I’m 30F, diagnosed with IC 4 years ago, and I am planning on going to a music festival in a few weeks (EDC). I suppose I need a safe space to vent, to hear others stories, and to receive advice.

I’ve been feeling pretty defeated between a current flare-up keeping me up through the night, no prelief availability meaning I’m reducing my caffeine to almost nothing, and as excited as I am to rave I’m terrified of my condition impacting my time and my friends time out. I’m sober/in recovery, and I have no issues being around people using substances, though in times like these I fantasize a bit about being able to numb out through the physical experience of waking and dancing. So much of my motivation for getting better has come from the desire to make it through EDC without my body crapping out on me (one of my goals in PT was “be able to rave”…love my PT for making that a medically-billed goal.) It’s been 4 years since I made that goal, and while things have improved slightly, I haven’t met it. The last time I went to EDC I made it to day 1 and had to completely miss day 2, and only attended day 3 for a few hours and felt miserable through it.

This year, I’m considering using a walker with a seat. The biggest hesitation I have is the fear of stigma, being young and invisibly disabled. I also can’t help but to feel “overdramatic” by considering this option. I also think it’s time I stop trying to fight my body on this one and use accessibility tools to help me have a good time. I hope this isn’t a forever option, I have been so dedicated to treating my body with love and care, doing Pilates and yoga at least twice a week, meditate, going for various length walks, avoiding food triggers, maintaining routine, and working on sharing my pain levels with my partner more openly to honor my limits better….

and at times like this I feel like I’m owed a reward for all my hard work and effort.
But that’s not how chronic illness works.

Thank you for giving me some space in your mind and heart for hearing me out. Again, any advice, questions, and words of encouragement are welcome.

hi all-

i’m 18, female, and never had urinary problems in my life, no history of UTI or anything of the sort. the last 4-5 weeks or so, i’ve been dealing with symptoms of frequency and urgency. i haven’t really had any pelvic pain, occasional abdominal pain when urinating but nothing severe (3-4/10). no burning either. i cut out all soda, caffeine, sugar, and any other bladder irritants i could at home. i’m having difficulty starting the stream, difficulty keeping it going, and then it feels like my urethra just “closes the door” when i’m only like 60-70% done voiding. so then i end up with some stuck in me that drives me crazyyyy. i cry and scream for hours from the toilet/bathroom, trying to get it out but it doesn’t work. i’ve noticed it helps slightly if i stand over my toilet and pee standing up. ive also peed into hats after i initially voided to see what comes out after and anywhere from 10-30mls is left. i’ve had probably 20 urine samples taken which are all indicative of UTI, but never grow on the culture. all of this led to a series of testing/imaging which originally was thought to be a bladder diverticulum, but now is a confirmed cyst pushing on a few structures like my bowel and top of uterus. they believe it’s coming from my fallopian tube, but aren’t 100%. they also keep saying they don’t think a cyst that size wouldnt cause such symptoms (2.6 x 2.7 x 3.1 cm). they have thrown around interstitial cystitis a few times but told me only an adult urologist can diagnose it (i’ve been a CHOP patient my whole life) so i have an appointment coming up with an adult urologist at the end of the month but im in so much discomfort over this that i cry all day. but on the other hand i cry because im scared to be catheterized. i don’t want it to be IC… my moms step mom had IC and ultimately committed $uicide over her bladder problems. and if it matters i noticed these symptoms right as i was ending my period, maybe 2-3 days before. i read IC can be flared up from the menstrual cycle and im about to have mine again and im so scared. if theres anyone out there that might have a similar story or even tips to help me in the mean time, im very open. i have started to take marshmallow root, aloe tabs, and pumpkin seed oil a few days ago since i read that can help.

A few months ago I posted on here about lactoferrin and how it had calmed a flare i had almost immediately- I’ve come back to say it’s happened again. I am in a flare after taking some probiotics the urologist was trying and after a week of pain I tried lactoferrin again and it’s gone within 24 hours.
Now, it’s worth saying my flares are pelvic floor related, not bacterial related, so I get immune responses to things quite badly and that irritates my bladder and then my pelvic floor guards and I get constant pressure and urethral burning between toilet trips. So it could be that it only works for mast cell related bladder irritation, but it is miraculous for me.
Wanted to share as I still can’t quite believe how well it works.

