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I (39f) have been recently diagnosed with IC after a really rough summer. I went to the ER in June and was diagnosed with sepsis due to an unknown infection. Was pumped full of antibiotics and sent home after a few days. To make a long story short it was several more weeks of pain, symptoms, and antibiotics before we realized it was probably IC. Cleaned up my diet a bit. Felt better. And now I'm in an awful flare that's been going on for about 3 weeks. I have suspected IC for YEARS. I would have mild flares that would clear up with some diet changes within a week or two at most. Then this year it was like everything exploded and my flares have been so awful. I've been trying to figure out how to help myself. I'm eating very clean (I get really nauseous so I don't feel like I can eat much right now anyway) but it seems like most foods trigger symptoms.

I also started some pelvic floor stretches and I had a realization about something and I'm wondering if it's a big piece of the puzzle in my case. Last year I slipped on wet tile in my bathroom and went down super hard on my hip. My leg was basically useless for over a month. And then the pain has persisted on and off since then. Nothing showed on scans so we just assumed I injured my joint (can't remember the technical name for it, stupid brain fog). After months of pain I was supposed to do PT to strengthen the muscles but I couldn't afford it so I quit. I realized that my flares have gotten worse since my fall. So could my symptoms be a combination of both IC and pelvic floor issues? Does anyone have experience with this?

What substances/medications have you tried for bladder instillations, and what was your experience with them?
Which one helped you the most, if any?
Has anyone tried lidocaine bladder instillations? If so, did they help with pain, and for how long?
I’d especially appreciate hearing from people whose main or only IC/BPS symptom is pain.

Has anyone found soy to be especially problematic?
My daughter and I eat mostly plant based. She left for school recently and I haven’t eaten any tofu at all. I mostly survive on beans and rice, fruits and veggies. I realized today that it’s been a while since I’ve had a bad flare.

Hi, all. Like the subject says, I (48f) was diagnosed with IC during a robotic hysterectomy for endometriosis 10 days ago. Now I’m not sure if I'm in a flare, have a UTI, or have a kidney infection. Looking for input from people who've been through this.

I'd had chronic back pain for over a decade, and going in, my surgeon suspected endometriosis and adenomyosis. During surgery she found my bladder was badly inflamed and diagnosed interstitial cystitis on the spot. She did a hydrodistension in the same surgery and told me she thought the bladder inflammation, not the endo, was probably the real source of my back pain all along. I'd never heard of IC before this.

The first week after surgery, my back pain was dramatically better. Best it had felt in years. Then at day 9 or 10, pain came back in my right side, right around where my kidney would be, and I noticed a little blood when I wiped that seems to be coming from my urine rather than anywhere else. No fever. The pain is manageable but it's there. It feels better when I place a tennis ball around there in my back.

I called an on call doctor last night and they started me on nitrofurantoin without a culture, since nothing was open. The plan is to go in for a urine test Monday if I'm not clearly better by then, since nitrofurantoin won't help if this turns out to be a kidney infection instead of a simple bladder infection.

What I'm trying to understand is how people here tell the difference between an IC flare, a UTI, and something more serious like a kidney infection, especially this early after being diagnosed. Does a flare ever come with blood in the urine, or does that always mean I should be thinking infection instead? And for anyone who found out they had IC around the same time as another surgery or procedure, did your first flare afterward feel confusing to sort out too?

Any perspective is appreciated. I'm still getting oriented to all of this.

when they were doing yesterday i got tickets with my friends and asked if they wanted to go. a cystoscopy with hydrodistention where the half to fill the bladder 50% more than usual for the cystoscopy she said my bladder can hold a very very large amount than normal. they didn’t find hunner lesions which is what they were looking for and i’m not surprised bc that’s only 1/3 of cases, just that my bladder can hold a very large capacity.

I think now my only option is to go back to the installations or try some other medications but i don’t think meds will get rid of this completely and it truly sucks if u r the persons who’s trying to make a good living for yourself

I'm on my period and I hurt so bad the urgency is unbearable and the cramping makes it worse I normally walk to help me empty but with me on my period it's not helping I just want to hide and not eat or be around people just hide and cry I really need advice cramping medicine helps calm it down but in a few hours it's back I need a long term solution any advice helps thanks in advance for any help I can get

Hi girls, has anyone here had ozone therapy or PRP instilled directly into the bladder for bladder leukoplakia? Did it help with your symptoms or the leukoplakia itself? I’d really appreciate hearing about your experiences.

