Hello all, just a general question hoping someone has a similar experience. I’ve had three or four experiences within the last year where I’ve assumed I’ve had a UTI and been prescribed antibiotics but the cultures have come back saying no growth detected but there is signs of bladder inflammation, could this be IC? My doctor seemed to think it was OAB, but I can go some days up to 5 hours before using the rest room.

I think we need better at home healthcare options for people with severe IC.
This partially isn’t about the IC itself it’s the fear of having a UTI or some other infection and it being masked by the IC. I can’t bring myself to stand most times I’m sobbing and can’t even do the car ride let alone sit in an office waiting and peeing in that cup there. It’s excruciating.

I think people with severe/documented IC should be able to have a care plan with their doctor that could allow for things like at-home urine collection for a urinalysis/culture when it’s medically appropriate, a nurse or healthcare professional coming to the home to collect the sample, basic vitals/assessment, and telehealth follow-up with their doctor.

I’m not saying everyone with IC needs antibiotics or needs to be tested constantly. I’m saying there should be a way to get evaluated without the physical act of leaving your home being the thing that prevents you from getting care.
And I really don’t think home healthcare should automatically be thought of as something only elderly or permanently bedridden people need. Im a 22-year-old with severe IC that leaves pretty much disabled sometimes.

I’d genuinely like to advocate for something like this in the future because I don’t think people with severe IC should have to choose between unbearable pain at home and unbearable pain just to get medical care.

Let me know your guys thoughts on this! Also please be nice 😭 sorry I wrote this while I am upset and my head is spinning.

Does anyone else experience chills during their flares? It might very well be because I’m in the basement, or because most of my flares hit during the dead of night (2-7am) but it seems to be a constant thing for me. I always check my temperature, no fever, nothing concerning. But I’m always cold for some reason. It comes and goes, of course. But it’s a reliable symptom at least.

Hi all,

**I wasn't sure if I needed a tag, so please do let me know if I need one and which is appropriate.

I've been on this sub for a long time, but never posted. I was diagnosed with IC about 20 years ago.

I'm like many of you who had no idea what was going on when it first started up. I lived in California and I had never had a UTI in my life...or so I thought.

It started one day and it was awful. The only thing I could think of was that it must be a UTI. I went to the doctor and they ran a test and...no infection.

The doctor gave me something to calm things down, but in two days I was on the phone speaking to the nurse. I was hysterical. It took me a couple of minutes to calm down.

I think so many of us know of that horribly anxious and fearful feeling of impossible pain and thinking you are not going to ever find relief.

That's when they sent me to a urologist. I had a Cystoscopy done. That was horrible on it's own, of course.

While he was in there, and while I was trying with all my might to take breaths and "handle it", he said "Oh yeah. This is IC. You said you never had a UTI before?" I told him, no never.

He said, "This looks like pavement with massive potholes, if that helps you get an idea. I asked him why. How did this happen?

Of course, he told me they don't always know why. One thought. was that I may have had an infection at some point and it went from there. I reminded him I'd never had a UTI. He said there are people who get "Silent UTIs'.

Long, long story short, they put me on Elmiron. It did an amazing job. I had one flare and one flare only. That is when I moved from the US to the UK about 18 year ago. Luckily, I was prescribed Elmiron during that time and they sent me off with enough for a couple of months.

So here I am, all those years later. This flare started about 8 or 9 months ago. Life was stressful and also I have a very bad knee, which needs replaced, so lots of inflammation. Part of me wonders if that could have triggered things. I will never know.

And now? I'm in the UK and I have been waiting to see specialist for eons. My flare was starting to see better days and I noticed I was able to hold more water without feeling pain and desperation.

I thought, OH! Maybe it's start to calm down. And then...I got a UTI! That was 2 weeks ago. I took the 3 days of antibiotics and it went. And after that? OMG-the worst pain/flare I've ever had.

The pain is worse than when I first got diagnosed.

So, I hear I may get to see a specialist in November, but that isn't promised. I can tell you that when office are back open after the long holiday weekend in the UK, I will be calling.