Hey all,

Finally had my cystoscopy two days ago wow that was painful.. i wanted to pretend it doesn’t hurt as bad hate complaining as well but it hurt:( it isn’t as bad during the day than it is at night and I don’t know why but I feel the throbbing pain more at night how long did everyone else recover?

I know everyone is different I also got my time of the month a day after so that isn’t helping either🫠.

Mirabegron? How has it worked for you ?

27F, would like some advice on if I should do the bladder instillations which my urologist has recommended! All claims below are anecdotal not empirical :)

I’m scared the instillations will cause tears/damage/reinfection/make things worse!!! It would be great to hear from people if instillations have been worthwhile, and about complications/side effects in the short, mid & long term.

Symptoms: Pain, urgency, numbness/tingling, nerve pain down my legs, you know the drill if you’re here! Currently am not in employment cause of the unpredictable flare ups + other health issues. Super keen to get back to work asap: I miss working in a team and being dependable/ relied on. But upside is I do have time to recover if I do instillations.

Things I’ve tried for urinary issues
- hiprex, taking it every day. Definitely has reduced infections and systems after after a tricky teething period of making things a bit more painful
- had the uromene vaccine in early 24, think it made things better, or at least helped me understand the histamine mechanism for pain which has been instructive in how I manage symptoms
- tried IC diet (slow reintroduction of chilli after multiple years off has been mostly ok). Am still relatively careful!
- yoga, gentle stretches, pelvic floor relaxation techniques and meditation

Relatedly, i also have recurrent vaginal infections for years. since august I’ve been infection free, still unclear on if these methods are long term effective treatment
- I did a course of vag inserted nystatin+metronidazole cream for ten days starting the day my coil was inserted in august. This treatment isn’t available in the uk so I picked up this cream in Brazil.
- i use balance activ after sex every time - this has helped with recurrent infections.
- I used Crispact (oral probiotics containing lactobacilli’s crispatus), and lactogyn (various lactobacillus strains, inserted vaginally after sex). Both of these I acquired in Bulgaria
- new partner who is very intuitive and I trust deeply, knows when to stop and when I’m pushing my body too far/quickly sexually.

Thanks for listening everyone!!! <3

This is my first post on the subreddit.

Backstory: early January I believed I had a UTI, but after so much tests coming back negative, I finally was able to get in contact with a urologist back in late September. She said that there was a chance I had IC, so she gave ne medications to pick up, most notably one that was similar to Azo. I have also been using Oxybutynin at night. I am also going to go back to the Urolgist for a follow up November 4th.

According to the Urologist, she wanted me on a strict IC diet. So I have been following close to it. It was doing well at the start, but suddenky been having bad cases of urgency and a bad flare that acted up for two whole days depsite the fact I have been eating well.

All I have been drinking is milk and water and been subsiding on nothing but chicken sandwiches made out of pull-apart rotisserie chicken and American cheese + chicken-cheese quesdilla's using the same ingredients. I am just having a moment of feeling msierable, especially coming from a family of Italians; having to never touch tomato sauce, lasagna, or anything like that ever again, plus my love of pepsi just makes me want to die inside.

I am not sure if I will ever feel better, and I can't imagine a time where I will see the light at the end of the horizon. I miss the foods I used to eat like pepsi, italian cuisines, and especially chocolate.

Just want to vent my frustrations.

It's 44 minutes until midnight here and I'm still awake. My nuerological condition causes involuntary movement and it's killing my bladder. Omg. I'm soo tired. The urologist perscribed me medicine that I'm going to take to hopefully help with this. Any other suggestions on how to manage the pain I would greatly appreciate. Thanks in advance

Have iron supplements caused a flare for anyone? Sweet potatoes?

I am 45M. I am noticing a clear link between constipation and bladder pain. I am already on MiraLAX daily and psyllium husk. I am a little constipated right now and my bladder pain is bad. I think I ate something recently that didn't agree with me. Does anyone else have this issue? Do you have any tips to manage this in addition to figuring trigger foods and consuming fiber?

