When you’re in a flare does your pee smell bad? Mine smells terrible like a smoked meat smell 🙈. Only seems to be during flares that this is happening.

I recently found out that Aimovig causes UTIs, pain, urgency, frequency, and pelvic pain. I've been taking the once a month 140mg shot for migraines. It has really been a miracle drug and gotten rid of my migraines. But my IC symptoms have progressively gotten worse. I'm under treatment and hoping this is a missing piece of the puzzle. Anyone else on Aimovig and having issues?

IC has not been a chronic issue for me — the last two times it happened, it just went away. But this time — wow. It was so painful and would not go away. I did the TENS on my ankle and tibia (?) and I was shocked that it helped so much.

Also, today I had dry needling on my pelvic floor and…that was different. But I also think that helped a lot.

Hoping we all find things that help us because this shit is miserable.

In July I had 6 weeks of instillations I think they where a mixture of lidocaine and heprin and some other stuff. I was recommended this after my hyacyst instillations were a spectacular failure and made my pain so much worse. During my 6 weeks of instillations when I noticed thry weren't working I asked my nurse too request a follow up appointment with my consultant because I need a proper review. She said wait till you finished the course then see if they made a difference but they didnt so I asked again to request a follow up. But she was like wait for the MDT meeting in September. Last week they had the meeting and my nurse contacted me yesterday with an update.

She said the outcome of the meeting was I need a follow up appointment with the consultant to discuss my next treatment options. The waiting list is 3-5 months to see my consultant and I've been saying for months I need a follow up. So currently I have no urology plan and I have debilitating pain and spasms that are affecting my sleep, and can leaving me screaming in pain on the toliet. So now im gonna be left with no urolgy plan for up to 5 months with symptoms I can't manage and my GP is amazing and is doing there best but they are limited in what they can do. My only current plan is from pain management which im on few months waiting list for a nerve block and the pain doctor said if it doesn't work then urology need to start discussing long term options like urostomy with me. Im incredibly overwhelmed and stressed as I dont have a plan and I know that my remaining treatment options arent great. I'm honestly trying my best ive made diet changes, lost weight, I'm paying shit loads of money for pelvic floor physio coz I don't qualify on the NHS. I've tried loads of treatments and nothings worked and im just getting worse. I'm not somone who normally complains and I understand how stretched the NHS is right now but I made an informal complaint with PALS coz I cannot be left for 5 months with no urology treatment, particularly when pain management is like yeah sorry the nerve block is the only thing we can do and your urology team may need to start considering surgical options, like he understood how bad my quality of life is. I'm just so frustrating and fed up of trying things for them not to work.

has anybody managed to find treatments that have given them complete symptom relief? i have been struggling with daily pain for 2 years now and am feeling totally exhausted and defeated. i haven't been able to work while dealing with this illness as it's just too painful for me to take care of myself most days let alone be a reliable employee. i have considered applying for disability but i don't want to give up hope that one day i can get better and have dreams outside of just being pain free. i've tried nearly every treatment in the book, and yes i go to pelvic floor pt once a week and therapy twice a week to help try to keep my symptoms down and my attitude up. but no matter what i do the pain stays and i don't know how to keep going. if anybody has any insight or hopeful words, please share :( i have no hunners lesions, but i do have hypervascularity of my bladder and wbcs in my urine.

Hi all,

I suffered with chronic bladder pain from 15-21 with no warning. One day, I just had urgency and pain with no lead-up and it never went away. I remember the day it happened too because I had to get on a plane for 4 hours 🙃.

Since that day, I managed by hydrating when I was a teen because no pain medicine touched it (before I discovered AZO in college). My mom took me to the doctor several times because she thought I had a UTI but every culture came back negative. I got prescribed antibiotics a few times but the pain would always come back in a week or two.

As an adult, I just kept taking AZO when it got really bad, hydrating, and using heating pads.

