly just feel like I’m going crazy and I’m hoping for some support and advice?

Long story short: I’m 30F and have every symptom of IC but I’m not diagnosed, I do have endometriosis and adenomyosis.

My endometriosis surgery removed adhesions from the outside of my bladder, but I was still in excruciating pain. So, I pushed for an internal bladder scan to specifically check for endometriosis inside.

I had the internal bladder scan (cystoscopy) and the doctor doing the procedure said my bladder is a textbook example of a healthy bladder. I followed up with the urologist straight after, and he said nothing was found, and he referred me back to gyno, saying my “bladder pain” must actually be a gyno issue.

I’m honestly starting to feel crazy at this point. However, after a couple more appointments with gyno, an MRI showed severe adenomyosis in my uterus, and it’s quite close to the bladder, it seemed that my bladder might be pressing into inflamed uterus and causing all the pain. I finally thought I’d found the source of all my pain – so I get a total hysterectomy.

A month after my surgery, and I’m feeling gobsmacked, the pain is still there. It still hurts unbearably every time I go to the toilet. Antibiotics are doing nothing. I need the toilet all the time to the point I feel I can’t go on days out. I’m waking in the night and feel like I need the toilet all of the time.

I’m starting to feel like I had a hysterectomy for no reason, which is a major blow considering the weight of the decision. The pain I’m in is real. It’s sharp, severe, and there’s no uterus. It points back to my bladder.

Just from doing internet research, I’ve feel like I may have IC but I dismissed it when the bladder scan came back okay. My main question is whether Interstitial cystitis can realistically not show up in a bladder scan? Would it have shown up obviously? I know the urologists were just checking for endometriosis at the time, so I don’t know if this has gone missed.

Weirdly, after my internal bladder scan I felt much better for around 1-2 months. They filled my bladder with some water. It gave me a UTI which was treated with antibiotics, but I felt almost pain-free for a month after that, but now it’s back again. I’ve since been on the exact same antibiotics just to see if it’s a chronic UTI, but it did nothing.

Thank you if you read all that. Just hoping for some thoughts and advice on what steps I might be able to take in this position? I’m at a loss. Thank you.

Hey I was wondering if anyone here has ever had cdiff and also had to deal with IC flare at the same time? How did you manage and survive? I also have MCAS. I’m in hell at the moment and would love any advice.

It’s been a month since I got hydro ans Botox in my bladder and honestly I don’t feel any different from before. Is it too early to Judge? I noticed The urgency kinda 7% improvement but other than that no. Before the procedure I didn’t have lower belly pain now I get pain and burning sensation. Also urthera kinda got worse I feel poking when I urine.

I'm 32, male have had a ketamine addiction for about 3 years, over the last 2 years its been daily for the most part. ranging anywhere between 1g and 5g a day

I've been having cystitis pains for over a year and it's just getting worse. Whenever I try to stop, the pain gets worse so never make it past a couple of days off it.

I'm at a point with the pain where I can't walk, or even sit without being in agony, on top of this, due to straining when trying to urinate, I've triggered hemorrhoids which is equally as painful, it's a constant burning, any movement or even sudden dumps of adrenaline can trigger a piercing pain all the way through my urethra. My question is, has anyone experienced this and have they recovered? And if so how? I know stopping is the first and best thing to do but I'm currently in the headspace where I want to actually end it.. I'm really hoping there's someone that's been here and got better because I can't live like this forever

Hi everyone, I’m 22F and getting pretty desperate for answers. This has been such a debilitating journey for me. To quickly summarize my history:
I got an IUD placed in 2024 and developed my first ever UTI shortly after. I tested positive for bacteria and was given antibiotics. My symptoms at the beginning of a UTI includes extremely intense urethral and vulvar burning and discomfort. After I finished the antibiotics, the symptoms subsided about 90%. I had a lingering feeling for weeks until I developed bilateral back pain, which I assumed to be my kidneys. I was given a second course of antibiotics but tested negative for bacteria.
I had no symptoms for a full year following this. I had my second UTI in March of this year where I had almost the exact same experience. And then my final and current flare beginning in August. However, this time around I never tested positive for any bacteria. I am negative for plasma, bacteria, STDs, and even did an ultrasound to rule out ovarian cysts. I have now done 2 courses of antibiotics (doxycycline and ciproflaxin) since August and I still have daily burning with urination and a persistent urethral discomfort that lasts throughout the day.
I also want to add that every uti/flare I’ve had seems to occur after intercourse with my boyfriend after a period of us being long distance. So every UTI happened almost immediately after intercourse after about 2-3 months of abstinence.
I also developed severe right sided flank pain in July of this year that has been extremely debilitating, but I’m unsure if they are related. Every doctor I have been to has been wildly unhelpful. They stuck me with an IC diagnosis but I feel that I want further diagnostics, further investigation, just something more.
Is there any way I could have an active bacterial infection that is not showing up on standard testing? And how does that get resolved? I feel like my experience of developing the symptoms after intercourse differs from others in this thread. And the fact that antibiotics largely bring down the severity of my symptoms? I am currently testing the “IC diet” but so far it has not been effective. Any input would be so appreciated, this has been such a struggle for me!!

