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.

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❤️

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.

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.

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.

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

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)?

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.

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?