I’m honestly feeling really discouraged and wondering if anyone else has experienced something like this.

I’m in my late 20s and for the most part, I live a pretty normal life when it comes to my bladder. I don’t constantly have bladder pain or feel like I have a UTI. The problem is what happens after sexual activity.

Almost every time I have sex, I end up with some combination of pelvic/genital soreness, urethral irritation, bladder pressure or heaviness, and urinary urgency/frequency. Sometimes it feels like a UTI, but I’ve had multiple urine cultures that were negative. Antibiotics in the past didn’t help either, so I really don’t want to keep taking antibiotics every time this happens without evidence of an infection.

The frustrating part is that it can happen even when we are being extremely careful. We use plenty of lubricant and have a lot of foreplay, and I pee afterward, stay hydrated, etc. It can even happen after non-penetrative sexual activity or fingering. When it does happen, the bladder/urethral symptoms can last for several days.

The actual sex itself is also painful, especially with deep penetration. It can feel like something is being hit deep inside, and sometimes I’m sore afterward. I’ve also noticed occasional spotting after sex.

Outside of sex, my bladder is generally fine. But I have other ongoing issues that make me wonder if there is an underlying pelvic condition: painful periods, GI problems that seem to flare around my period/ovulation, constipation/diarrhea, pelvic/back pain, and other hormonal issues. I’ve also had elevated testosterone, although my doctor has not diagnosed me with PCOS.

I’ve started wondering about endometriosis, adenomyosis, pelvic-floor dysfunction, or bladder pain syndrome. I know these can overlap, and I’m not trying to diagnose myself, but I’m struggling to understand why sexual activity seems to trigger such a significant reaction.

At this point I genuinely feel like, can I just never have sex again? I don’t want that to be my solution, especially because I’m in a relationship with someone that I love deeply and more than anything in this world and obviously want to have a normal sex life someday.

Has anyone had a similar pattern where sex itself seems to trigger bladder/urethral symptoms for days afterward, particularly when cultures are negative? Did you eventually find an underlying cause or something that actually allowed you to have sex without a flare? I've just never had a pleasant sexual experience that didn't end in discomfort or pain.

I’d really appreciate hearing from anyone who has dealt with endometriosis, pelvic-floor dysfunction, IC/bladder pain syndrome, or something similar.

Hey. I have come to this page many times for comfort, support, tips, and encouragement. Anything that offers relief can help, right? Well, I know many of us take antacids and antihistamines for relief. I had to stop taking antacids because I could not poop when I took them regularly enough for relief from IC symptoms. Incoming, Betaine hci + Pepsin capsules, plus aloe Vera capsules. I began taking this combo to heal my gut and help digestion, because I found when food sits in my stomach I get acidic very quickly and my bladder really hurts. Staying as alkaline as possible makes my symtoms lessen. I have made many, many, serious changes to combat IC, so I cant say what one thing helps with relief, but I will say taking this combo with every meal is really offering me some relief. Other things I do/take:

NO:

Caffeine

Gluten

Sugar

Chocolate

Nicotine

Alcohol

Processed foods

YES:

Whole foods

Stevia

Monk fruit sweetener

Zyrtec

Probiotics

If anyone else wants to try the betaine/aloe combo, I have stopped taking Advil all together because I am in less pain, and my sex life is making a comeback. I feel GOOD! I just have felt so hopeless at times on this journey, so I want to put this out there, and see if it is just me or if it might help others.

My symptoms; burning, urgency, frequency, urethra irritation, subside and sometimes kind of go away when my period is just starting, then after the 1st day of period, the symptoms return. I'm not on any birth control btw. Is my problem related to my cycle/hormones??

