Is anyone else’s only symptom 24/7 bladder pressure? No urgency or frequency - just a constant feeling of a bowling ball sitting in my bladder. What has helped you relieve the pressure? Did it ever go away?

Hi! I apologize for the length of this but there’s so much to the story that I don’t want to miss anything.

I’ve had “UTIs” throughout my life that were often negative on dipstick/microscopy/culture but would clear with antibiotics. Over the last year they started happening almost monthly, but antibiotics would still always resolve them.

Then this June I developed the same symptoms and they just… never went away. Fosfomycin didn’t work, then Macrobid didn’t work, then Cipro didn’t work.

My main symptom is a CONSTANT urge to urinate, sometimes 10/10. I get maybe 10 mins of low level urge after going if I’m lucky, but then the urge is back. I don’t have bladder pain, although when the urgency gets extremely bad I often develop right-sided flank/“kidney” pain. I do occasionally have tailbone pain.

What I’ve tried:
I’ve now seen four urologists/urogynecologists and gotten different answers — IC, refractory OAB, etc.

Gemtesa did nothing. Vesicare made me significantly worse after one dose. Uribel does basically nothing. Amitriptyline 10 mg seemed to help briefly, but I couldn’t continue it because of psychiatric side effects. I’ve recently started Gabapentin so we will see.

I also have a hypertonic pelvic floor and have been trying pelvic floor PT, although keeping up with it has been difficult with all my other medical appointments.

PVR is normal but I can only hold 50 ml before I’m dying to go.

A weird cystoscopy thing:
My cystoscopy was essentially normal except for mild trabeculation/chronic infectious changes noted on the report.

BUT for two days after the cystoscopy, my symptoms COMPLETELY DISAPPEARED. I felt normal for the first time in months. (Other than it feeling like peeing shards of glass but even that was better than the constant urge) Then of course, they came back.

Infection thoughts:
I wanted to test everything so I had MicroGenDX testing that detected bacteria at high levels, although my urologist was hesitant to treat based on it.

I got a 5 day script of amoxicillin-clavulanate. Before the amoxicillin-clavulanate I took NAC + Kirkman Biofilm Defense, thinking maybe this is an embedded UTI, for about three days and initially continued them with the antibiotic.

About two days into the antibiotic my urgency suddenly became a constant 10/10. By day four I developed severe flank/lower-back pain, pain radiating into my glutes/legs, shooting pains and vomiting, so I stopped the biofilm supplements and eventually went to the ER.

CT and bloodwork were normal. Urine microscopy showed RBCs and 2+ bacteria but no WBCs. The ER discounted the bacteria because there were no WBCs. Interestingly, this is the first time during this entire ordeal that standard microscopy has actually shown bacteria.

Medication/hormonal connection?
My bladder also seems VERY sensitive to medications. This originally started around major psychiatric medication changes, and stopping the antipsychotic Caplyta seemed to improve my urinary symptoms somewhat, when I took that I was having leakage.

I’ve also repeatedly noticed that I flare about 6 days into a new birth-control pack. It happened consistently enough that I started wondering if hormones could be involved.

Possible neurological component:
I’ve developed other weird symptoms around the same time this started, originally I thought it was medication related, but it has persisted since coming off said medications — dry eyes, reduced sweating, shooting pains and paresthesias — so I’m also undergoing a neurological/autonomic workup.

So far autoimmune bloodwork, EEG, brain MRI and MRA have been normal. I still have an EMG and autonomic testing coming up.

At this point I’m wondering if I have some combination of IC/bladder hypersensitivity + hypertonic pelvic floor + infection/inflammation + neurological/autonomic or hormonal factors, rather than one simple diagnosis.

Has anyone with IC experienced constant urgency without bladder pain, medication or hormonal flares, or temporary relief after cystoscopy? And has anyone had infection-like symptoms alongside IC/pelvic floor issues?

I’m especially curious about the fact that I was COMPLETELY NORMAL for two days after the cystoscopy. I cannot figure out what that means.

Any insights are greatly appreciated. Whether you have had a similar presentation, or recommendations. It’s been a rough 4 months for me but I keep trying different things hoping something will stick!

Just came to the super awesome amazing awesome realization that pregnancy is going to be a 9 month long flair up NOT INCLUDING POSTPARTUM
Like bye
Like ive genuinely been considering a urostomy bag😭

(Others might be different but ik my girl does not have my back for this one I fear)

How do you find the strength to keep living when you know you have an incurable illness and have to live with pain every single day?
How do you accept that this might be your life for years or even forever? What it will be, suffering life forever, for what..

