Please send me good vibes. My husband and I work seasonally and twice a year we make a 14 hour drive to relocate. I woke up this morning with a flare up and we're driving 10 hours today. It's pretty remote and not many bathroom breaks. Hope I make it 😭

Hello! I love working out and did intense club sports in college, and before a severe bladder infection in Dec 2023, I had literally no issues with any sort of workout so long as I wasn’t already in pain from my period. Since then, I have had pain after even 15 minutes on an elliptical with no resistance. Needless to say, this has been horrible for my mental health and also I just don’t feel as good when I’m not active. Any suggestions for exercises that don’t cause you pain?

Some background: I have endometriosis (excision removed by an expert) and IC (diagnosed by UroGyno based on symptoms and cystoscopy/hydrodistension) and have had pelvic pain for 15+ years, the bladder infection just made everything worse and hasn’t improved since then.

Hi!! i’ve had IC diagnosis for a little under a year, and i’ve found that not a lot helps with my flares (26yo F)

my dr has done a hydro distention procedure and prescribed Hyoscyamine and Gemtasa (haven’t tried)

the baking soda rescue is gross, and i will throw it up everytime. i found baking soda capsules on amazon and im hoping someone has tried this before i make the purchase.

Anyone here have one? Do u still get the feeling/urge to urinate or does the urine go straight in the bag with no feeling to pee? My urologist wants to try the supapubic catheter because im peeing every 15min i get the urge to pee every 15min with verry little urine in my bladder

So this is the first time I’ve had a real flare up and it lasted 4 days. By the end of today I started to feel better, so much so that I dared to take my dog for a 1/4 of a mile slow walk. Within an hour my abdomen (suprapubic region up to my rib cage) had (not quite) a burning sensation. Almost more like an electric feel similar to how you get in your legs when you walk too far/too long then stop. Is this common with IC? Once I had the abdominal pain again I felt the frequency feeling return. But it seems that as long as my abdomen isn’t hurting, I’m not constantly running to the toilet. I have seen others post about pelvic congestion syndrome behaving similarly.

So I was just diagnosed with ic a week ago. I consider myself lucky after reading so many other posts where people took years for diagnoses, I was diagnosed a month after my symptoms started, but now I’m just not sure what comes next. My urologist has started me on 25 mg of Hydroxyzine, we figured that was the least invasive option for me since my symptoms are mild most of the time. So I’ve just started that last week but I have been in a constant flare this whole time and can’t even begin to test what foods I can or cannot eat. I’ve been taking Azo to help with the pain but I’m not sure where to go from here. Any medication /treatment recommendations or ways to test what foods cause flares would be greatly appreciated!

If I don’t feel any fluctuation in my symptoms based on food, should I still try the diet?

I don’t feel any difference in how I feel based on what I eat. I don’t have alcohol or coffee or carbonated drinks in general. But citrus and spice don’t seems to make me feel bad at all. Any advice? Does it take longer to feel effects or something? ❤️

Curious what everyone’s experience has been. If you eat a trigger food or drink, how soon do you flare?

Hi there, I’m curious if anyone IS still able to work out without triggering frequency issues in regard to yoga, jogging, and weight lifting when they’re not in a flare up? If so, what is your treatment regimen? I understand it will be different for everyone.

HELP PLEASE 🙏

Hi all! I have dual endo/IC. My bladder symptoms actually led to my endo diagnosis but there was no actual endo in my bladder. Surgery didn’t help my bladder.

I did PT for nearly 6 months with little improvement. My PT begged me to do instillations but for various reasons—esp medical trauma around obgyn procedures—I just can’t do it. I’ve completely modified my diet and ONLY drink still unflavored water and light colored tea. Has barely done anything. Besides daily Azo, the only pharmaceuticals that touch it are high dose gabapentin and muscle relaxers but I can’t do that consistently.

Went back to pelvic pain doc and she suggested a 6 week course of nerve block injections. The shots are only a pinch and barely hurt! You are out of the office in 10 minutes.

