r/Interstitialcystitis

Literal joke between my partner and I. Due to us only having one bathroom in our home, we share it. He tells me when he's going to take a while in the bathroom in case I should pee first as I pee frequently. He does this in a very silly a cute way sometimes and says "the poop man in coming" even if he's just washing his face or whatever.

Now, I have started doing the same thing. When I have to go pee and he's in the washroom showering or anything I announce something like "the pisstress is coming". It's a funny joke to cope with the fact that this condition sucks.

as another little bit, sometimes I call my IC my piss-ability to cope as a joke. It's a disability for many and incredibly disabililing for me so a little giggle feels good now and then.

After being told it’s very likely I suffer with IC with no explanation as to why, I couldn’t help but to refuse to believe that. After not seeing any improvement from the strict diet and lifestyle change I knew there had to be something else going on. I received pelvic MRI results from something unrelated, and turns out I have a 5mm skene duct cyst sitting right in my urethra. This has caused my two years of daily dysuria, bloating, bladder pain, bimonthly UTIs, etc! If you have unexplained dysuria I highly recommend getting an MRI referral to see if this is what is causing your discomfort. I’m feeling optimistic about finding relief once this is resolved. Good luck ladies!

It all started with a UTI in April 2025. I was prescribed 3 days of nitrofurantoin which did not clear it. I then had a further 7 days, but unfortunately that still wasn’t enough. This was followed by two courses of ciprofloxacin and then amoxicillin.

By the end of May, the infection had finally cleared, but I was left with severe bladder pain.

It started with pressure in my bladder after a flight, and then in the days that followed I developed constant pain. My normal urge to pee disappeared and was replaced by severe pain whenever my bladder filled, even slightly. Every day felt difficult and exhausting.

I saw a urologist who told me it was likely post-UTI inflammation and that it could take up to 3 months to resolve. Whilst I did have some improvement over time, I was still experiencing pain, and my whole lower pelvis felt sore and tender, even to press on.

By October 2025, it was decided I should have a cystoscopy with urethral dilation. For me, this was the first real step in recovery. However, I was still left with irritation and what felt like nerve pain caused by the long-term inflammation and months of my body being stuck in pain mode.

Very gradually, things started to improve. The pain became less intense, the flares became less frequent, and I slowly stopped thinking about my bladder every minute of the day. By the end of March 2026, I finally felt back to my old self.

This was honestly one of the most terrifying periods of my life. I found very little positive information online and became convinced I had IC or that I would feel like this forever.

I wanted to share this in case anyone else is going through something similar. When I was in the middle of it, I desperately wanted to find someone who had been through the same thing and come out the other side. Healing can take a very long time, but it is possible.

Ive been dealing with this for the last year now and I am at a loss. I’ve tried everything. Currently doing instillations. Nothing works. Every once and awhile I’ll have a few good days. I just don’t understand what happened. It’s like someone flicked a switch and I can’t turn it back off. I am desperate to put this into remission but I seriously don’t know what is left to try.

Those that have had long term remission, what did you do??

Anyone have suggestions for seat pads that actually work. Sitting causes lower right abdomen pain, pelvic floor pain, tailbone pain. Been taking work off but it’s inevitable I got to go back soon . Thanks

Hello everyone!

I was curious if anyone out there has any trouble with core exercises while having ic? I've been trying to lose weight and i fear I'm turning out skinny fat due to not being able to find exercises that wont hurt or at least hurt less. I know i cant spot reduce but i also know if i keep going down this route ill look like mash potatoes. i just need any tips that can help! thank you !

Hi there,

Unfortunately for me, my IC symtoms react to herbal teas, decaf teas, roobios teas, decaf coffee, coffee, espresso, cafe-libs, milk, oatmilk, coconut water, whey powders, whey bottled drinks, chocolate milk, no electrolyte packets, etc

I cannot drink soda either, but I really never cared for it. So there is no loss there.

I can only drink water or otherwise I will be hit with pain.

Is anyone else there like me? And how do you give yourself joy in life without anything other than water? How do you get your calcium?

I don't understand how a lot of people in this sub are able to drink tea or coffee (one of the other), but I cannot tolerate any of it, at all. 😢

has anyone taken both hydroxyzine hcl vs pamoate and noticed any differences? i have taken hcl for a year and it's been amazing - i take one pill a day and it has changed my life and i barely ever get drowsy from it. i asked my doctor's office to refill my prescription and they changed it to the pamoate one, for some reason. i complained and now they're being pissy and saying i need to come in. i don't get why they changed it and why they're being pissy about undoing the change. i don't want to take pamoate because i read it is more sedating and i don't need sedation. also, the ingredient list is kind of gross with all the coloring agents.

anyway, has anyone noticed a difference between them? if i can't get the hcl refilled i might have to take the pamoate for a bit and want to know what to expect. thanks!

So my only symptoms are urgency, no pain when I pee, no pelvic pain, just feeling like I suuuper have to pee even when I’ve recently gone. When I go to the bathroom I can pee a decent amount even if I’ve just gone 20 minutes prior!