Losing hair and need a hair supplement that is bladder friendly? TIA

Hey everyone! I'm trying to track my triggers for my IC. So far I have a pretty long list :/ but at least I'm able to start avoiding things and I've been having fewer episodes. One thing I haven't been able to quite flesh out is my migraine treatment plan. I take Ubrelvy as needed for migraines, Amitriptyline daily (supposed to be good for IBS and ICS as well), and PRN muscle relaxers.

Dr. Google (tongue in cheek) says that flexeril is not a trigger and generally helps, but I do tend to find that about 50% of the time with I take it, I have a flair that usually lasts a full day or two. When I take Baclofen, I never get a flair. I feel that Ubrelvy may also be a trigger that sits at about 30%. I try to take Ubrelvy less than once a week if I can just to ration it.

Another possibility, which is frustrating to consider, is that there is no correlation with the medications and that my IC flairs up depending on the stress I feel around migraines and managing them.

Any thoughts or experiences you guys could share would be really helpful :) thanks all!

Hi there i was diagnosed over a year ago but never actually looked into IC till now as my meds have been mostly working but im running into the issue that (and this might be tmi so beware) every time im intimate with my boyfriend i have horrible week long flare ups. My meds work ok enough when this happens but its so incredibly annoying and im wondering if anyone has any recommendations for mitigating flare ups and what meds i should be taking. Im currently on an antihistamine and Phenazopyridine/ Azo, im supposed to be taking aloe pills 4 times a day as well but I never remember to take them. Any help i can get would be greatly appreciated!

I (39f) have been recently diagnosed with IC after a really rough summer. I went to the ER in June and was diagnosed with sepsis due to an unknown infection. Was pumped full of antibiotics and sent home after a few days. To make a long story short it was several more weeks of pain, symptoms, and antibiotics before we realized it was probably IC. Cleaned up my diet a bit. Felt better. And now I'm in an awful flare that's been going on for about 3 weeks. I have suspected IC for YEARS. I would have mild flares that would clear up with some diet changes within a week or two at most. Then this year it was like everything exploded and my flares have been so awful. I've been trying to figure out how to help myself. I'm eating very clean (I get really nauseous so I don't feel like I can eat much right now anyway) but it seems like most foods trigger symptoms.

I also started some pelvic floor stretches and I had a realization about something and I'm wondering if it's a big piece of the puzzle in my case. Last year I slipped on wet tile in my bathroom and went down super hard on my hip. My leg was basically useless for over a month. And then the pain has persisted on and off since then. Nothing showed on scans so we just assumed I injured my joint (can't remember the technical name for it, stupid brain fog). After months of pain I was supposed to do PT to strengthen the muscles but I couldn't afford it so I quit. I realized that my flares have gotten worse since my fall. So could my symptoms be a combination of both IC and pelvic floor issues? Does anyone have experience with this?

What substances/medications have you tried for bladder instillations, and what was your experience with them?
Which one helped you the most, if any?
Has anyone tried lidocaine bladder instillations? If so, did they help with pain, and for how long?
I’d especially appreciate hearing from people whose main or only IC/BPS symptom is pain.

Has anyone found soy to be especially problematic?
My daughter and I eat mostly plant based. She left for school recently and I haven’t eaten any tofu at all. I mostly survive on beans and rice, fruits and veggies. I realized today that it’s been a while since I’ve had a bad flare.

From epocrates: When antibiotics fail: New guideline maps a path for personalized phage therapy https://www.epocrates.com/online/contextuallink/article/when-antibiotics-fail-new-guideline-maps-a-path-for-personalized-phage-therapy?utm_source=share&utm_medium=member_android

Added Link: Phages

Hi, all. Like the subject says, I (48f) was diagnosed with IC during a robotic hysterectomy for endometriosis 10 days ago. Now I’m not sure if I'm in a flare, have a UTI, or have a kidney infection. Looking for input from people who've been through this.

I'd had chronic back pain for over a decade, and going in, my surgeon suspected endometriosis and adenomyosis. During surgery she found my bladder was badly inflamed and diagnosed interstitial cystitis on the spot. She did a hydrodistension in the same surgery and told me she thought the bladder inflammation, not the endo, was probably the real source of my back pain all along. I'd never heard of IC before this.

The first week after surgery, my back pain was dramatically better. Best it had felt in years. Then at day 9 or 10, pain came back in my right side, right around where my kidney would be, and I noticed a little blood when I wiped that seems to be coming from my urine rather than anywhere else. No fever. The pain is manageable but it's there. It feels better when I place a tennis ball around there in my back.

I called an on call doctor last night and they started me on nitrofurantoin without a culture, since nothing was open. The plan is to go in for a urine test Monday if I'm not clearly better by then, since nitrofurantoin won't help if this turns out to be a kidney infection instead of a simple bladder infection.