Hi everyone! I am sure I saw some feedback on using estrogen but would like to see if anyone would like to share their experience/success with it.
I have been having IC with flares mainly caused by spicy food and sex. I saw my urologist today for the follow up and he prescribed me estrogen cream as he thinks it might help me with urgency causes by intercourse (I’m also taking trospium and was referred to PFT).
So, if anyone had sex induced urgency and was also prescribed estrogen - did you see any results?
I would appreciate any feedback. Thank you!

Hello! I was recently diagnosed with IC and I'm running into an issue. I have noticed I am leaking more than I like, especially now that I have a bladder that can't wait for me to always get to the toilet. I also found out I can't hold my bladder when laughing. Which is fine, at least I'm laughing! Does anyone have any suggestions for the best products for slight leaks or for heavier ones? Every time I walk into the store to look at the products, I just get overwhelmed and end up leaving without buying anything. And the internet isn't as helpful as I would like. Any suggestions would be amazing! Thank you in advance!

For some reason, IC has been getting triggered a lot lately after i shower and ive been taking painkillers almost every day to deal with it. Which is not ideal, and it takes several hours for it to fully get rid of the pain.

Most doctors dont seem familiar with IC because it's very rare and i wasn't taken seriously when i tried to talk to a specialist about it...they always default to "its probably a UTI" and want you to do a chart listing the number of times you go to the toilet and the frequency...and in the end they told me there was no cure and to just keep taking painkillers...

i've been struggling with really bad daily bladder pain for 2 years now. the urogyn i had been seeing was more than useless and basically told me that we'd exhausted all of our treatment options and that i just had to live like this. which i thought was ridiculous. i talked to my primary who referred me out to an endo specialist who offered to do a laparoscopy on me right away. she said that even if it wasn't endo that it would still be good to have some data and confirmation. my lap was yesterday and... they found endo!! it's still too early to tell if this was the root cause but i am sure that it was a contributing factor to my chronic pelvic pain. the endo was found on my uterosacral ligaments, which, although not directly on or in the bladder, share nerve pathways with it and the inflammation from the endo can affect the bladder. i didn't present classically at all, my urinary pain has always been worse during my luteal phase and if anything calms down a little bit on my period, so even if you don't think that endo could be a contributing factor to your pain (especially if you have tried a lot of other treatments that have failed) it's worth looking into! i'm hoping that i will have some more hopeful and exciting news to share in the coming weeks! :)

Prelief has been taken off the market. It will not be available until late December. I cannot go without it. Please let me know if you find any. I take several Prelief tablets a day. Without these tablets I’ll be very sick.

Hallo Leute
Ich hab seit einem halben Jahr die Diagnose und kann einigermassen damit leben. Die Beiträge dieser Community haben mir auch schon geholfen und mir Mut gemacht. Mir fehlt es aber so sehr, mit anderen Betroffenen persönlich zu sprechen und mich auszutauschen. Niemand ausser mein Arzt versteht die Krankheit, nicht einmal meine Physiotherapeutin…
Deshalb bin ich dabei, eine Selbsthilfegruppe zu gründen.
Falls es also jemanden gibt, der sich ebenfalls mit dieser Krankheit herumschlägt, du dich ebenfalls gerne austauschen möchtest und in der deutschsprachigen Schweiz lebst, melde dich!

Ich wünsche allen: haltet durch, bleibt stark, verzweifelt nicht und versucht trotzdem zu leben!

Hi everyone -

I've been a lurker for years and feel so bad for all of you here, experiencing this dumb ass disease. I was diagnosed about 4 years ago after incessant "UTIs" showing no bacteria, massively irritating tingling sensation at all times, feeling like my bladder was still full right after urinating, and tenderness whenever touching my bladder area. It has impacted my whole life and I've found a mixture of things that is working for me that I wanted to share - as of today, I have gone 10 months without a flare.

