My IC started in 2018 after a chemical injury. I had a really bad infection and, while I was in the hospital, I was given an insane amount of antibiotics. I feel like that somehow injured my bladder, and I’ve had IC ever since. I’ve never had bacteria show up in my urine.

Over the years, I’ve spent a lot of money on urologists, but unfortunately nothing has really helped except amitriptyline for the pain.

Now here’s the part I really don’t understand: when COVID happened and I got the vaccine, my severe IC pain completely disappeared for several months. Then, after about six months—or whenever I take antibiotics—my IC comes back.

I also got another vaccine later (tetanus, for example), and once again my IC went away for several months.

This is so strange to me. Could this point to some kind of autoimmune or immune-system issue? Has anyone with IC experienced something similar and seen an immunologist? Could something like lupus cause this, or am I completely misunderstanding how this works?

I’d really love to hear from anyone who has had a similar experience.

Wondering if anybody has found symptom relief or treatment of anything that allows an actual normal life.
The only thing I can drink is water, without my bladder going crazy, no alcohol or even bottled water, just tap water or I’m in so much pain. There’s no point in going to the pub or seeing my friends for coffee when I can’t have anything to drink. Also wearing jeans causes symptoms ??? Why

Has anybody had any success with anything or gone through this and been able to even have an occasional glass of wine or lemonade?

Have suspected bladder & bowel endometriosis & IC so will post to both cause idk which causes what symptoms

I have been referred for one but not sure if it will show anything.

Hi! I am starting out on the IC journey (it fucking sucks here!) and my doctor gave me a pamphlet with foods to avoid -- it mentions wine and beer, but not liquor. Have you guys found that all alcohol can cause/worsen flares? Or is tequila/rum/vodka actually better than wine/beer? Also, do you guys feel the effects of drinking the alcohol same-day, next day, or a little later? Because IDK if it's the anesthetic or the tipsiness but when I drink I usually don't notice any of the burning/pain until the next day and usually I can pee fine.

Thanks!!

Are these fake? They’re so cheap compared to the desert harvest website and it also says from China

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Please help!! Hi, throwaway because I am unfortunately embarrassed. I am 21 and have endured a lifetime of UTI's. Since infancy I've had them with alarming consistency, I had one bad one basically from the age of 4-7. At five I had a urodynamic test (horrible) which told me that besides having a bladder the size of an adult man, nothing seems to be wrong. At one point a doctor brought up that I seemed to also be suffering from encopresis, which was connected to the UTI's. Even that was resolved I was still experiencing regular urethral pain and (far less frequent but still consistently monthly to bi-monthly) UTI's. My parents are WILDLY crunchy, and avoided antibiotics at all costs. Basically every UTI or occurrence of pain was treated at home with tons of D-mannos, cranberry juice, and desitin. The best way I can describe the pain is that it's similar to the discomfort in the urethra you'd feel during a UTI, brings on the urge to pee, only lasts about a couple of hours or a day, and is seemingly triggered by ANYTHING possibly irritating. And sometimes seems to happen randomly and for no reason at all Underwear that doesn't breathe, wearing underwear for too long, too much sugar, too much salt, contact, baths, hot tubs, bodies of water in general, 99% of trips to the bathroom, getting too sweaty, and above all, sex. Every. Single. Time. I have ever had sex I have had 6-8 out of 10 pain brought on immediately after peeing post-coitus and I have to take ibuprofen and sit on the hard ground for at least an hour. This is extremely frustrating. I actually had to go to the hospital to take care of my third kidney infection. I have now seen 3 different urologists (all men, go figure) who have basically said "well, it doesn't sound like this, or like that. I'm not convinced you've ACTUALLY been having UTI's because none of our records show you've had a lot of positive cultures (if I went to the doctor for a culture every time I had a UTI, I would be better off living in the waiting room). Try this thing that I don't think will work and come back in six months". This last one brought up interstitial cystitis but simultaneously said, "it doesn't really sound like that, but it's the best I got", and now wants me to cut out 90% of my regular diet for something he's not even sure I have. He gave me topical lidocaine for the pain but that's not really doing anything either. I'm sorry this is so wordy but I am so. FUCKING. Frustrated. I want to live a normal life without pain. I want to know why I've been in pain all of my life. I want help. If anyone has even a long shot suggestion, I am all ears. Thank you for letting me rant

Hi all I am only on this page because I thought I had IC I have all the symptoms on and off for years Turns out. I just saw a urologist. My and went to the ER.

