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.

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

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

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.

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.

Hi! I’m diagnosed with IC but I don’t think it’s as severe as some people in here. And it’s gotten way better after Amitriptyline. But, there’s still some troubles. I get up 3-5 times every night to go pee. And I think it’s because I’m a light sleeper, so my partner wakes me up on accident. Then, when i wake up, I can’t just go to sleep. I HAVE to pee or I can’t relax, even if there’s barely anything. And sometimes in the day I have to pee 2-3 times in a row to really feel empty. And when I get a migraine obviously I have to drink a lot of water and when it’s hot but then I’m just peeing. All the time! But somehow I’m still grateful that I’m not in debilitating pain. Though I worry all the time that it will get worse. But I still don’t know if my condition ‘counts’ because it doesn’t seem too bad. Maybe it is and I just don’t know what normal feels like. But I dunno, it is what it is. Thanks for reading.

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 ?

Hi everyone! 👋

I’m new here and honestly hoping to find some support from people who may have gone through something similar.

I’m not officially diagnosed with interstitial cystitis, but my urologist mentioned it today as a possibility, and I’d love to hear if anyone’s journey sounded like mine.

About 5 weeks ago, I developed what I thought was a typical UTI. My symptoms were:

-Burning with urination
-Constant urgency and frequency
-Bladder pressure
-Feeling like I had to pee all the time

Urgent care initially did a urine dip that looked normal, but they sent a culture anyway. The culture came back positive for Klebsiella aerogenes, so I definitely had a bacterial UTI.
I was originally prescribed Macrobid, but once the culture came back it showed the bacteria was resistant to Macrobid, so I was switched to ciprofloxacin, which I completed. The burning pain gradually resolved, but the urgency and frequency never completely went away.
Since then, I’ve had multiple repeat urinalyses, and every one has looked normal. No signs of infection. My OB even put me on Bactrim just to make sure. My urine today at the urologist also looked completely normal, but I still have symptoms.

Right now my biggest issues are:

-Constant urinary frequency
-Feeling like I have to pee even when my bladder isn’t full
-Sometimes I have a completely normal, strong stream.
Other times I have such intense urgency that I literally run to the bathroom thinking I’m going to pee myself… and then almost nothing comes out.
-Sometimes I feel like my pelvic muscles tighten up at the same time.

I wake up between 1–3 a.m. to pee almost every night. If I try to ignore it, my bladder becomes uncomfortable, especially when I roll onto my left side. I used to easily drink over a gallon of water a day. Now I struggle to drink even 40 oz because drinking makes me feel like I constantly need to urinate. Thankfully, the burning pain is gone. It’s mostly the urgency, frequency, and bladder sensitivity now.

Today, my urologist said:

My urine looked good.
She’s sending additional urine testing to make sure there’s not some underlying infection that hasn’t been identified.
She ordered a CT scan primarily to rule out kidney stones and evaluate my urinary tract. She said interstitial cystitis is a possibility, but she is not diagnosing me yet because she wants to rule other things out first.

In the meantime, she wants me to:

Increase my water intake.
Start D-mannose.
Start aloe vera.
Switch from regular lubricant to organic virgin coconut oil during intimacy to reduce irritation.

Emotionally, this whole experience has been exhausting. I honestly thought once the infection was treated everything would go back to normal, and it’s been frustrating to have normal urine tests while still feeling like my bladder is running my life.

Has anyone else had a confirmed bacterial UTI that seemed to trigger ongoing bladder symptoms or eventually led to an IC diagnosis? Or did it end up being something else entirely (pelvic floor dysfunction, overactive bladder, etc.)?

I’d really appreciate hearing your experiences and/or any advice you have.

If you’ve made it this far, thank you for reading. ❤️

I have tried gabapaentin 900 mg hasn’t helped much tramadol 50 mg has been most effective but my doctor wants to take me off because it’s a opioid, does amitriptlyne help with urgency and pain or painful urgency that’s my main issue I have hypersensitive to any urine that fills my bladder I even got an interstim but it hasn’t helped I’m extremely food sensitive though and managing diet has been helpful to not get worse but baseline is still pretty bad the tramadol has been the best again they don’t wanna give it to me so I wanna try Amitriptlyne I know side effect are bad I took 10 mg and for a few days but didn’t seem to help much.

I thoroughly enjoyed myself this past weekend with oxalates, citrus, and wine. Now I’ve got pain, pressure, and urgency. Just wondered how long the flares from being bad usually last for anybody with this issue? I’m new to this and realize I need to make better choices 😤

So I’m struggling adjusting to the new diet after getting diagnosed. Does anyone plan for “cheat meals”? Or is that a big no-no from doctors? How do you plan/make up for one? Yesterday I had chinese food (not even a full meal), and I’m paying for it today. However, my period starts soon so I’m not sure if it’s related or maybe just threw me over the edge due to timing. Anyway, after the diagnosis I realized quickly that most of my diet consisted of foods that contained tomatoes and/or vinegars. Dr. Pepper is also a battle. I’ve never been a “healthy” eater since I’m so picky about tastes and textures, so adjusting to this feels very drastic. I’m seeing an endo specialist next month to figure out some other period related issues and from my understanding that cuts out even more foods that I’ve been relying on to get through the IC diet transition😅 The only immediate “treatment” option my dr suggested was to take Azos during my period and before sex. Is this the same for cheat meals/days?