1. D-Mannose - 1 heaping teaspoon every single day. It has zero flavor so I add it to to water in the mornings. https://www.amazon.com/dp/B00JWKDF6A?ref=nb_sb_ss_w_as-reorder_k0_1_7&amp=&crid=24SHCKJEBAV26&sprefix=d-manno&th=1

2. Zyrtec/allegra - 1 tablet every single day. I read an article that IC is like an allergic reaction in your bladder.

3. Women's probiotics with urinary tract support - 1 tablet every single day. https://www.amazon.com/dp/B079G4N8K2?ref=nb_sb_ss_w_as-reorder_k0_1_4&amp=&crid=UFLBSCHR5OTM&sprefix=prob&th=1

4. Quercetin (be careful to pick one without vitamin C in it) - 2 tablets every single day (okay, sometimes I get lazy and only take one a day). This was mentioned in that same study about the allergic reaction happening in our IC bladders. https://www.amazon.com/Pure-Encapsulations-Hypoallergenic-Bioflavonoids-Cardiometabolic/dp/B0016J2K16/ref=sr_1_2_sspa?crid=17XNKDGZXHOYG&dib=eyJ2IjoiMSJ9.odXJrGYv0UXgq_E14xtNE4p1YFHtUcyPVwc05Kj-j4LbD7V5vIe0NuDe7PCdnDf_fHOpK6Pgwt5qyxmFoq3gDn0DnmyTqoSmayVOgHdtZ949kl4C79sVp4aaBsVlBDtOQiBfJRvZkREJMh6j5l9OTVS-WJ9eKFvu0lT0cBKFg5Hd2wbz8JUDAc7baEKlQimPhmmk3ZvUOJrNeB641W_9R4Qt1InySmrc3w3T608X9JNZEqnjggfHU7B0Dq7nNZT67JolM7aupc_O9k-81sMuYjRp0UhzucQRD11BjgSHaDg.bGTQDikBom6Bf4Uknl9Or4BK8TN8ZWqO8LBxZuu5ZZM&dib_tag=se&keywords=pure%2Bencapsulations&qid=1791894059&rdc=1&s=hpc&sprefix=pure%2Chpc%2C148&sr=1-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&th=1

5. Low acid multi-vitamin - 1 per day (i'm actually pretty bad about taking this one and only take it a few times per week). https://desertharvest.com/products/multi-vitamin-low-acid-90-capsules

All of those, CONSISTENTLY and then these ad-hoc:

1. Uro-MP - when I feel like my bladder is a little off, I'll take 1 of these per day for 2 or 3 days with a lot of water. My sign is using a weak urine stream or incomplete bladder emptying - I pop one of these and it takes care of it.

2. Prelief - Alcohol, coffee... These are direct triggers for me. I have found that I can still enjoy them - albeit less often - if I take 3 capsules of Prelief before consuming. I'll have maybe 1 or 2 coffees/teas per week and maybe 1 alcoholic drink, ALWAYS with 3 capsules of Prelief.

3. My heating pad - this one may just be mental more than anything but I sleep with a heating pad on low low heat on my bladder every night. Not only has this soothed period cramps for me, but I do think it's helping with any bladder inflammation that might stir up.

I've tried a hundred other things that have never worked long term - plain cranberry juice, AZO pills, antibiotics, aloe vera pills, etc etc. If anyone else is on a similar routine or has tried this in the past, I'd love to hear how it is working for you!

ugh so annoyed, I’ve switched all my soap to unscented, taken super hot to super cold to room temp showers and it’s not making a difference, I even wash my hair over the shower instead of in it so the soap doesn’t drip on me WHAT AM I DOING WRONG 😑

Does anybody else struggle with daily headaches? I’m talking everyday without fail I get a headache around midday or evening. I have a headache right now as I’m typing this. This is been going on for over 10 months at least probably longer. I’ve always gotten headaches really easily but this is another level. Every day. Sometimes multiple times a day it will leave then come back. I got blood work done and I have high cholesterol and am almost pre diabetic with high insulin levels.

I’m wondering if any of you all struggle with it or is it something else that’s not bladder/IC related for me, I would love to know. Just curious!

Also have any of you all gotten any relief of symptoms through weight loss? Specially urgency? Just wondering if getting healthy and less weight in the midriff especially helps with bladder urgency and frequency at all?

Super curious to hear from anyone and thank you for reading <3

Hello!

Mainly for people who have mainly urethral pain and their IC flares up with their period. What are we wearing? This might be tmi but if I could just go commando and free bleed without the mess I would be okay, but that’s gross lol.

I wear pads now because I found that I was getting uti’s because of tampons and also the pressure of the tampon would press against my bladder and made the IC worse. I’m thinking of trying period underwear to try and be at maximum comfort. Does anyone use these? Are they messy? Comfortable? Easy to clean? Lmk.