I am on week 6 and this is the best I’ve felt since this all began over 2 years ago. The frequency is gone, the pain is 95% gone, and no bladder spasms. I don’t remember the last time I needed Azo. I’m not planning on going back to my old diet any time soon, but I feel so much relief. I hope that folks can keep this open as an option—it may really help for you.

O.k has anyone ever had Miralax give them a flare?I'm finding out new and strange stuff that flares me. The adventure never ends...

I’ve had IC for 6+ years and about 7 months ago it got significantly worse than it ever was after around 3 years of semi-remission. My absolute worst symptom is clitoral (and urethral) pain that’s constant and hurts even without pressure or an external trigger. I’ve been in nonstop pain for months and I still don’t have answers (I’ve seen a urologist). Does anyone else have constant clitoral pain and hypersensitivity as a symptom? Has anything worked to lessen it? My quality of life has gone down significantly. I’m on amitriptyline and hydroxyzine and recently started LDN for the pain but nothing helps, not even topical lidocaine gel.

So I wanted to talk about bladder instillations. First about me. I have this condition for almost 5 years and didnt seek help until last year when it got so much worse. I would say it happened in one day. i Just woke up in a forever flare. Until that it was manageable, but still bad. So if you have ic symptoms, get help as fast as you can.

By the time i found a good doctor, I was in pain/discomfort 24/7. I thought everything flared me.

I had cystoscopy which showed i have bladder wall damage. So i needed to start doing instillations to repair that damaged bladder wall.

I was prescribed to do 6 bladder instillations once a week.

I've read so much posts here and on the internet. Many sources say that if you dont feel better after 6th instillation then it is pointless to do them. Don't 100% believe anything you read. It effed up my life so many times already. Seek medical advice first.

I was very sad when i didnt feel better after 6th. I felt hopeless.

I have really good doctor and nurse.

And then it was time for the next doctors appointment. I have been told that if the case in not mild, like mine, then it might take up to 2 years to feel good again. 6 weekly instillations and then once a month. (Maybe forever ? cause its not curable and bladder wont be as it used to be)

A nurse also told me stories that patients like me feel better in 1,5 years. Feel great or like almost healed.

And here am I 7 months in. Didnt feel any changes at all until 2 months ago. I guess it just started to kick in. Im not healed, but its not nearly as bad as it is used to be.

I eat pretty much everything, expect i would not even dare to try citrus or pineapples or tomatoes, alcohol and other acidic stuff. It probably equals to self harm. Cause you know it will hurt you bad.Smoking also affects bladder. Smoking alone can cause IC.

Some foods definately flare me, but not as much. I just dont eat food that makes me flare a lot.

Its very odd, but for example cucumbers flare me. I tried to eat them so many times. And avocados are my trigger.

So what i wanted to tell in this post is that if you're willing to try bladder instillations, dont lose hope. It takes time to heal. It wont be fast. For some it might. Consider yourself very lucky then :)

I just felt hopeless that 6 instillations didnt help me back then. it would be a miracle though to cure it in 6 weeks. So all of us suffering here have to stay strong, seek medical help and hope for the best.

Hey community, new here. I just got a Hydrodistention and bladder instillations procedure because my doctor wanted to see if I have IC. I’ve been suffering from lack of sleep for the last 3 years, waking up with urgency. It turns out, I have it. It’s bittersweet to have been diagnosed with a mild to moderate case of IC. I can now start my healing journey. It’s so sad there is not a cure but I’m hoping to be able to manage symptoms. If anyone can share what has helped them manage the pain, it would be appreciated. Love to all my community diagnosed with IC. I’m here for you.

Has anyone recovered enough to be able to come off of all of their medications?