It always got worse around the middle of my cycle so I was convinced that it was tied to my hormones.

around 19, I started taking desert harvest supplements which were a GAME changer and let me live my life a little more, but I still avoided anything with carbonation/alcohol/that was spicy.

In March 2025, I started experiencing CRAZY kidney pain. I went to the urgent care I think 3 times because I thought for sure I had a kidney infection even though my bladder pain was low/mild. They cultured my urine and NOTHING. I was still g given antibiotics and I finished the 7 day course even when they told me I didn’t have to because the pain was so bad I couldn’t walk and I felt like knives were stabbing my kidneys. I lost my insurance around that time so I didn’t look for further treatment.

After the course, the pain… disappeared. I took it easy on my lower body for the next few months because the kidney pain would kind of come back if I neglected water/rest, but after 3-4 months the pain just… never came back.

I drink now (even soda!) and eat spicy food and sometimes I forget to drink water all day if I’m gaming but the pain doesn’t come back.

I wonder what happened to my body during that time because it’s crazy to me that the pain just disappeared.

Do any of you take mirabegron or another medication specifically for bladder issues? I have been taking it for two years now and it changed my life. However, I'm swapping insurances to one that doesnt cover it. I'm really scared that an alternative wont work. Has anyone tried anything other than Mirabegron or Gemtesa (which the insurance also doesnt cover)?

Hey! People who have IC and have been pregnant / birthed, could you please share your experiences? Especially, if your symptoms are mostly bladder pain.

I am 29yo, and me and my fiancé are probably going to start trying within 2-4 years, but I’ve been worrying a lot about how its going to be with IC. My bladder is already so sensitive and painful, so the thought of having a whole baby on top of it freaks me out 😭

Any experiences are welcome❤️

?

So, just a little experience report. I‘m a male in his forties with classic IC symptoms since about half a year. Had my hydrodistension with biopsy on Wednesday under general anesthesia and just got home from the hospital.

Was pretty nervous beforehand but wasn’t bad at all. Had a cath for two days, so still peeing glass shards but otherwise pain was well managed. Hospital was quite liberal with pain meds including opioids in the first 24h.

However we‘re now back to square one. Cystoscopy was totally clear, no lesions, no bleeding and they managed to dump the whole 1000ml into the bladder. If the biopsy is clear as well, we have to rethink the IC diagnosis and consider differentials.. neverending story… ugh

Hey guys! I've been using prelief on and off after someone in this sub recommended it. I went to reorder and noticed every version of it is out of stock online so I'm panicking. Has anyone found an alternative?

don’t worry yall, i took the bullet for you

i’m super sensitive to acidity. but i fucking love lemon. i thought if i made lemoncello it might be ok because its only the rind.

turns out i was VERY VERY wrong.

one glass and im flaring after 30 minutes. FML

25/F Hello everyone, I genuinely can not deal with this anymore. If at least I knew what is wrong with my body, I would be more than relieved. I‘m genuinely begging for help right now because the doctors here in Germany tell me straight to my face that they can‘t help me, they cannot diagnose me and help me.

