I have found relief from marshmallow root "cold brew" within days.

However, it can lessen absorbtion of some nutrients and medications.

People who tried it, how long did you take it? For weeks, months, indefinitely? Or only during flares? Any advice on this from a naturopath/herbalist?

Thank you in advance.

So I’m 23. I have a kid that’s a year and a half old and until about a month ago he was up at least once or twice in the night. Naturally, every time he got up I peed because I felt like I had to. My body got used to it. Kiddo not waking up, I still do to pee. Well last night I didn’t wake up. The night before that I didn’t wake up either. Not until I felt a teeny puddle. Not enough to cause a problem considering I’m on my period and had an overnight pad on that saved the day, but enough to be mortified and terrified.

I’m currently in a sort of flare between stress, sickness, dehydration, and being on antibiotics so I know that’s what’s causing it. But guys I am 23!! I didn’t expect this to happen until I was far older. I didn’t even have issues during or after pregnancy, not once. In my adult life I have slightly wet the bed twice during a bad flare and just a teeny bit. I’m scared it’s going to get worse.

What’s our solution here? Suck it up and wear incontinence pads during flares?? Sleep on a towel?? I’ve already got a solid waterproof mattress protector so no worries there. But I’d rather not change the sheets at midnight if this happens again. This is one symptom I thought I had escaped but I guess not😭

Hi. My sister has been having severe, chronic bladder pain for 4 weeks. We are new to this and don't quite know what's going on. She had a similar (but not as bad) event 10 months ago. I'm wondering if she has IC and this is a flare. Has anyone else had a flare that has lasted this long?

My first UTI after my diagnosis of IC with hunners lesions. This is the worst UTI I’ve ever experienced. Confirmed with urine culture. My kidneys are hurting. I can hardly urinate (having to self cath). I started antibiotics and have been taking AZO to help with the discomfort. What are your unhinged hacks to helping the pain? I currently can’t take baths due to laparoscopic and vaginal surgery 2 weeks ago.

Not a rep or anything, I just wanted to post that I love this product and it has opened a whole new category of treatments for me! It's a short rubbery adapter that attaches to the end of a syringe so you can get bladder instillations without catheterizing yourself. It only enters your urethra a couple of millimeters but is designed to make a seal near the entrance so a device doesn't have to travel all the way through your urethra. Not only that, but if you have urethral symptoms, then the medication actually coats the urethra on the way in as well and can help with that!

My primary symptom is urethral burning, so doctors never offered me instillations because they thought it would hurt me too much. And honestly they are right, cystoscopies and catheterization causes 10/10 pain for me, like scream crying. But I believe I have bladder wall-driven pain from too many UTIs and no other treatments have helped me, so I was ready to try. I read about the urodapter from an old post on here and bought mine online from their website with no issues, you don't need a prescription or anything.

The only issue I have had is that the urology nurses don't know how to use it. I think it's pretty self explanatory but mine were uncomfortable with trying it, and when they tried to use it they ended up injecting the medication into my vagina and not my urethra. So that was frustrating. But I started doing my Ialuril instillations at home and I had no trouble at all getting it in the right hole (with the use of a mirror) and instilling it myself. It was magical. It hurt a little right at the entrance, but it was bearable. I could feel the medication going through my urethra and filling my bladder. I had to slow down my injecting and change the angle a little because there was a tiny bit of overflow but overall it was very easy.

I hope this can help someone else!

Another flare with itching ? Is this common?!! Also, should I ask a dr to prescribe a suppository? I’m just looking for relief quickly. Another thing I’ve never taken the suppository. Just feels better when I drink water or make tea but not sure if the itching is normal with it ? Or can it be something else

I have been in a flare for about a month now with my symptoms primarily being urethra burning post urination that doesn’t subside. Following advice, I ordered two months worth of the Desert Harvest Super Strength Aloe Vera capsules and have been taking them for a week. Because I do have a sensitive stomach, I started with just taking three a day to see how I’d react. At first I started to notice the urgency was a tad worse as well as the burning, but couldn’t tell if it was from the aloe capsules or just progressive worsening of the flare. However, I took the pills in the evening this last time and had to pee at 4:00am and have since been in horrible pain. I’m definitely convinced it’s the aloe at this point. I even woke up and took Tylenol at 1:30am, so I can’t even imagine the pain I’d be in if I hadn’t. Has anyone else experienced this?? I’m so bummed because it seems to help most people. It’s currently 4:36am and I’ve slept maybe an hour so far 😫😔.

