So I was talking about this in another post so I wanted to see how common it is and if anyone other than university of Michigan is doing it. It’s called ptns/percutaneous tibial nerve stimulation. It was invented to replace such things as back stimulators for our condition because they discovered this nerve is directly related to the bladder. I won’t describe it here because it involves a needle but if you’re interested, just type ptns into google and it has a feature definition.

I'm trying to find info on risks for bladder installations with things like lidocaine, heparin, DMSO.

If I remember right, I'm pretty I've read that the risk for botox injections in males is like 2/3 chance, though I could be wrong. So wondering if installations carry the same risk. Sources would be appreciated.

I don't want to self-catheterize.

Male mid 30s. This is killing me. I’ve tried elimination diet / IC diet. I’ve tried heavy duty pain meds. I’ve tried suppositories. I’ve had 3 interstem devices implanted (since 2017). I’ve tried hydros (made worse or no difference). I take nightly amitriptaline (mostly to knock me out). I’ve tried Uribel (made me worse); gemtesa; elmiron; myrbetriq; pain meds; nerve meds. Prelief with every meal. Only drink water. Avoid spicy foods. I did 6 months of pelvic floor therapy.

The only thing that seems to temporarily help is heating pad and curling into fetal position.

It’s like this every day.

How can I get sustained relief?? How do you people live with this.

I had a resistant infection after catheter use and have been feeling like I need to pee 24/7 for a week. Has anyone had IC flair after antibiotics? I’ve taken five rounds and infection is finally gone. Doctors gave me overactive bladder medicine I’m about to start but trying to hold onto hope this won’t be a 24/7 problem the rest of my life.

Can anyone give me hope that after being away from abx and replenishing with probiotics I could have a better future with only occasional flairs? 🤦‍♀️

Okay I don’t even know where to start but About a year ago I started down the path of consistent UTI symptoms and no UTI. My doctor raised suspicion of IC sent a referral to a urologist and in the meantime I did some research. I started being a little stricter with my diet avoiding foods that were said to bother IC and it seemed to manage the symptoms pretty well, I’d have occasional flair ups but nothing like it was before. I’m still waiting for my urologist appointment. Now here’s the problem I’m pregnant and around 27 weeks I started feeling some similar symptoms, got tested for a uti - nothing showed up, put on antibiotics anyways as they didn’t want to risk it. A few days later my dipstick test shows protein in my urine (as does the 24 hour test - approx 400). My OB diagnoses me with preeclampsia but isn’t convinced so I’m sent to an internalist, MFM, and nephrologist. I have a full kidney function blood panel, bladder and kidney ultrasound and more urine tests. Everything looks normal and the protein went away. 6 weeks of absolute stress and I’m told it was likely inflammation- no one can say for sure if IC was the possible cause just likely infection. At 35 weeks (today) Ive been dealing with some bladder discomfort, peeing more frequently and a great deal of pressure - but hey I’m super pregnant that’s to be expected. I went for an NST and have another urine sample showing elevated protein, no other pre-e symptoms and blood work looks great in there words. My doctor is closed until Monday and I’m stressed once again. I guess I’m just curious if proteinuria is common for people with IC? At this point everything else has come back normal and I’m just beyond exhausted and confused

Post about how you've been feeling. Rants and nitpicking are welcome!

Tried any new food lately?

So I went on IV antibiotics for a UTI I had, and it made the burning worst, I didn’t even have that much burning prior to the antibiotics. The burning increase with the start of IV antibiotics. Once I was discharged from the hospital (they said I had no more infection). Well I’m having burnin in my urethra and in my vagina and urgency throughout the whole day. It doesn’t feel like a UTI tho but idk where the burning is coming from. TIA for your help.

I have unrelenting intense pelvic pain and urinary frequency. It massively affects my appetite and all I can typically manage is a banana and some crackers. Is this typical with IC?

I had a lumbar ablation a month ago and since then I have had a huge flare that antibiotics hasn’t even phased it. Could this be related to the meds that were injected? I’m miserable yall.

I know the urge is constant but how often are you guys actually going to the bathroom. I am really trying to figure out what in the world is going with me. I have so IC symptoms but I read that you go up to 60 times a day. Is the accurate?

Hi, everyone. Asking for a neighbor who has been in a lot of pain.

