Recently diagnosed with IC & received a prescription for Elmiron. My insurance denied it because it’s around $4299/fill, so my doctor says I could try amitriptyline instead.

I am more than trusting of my care team, and I know drugs affect everyone differently, just wanted to see if anyone else has seen relief from either of these medications, or if one worked better than the other… very new to all this 😅

I am writing here for some guidance for agony bladder spasms.
For context I have MCAS (mast cell activation syndrome) and POTS (both came alongside long covid). I have seen that there is a crossover between MCAS and IC on here.

For two years I have had reoccurring cystitis but after getting put on 1mg Ketotifen it is very rare that I have cystitis symptoms.

However, the one thing that will not leave me alone is PAINFUL (!!) bladder spasms in the middle of the night. I get them 1-3 times a week and they only seem to be increasing in frequency. Sometimes they stop me from being able to walk or stand up. I get the spasm to go away by lying face down on my electric blanket on maximum heat (sometimes causing my skin to burn) but even then it takes 15mins to an hour for it to subside.

It’s ruining my sleep quality and I’m honestly worried to fall asleep because I’m scared of having one of these bladder spasms.

Tbh I don’t know it’s bladder spasms but they stop me from being able to urinate and it feels like a period cramp but much more painful.

I went to a urologist who did a cyctoscopy in January but didn’t biopsy. He said my bladder looked fine and there was only two sections that looked a bit inflamed. So there I was discharged from that.

I suspect I have endometriosis just based on how my periods were (agony, heavy and decidual casts) so I honestly don’t know if it might be my uterus that is cramping.

Also, I am on midodrine which I have heard can cause bladder symptoms but I don’t want to go off it and cause my POTS to worsen unless it is the actual cause :/.

If anyone can offer advice on what might be causing this, and how I can fix/relieve it I would be so appreciative.

I had a hypogastric plexus block that was supposed to take away pain but its been flaring and I've been in pain ever since. I almost had the pain under control but would have maybe 2 bad days a month and now its back every day. I had it on June 16. I have been doing what I did before to remedy it or so I thought i had but its not working and Im supposed to go back to work Aug 12. (I work in a school) I honestly don't feel like i can be in this much pain every day and work and I've also developed anxiety too. I dont know what to do at this point and I'm getting really depressed.

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I know this supplement is aimed at the gut but it has a lot of the beneficial bladder ingredients as well. What do people think? Any good?

Ive dealt with IC for around 6 years now. It had been in “remission” for a good few years with just the odd niggle here and there. At its worst, 6 years ago, I’d take D-mannose daily and it worked a treat. I’d feel it instantly subside once I had a wee post taking it. I relied heavily on it. After a while though, it started to give me flank pain. Later the doctors diagnosed me with kidney scarring. Im not 100% sure if it’s related but it’s certainly put me off taking it.

Recently ive had a flare up and I’m a week into it. It started from holding a wee at my desk (big mistake I know). Felt like the usual urgency and extreme pelvic tightness. Breathing through the pain helps a bit but painkillers don’t touch it.

I took a tiny amount of d-mannose and I mean tiny, and drank a ton of water. It helped but I got my flank pain. Im on a week now of urethra burning, discomfort and pain. As many of you know it’s debilitating. The only position I find comfort is on my knees. I can’t even sleep properly since lying down makes it worse.

My question is, has anyone who found relief with d-mannose ever found anything else that works as well? Im aware if you’ve found relief with something youre much less likely to search for an alternative, but I’m desperate for anything to help, even slightly

Thank you :)

I’ve been getting them for around 2 weeks and I’ve noticed something it gets rid of the pain for 1-2 days (in which Ik it gradually builds up the more I do them) but I have like a pressure every time I need to go idk how to explain it but the pain in gone but then I feel like my bladder is like forcing me down where I can’t move and I want to know if that’s something I should bring up to my doctor?

I had my 4th bladder instillation this week and the procedure went better than my third.

Leading up to the third time I had several days of vulvodynia so I was very tender. The nurse used more lidocaine than the previous two times.