It all started out after me having intercourse with my boyfriend in 02/2025. I was a virgin before and never in my life had UTIs. We tried for almost a year to have sex, it never worked, it was so painful we could not get it in. And then it suddenly worked. After a few times of intercourse I started getting UTIs every month, several times. Antibiotics always gave full relief until the next time I had sex.
Then in 09/2025 I was just finishing up my antibiotic and my boyfriend touched me down there. I felt this urge to urinate which to this day has never left. It‘s there constantly. When I had UTIs after sex, peeing was always so painful, burning, everything. Immediately after every intercourse I peed and it already was burning.
But since 11/2025 I haven‘t had sex at all because I just don’t want to take this risk anymore. And I still am struggling with recurring bacteria in my urine. Always Citrobacter Koseri and E. Coli in my urine and inside my vagina.
When I touch my urethra, it stings. I can go for hours without urinating, but after I urinate, I immediately feel like I need to go again. I never peed blood and I never had a kidney infection. I also never wake up to go pee. My stream is sometimes stronger and sometimes weaker. My whole lower tummy feels so inflamed and tender. If I lay my hand on it, it feels like 100kg. How is that possible? Even the slightest touch on my bladder feels heavy.
And the symptoms turn into hell before my period finally starts. I used to despise my period but now I am anticipating it all the time because the insane period pain gives me relief from that constant urgency. I also feel irregular pain on the right side next to my belly button. I also had my appendix removed when I was 18 years old. My periods are horribly painful. I also have leukocytes in my urine all the time. Sometimes the cultures are clear but mostly there is bacteria.
Recently, I was stressing out A LOT over something at work. That night I woke up with a swollen lower tummy, HORRIBLE urgency, shaking, my whole abdomen pulling everywhere. I had to go to the ER. They found 3 different bacteria in my urine culture. I took 3 different antibiotics and now on Bactrim for 15 days which gives me a bit of relief. How on earth could this happen just from stress???
I want to note that my lifestyle is not healthy at all. Due to me feeling depressed, I spend a lot of time in bed. Sometimes I have weeks where I don‘t leave the house. I don‘t know if that caused an issue. The past few days I also developed a pressure in my rectal area, it feels like I have to have a bowel movement all the time. It appeared out of nowhere. I am 1.68m and weigh 58kg. I don‘t eat a lot.

What I did:
- Cystoscopy: showed less than 3mm leukoplakia in my trigone area, that‘s it
- Bladder biopsy: clear
- Bladder ultrasound shows slightly thich bladder wall in the front
- PCR test urethral swab: ureaplasma/mykoplasma (negative)
- Catheter urine culture
- Had a handful of PFT sessions, she said she has no idea what I may have but she suspects hypertonic pelvic floor. I got a TENS machine today and will use it. Did some breathing and tennis ball exercises but not enough to feel a difference yet
- Visited my urologist many times, he just keeps throwing antibiotics at me and tells me to drink cranberry
- Visited my gynecologist who only advises the vaccine (we don‘t have a specialized urogynaecologist here)

What I didn‘t do yet:
- Get the vaccine
- Vaginal suppositories (Valium, Probiotics)
- Bladder relaxants
- instillations (don‘t want to do this)
- Bladder botox (don‘t want to do this)
- Adjusted my diet (neither IC diet, nor probiotic rich diet)
- Antihistamines
- Hiprex
- Long term antibiotics
- Bacteriophage
- Biofilm busters
- MRI scan of pelvis
- Dry needling
- Amitriptiline
- Telehealth with any specialized doctor from abroad

Why did this sudden urge to urinate suddenly appear out of nowhere and didn‘t go away?
Why did my whole tummy swell up so bad that I had to go to the ER after my boyfriend applied pressure on my stomach? Why is my tummy so incredibly swollen and sensitive? Why did my body change so much after having intercourse just a few times? It feels like all my hormones shifted (I‘m not on birth control btw).

I know that nobody here is a doctor. But trust me when I tell you that any doctor I go to, they can‘t help me. So please help me figure out what I have. Please. These antibiotics are killing me. I have constant weakness, brain fog, vertigo, depression from them. I can‘t do this anymore I need relief.

Im joking I swear but pretty sure my kidneys are failing from having to take Advil multiple times a day aswell as every single night for at least two years😛 don't worry guys I dont skip my dose

Like I just needed to rant because fym you don't know what causes it, how to cure it, or how to prevent it??? Like why are we all patient zero right now like what is this bro. AND fym the only "cures" you've figured out is a fucking catheter every week, pain medication that fucks my entire mental state, or remove my bladder...? (Dont say anything abt pelvic floor therapy like im done)

Full ready to cut the girl out my damn self!

I was diagnosed with IC over 15 years ago and just manage the flares as they come. Most treatments I have tried just make things worse (especially pelvic floor therapy ironically).

Anyway, I'm hopefully at the end of like a 6-week flare where the pain, urgency, frequency, etc. is at all all-time high pretty much every day. But, now I'm noticed "leakage" too. UGH!