Fui diagnosticada com Ci mas não fiz citoscopia.

Meu sintoma é ardência todos os dias.

Já fiz exames de urodinâmica, painel dsts , exames de urina e exames hormonais, ultrassom.

E por último ressonância que só mostrou adenomiose.

Já tentei uso de amtriptilina por seis meses não melhora , hidroxizina, e pregabalina nada tira esse sintoma.

Queria muito ajuda um ano nesse sofrimento.

Só tive um mês sem sentir ardência com com início do dianogeste mas voltou de novo .

Não sei o que fazer, meu médico me sugeriu citoscopia com hidro distensão.

Mas acho tão invasivo além do fato de não ter nunca feito citoscopia.

Mas não aguento mais sentir isso todos os dias, tá acabando com a minha vida.

Im not diagnosed with IC or anything i just dont know where else to put this type of post in.

Ive been dealing with uti symptoms (burning during urination from time to time, bladder pain, frequency etc the whole ordeal) for months if not more??? And ever since March ive been terrified of sepsis from a potential uti that I never knew i had til that time yk, and since then bc of that fear ive been nonstop doing culture after culture after culture, ive prolly done like 20 cultures over the past 5 months and NONE ever grew ANYTHING no bacteria no flora no nothing its all completely sterile no matter how bad the uti symptoms are. And this honestly made me feel so insane and at this point I really have no idea how to know if I have a uti or not??? Again id literally have EVERY SINGLE symptom for a uti and it somehow turns out to not be one. If anybody else struggles with this, do you guys have any advice on how to know? I cant beg my gp for cultures anymore because shes so tired of me coming in with uti symptoms and then cultures showing no uti and she genuinely believes im lying about my symptoms so I dont have any choice but to just assume I dont have a uti even when I have all the symptoms 😭

Hi all. I just got diagnosed with this horrible condition. My main symptoms are burning that lasts for so long and frequency. I would love any tips and tricks to stop the burning!! my symptoms seem to flare from fine to bad. One day I’ll have no burning then the next I do. I’m not sure yet if certain foods or drinks trigger symptoms I’m still learning. Would love any advice or support as I am struggling with this as I already have pcos too.

first question, how bad is the procedure pain and post-procedure pain if you're a male and its done without general anesthesia.

My pain isn't like catastrophic catastrophic (maybe from a 3-6 out of 10).

Tried basically everything and every medicine. I can't be very active at all in life or it will flare up. working heavy hours or stress flares. travel. I'm opioid dependent because of IC.

So it's pretty bad on paper even though this life just seems so normal to me now. Suicidal ideation comes up now and again.

I haven't had like insane crippling pain in many years.

The medical literature around botox sounds pretty good for my particular symptoms and complaints.

Should I go for it? I'm so reluctant for invasive proedures but when you read the above my life is pretty objectively bad and I should go for it right?

I just don't want it to make it worse is my biggest fear.

So I went to the dr today and to std tested because it was burning when I pee and had discharge well they said it was a uti and gave me some pills that didn’t work so now I’m thinking I might need to see a urologist

for a while now(multiple years) I have had this pain that goes from my belly button all the way down to my bladder. usually happens after I go to the bathroom and it hurts bad when i bend over.

I’ve asked multiple urologists about this and they always say they have no idea but when searching it online, I have found articles that say it’s common with people who have interstitial cystitis to have this type of sensation.

does anyone experience this?

Hi guys,
I’m a 25 year old female that’s been dealing with on/off symptoms of IC since the age of 20. It seems to be hormonally linked but also to do with my pelvic floor. I’ve had very little sexual experience because quite frankly I’m terrified of my body and the repercussions of sex. My baseline is constant urethral burning, worsening with each time I urinate. It’s took a toll on my mental health hugely, and because I’m so scared of the pain and aftermath of intimacy, I don’t see how I will meet anyone.

I am constantly mourning the life I thought I would have. I’ve basically accepted no one will want to do their life with someone that doesn’t want an intimate relationship. And the thought of ever having children of my own.
It’s just so miserable watching all of this happen for my friends while I am in constant mental and physical turmoil.

How many of you have a successful intimate relationship without it flaring you too badly? Am I being overdramatic?

Hey, I’m getting neuromodulation next month I ust wondering if anyone has been through it and could tell me what I should be expecting and recovery?