Still at that point of suspected IC while waiting and eternity for an urology appointment 🙄 this comes a long time after endometriosis was also a suspect. But the more I read, the more I consider - could it be bladder endometriosis? This has never even been discussed or brought up by either the gynaecologist or my GP - I feel like the NHS don’t even consider things that are more rare. May be why I got told I had costochondritis that turned out to be a primary spontaneous pneumothorax. I love our NHS in the UK we’re lucky to have them but also know from my own and other peoples experiences they frequently get things wrong or miss things all together. Just wondered if anyone else has considered this or even have it alongside IC? Sorry I didn’t mean to write an essay 😂 Hope everyone’s having a decent day and managing their pain ok today! Oh, and if anyone knows anything besides prelief that works to help pain I’d be greatful! Just picked up aloe Vera and omaperazole (sorry probably spelled that wrong!) gonna see how they do 😊

I am moving from Wyoming in a few months. I have a urologist I see here who performs my cystoscopies with IV sedation (propofol) and is very good.

Bu I'm moving in a few months and will be spending a portion of the year in Washington state and another portion in Colorado.

I get cystoscopies for monitoring due to family history of bladder cancer and my own health history. Cystoscopy with sedation is the only way I can do it.

Any recommendations for a great IC urologist who does cystoscopies under sedation in either Washington or Colorado? (Any area)

It might be a coincidence but I had the start of a horrible flair yesterday. My order of Marshmallow root capsules arrived which I’ve never taken before. I took one yesterday. The instructions say two twice a day but I’m starting out slow to make sure I tolerate it okay. I woke up this morning with no pain. Took another capsule late morning and another late afternoon. Still no pain. If this is my missing link all this time I’ll be so happy. But not getting my hopes up just yet.

Hi! I am 28 yo male. I have been suffering from sensitive meatus for 6mo. 9 months ago i started using penis extender. No problems with that at all. Then i started having premature ejaculation problem after i had used the device without any problems for 2 mo. It gradually got worse until i got minor injury to glans. Small blister which healed in 2 weeks. Stopped using the extender. Gained 2cm length. I have no other symptoms, only intermittent pme, slight redness and sensitivity of meatus. Erections are better than before extending. All std and bacterial tests are normal. If i had no pme then this would not even be problem. Is this nerve damage due to extender usage, infection or psycholpgical? I dont understamd why symptoms are intermittent? Has anyone experienced anything similar? Sympoms seem to get worse when ejaculating more frequently.

I don’t have insurance. Any supplements or natural ways to heal a damaged bladder lining?

I had a polypectomy and D&C yesterday. I have interstitial cystitis, so I'm very careful when it comes to soaps. I use a baby wash on my vagina to avoid burning and problems.

Since surgery yesterday, I've had horrible burning pee and vaginal pain. It's not getting better, and I'm drinking water. Tylenol and Motrin aren't helping much at all. The dr told me she washed my vagina with a heavy duty soap for a minute. That definitely didn't help me.

At this point I'm almost thinking I have an infection. Called the obgyn and she ordered some, just in case. I think the catheter also did me in. My husband is a retired emt and said during surgery they usually just shove it in, which has probably exacerbated my pain.

Has anyone else had burning pee after these procedures, and if so, how long did it last? If it is an infection, hopefully the meds will kick in soon. I just started it today. Thanks!

To those with primarily frequency issues; what has helped the most? My hypothesis is that my issue started due to a severe IBS flare up. Can anyone else relate? Also, those with frequency primarily—does it ever go into remission or do you just feel like you have to pee constantly every day for the rest of your life?

So I woke up with a terrible migraine this morning as sometimes happens to me, took all my meds as usual, but on my drive to work started feeling super nauseous and pulled over bc I had to get sick. it was ORANGE. I thought it was blood for a split second before I put two and two together. anyways I probably permanently stained the parking lot- I hope they don’t get me for vandalism (jk, but sigh). my mouth is super stained looked like I just gave big bird a BJ. two layers of two types of lip stains is not getting rid of the jaundiced aura my lips now exude. FML!!! has this happened to anyone else? any ideas on how to get rid of the staining? obviously it’s f-ing azo so i’m assuming i’ll be stuck like this for a day or so but I’m willing to try anything 😭

i’ve been to the bathroom multiple times already and our office is small so it’s so obvious. my urethra and bladder are just throbbing and burning so bad i feel so out of it. already took azo but im a little constipated and that usually is what causes a flare for me 🥲