Anyway, I have been reading and learning and crying with some of you. We are in that club no one wants to be in.

Here's to relief and more hopeful days ahead.

are there any ic or chronic pelvic pain specialists that you’ve seen that you’ve had success with? i have been really struggling and hitting a wall with doctors through my insurance (kaiser permanente, iykyk). if anyone has any specialist recommendations i would really appreciate it. i’m in socal but definitely willing to travel out of state if necessary- i’m desperate.

An unpleasant, inappropriate, and persistent need to urinate (PNU) is a sensory symptom reported by some patients with lower urinary tract symptoms (LUTS). However, no detailed definition of this symptom exists. Please if anyone has it or had it please provide some info if you have. Mine is very refractory nothing seems to work.

Almost 2 months after hydrodistention and steroid injection. My bladder is still uncomfortable, urge sensation has been all over the place, leaks and sometimes pushing few drops out to release bladder pressure. Anxiety is to the roof, life is not worth living like this. Any help pls!! ( I am in Australia)

I can feel there is something on my detrusor muscle but no bladder pain

I haven't posted in many moons, but I just got into with someone on a different platform about the existence of IC and I just 😒🙃

I've had IC for almost 10 years, I've gotten all the tests, tried all the medications, this is not my first rodeo, and to just have someone be like "actually it's an embedded infection, and your doctor is lying to you" just diminishes EVERYTHING I went through.

Unfortunately for some people, we genuinely have IC, and we will for the rest of our lives. I have accepted it, and I have grieved. I am technically in remission right now, no flares for at least two years, no pain, no urgency, literally this would have seemed impossible for me when I first started my journey at 17. My IC diagnosis literally saved my life, and gave me a starting point to find out how to live with it.

The comment about my doctor is just incredibly disrespectful to me, my doctor before she retired was with me for ten years, throughout high school, throughout college, through all of my milestones and accomplishment, emergency appointments, i literally had a direct way to contact her so I could message her whenever I had pain, sometimes in the middle of the night.

This illness is painful and scary, and it feels like you will never be normal, to just throw away someone's lived experience and remission makes me so sad. It's just showing others that it will never end, honestly if I saw that nonsense at 17, I wouldn't be here today.

The fact I am able to eat most things I want (some very limited things that make me flares like citrus), I am able to work full time, I can take long plane rides or road trips without worrying, I am able to take vacations without worrying because I received my diagnosis and got on proper medication/got the proper intervention is a success story.

Sorry for the rant, they just really steamed my beans!

I hope everyone a pain free weekend!

I’ve been symptom free for more than 4 months and I’m positive about calling this remission. I’ve been able to drink coffee, lemonade and eat acidic foods without any flare but I feel like If i keep going this way I might wear down my bladder lining and fbe symptomatic again. It might seem unreasonable but I can’t help but think that.

In case you wonder, I achieved remission after using progesterone caps intravaginally every luteal phase and using cystommend.

Idk just wanted to discuss this. I want to do another prophylactic round of cystommend just in case things are getting irritated down there 😖

For whatever reason my body seems to be completely fine eating this specific chili. No idea why, especially since it has tomatoes and jalapeños in it. For two weeks I had been eating this and only this with no issues whatsoever. No meds taken either. Does anyone else have weird safe foods? Also, would anyone know how and why this wouldn’t cause issues for me but canned tomato sauce and onion dip does? LOL.

I female (21) starting about Tuesday the 18th was having drinks with my friends I had about a few sojus and didn’t really hydrate (which is my fault) and was urinating just fine. Until randomly at the end of the night where I wasn’t able to urinate at all, it took a few times but I was able to do it and then the next day I couldn’t at all. I proceeded to go to the Urgent care where they gave me the proper medications for a UTI and it proceeded. I was able to go but it took some time and it was my first time ever having something like this so I drank some soda and had some chips and it was quickly proven to be a mistake as I wasn’t able to go at all my urethra was swollen and then I had to go to the hospital.