What my bladder looks like. Needless to say it hurts! Went to the hospital for months due to blood in my urine and they kept telling me I was on my period :-)

Hello! Didnt find the post like this so will make it myself! Does anyone else experience flare ups after going to pee when you dont need to? I felt perfectly fine whole day and went to toilet as a habit before sleep and got terrible pain and urgency

any ideas why would that happen? how it works? what is happening in the bladder?

hi, here’s a TL;DR:

i’ve considered myself to be in remission from IC for the last seven years. over the last week, seemingly out of nowhere, i’ve had some symptoms return, specifically urethral pain and pressure. it is near constant. i got a urinalysis and it was negative. i was hoping this was just a UTI, but it doesn’t appear to be. i am feeling really scared. my quality of life when i was in a year-long flare back then was next to nothing. i could barely hold a job. i was extremely depressed and in so much pain every day. i don’t want to return to that.

i have health insurance now. since my urinalysis came back negative and i’m still in pain, what do you think my next step should be? make an appointment with my PCP? ask for a referral to a pelvic floor PT or a urologist? thank you for the support and advice

background:

i suffered from moderate to severe IC symptoms every day for about a year around 2018-2019. my symptoms included bladder pain and pressure, urethral pain and pressure, urgency, frequency, burning during and after peeing, and pain during and after sex. it was debilitating.

i didn’t have health insurance at the time and was really broke with no financial support, so i was not being seen by a PCP or a urologist. over the course of that year, i got several negative UTI tests from walk-in clinics and a course or two of antibiotics that didn’t do anything. one night i woke up in such severe pain that i went to the emergency room thinking i may have appendicitis—i was doubled over and couldn’t walk. they performed a vaginal ultrasound, CT scan, blood and urine tests, cancer screenings, and some other things i now forget, and they found nothing. the ER doctor told me he strongly suspected interstitial cystisis since basically everything else that matched my symptoms was excluded. he gave me an info sheet on it and recommended i see a urologist for a formal diagnosis and care plan.

at the time of this ER visit, i’d already been treating myself for IC with D-mannose, aloe vera, prelief, marshmallow root tea, azo, and a months-long strict IC diet. i was never formally diagnosed by a urologist since i didn’t have insurance and couldn’t afford to see one, but because so many other things were ruled out and my symptoms lasted so long and were so severe, i considered myself to have IC. slowly, it got better until finally i was symptom-free, and i have considered myself to be in remission since 2019.

I haven't been officially diagnosed yet but am sure my recurrent bladder issues are cystitis rather than UTIs.

Current flare started 5 days ago, a day after having spicy food. Been controlling symptoms with AZO, drinking lots of water, plus occasional Tylenol. Even took cephalexin for 3 days because I had them in hand.
AZO is only supposed to be used for two days though.

Trying to figure out what to do if by Monday I am still bad. I am with Kaiser Permanente and if I call their advice line they will only send me for urinalysis then have a Dr prescribe antibiotics if positive for bacteria. The typical UTI approach.

They squeezed me in for a phone appt with urologist but that's 9 days from now. Tried months ago to get referral to urogyn (for bladder retention mainly) but was refused. Gynecologists are useless with this. Even if I went to ER they'd do nothing.

Just don't know what to do come Monday -- what should I be expecting from Kaiser?

I’m probably not new to having IC but I’m new to knowing I have IC. It was diagnosed during my hysterectomy by an endo specialist who also checked out my bladder while she was in there. It was very inflamed and she suspected my ongoing back pain was tied to it. I’m 4 weeks post-op and trying to figure this thing out now. My back pain hasn’t gone away but I have two types of pain. One feels more mechanical, like it’s in the bones of my spine. I’m wondering if it might be helped by a pelvic floor therapist.

The other pain, though, is in my right flank, like above the bones of my pelvis and to the right of my spine. It does seem to wax and wane depending on what I eat and drink. I’ve cut out alcohol and cut down citrus and that seems to help.

I’m curious if anyone else recognizes pain in that area as being tied to their IC?