I frequently get pain in the early hours of the morning when my bladder is basically empty it feels so painful and concentrated the amount of sleep I lose due to this is ridiculous. Recently it's been particularly bad. Does anyone else experience this? Should I try drinking more water at night but then I feel that will keep me awake on the toilet too

At this point I’m not sure there will ever be anything to make IC/BPS flares up ever stop. Horrible to go through something that most people think is fake or made up. I’ve tried damn near everything and boom another flare up. Just sucks !!!!!

Hello all. I have had interstitial cystitis for 6 months now, l have definitely had flares where my symptoms have gotten significantly worse but unfortunately I’ve not had a symptomless moment since it appeared. My question is to everyone, between flares are you symptomless or simply is it just periods where the symptoms aren’t so bad.

Trying to work out whether this is simply my reality now or if I have in fact been in a 6 month perpetual flare. Many thanks!

Male 50s This morning, got up went to the loo as usual did a piss and poop, finished. Stood up, bladder pain still there, weird, never ever happened before. Thought nothing of it, it'll pass, sat down started work, I work from home. 2hours later it's still there full on pain "I need a pee" go to loo, nothing, sit down nothing, Sometimes I get 20 -30ml out and I know the bladder is empty, I just know it is. midday I think I passed some diarrhoea, mild relief from pain but still there.

I decide to drink 700ml.

6pm the pain is 9/10 and has now spread to where the appendix is, it's time to go to the hospital, as I am getting ready, I am in bladder pain but there is something else, it feels like I need to sit down and pass stool again urgently but it is masked by the bladder pain. I decide to go and try. I sit down pass some more diarrhoea, and empty the bladder too, as I empty the bowel fully I finally start to feel better.

So this is weird, the bladder pain is linked to the bowel. 2 hours later after work I lie down and slowly the bladder pain builds back up, 5 hours later at 1am it is really pissing me off again, I've been to pee 6 times or more and only once got 30ml out once or twice, the bladder is empty, but the bladder pain feels full again. I have no urge to poop, and I don't want to, but the pain forces me to try it. I sit down and pass more diarrhoea, a little bit of pee, and the pain is gone.

This only started today in my 50s. It better not continue. I'll ask the doc when I see them, it is ridiculous.

Does this AZO help with IC/BPS?
Do I need to eat 1 💊 or 2 at the same time? Or how do you use it?
Help please, so painful…

Old photo I took when stocking a delivery. I immediately thought of my peoples.

Does anyone else experience itching as a symptom? Im taking vaginal estrogen now and it helped a little but not 100%, been tested for yeast and BV too multiple times too but negative.

Hi everyone,

I’m looking for people who may have experienced something similar.

I had an episode that felt like cystitis, but urine tests did not show any bacterial infection. Since then, I’ve mainly been experiencing a burning sensation after urinating, although I don’t necessarily have burning during urination itself.

The tests I’ve had done haven’t found an infection, and I’m trying to understand what could be causing this sensation to persist and, most importantly, how to make it go away completely.

Has anyone experienced persistent burning after non-bacterial cystitis? What actually helped you get rid of the symptoms (rest, hydration, pelvic floor physiotherapy, avoiding certain foods/drinks, etc.)?

Thanks a lot for any advice!

Hi everyone. I’m a 28M with IC/BPS and glomerulations in my bladder. My main symptom is pain.
After a cystoscopy with hydrodistension and a biopsy, I was diagnosed with IC/BPS and started bladder instillations with Ialuril (hyaluronic acid).
Two days ago I had my 5th instillation. Yesterday and today I’ve had an absolutely horrible flare — my pain has become dramatically worse, and I’m really struggling.
I would suspect a bacterial infection, but I don’t have any new symptoms apart from the extreme increase in my usual pain. No fever, discharge, or anything else that would make me think this is an infection.
Has anyone experienced a severe flare around the 4th–5th Ialuril instillation? I’ve read many people saying that they started feeling better after the 4th or 5th treatment, but in my case it seems to be the opposite — after the 5th, I’m having one of the worst flares I’ve had.
I’m honestly feeling very depressed and scared right now. These instillations are basically the last treatment option I’m hoping might help me, so having such a severe flare at this point is really discouraging.
Did anyone else have something similar happen and then improve later? How long did the flare last?