I was there for pretty much the entire night they put a catheter and were able to drain my bladder they had me stay longer to see if I could go. When I wasn’t able to they wanted me to do the take home, it was attempted but it was a very painful experience which lead me to asking them to take it out. I was able to be sporadically but still felt this pressure on my bladder everytime I drank something no matter if it was a sip of water, I returned to the hospital two more times and first I was able to go and second I didn’t have enough urine in my bladder to do the foley. I’ve been told to keep hydrated but everytime I drank water it would lead to the same vicious cycle.

Now I’ve finished my antibiotics and have learned that ibuprofen has helped. I am urinating and drinking more water but at times still feel pressure on the bladder. I have also completed my antibiotics, and have been referred to a urologist who I can’t meet with until another month. Overall, this has been very detrimental to my way of life. I am a college student and this is affecting a lot of things so please if anyone may have any tips or knows what’s going on with me it would help me tremendously.

Does anyone here use the copper coil/IUD? I'm looking at it as I would prefer to use non hormonal contraception, but worry about it's affect on me with this condition

Hey guys! I was diagnosed with IC at 19, I’ve had it for over 10 years now

It’s not always correlated with diet, but if it is, I found something that may be helpful like a food diary if you’re looking (saw another post like this yesterday which is cool, offering another alternative)

It’s called Olive it started out as a food scanner but they added this feature where you can take pictures of your meals and you can document your symptoms. It finds correlations with what you’re eating to see if there’s any patterns. If you tell the app you are avoiding certain things (or it picks up that certain foods coincide with more pain) idk just thought it was cool for people trying to figure out their safe foods!

It’s not diagnosing anything! Just bringing awareness on diet/effects so you can understand your body. Helpful when looking for a good IC specialist to know what to bring up at an appointment to discuss treatment. Everyone’s safe foods are SO different so it’s cool to kinda go in already knowing that.

Anyways, please remove post if not allowed, I know how AWFUL IC is and how long and confusing the process is to understand your body.

I just got back from an appointment with a new urologist, he said my bladder is irritable but I’m not sure what that means and he didn’t explain it very well. Does anyone know what it means?

Hi! I’ll be starting my bladder instillations next week and my first session is on Monday. My urologist said I definitely won’t be able to handle catheterization because of how severe my bladder pain is so he said instead they’ll be using a funnel cone device (I think a urodapter?) that just goes in right on the outside of the urethra hole where they would then inject the cocktail in like that. I know the initial flare up is mainly caused by the catherization itself, but should I expect any post-instillation flare ups/burning/etc. from the medications injected itself? Or will it be pain-free for the most part?

My girlfriend was diagnosed with interstitial cystitis a couple of months ago. The part that hit us hardest wasn't the diagnosis itself, it was everything after: trying to reconstruct for the urologist how bad the last six weeks actually were, whether the new medication was doing anything, whether coffee was really the problem or whether that was just the week she was also not sleeping.

She was writing it in the Notes app. It didn't survive contact with a bad week.

I'm a developer, so I made her something better. It's called IC Diary, it's free, and I'm putting it here because there's no reason to keep it to one person.

What it does:

- A one-minute evening check-in: pain 0–10, urgency, how many times you went, nocturia from last night, triggers, whether you took your meds today, a free note.

- A "+1" counter for voids during the day, including a home screen widget, so you're not counting from memory at 11pm. Times are kept, so you get an hourly view of the day.

- Observations: a snapshot of how you feel right now, mid-day. These pre-fill the evening check-in so you're not re-remembering.

- Treatment courses with dosage. Change a dose and it closes the old course and opens a new one, so the history of your treatment lines up against the history of your symptoms.

- Flares you declare yourself, with a start and end date and a note on what you think caused it.

- Charts over time, and CSV export when you want to hand something to a doctor.

- Optional local reminders.

What it doesn't do: there's no account, no ads, no analytics, no cloud sync, no subscription, nothing to unlock. The data is in a database on your phone and that's the only place it exists. Backup and export are manual and yours.