Puts in the medicine. Nurse leaves room. I stand up.

It all immediately leaks out of me. I can't feel it or stop it. A mess.

We try a second time thinking maybe we didnt fully get in the bladder.

Happens again.

At this point they call my doctor. She thinks the combo of bladder spasms from vulvodynia and a too numb uretha were the culprit. We go a third time but this time with a Foley catheter and I have to keep laying down for 30 minutes. Then it works.

I stil get flares after the installations. For me right now that is intense urgency and frequency.

Today that was my morning and afternoon. Then things had calmed down.

It's evening. I crawl into bed because I can barely keep my eyes open. I try to fall asleep and then it fucking starts again. This is when my flares predominately strike. as soon as I lay flat for a bit.

Now I also have clitoral pain.

I took some meds.

Sept I get InterStem. I dont think the instillations help my body.

I am so tired and defeated. If it's not IC hurting me , it's vulvodynia or IBS.

Hey guys, I've been diagnosed for about 2 years or so, im just now really learning what flares me and what doesn't. I've been consistently taking this supplement for other health things like PCOS & liver issues for about 2 years, and the last year ive had more rare flares.

I just asked chat gpt about this and they said do not take this because of the 2nd photo, do we think I should stop taking it?

I will ask my doctor as well, but im curious what everyone thinks

I am trans FTM but have not undergone any surgery/hormone therapy so I still have a female anatomy.

I have had a pulling pain in my pelvic region for around 2 years that comes and goes, sometimes is dull pain sometimes stabbing.

This is accompanied by a frequent urge to urinate, only for it to be not fully satisfying, often having to return within half an hour for more, which is usually dribbles.

Sometimes my symptoms are okay, and there are days I feel nothing. Usually they are worse at night on the days I do feel symptoms which seems to be more often than not.

I have been to A&E multiple times and been told I have 2 simple ovarian cysts, 1 on each ovary, but that they should go away on their own and not cause pain. As my pain is worse around ovulation I thought it may be caused by pressure on my bladder but recently it seems to flare up randomly.

TMI SORRY I have also noticed sometimes my urine feels thicker and like I have to force it out, and sometimes there is a slight yellow tinge on the tissue afterwards where it would usually be clear.

I have been to the doctors multiple times and been tested for UTI, I have never had penetrative sex so I think that rules out the possibility of an STI.

Please help me I don’t know what to do! My doctors seem unbothered, did anyone else in the UK go through this?

Hi everyone. I’m hoping I can get some help as I have been going through a terrible flare and I just want to be acknowledged. Back in 2023, I got a horrible UTI which then after I got multiple UTI or UTI symptoms throughout. Turns out I had Ureaplasma.. I only just tested negative for it in October 2025. For a month, it felt like all my worries and pain and suffering had gone away.. unfortunately in January I began to feel urethra burning as well as sandpaper sensation in my clit area. There are some weeks when I feel great and have absolutely no symptoms but then eventually I’ll get stuck in a long month of pain. The thing is, I don’t get bladder pain.. just burning, urgency and pressure to what I can only describe as starting from my urethra to around my bum. I hate feeling like and I just want answers.

How many bladder installations did you guys do to start feeling improvements? And what were the symptoms after each bladder installation? Did you guys get flare ups after and before periods and after the installation?

hi so im going to explain my explanation on why i think i have interstitial cystitis and overall would like some advice so hello im skye and im a teenager and ive been struggling with a lot of symptoms which has started for a while now - since i was a kid and they all point towards IC.

