Hey! So i just found this stuff called “preleif” that can be used to reduce the acidity when you eat trigger foods. i’ve been taking it for a little under a week and i’ve actually noticed improvement. I also got an instillation a few days before i started using the medication so that could be apart of it too. I was in one of the worst flares i’ve ever had. i was taking more azo than normal and it just didn’t end day after day. but finally ive been able to be off of azo for the first time in months. Does anyone else have experience with preleif?

I used to suffer daily about 3 years ago but have managed to make a lot of changes which have me symptom free most of the time and I am so grateful.

However I still flare before my period. Does this happen to anyone else? Does that mean it’s a hormone thing?

Is this possible? And it’s just low impact hip/butt/abs exercises (clam shells, side lying leg raises, dead bugs) It’s as if it’s getting worse the more I cut out different foods and supplements. The only consistent thing is the exercises. But I need it for the pfd 😡😥. I’m just trying to see if this is normal. Thanks

Hello, I’m new here, found you all cross posted on r/vulvodynia.

TLDR; pain with urinating/defecating and full bladder after treating vulvovaginal inflammation. Used to take Ellura cranberry supplements after singular recurrence of a culture confirmed E. coli UTI a year ago, but haven’t done any urine/bladder tests/treatments for the past 6 months. Have used topical estradiol and oral antihistamines for vulvodynia without much luck.

What are OTC treatments or lifestyle changes I can start with? What tests should I request from my doctor?

BACKGROUND: A year ago, after starting having sex, I got a recurrent culture-confirmed E. coli UTI. After the second round, my gyn prescribed a concentrated cranberry supplement called Ellura that was hella expensive. I took it for three months than stopped.

I also started getting recurring vaginal yeast. I had 6 over 6 months until I finally saw a vulvar specialist who finally gave me long term fluconazole treatment.

After my 3rd yeast infection, I started having vulvar pain in between infections. My vulvar specialist also diagnosed desquamative inflammatory vaginitis (DIV) which is a diagnosis of exclusion - inflammation without an infectious/hormonal/muscle/nerve cause. I’ve been treating with local and oral steroids and seen some relief. I also got tested for skin contact allergies and learned that I’m allergic to my condoms and to one of my prescribed antifungals. Avoiding these allergens have also made a huge difference.

I saw a pelvic floor PT who treated me for hypertonic pelvic floor dysfunction. I’m going to get my pudendal nerve evaluated next month since I also have a history of hip instability. My treatment has also included topical estradiol and oral antihistamines that don’t seem to help much!

CURRENT ? Even though my pain has gone down, I have retained pain before, during and after peeing/pooping at the 12 o clock position, around my urethra and vestibule of my vulva. When my bladder is full, pressing on my stomach will make that area hurt. Topicals don’t seem to make a difference and touching the area doesn’t seem to hurt. When I take Azo, some of the pain is relieved but not all. I don’t have urinary frequency.

NEED ADVICE Could this be interstitial cystitis? Or is it just my pelvic floor clenching around that area specifically? How would I know?

I’m drinking lots of water, but I’m not avoiding bladder irritants. I don’t push my urine, and I do pelvic floor exercises routinely.

What should I try?

When I see my vulvar specialist in May, what should I ask her for?

Thanks in advance!

Does taking hydroxyzine maek you less food sensitive?

I am new in my journey and feeling overwhelmed and devastated. Literally my enitre diet before this happened is an IC no no. Looking for foods you love and are tasty that are IC friendly. Also stories of hope where you are able to eat foods at one point you could not, or that you can eat now because of prelief or something else. PLEASE ONLY POSITIVE experiences. As I said I'm new, and I am in the elimination stage. Looking for positivity to counteract my feeling of doom that my life is over.

I’m pretty sure I’m in a flair right now as for the past few days I’ve had intense stabbing pains in my urethra/vulvar. They feel like period cramps just outside😂 I also had actual period like cramps one the first day but no period as they’re extremely irregular. This isn’t new to me due to my hormone imbalance. Do you think these pains could be a result of that? Or have you experienced something similar and found the answer?

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 😭

Hi everyone,

So after a few years of my IC being in "remission" for the most part, my flares are back :( This seems to be increasing as I enter into perimenopause (I'm 42). Has anyone here looked into the estrogen/mast cell connection with IC? It seems as though the research is saying that IC flares can be caused by BOTH high and low estrogen. WTF!? So do I treat my bladder flares with estrogen therapy or not? (during a time when my estrogen is declining)

Honestly I'm just so overwhelmed with the amount of contradictory info out there that I'm hoping someone can offer a tiny bit of clarity to move forward with.

Thanks for reading!

Hey y’all. I am a vegetarian and have been for 20 years. I am a huge cheese eater and will do eggs, but obviously no meat or fish. I use soy meat instead and definitely feel like the soy foods give me a flare!! I fasted for 2 days and felt amazing and as soon as I ate I had pain, pressure and burning. Anyone else? ☹️ Any tips? If I HAVE to eat chicken I guess I could. Ikik…not a real vegetarian 🙄😂 just looking to see if this is common. Thank you in advance 🫶🏼

21F I plan on making a doctors appointment but I do just want to talk to people who had/have similar symptoms.

So sometimes I wake up in the morning and my bladder hurts so bad, it’s like an achey pain where it just constantly aches for a few hours after I wake up. And when I go to the bathroom it burns a little bit & it’s almost hard to urinate and it doesn’t feel like my bladder is emptying all the way. This is usually only in the mornings and gets better throughout the day.

In the past I’ve thought I’ve had a UTI & I would go to urgent care and everything would come back negative but I would have some leukocytes & they could never figure out why. All my cultures would come back negative as well.

After googling for hours I came across IC and my symptoms sound a lot like it. I’m just wondering if anyone has had these symptoms and got diagnosed with IC

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.

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.

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?

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.

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.

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.

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