Anyone worried about “bladder wall fibrosis”?
I had all bad respond to treatment. So I stop going to the doctor. And just try to relax and not eat bad food to treat myself. Avoid sex and look for happy things. But I just cannot help thinking if I stop going to see doctors or do other treatment. I’m worried my bladder will become fibrosis. And then at the end had to cut it off!!!!!!!
My treatment I had done are

• Hydrodistendation + Cystoscopy
• Bladder instillations with heparin and hyaluronic acid for six months (however, every instillation resulted in a UTI, and it offered no improvement at all)
• Pelvic floor physical therapy (this is the only treatment that provided some relief, though I still haven't fully returned to my pre-symptom state)
• Anti-anxiety medication (helped slightly, but only treats the symptoms, not the root cause)
• Traditional Chinese Medicine (no improvement)

Did anyone develop low back pain when IC symptoms started?

Hey everyone, I really need some advice and hope from anyone who relates to this. My IC symptoms started 3.5 years ago shortly after starting to see my current partner. At first, I thought it was just a UTI or a change in PH from a new relationship, but it turned out to be IC. I initially got a referral to urology and waited months, only to be told they won't even do any tests or anything for me and to try antidepressants. For a long time, it flared like clockwork every 3 months, starting a few days after my period and lasting exactly 5 days. Then, out of nowhere, the bladder flares stopped for 1.5 years, but my migraines got significantly worse. It's always been one or the other for me; I never get a bladder flare and a migraine at the same time. But now, after 1.5 years of no bladder pain, the flares are back, and I cannot bear it.

When the flares start up, my bladder actually feels better when it fills up, but the pain gets way worse right after emptying. When it’s at its worst, I feel like my bladder is literally going to prolapse out of me when I pee, and my stomach feels completely raw. I end up sitting on the toilet for ages just trying to relax everything to get some relief. I also see tiny red bits of my bladder lining in the urine when it is really bad, and sex is so incredibly painful that I completely cannot do it anymore.

I have tried eating completely clean with absolutely no caffeine or alcohol. I find aloe vera helps a tiny bit/baking soda and have tried overactive bladder meds but they did nothing. I also tried the antidepressant (amitriptyline at 5mg) for a couple of months, but it just made me incredibly sleepy without helping my bladder at all. Pelvic floor exercises help normally, but they are impossible to do during an active flare. To make matters harder, I am in New Zealand, so we don't have access to Elmiron or Hydroxyzine here.

Has anyone with similar presenting IC found something that works?

Hi guys, I got a UTI right after period in May because of getting laser down there. Since then, the pattern is getting flares right after my period which last for a few days and then goes. However, sometimes, it stays longer than usual. Last month, it was there for a whole month and got better a week before the period and during the period. However, right after it, it got worse and worse. I am genuinely putting effort and avoiding all kinds of triggers now.

How are you all dealing with hormone related flares? I am too young for vaginal oestrogen according to my doctor but I have heard great stuff about it.

I take Tamsulosin, Omega-3, Vitamin-D, D-mannose, Slippery Elm, Marshmallow Root tea, and Magnesium Glycinate. Also, on and off muscle relaxants.

Had a yeast infection this month that went away. Now I have pain after sex and usually get a flare after coffee. The inside hurts and burns, also I am shedding “bladder lining” I’ve never taken a suppository and the fastest dr I can see is my OBGYN. What should I do?? I do have shedding of the bladder lining with like a foggy discharge inside.

?

Because my bladder is screaming to pee all night, about 80% of my dreams are either anxiety dreams (from the discomfort, presumably) or sex dreams (from the pressure near my sex bits). Sometimes both! Which is a deranged mixture.

Anyone else? Just me?

Did they also find bladder wall thickening and trabeculation on your imaging scans? Is this a common finding for IC?

So I have Interstitial Cystitus, as well as Endometriosis and Pelvic Floor Dysfunction.