The TL;DR is that she’s been experiencing severe pain and symptoms that I /we think are interstitial cystitis. Looking for guidance and ANY help at all. This can feel so hopeless

Edited: Have reviewed the FAQs, lurking for months. May be looking for support and insight in case there’s something I’m just not seeing

Full story:

• Jan 29th:
  • Woke with backache and UTI symptoms.
• Feb 7th:
  • Treated at home for a week with no improvement.
  • Visit to walk-in clinic, urine tests negative for infection.
• Feb 14th:
  • ER visit for suspected kidney stones, diagnosed with UTI, given medication.
  • Symptoms worsen after medication.
• Feb 21st:
  • Doctor visit, no UTI diagnosed, prescribed prednisone.
  • Prednisone provides temporary relief.
• March:
  • Visit to gynecologist, ruled out gynecological issues.
  • Another ER visit, diagnosed with anxiety.
  • Multiple visits to primary care physician, urine cultures negative.
• April:
  • Referred to urologist, prescribed tramadol, oxybutynin, and amitriptyline.
  • Started bladder-friendly diet, gave up caffeine, citrus, etc.
• May 1st:
  • Tried amitriptyline, stopped due to side effects.
  • Started physical therapy, internal exam suggests weak pelvic floor muscles.
• Ongoing:
  • Symptoms fluctuate, some days better than others.
  • Can't wear tight clothing or have intercourse without flare-ups.
• End of June:
  • Follow-up with different urologist, no further action due to medication discontinuation.
• Overall:
  • Struggling emotionally and financially due to ongoing symptoms and medical bills.
  • Seeking advice and hope for recovery.

I can’t pinpoint what foods, drinks, vitamins, etc flare me? I’ve been keeping a detailed journal almost every day for the past month or two and I still can’t figure it out.

Initially I thought it was my probiotic so I switch to fem Dophilus UT-specific one, then I thought it was black tea so I quit drinking that (so hard!! 😫). And I’m still having flares.

Could it be stress? Any tips are appreciated!

I’ve been interested in trying this treatment but am unsure how to get it started. Do I get a referral from my urologist or a primary care doctor?

Does anyone else's bladder get really irritated whenever you have very salty foods? My bladder gets super irritated and it takes it a few days for it to recover.

Hey guys. I'm wondering if anyone else has had a similar experience to me. Every time my period comes the pain and the bladder cramping seem to subside and then a day after it's over it begins to return. Does anyone else notice a reduction of symptoms during their monthly cycle?

I was dxed w IC several years ago and have always struggled with retention but it’s gotten to an extreme and I got discharged from my last urologist for being “too complex” and am struggling to get in fast enough with anyone else. I go days at a time without being able to fully empty or sometimes even pee at all. I am wondering if any of y’all know if there’s a way for me to get self catheters without a prescription or anything? Just in the mean time while I’m trying to find someone willing to actually help.

Azo is one of the only things that helps my symptoms. I try not to take it too often, but definitely end up needing it at least a few times a month. I’m worried my body will become accustomed to it/it will stop being as effective if I continue needing to use it regularly long term. Is this possible?

My urogyn suspects I have IC, but I'm struggling to figure out what causes my flares. How soon after eating the food do you flare?

Hello, I think my whole food multivitamin might be causing me to flare a little but not that much. It only has 100% of the dv for vitamin c from amla fruit and I was wondering if maybe I split the dosage it might help. I tried taking half of it and seemed fine. I don’t know if it’s better to take the whole thing at once or split between multiple times a day…. Maybe too many assaults on the bladder and would make it worse? Or maybe the dosage would be low enough to not cause issues? I’m not sure if anyone has experimented with this.

Hi.. I've been dealing with interstitial Cystitis for almost 2 years now. I've seen my urologist basically every month. We've done bladder stretching, other procedures and bladder instillations.. even botox in my bladder! I've been through almost all the bladder medications (I have been through them all) and none of them are working. I'm starting physiotherapy next month for pelvic floor therapy.. and I just don't understand why this is happening :'( I want my normal life back.. I'm so depressed and struggling with my pain. Nothings working. :(

Im just drained ive had this since 3 months and no formal diagnosis of IC. My symptoms are mainly after I pee and it burns in my pubic bone after will this be forever ? 😫

Should you keep bladder training if you have a UTI?