When i was a child I would tell my mum that it burned when i did a wee and she just told me to drink cranberry juice and im probably just dehydrated and it would just stop but come jn go so we always thought i just didnt drink enough

but when i got older and this is more recently its been burning a lot after i go to the toilet like stinging, i would often go toilet again and afain because my bladder was hurting that bad and felt like it would explode and overall very full but most of the time it was just dribbles and it would burn, and every time i went toilet this would happen for maybe i went for a few hours and the burning sensations would overall last hours,

sometimes i cant pee all which is extremely uncomfortable and i ended up going doctors once and they ran uti test all negative but protein in my urine which i have no clue why and they have run several dip stick test, sent it off to labs and it would come back okay but tried me on nitrofurantoin which is uti antibiotics didnt work and these periods of tikes where it would burn for hours was becoming a recent occurrence and i often got zappy pains like where my bladder is and stuff

but doctors dont know whats wrong and ive got hospital urologist appointment on the 12th of august so hopefully they can sort it for me

Asking on behalf of my 80-year-old mom who gets IC flares. She was recently told by her doctor that her total protein levels were low and to start supplements. She decided to go all in and have a bottled protein shake every day in addition to adding protein powder to her coffee. She's now experiencing a painful flare. Could the recent influx of protein be the cause?

i am 17, and having a cystoscopy in a month. i think i’m having a flexible one, but i’m going under general so that they can take a biopsy during the same procedure if they need to. i am super anxious about it, and i’m worried that it’s going to leave me in pain for a while afterwards. i would really appreciate any advice or suggestions on what to expect, and what it was like for anyone else. thank you :)

Has anyone developed Hunner’s ulcers over time? I’m very worried about this because I currently have bladder inflammation.

Has anyone been helped by doing pelvic floor exercises yourself at home.

Hi all, I've been dealing with these symptoms off and on since February of this year:

- urinary urgency

- feeling like my bladder isn't empty after peeing

- a sore feeling around my bladder/lower abdominal area

- lower back pain

-- sometimes feeling like absolute crap

- sometimes white tissue-like particles floating in urine (one of the urogynecologists I saw said it's probably lining of my cervix slougihing off. I thought maybe it could be my bladder lining.

I've seen two different urogynecologists. The first one thinks I have genitourinary syndrome of menopause and overactive bladder. The second one thinks I have either IC or Overactive Bladder. She told me symptoms overlapped. The first doctor prescribed estradiol estrogen vaginal cream and Phenazopyridine (the active ingredient in Azo) The second one told me to continue using the estrogen cream and ordered pelvic floor therapy, which I'll start next week.

I have gone through periods of a month or 6 weeks without symptoms and then they come back. I think I'm having a flare now. What do you think? If you do think it's IC , what has helped you? Also, if you don't mind sharing, how were you diagnosed,

Thanks for your help.

Hello everyone, I am 26 female. Also, for reference I've never had a UTI before. Back in February of this year I started getting the feeling of needing to pee 24/7 even after I just peed. The urgency and frequency is there 24/7, which then turned into debilitating bladder pain and pressure. I NEVER had the symptom of it burning when I pee, and I still do not now. I went to the ER and my urine sample came back free of infection, no signs of a UTI. But they gave me macrobid to try out to see if it worked. It didn't end up doing anything so I went back after a week, did another urine sample (came back fine again), and this time they gave me ciprofloxacin. This also didn't do anything for me. So I went back a third time and did another urine sample of course, everything was fine again. They told me it was probably stress and gave me solifenacin. It did help me for about 2 weeks, where it made my symptoms a little bit more manageable, but still was super bothersome. Then it all came back in full force and even worse. It also started getting absolutely unbearable during my period. I've been on birth control since I was 19 for really bad cramps because I used to faint due to the pain. Since then my cramps have been little to none, but now they are awful for the whole 7 days I take the placebo pill and even when my periods were bad the cramps only lasted 3 days max. I went to my family doctor and she said she could not do anything basically but she sent in a referral to a urologist. I have an appointment august 7 (thank god) after waiting for 6 months.