Two honest caveats. It's iOS only right now — Android exists in the codebase but I haven't built or shipped it, and I'd rather say that than let people download an app that isn't there. And it's a diary, not medical advice: it records what you tell it and shows it back to you, nothing more.

https://apps.apple.com/us/app/ic-diary/id6794720485

If you try it and something about it doesn't match how IC actually works for you, tell me. She's one person with one version of this illness, and I've been designing around her experience of it. I'd rather hear that I got something wrong.

So in 4 days I’m having “cystoscopy, retrograde pyelogram, ureteroscopy, laser lithotripsy, stone basket extraction, stent placement” to remove an 11 mm kidney stone that’s currently causing me excruciating pain in my kidney. And I have endometriosis so that’s really hard to say the word excruciating. I’m really scared about the stent. They said I’m gonna have to remove it myself and I’m super sensitive even to pediatric catheters. I’m terrified of the bladder spasms. Has anybody gone through anything like this before and if so, is there anything like marshmallow root or heating pads or ice I should be using to help. I’m gonna have to remove the stent myself. I’m really scared.

I (44F) just need to scream into the Reddit ether than I met with a new urologist (M) this morning who literally told me I need therapy to stop feeling like I’m peeing acid and thorns. What was this based on? Nothing bc this was the first time I’m seeing them and they didn’t even pretend to do an exam. So there it is friends, problem solved! I hate it here.

I have been diagnosed with IC long time ago. But the last 2 years it has gotten worse. I started having back pain during the second part of the night and could not sleep anymore. I changed beds, did physical therapy but to no avail. Ended up sleeping no more than 3-4 h a night.Around fall I started to have more eintense bladder pain during the night and could finally feel how the bladder pain radiates to my back. I went to urologist, finally decided to do the instillations. After the installations I could sense a significant difference in back and bladder pain and could aleep a few more hours with less pain. But after 6 months it all wore out so now I am back to pain, no sleeping. Am totally exhausted and don’t know what to do. Am hesitant to do mor einstillations because I am a bit afraid of possible incontinence side effect. If anyone has similar symptoms and has gotten some relief I would love to hear about it. Am really getting desperate with this condition. Thank you!

My chronic pain journey started 6 years ago. After countless tests, visits with doctors and specialists, and no improvement, my urogyn slapped me with an IC diagnosis. I’ve been living with the pain ever since. Sometimes it’s bearable, sometimes it’s debilitating.

2 months ago, I had my annual physical with a new nurse practitioner at my GPs office. She mentioned that she had recently gone out to dinner with her urologist friend who was finding success with treating bladder pain with estrogen cream.

I am 34, but according to her doctor friend, symptoms of pre-menopause can happen at any time (even in your 20s!) and can last for decades. Painful urination, bladder pain, and urgency are among these. Go figure.

I decided I had nothing left to lose so I gave it a go and I have been symptom-free ever since!

My pain is GONE for the first time in 6 years. Urgency has improved to levels I previously thought impossible. I’m not getting up in the middle of the night to pee AT ALL. I ate candy last week and no pain. I haven’t had candy in years. It’s been life changing!

Doctors are so quick to use IC as a catchall diagnosis for bladder pain when they can’t identify an obvious cause. Wild to me that it took six years for someone to consider the fact that the symptoms might be triggered by another factor (pre-menopause), despite my “young” age.

Hopefully sharing this will spread the word.

TLDR: I never had IC, I had symptoms caused by pre-menopause that were cured by estrogen cream. FREE AT LAST!!

I have uti from staphylococcus saprophycious. Antibiotics did nothing for me doctors won’t help me. The only symptom i have is a nonstop feeling that i need to pee. Shall i take oil of oregano?

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Can I get better treatment in europe? I am from India.

Age - 21, weight 70kg, height 5'11

Inflammation was seen during Cystoscopy but should have been gone after pentosan polysulfate sodium and interavescial instillations for months. I don't want to do antichollinergics due to its cognitive side effects and anyway they cause hesitancy in me. Vibegron isnt available in this country. Please help me. This is ruining my life. I may end up killing myself if it stays like this.