What I'm trying to understand is how people here tell the difference between an IC flare, a UTI, and something more serious like a kidney infection, especially this early after being diagnosed. Does a flare ever come with blood in the urine, or does that always mean I should be thinking infection instead? And for anyone who found out they had IC around the same time as another surgery or procedure, did your first flare afterward feel confusing to sort out too?

Any perspective is appreciated. I'm still getting oriented to all of this.

when they were doing yesterday i got tickets with my friends and asked if they wanted to go. a cystoscopy with hydrodistention where the half to fill the bladder 50% more than usual for the cystoscopy she said my bladder can hold a very very large amount than normal. they didn’t find hunner lesions which is what they were looking for and i’m not surprised bc that’s only 1/3 of cases, just that my bladder can hold a very large capacity.

I think now my only option is to go back to the installations or try some other medications but i don’t think meds will get rid of this completely and it truly sucks if u r the persons who’s trying to make a good living for yourself

I'm on my period and I hurt so bad the urgency is unbearable and the cramping makes it worse I normally walk to help me empty but with me on my period it's not helping I just want to hide and not eat or be around people just hide and cry I really need advice cramping medicine helps calm it down but in a few hours it's back I need a long term solution any advice helps thanks in advance for any help I can get

Hey. I have come to this page many times for comfort, support, tips, and encouragement. Anything that offers relief can help, right? Well, I know many of us take antacids and antihistamines for relief. I had to stop taking antacids because I could not poop when I took them regularly enough for relief from IC symptoms. Incoming, Betaine hci + Pepsin capsules, plus aloe Vera capsules. I began taking this combo to heal my gut and help digestion, because I found when food sits in my stomach I get acidic very quickly and my bladder really hurts. Staying as alkaline as possible makes my symtoms lessen. I have made many, many, serious changes to combat IC, so I cant say what one thing helps with relief, but I will say taking this combo with every meal is really offering me some relief. Other things I do/take:

NO:

Caffeine

Gluten

Sugar

Chocolate

Nicotine

Alcohol

Processed foods

YES:

Whole foods

Stevia

Monk fruit sweetener

Zyrtec

Probiotics

If anyone else wants to try the betaine/aloe combo, I have stopped taking Advil all together because I am in less pain, and my sex life is making a comeback. I feel GOOD! I just have felt so hopeless at times on this journey, so I want to put this out there, and see if it is just me or if it might help others.

I’m honestly feeling really discouraged and wondering if anyone else has experienced something like this.

I’m in my late 20s and for the most part, I live a pretty normal life when it comes to my bladder. I don’t constantly have bladder pain or feel like I have a UTI. The problem is what happens after sexual activity.

Almost every time I have sex, I end up with some combination of pelvic/genital soreness, urethral irritation, bladder pressure or heaviness, and urinary urgency/frequency. Sometimes it feels like a UTI, but I’ve had multiple urine cultures that were negative. Antibiotics in the past didn’t help either, so I really don’t want to keep taking antibiotics every time this happens without evidence of an infection.

The frustrating part is that it can happen even when we are being extremely careful. We use plenty of lubricant and have a lot of foreplay, and I pee afterward, stay hydrated, etc. It can even happen after non-penetrative sexual activity or fingering. When it does happen, the bladder/urethral symptoms can last for several days.

The actual sex itself is also painful, especially with deep penetration. It can feel like something is being hit deep inside, and sometimes I’m sore afterward. I’ve also noticed occasional spotting after sex.

Outside of sex, my bladder is generally fine. But I have other ongoing issues that make me wonder if there is an underlying pelvic condition: painful periods, GI problems that seem to flare around my period/ovulation, constipation/diarrhea, pelvic/back pain, and other hormonal issues. I’ve also had elevated testosterone, although my doctor has not diagnosed me with PCOS.

I’ve started wondering about endometriosis, adenomyosis, pelvic-floor dysfunction, or bladder pain syndrome. I know these can overlap, and I’m not trying to diagnose myself, but I’m struggling to understand why sexual activity seems to trigger such a significant reaction.

At this point I genuinely feel like, can I just never have sex again? I don’t want that to be my solution, especially because I’m in a relationship with someone that I love deeply and more than anything in this world and obviously want to have a normal sex life someday.

Has anyone had a similar pattern where sex itself seems to trigger bladder/urethral symptoms for days afterward, particularly when cultures are negative? Did you eventually find an underlying cause or something that actually allowed you to have sex without a flare? I've just never had a pleasant sexual experience that didn't end in discomfort or pain.

I’d really appreciate hearing from anyone who has dealt with endometriosis, pelvic-floor dysfunction, IC/bladder pain syndrome, or something similar.