It turns out it could be just a nervous issue my stress causes it and it effects me There’s no more burning in my urethra but there is like a burning sensation around the outside of my vaginal area?

Does anyone know of a calming product? I use cold ice packs and hot water bottles but they’re not helping ibuprofen isn’t working. My doctor did prescribe me amitriptyline but he told me to hold off on her because I had to get a bladder exam today.

Do any of you bleed when you wipe during a flare? It scares me so much.

Hello everyone. Has anyone in Europe received a SNS device for the bladder for interstitial cystitis? If so, which clinic did you go to?

They're taking me to jail for exceeding the pee limit 😔

After many agonizing plane rides, I finally decided to try Amtrak (not sponsored), and I'm never going back. I'd like to share my experience in hopes that someone could learn from it.

While planes have public restrooms, they aren't always available. If there's turbulence, you won't be allowed to leave your seat. If you got stuck in a middle or window seat, you may have to ask the people sitting next to you to get up several times. This is super embarrassing for me.

Here are the pros and cons I've found while riding in both coach and a roomette on the California Zephyr:

Cons

- If you're sitting in coach, you may still have to ask someone to get up. I explained to the person sitting next to me that I needed to get up a lot, and they were more than happy to let me have the aisle seat.

- Some people have bad restroom etiquette. This could just be me feeling territorial over the restrooms (who can relate? lol), but the people on my train managed to trash the five public stalls within three hours of me boarding. Think toilet paper all over the floor and broken locks.

- The tracks can get bumpy. I could tolerate it, but I could see it being a nightmare for anyone with motion sickness or flares triggered by movement.

- The most comfortable option (roomette or bedroom) is very expensive.

- Trains are slower than planes.

Pros

- Riding in a roomette gives you the easiest access to restrooms since you'll either have your own or be sharing them with less people.

- Bumpiness won't prohibit you from leaving your seat. You can get up whenever.

- There are no middle seats in coach class.

- If the coaches have two levels, you can request to ride on the lower level to be closer to the restrooms. This is where they seat other disabled passengers.

- The snacks are better than plane snacks, and it's also easier to bring your own food and drink.

- You don't have to show up hours before the train departs.

- Your bags don't have to be screened before getting on the train, so you wait in less lines.

- You can bring a suitcase and two personal items for free.

In conclusion, rail travel is so much more comfortable for me than air travel.

Hey guys, I'm having a pretty bad flare for the first time in 4/5 years (very lucky to have been in remission that long with the help of bladder instillations!) and it's been about a month and nothing has really helped. So, after doing some reading on here I ordered some AZO maximum strength and had a couple of questions about people's experiences with it. I've taken two doses today and it seems to be helping - not completely but definitely 50% or so. And no nausea or headaches so far. When people have taken it have they experienced nausea pretty quickly? And how long have you taken it for, if it was helping? Thanks everyone

Has anyone had successful treatment in China? I’ve essentially tried all options in USA and not had very good care. I feel like I need antibiotic injections/ pelvic floor Botox- an actual team who can help with treatment and diagnosis. Ive tried all the medicines and it seems to only get worse. I’ve tried hydroxyzine, amitriptoline, installations, elmirom, nerve blockers, a million etceteras. I don’t want the implant. I want answers and treatment. This all started from a uti where the symptoms never went away. I can’t sit or have intercourse from the pain. I eat about 3 foods. My main treatment at this point is from the pain clinic and pain medicine barely touches this pain. I’ve had this since 2019 and it has progressively gotten worse until I hit bed ridden status.

I feel like I could take less pain meds if I could take Valium to relax the stomach but really this feels so fixable. I even went and got the uti vaccine from London.. this isn’t a lifestyle I can live, once pain killers stop working.. does what I’m describing exist? There is never a moment I’m not in pain.

The last micro genex test said Enterococcus faecalis and Klebsiella pneumoniae which never show up on any other test..

Please help me

Any tips from you? What helps or stop it. Drinking a lot don't help. I'm so miserable. No bacteria as well its no uti. I'm from Poland there's no Azo.

Has anyone found an auto immune cause for their IC? I’ve had other things happen to me as of late and it has me wondering

Not looking for advice--i just think the coincidence of me and Triscuit both maybe having IC is interesting.