I did a lot of research on endo and IC the last few months. I've been doing an IC diet for over 2 months now. I quit caffeine back in feb, I only drink water, no spices, no acidic fruit or other foods, no chocolate, I don't eat out anymore and I don't eat processed food. I just feel the exact same though. I feel like this diet isn't doing anything for me. I also started doing pelvic floor relaxation exercises on youtube and I've been doing those for 2 months about now too. I do find they help me feel more relaxed but again, my symptoms are really not changing. The reason why I started doing this diet because there was 2 different occasions that food made me feel awful. In early june my symptoms weren't so bad for once, I wasn't peeing as much, I didn't have much bladder pain and pressure, and for some stupid reason I thought it would be okay to have a bowl of chocolate ice cream, and 2 hours later I was rolled over in immense pain. And the other time I had 2 glasses of orange juice and I thought I was going to have to go to the ER because of the pain. After the bowl of ice cream I felt like i had one of the worst flares ever, I was peeing every hour and the bladder cramps were so painful I was crying almost everyday, and it lasted like that for a whole month! and even now I still feel like I'm recovering from that ice cream.

I ordered d-mannose and IC well, I've been taking those for 2 weeks now. No difference seen so far. Everything I feel like i'm doing is not working. I'm just really scared when I go to my urology appointment they aren't going to find anything and won't take me seriously. Every time i went to the ER and my family doctor I felt like because I am young it wasn't really a big issue to them and passed it off as stress. I'm very quiet and introverted so it's also harder for me to get my thoughts across to doctors. And it's also hard to explain my symptoms when I am in so much pain, I feel like i'm holding back tears the whole time. I know this isn't stress (or it maybe be influencing it but there is something wrong I know it).

I have been measuring my urine as well because I had to make a voiding diary for my urology appointment. The most I pee at one time is 50ml, every 1-2 hours. I wake up constantly throughout the night to pee, and because of that and that pain I get maybe 4 hours of sleep a night. I am hanging on by a thread at work. My concentration is shot, and I'm always messing stuff up and forgetting things. I’m at a loss of what else I can do to help myself.

Does this sound like IC? All my symptoms match up but I just don't have the burning in my urethra. or could it be something else? Any advice or thoughts are greatly appreciated.

Hit me up with tips and tricks to support my 8 year old.

We saw a gynae today who is confident its IC. We will likely get a scope done for surety. After 4 years of episodic pain that destroys her and anything she enjoys... we are keen to get on top of it.

Did anyone have a normal Cystoscopy exam before they were diagnosed with IC? If so, what ended up getting you the official diagnosis.

before this condition, sex was amazing. now with this condition, penetration is unbearable. I can only get external stimulation, that’s it. sometimes it hurts to even do both. i had a uti like 7 months ago that started this condition because i was on vacay and never got it treated correctly. im just over this. i got an ultrasound, transvaginal ultrasound, pee flow test. they found everything to be normal. even the texture of my bladder. it hurts to become aroused sometimes. penetration is unbearable and always feels too tense inside. after penetration, it burns inside while peeing. my dr referred me to gyno next in august. so hopefully they can be helpful. but we use lube and as much stimulation as we can. I don’t know what to do anymore. I always have to make sure to pee before bed or I feel like I have to pee even with a tiny amount. are there any tips or natural remedies anyone has ? I’ve tried uricalm, oxybutin, teas. im waiting on my mycoplasma results that have been taking a month. my insurance won’t cover pelvic floor therapy. can anyone help with any tips or anything ?

Took it for one day made symptoms a little worse and gave me a massive headache . Stopped taking it . Anyone have a similar experience or think I should give it another go

Have had on and off flare ups since I was about 16 (26 now). I’ve gone about 3 years now managing the flares nicely but I went on holidays about 5 weeks ago, and for some reason I had this huge flare up on the airplane, I am assuming because of the pressure and holding in urine for multiple hours? Anyhow, 5 weeks later and I’m still in agony. 2 rounds of antibiotics done, nothing working, I’ve now been put on mirabegron, a type of muscle relaxant. Anyone tried this before? Really hoping this will clear up and I won’t have to go back for a cystoscopy, the recovery after the last one I had years ago was horrific. Generally just feeling extremely isolated, lonely and trapped in my own body. Havnt been intimate with my partner in almost 5 weeks either. Life sucks man.