As title says. Looking for a legit site/place to get Azo here. Thanks!

I live in the UK and soon I’ll be travelling to Florida. I want to keep hydrated while over there but ideally don’t want to be drinking water loads more than I do in UK. I’ve heard people talk about liquid IV to keep you hydrated. Would this be IC safe or cause more problems?

Hi So I had surgery for Endo It was wide spread, however I had none of my bladder. So my gyno doesn’t think it’s causing my bladder issues.

10 years ago I had an investigation for bladder issues and my urologist said my heart rate increased when my bladder was being filled up. Is that a sign of interstitial cytisis? My endo term doesn’t think my endo is causing bladder issues.

I’ve been reading these awful experiences about cystoscopy and I’m terrified; however, everyone I’ve read has done an in office procedure. I’m getting an exploratory lap done and the doctors offered to do a cystoscopy. Is it the same pain or is it better because you are under and therefore more relaxed?

Just need a little vent. R was really depressed when I found out that my appointment got cancelled for Monday the 13th. It's kind of my own fault. I had a lot of stuff going on. my apartment needed to be fumigated twice for bed bugs. All my stuff needed to be packed up in boxes and I was just not going through a really good mental state throughout those few weeks.

I remember calling the urologist just to double-check if there was anything I needed to do before the appointment last week and they had told me I needed to go to a blood lab to send in a urine test. However I had only remembered to do that today which was unfortunate.

Only a few hours later I got a phone call that I missed because I hadn't been sleeping very well and I feel sick I believe to my new medication that my doctor had given me for nerve pain(pregabalin) 200mg a day. Was originally on 25, 50 ,75,150 and now I'm on 200mg. However, I noticed for the past 3 days I've been extremely nauseous and I have not been able to keep food down. I feel really sick, dizzy.

I have headaches. I haven't been able to get a hold of my doctor to let him know and I just assumed that my body would get used to the medication. But I'm really just venting because I'm really depressed on learning that my appointment has been cancelled. I did call and leave a message hoping that they will call me back tomorrow so that I can reschedule. I did tell them that I did send in the urine test today and that it was in the morning and that there was just a lot of stuff going on at my apartment and that I had completely forgotten about it due to stress.

Hi all! 25F here and literally started getting bladder pressure 4 months ago randomly and has not stopped since. Long story short.. after dozens of tests/ hospital admissions/ x2 cystoscopies and biopsies/ specialists appointments, a professor of urology has basically said if nothing is showing up on the tests to account for my bladder inflammation then I probably have IC. I have been on a gluten free and relatively mild diet trying to avoid all acidic foods. And I would say that it has brought the severity of the pressure down by like 20%. Don’t get me wrong tho, the pressure is still very much there 24/7 and preventing me from living my life. The professor suggested that I take lyrica (25mg) twice a day to help with the discomfort/pain. I am a little upset that doctors aren’t doing more like bladder instils or other treatments that don’t require me to take such strong meds at such a young age without any guarantee that it will work. However, I’m just curious about anyone else’s experience with taking lyrica.. are you able to eat anything you’d like without flaring..? Or do you still have to stick to the strict diet? Also, anyone else has just bladder pressure 24/7? Sometimes worse.. sometimes not so bad ?

I was told that I could continue trying for baby while going through my first round of instills for painful bladder syndrome. Since getting pregnant, it seems like my condition has gotten so much worse. I have had frequent utis my entire life, FYI. Since getting pregnant, I am in a constant flare. I have a UTI that was treated 2x with abx. I had to go to the ER at 13 weeks pregnant as I could no longer urinate. Now I have an indwelling catheter, more abx too for the chronic uti. Bladder spasms are causing me to urinate around the catheter onto my pants. My urethra is still so sensitive, it hurts to sit flat.

I go for a cystoscopy next week as they found a mass on my bladder during my first ultrasound. The mass (looked blood filled and round?) had been getting smaller (maybe a weird cyst?). But I am still so scared. I am just here to vent. My urologist assured me it almost definitely is not bladder cancer, but it still could be another cancer or something else.

I cried at my OBs office as they kept saying they've never seen a pt with such conditions and how difficult my pregnancy is. I am praying it gets easier.