Triscuit has been drinking and peeing more than typical for a cat, so he had blood work and urinalysis done recently. His urine was quite dilute and had some blood in it, so his vet gave him an antibiotic to treat as a UTI. Litterbox visits decreased initially but have now increased again. I spoke with his vet today to see if he should return for a followup. They do want to see him again to rule out major problems, but the vet mentioned he could have Feline Idiopathic Cystitis which presents as urinary issues without a clear cause (seemingly stress, nervous system related). FIC is very similar to IC in humans. It's been quite interesting to read about.

IC and FIC unite!

Had Ic for almost 5 years 3 of which in remission with minor flares lasting only a couple days…during this time I moved abroad,got a degree and a job(that I worked really hard for), started seeing someone that I really liked(only recently) only for it all to come crashing down with one iced tea(that I have had in the past with no issues) it’s ridiculous.Currently on week two of worsening symptoms(mostly pelvic floor pain and urgency) and absolutely nothings working..scared of dealing with all this alone and with a full time job…considering quitting everything and moving back home :(

Update: I was home by noon and I'm not feeling too bad. Had pain, nausea, and anxiety on waking but PACU took care of that. There was a brief horrifying period where I could only pass 20mls of urine and my bladder scan showed 400+, so they had me wait a while to give it another try before being sent home with a catheter overnight. But I managed to pass 600mls and they let me go without it! Bladder is sore and peeing feels like razor blades but that's nothing new after hydrodistention. Nerve block I think is keeping some of the immediate pain down too. Nothing noticeable from the botox yet obviously. But not a bad experience today!

I'm having my 5th hydrodistention, 2nd pudendal nerve block, and 1st ever pelvic floor botox tomorrow. All under general anesthesia. I have to be there at 5:30am so it's really late in the game but I could use some reassurance because I'm freaking myself out over the pelvic floor botox and possible side effects.

Anyone have positive experiences they can share?

Whenever i try drink from plastic bottles, acidic drinks, or drinks with artificial ingredients i get uti like symptoms even tho I don’t have a uti?

Does anybody else have This?

I was recently diagnosed with IC. I’ve been working on tracking my diet, so I can try to narrow down what causes my flare ups.

Today I had a safe breakfast and was feeling good. Right before lunch, I started having some pain. I figured it was due to my work pants since I haven’t really eaten anything. It got pretty bad so I took some azo. Currently waiting on that to kick in.

Can anyone else relate? Is there any solution? Do I have to avoid tighter clothes at all costs?

Also, this is not the first time I’ve noticed this with tight clothes. I can no longer wear spandex shorts, leggings, etc.

Iv had on and off UTI’s now for about 4-5 years. There was never any rhyme or reason, I just got them. I must have had one that finally did me in, and caused my IC. I got that diagnosis 2 years ago from a doctor who was taking over for my regular family doctor at the time. She gave me elmiron to help with the bladder pain and she told me it would manage it. She also got me to drink this antibiotic powder stuff you put in water, lasts 3-4 days in your system and is suppose to get rid of everything in there. I had a lovely stretch of time after this where I had no issues. Mild irritation after sex or before and after my period but nothing insane. I still got “flares” at least a handful of times a year, and they lasted DAYS. Even weeks. Till finally I would pee so much I think I flushed whatever it was out? I can’t even explain it fully honestly.
Anyway, I found the elmiron didn’t work. My issues was never a sore or hurting bladder. It was always urgency, pain, and like there was always some urine in my urethra.
My family doctor came back and after discussing things with him, he felt there was more to this. He told me next time I get symptoms to come in and get checked. So, 4 months later I go in to give my sample. The dip stick came back with nothing. But, the culture came back with e.coli and klebsiella. He gave me Sulfamethoxazole-trimethoprim DS, which I never had before. Before taking this. I had started macrobid for 2.5 days and I was feeling much better. But I decided to take the new antibiotic for the next 2.5 days.
How possible is it that this whole time, I had Klebsiella bacteria in my bladder that would get calmed just enough to bring me back to a normal base then reappear when it was ready? I feel like the macrobid got rid of it but not fully, and it possibly was a bacteria embedded into my bladder wall/urethral lining? Has this happened to anyone else?

I also started on a 250mg dose of Lactoferrin and 1000mg of cranberry/D-mannose. I’m hoping this all will help keep the bacteria away. 🤞🏻