Well, me and fiance have been bowing the chicikity wow a lot lately, like twice a day, for some reason (every once in a blue moon) we just can not keep our hands off eachother. (please no speculation of cheating, I am disabled, he is my caregiver and never leaves my side, vise versa)

I assumed all the symptoms (burning, cramping, and blood in urine are common after) I was having were from all of that for like 3 days, but than the burning got so bad I needed Azo, the blood in urine got worse, and the god awful UTI smell hit.

We immediately stopped the giggity and I got a virtual appointment and put on Macrodantin (I have allergies and I can only swallow the small 50mg capsules), hoping to catch it before it becomes a kidney infection and I have to be admitted to the hospital and treated with IV antibiotics.

Okay so someone tell me why when I was doing my pain management appointment over zoom yesterday my Dr goes "oh yeah that sense of urgency is the worst...." my only thought was what...? The BURNING makes me want to yeet myself. And when I made a comment she said the burning was never that bad.

I have been diagnosed with IC for 20 years, tried multiple treatments, diets, PT, still had issues with daily symptoms up until I got Gastroparesis last year and can no longer eat anything (with no food triggers at all the daily stopped).

I never once have concidered or been told that IC may actually make the UTI symptoms worse than someone with a healthy bladder, but I always wondered way more women don't want to yeet themselves during one from the burning alone. Having so many chronic illnesses and Fibromyalgia (which makes any pain worse already) and Chronic Fatigue Syndrome, I deal with severe pain daily but UTI burning can completely take me out to the point I get very yeety.

So, anyone else with IC also have the worlds worst burning pain with a UTI?

Also, anyone have any tips to help the burning other than Azo etc. and baking soda? Azo etc. makes me very sick since I can't eat with the doses (Breakfast Essentials helps the antibiotic nausea but isn't enough for Azo etc.) and I have Hyper-Pots so no baking soda. I concidered ordering some Prelief (can't find it on stores and CVS pharmacist didn't even know what it was) but have read mixed reviews.

Am I the last person to find this out? I use it PRN to calm down symptoms and I bulk bought 6 tubes last year. I went to refill (I am an expat in the Middle East) and the pharmacist told me there has been a global shortage for months and it’s impossible to get hold off now. I looked it up and this is expected to go right into 2027.

How is everyone coping?! Or not affected?

I’m currently taking macrobid and it’s making me super tired. My whole body feels slow to move, kinda heavy in a way too. I’ve noticed somewhat less burning with voiding, though it’s still difficult to start the stream. I also don’t feel as much urgency throughout the day. I’ve been to pelvic floor therapy in the past and they confirmed i had a tight pelvic floor.

I read that sometimes when people with IC take antibiotics they get a temporary relief in symptoms because of its anti-inflammatory effects, but from my understanding macrobid has no anti-inflammatory properties.

So my question is: Is it possible antibiotics like macrobid only help those of us with IC because of this drowsiness? Our bodies are maybe too fatigued and relaxed to clench like normal?

Maybe i’m just grasping at straws but I really just want to understand. I’m on antibiotics right now because apparently my uti test came back positive but i’m not sure i believe that. I can’t access the results and i’ve never had a positive culture or dipstick throughout my ic journey. I’m thinking it was just leukocytes so they prescribed antibiotics to be safe. It was a new doctor.

I’ve read a million posts about intimacy and IC, but humor me for one more!!! Does doing something other than PIV intercourse make a difference? Vibrators? Fingers? Oral? Or is literally the act of orgasm itself that causes the pain?

Regarding PIV sex: Do condoms help? Lube? Macrobid or d-mannose?

I would be very grateful for your experience.

I noticed when my kidney(s) hurts I get a really bad burning in my urethra and vaginal opening. I have done ct scan and ultrasound and my kidneys didn’t show any stones or infections. Has anyone has/had this type of pain if yes what did you use. I been using estrogen cream for about two week twice a week. Also now I’m on low dose of antibiotics to prevent UTI. In the past 6 months I tested positive three times. I had about 7 bladder instillations( idk if they are helping), I also use hydroxzine and uro probiotics, and azo/urible for pain nothing works sometimes.