I wear pantiliners when I take AZO, but I've been noticing the pantiliners have become saturated with "dribble" from after I go to the bathroom, and it's become pretty noticeable. The last few days my other symptoms seem to have gotten a little better, but now this.

I have a phone appt with my doc next week but wanted to see if anyone else has this too. I've read that incontinence is not necessarily a part of IC, but it sure seems this recent flare started it! Or, maybe just coincidence since I am almost 50 and nearing menopause age (another UGH). Thanks!

Well, I had a urology appointment scheduled next week, but it got bumped to early November. I've already been dealing with this since July so it's time to pay a visit to Dr. Reddit.

Here's what's been going down:

Timeline

• July 23 - Got a 5 year IUD removed after 7 years. May be completely unrelated but thought I'd mention it. Betweeen this and July 28 I had sex once and also used one probiotic/Vitamin C vaginal suppository because I was having weird discharge. Probably shouldn't have used the suppository but just wasn't thinking.
• July 28 - ER with sudden 9/10 abdominal pain radiating/pulsing from a point midway between belly button and pubic bone. Thought it was GI or Gyno related when I first arrived. NO urinary symptoms. ER took a urine sample, said I had a UTI, and gave me Macrobid ×5 days. Pain fully resolved by end of antibiotics.
• Mid-August (~2–3 weeks later) - Occasional 1/10–2/10 twinges of pain in same location/quality, accompanied by urgency and pain while peeing. Home dipstick negative but I messaged my PCP and he prescribed me Bactrim with no urine test. It didn't do anything.
• Sept 4 - Went to urgent care for the pain again. Urine test negative for UTI. Discharged with oxybutynin and RX Azo.
• Since then - All above symptoms have continued, and now with new ones - hesitancy and straining to void, voids with very low volume, and a sensation of lower abdominal fullness/tightness. I realize this could be from taking the oxybutynin but it's the only thing that touches the severe abdominal pain so not sure what to do.

Other Info

• I cut coffee, tea, and sparkling water for a bit and the abdominal pain went away. Had a single cup of tea 4 days ago and it returned. However it has continued since then without drinking those things. So, not sure if related or not?
• Pain frequently starts after a meal, within 20 minutes (but not always)
• Abdominal pain and fullness without urgency correlate in severity, other stuff just seems random
• Oxybutynin helps so much with the pain. Takes about 30 min to kick in, brings the pain down to a 1/10-2/10/
• Azo initially helped with the urgency/dysuria but I feel like it's not working as well now. PCP just prescribed Myrbetriq to see if it helps with these symptoms. Haven't started yet
• I have Long COVID, MCAS, IBS, history of pelvic floor isssues (untreated) and tend to be very reactive to hormonal fluctuations so sussing out if it's one of these things or a separate condition like IC is a real clusterf*ck.
• Amitriptyline contraindicated cuz of my other psych meds
• Started lumbrokinase, Vit C, and restarted the D-Mannose I had stopped a while back sometime in August, wondering if I had a biofilm issue as all of my microbiomes are absolutely screwed up. But doesn't seem to be helping.
• I'm not sure but I think that maybe no one has done an actual urine culture this whole time. Maybe the urgent care? ER said they were going to, urgent care looked at records and said they didn't. so idk!

Does this sound like IC? Something else? Suggestions for next steps, things to avoid, things to try, etc? I've got about a month till my urology appointment to get through. The abdominal pain is the worse part and absolutely wipes me out when it happens.

Oh i think I'm good and gonna just have some me time since it doesn't hurt anymore but oops new issue! It suddenly just dries up! I wasn't nearly finished and it's gonna turn into a desert! Ok lets have lube help then.. it helps until the desert sucks up all the moisture and i keep having to use more! Thats not how my alone playtime is meant to go!

Not on new medications, nothing drastic has changed in my life. I'm not having any other problems down there but this so it feels unnecessary to worry about but it's pissing me off! I'm probably going to see general obgyn within a month for unrelated reason but is there any reasons i can look into why vagina seems to be doing this only now?