So question: has anyone had this symptom and what do you do for relief? I’ve tried all of the supplements suggested here and they do nothing. I’ve tried drinking tons of water (makes it worse), I’ve tried limiting my water intake and I can’t, lol - I can’t stand feeling thirsty. Limiting caffeine does seem to help a little but not enough to fully give it up.

Help!

I've had 3 UTIs (or one recurrent UTI) since my last hydrodistension at the end of March. My doctor decided to put me on Gemtesa because my UTI gives me frequency, urgency, and spasms, all of which are symptoms I don't have with my normal IC flares. I'm not particularly happy about being on the medication but my doctor insists my UTI is a contaminated catheter sample. Oh well.

I have had a pretty severe headache on and off since starting the medication. For those of you who've also had that side effect, how long does it last? Is this something worth reporting to my doctor or should I just wait it out?

Tomorrow I have an appointment with my urologist to get a CT scan done and I’m honestly pretty nervous about it.

I’ve been dealing with really bad urinary urgency and nocturia for a while now, and so far my urologist hasn’t seen anything concerning. He mentioned everything looked normal from what he’s checked, but he still wants me to do a CT scan just to rule out kidney stones.

I don’t know why I get so anxious about stuff like this, but medical tests always make me think the worst even when I try not to. I already had a cystoscopy done about 7–8 months ago, so I’ve been through some of this before, but I still get that same uneasy feeling leading up to it. I’ve never been in any pain just spasm feeling if that makes sense fyi

Just looking for some reassurance or good thoughts from anyone who’s been through something similar. If you’ve had a CT scan or dealt with similar symptoms and it turned out okay, I’d really appreciate hearing about it.

Send some prayers or good vibes my way if you can 🤞

I (27 F) got my first ever BV diagnosis after experiencing urethral burning, frequency/urgency, and like a stabbing pain that would shoot into my urethra. Initially thought it was a UTI but after a round of nitro and it didn't clear I went and got an STD panel and it came back as BV. I've been sexually active for 10+ years and never have I ever had BV. I'm on metro gel right now and it does seem to be working, my symptoms have decreased a lot but not gone away completely (Day 4 of tx). My question for you guys is, did metro get rid of your symptoms within the timeframe of treatment? I've been doing research and I'm a tad worried. I know that BV can actually be a symptom of Ureaplasma and Mgen and seeing as I've never had BV before, that idea is in the back of my mind. I've got another extended STD panel to swab for the two in 2 days but just wanted to know some of you ladies' experiences.

This sucks

I got a cystoscopy done partially because my gynecologist wondered about endometriosis, and partially because i've had periods of time where I would briefly find a drop of blood on my tissue after urinating. We did it today and on top of being excruciatingly painful for me, we really didn't find anything useful. The doc found one red spot they said could either be endo or something related to a blood vessel, the word of which escapes me at the moment. They're going to send the pic over to my gynecologist to get her opinion on endo/not endo. I feel so defeated and like I went through a ton of shit for nothing.

I’m struggling so bad. I haven’t been able to work due to pain. My insurance denies my pelvic floor pt and most meds. I try to get Medicaid keep getting denied. Unless I have a child. So do I really have to have a baby to be able to get care for all this pain I’m going through?! This is so insane but I’m just at the end I don’t even know what to do anymore.

It all started about three months ago. I had a very frequent urgency to urinate and very severe pelvic pressure. Urine tests were obviously negative, but the pain wouldn't go away. After a while, I saw a urologist who told me I simply had pelvic muscle dysfunction, or hypertonicity to be more precise. In fact, I couldn't urinate properly, and my symptoms got much worse with stress, fatigue, and the days before and during my menstrual cycle. The only things that relieved the pain were herbal teas and hot baths, and I'm undergoing therapy to manage stress and anxiety, since every time the pain and the pressure gets worse, I have panic attacks and I can’t even leave the house. But anyway, since I've been doing these things, the situation has improved a lot!
To anyone who is going through a similar experience… just want to say that you are not alone!

I have a flight tomorrrow to leave and go abroad for two months and I’m so scared because of having ic

I have been dealing with IC since I was 17..now I am 30 but wasn’t diagnosed until recently. The typical story of doctors telling me I had recurrent utis and prescribing antibiotics even when no nitrates or leukocytes in my urine. I even went to a gynecologist one time just for her to tell me I MUST BE WIPING WRONG and that’s why I have a UTI 24/7. so anyway…for the last 3 weeks I have been in agony and quit my job due to this and mental issues I am dealing with…supposed to start a new job this coming Tueasay because I thought this flare would be long gone by now…but it is not despite all efforts. Even AZO isn’t working for the constant burning anymore. How does anyone deal with going to work while enduring this pain?

I was diagnosed last year but Im struggling and feel like I cant live my life anymore.

I used to love to go for walks in nature but worry about needing the toilet all the time. I used to get in the car and drive and plan holidays, but the thought of that terrifies me. The anxiety is bad. Miss the days of drinking tea and coffee and being carefree 😔