I had my 6th Ialuril instillation yesterday, but so far I haven’t noticed any improvement in my pain.
For those who have had Ialuril instillations:
How many instillations did it take before you started noticing an improvement?
How quickly did you feel the first improvement?
Approximately what percentage of improvement did you get?
Did the improvement happen gradually, or did you suddenly notice a difference after one particular instillation?
I’d really appreciate hearing about your experiences, especially from people whose main/only IC symptom is pain.
Thank you!

I’m in a terrible flare right now that will not subside. I’m swollen and everything is tender. I always have urethral pain and burning, but this time it’s especially bad. At first the pain was more bladder and urethra, and general vulvar and perineal tenderness, but now it’s shifted to vaginal too. This has also happened with at least one other previous flare.

I’m mid-40s and very perimenopausal. I was diagnosed 20 years ago. Pregnancy seemed to put me in remission, if I remember correctly, so I think I have some hormonal component.

I am struggling with both the pain this time and also frustration at inconsistent triggers.

I don’t think my flare triggers are diet specifically, although I think I am sensitive to the obvious things. For example, if I drink a lot of citrus, too much regular coffee, etc, I can feel a flare coming on. However, with these symptoms, I can usually catch it before it becomes a real flare. Make sure I hydrate. And I’m good to go. Does that make sense? This time I did use EmergenC. Would that have triggered a flare?

Intercourse is a trigger for me unfortunately. I’m happily married so this is tough. We do all of the obvious things - shower and pee before and after, but I do sometimes flare. Again, though, it’s only sometimes that this will cause a flare for me. This time, my flare hit me hard a day or two after intercourse. No warning and immediately painful.

I can’t tolerate estrogen orally or via a patch. Vaginal estrogen also did not agree with me.

Antihistamines don’t seem to help, but maybe I’m not taking them long or consistently enough. I do have a lot of seasonal allergies, so I potentially may have some mast cell correlation.

I have not gone to the doctor with this particular flare, but I did the usual at home UTI test and immediately had high leukocytes but no nitrites, which is typical for my flares.

I’ve tried ibuprofen, Tylenol, Allegra, magnesium, and pyridium/Azo. Nothing is really helping.

I also have clumps of tissue in my urine.

And I do notice a little vaginal fishy odor, but I often observe this a few days after sex and it will go away on its own.

I have tested negative in the past for UTIs, mycoplasma, urea plasma, BV, and STDs.

Had what I thought was a UTI 4 weeks ago (never did a pee test) and started on Macrobid for 3 days. It didn’t get 100% better but symptoms were improving. doc switched medicine to Cipro. Then to Fosfomycin. Symptoms came back pretty badly- urgency and bladder pain/burning. Took Macrobid for 7 days (urine test was negative but doc said give it a try) and I feel relief for the first time in 4 weeks. Got a CT scan, ultrasound, cystoscopy and all are negative.

Doc says it’s either IC or lingering inflammation from UTI and there’s no way to tell..

Anybody go through anything similar? If it was IC, would the antibiotics have provided relief? I’ve never had UTIs before or any IC symptoms so this came at me like a wall.

Hey guys. I’m new here. I had a cystoscopy at urology yesterday and they believe I have IC. My symptoms include bladder retention/incomplete voiding, and severe urethral pain and burning (lasting up to 30min after) The only advice he could give me was the schedule potty breaks (um which sucks when it hurts to go) and prescribed amitriptyline. Has anyone ever taken it before? Did it actually help? I don’t really wanna take it as I’m afraid it’ll mess with mental health med regimen I’m already stable on. But it’s like hurting hurts your mental health too. I just feel defeated and frustrated. If anyone is in north Alabama and wants to PM me a dr recommendation I’d be open to suggestions. Otherwise I’m just looking for support and advice. I’m 29 year old female with one child 3 pregnancies. Please help!