I’m 33F, and I’m not even sure if what I have is IC, but symptoms started June 2nd of this year (bladder pain, inflammation, and urgency). I figured it was a UTI, and though I never had one before, I went onto GoodRX and got a prescription for antibiotics. Symptoms went away then returned once I was off them. I went back on another round of antibiotics and same thing. Symptoms went away then came back. Went to the ER, and they said my kidneys were fine. Went to urgent care and every time my urine was tested, it came back negative for UTI but yet the symptoms persisted. I went to a urologist and was prescribed 10mg of Amitriptyline to take nightly and URO-MP to take when I would flare up. I was starting to feel better then lo and behold Friday the bladder pain and urgency returned. I’ve been taking AZO and URO-MP and they help for a few hours then the urgency and pain return. I moved and my new benefits don’t kick in till September, so I messaged my urologist requesting a low dose of antibiotics to take daily until I can get in with a urologist in my new city. I’ve also barely been eating because I’m afraid things will flare it and have already lost a significant amount of weight. I don’t know what to do at this point. I have NEVER dealt with bladder issues before but this has been almost debilitating and I’m about to start a new teaching job and cannot function in my current state. Anyone have any suggestions?? I’ve also been taking D-mannose daily and just ordered some lactoferrin hoping that’ll help.

Hey all, I’ve been lurking the sub for a couple weeks since my symptoms showed up and figured I might as well make a post. I have been having issues with urinary frequency and urgency for the last 5ish weeks with no real identifiable cause, my first urology appointment they said they suspect I have IC. My main symptoms are an urgent need to urinate frequently while passing little urine most of the time, pain and discomfort before and after voiding my bladder, bladder pains and spasms (I’ve most commonly described them to others as “it feels like my bladder is full of pop rocks”), reduced appetite, and general fatigue.

I was put on amitriptyline 10mg twice daily and I’ve noticed little improvement since it was prescribed. I see a urologist tomorrow afternoon to hopefully confirm my diagnosis and get more guidance on what to do moving forward. I work on my feet and the pain (and general feeling that I’m going to pee on myself at any moment lol) has led to me missing over a month of work at this point. I tried to return last week for a few short shifts but it caused me to spend the next few days after in bed with pain worse than I had felt since the beginning.

It has been extremely hard on me as I am usually an active and social person, but I feel so anxious about being in public and having a potential accident that I’ve barely left the house. Any advice or suggestions or anything would be greatly appreciated as I really have no idea what to do at this point.

This is my 15th month with IC, and I can't take it anymore. I experience non-stop, terrible urgency and bladder pressure. For 15 to 20 hours a day, the urge is so extreme that all I can do is scream and groan. I feel like banging my head against the wall or jumping off a bridge. I see death as the only way out, yet I am unfortunately too afraid to die. Sadly, I have other serious health issues that prevent me from undergoing many IC treatments. The only thing I’ve been able to try is medication, but so far, it only worsens my other health issues. Rescue measures—like heating pads, Azo, baking soda, and stretching—do absolutely nothing. I read the posts here every day and follow some of the tips, but nothing helps. I wonder why I drag myself through this torture every day. No sleep, no rest, no relaxation, no joy. I’ve become a completely different person because I’m often angry and desperate; the anger is just a way to stave off panic. I hardly feel any love for my husband and loved ones anymore because of my unbearable symptoms. How is it that they can sleep and live a normal life? Those thoughts make me feel guilty, too. I just don't want to be here anymore; I just want some peace at last. I am not depressed at all, and I have the will to fight, but I am completely worn out. In addition to the urgency, I also suffer from bladder spasms, urethral irritation, and a burning, stinging sensation. The things I’ve tried so far include:

- OAB meds,

-amitriptyline,

-baclofen,

-buscopan

-pregabaline

- stretching (happy child, baby pose)

Some of which made me feel terrible after just one or a few pills. Pure survival mode, day in, day out. What’s the point if there’s no relief anyway?

So, I don‘t know if this is the exact right forum for my problems but I found it the best fitting. I‘m only 17, and since I was barely 14, so 3 years, I‘ve been dealing with weird problems nobody seems to ever heard of or know why and I‘ve tried every medication or therapy there is or atleast it feels like I did. It all started when I came back from summer vacation in 2023. I had diarrhea and stomach cramps there and I thought it was some sort of infection and didn‘t think about it a lot. Then a few weeks later I had the feeling as if I was constipated and constantly had a feeling of needing to go i wasn‘t constipated it just felt like it. Then I also got stomach cramps. This lasted for months and no doctor figured out why. Then it went away suddenly and in like one second, it switched to my bladder. I had the feeling as if my bladder was bursting, cramping in the urethra. I always had flare ups where it suddenly went bad for a week and then suddenly got better without any reason or triggers. Then a few months after that I got some weird body sensations: it felt like a kneading all over my body and stayed since then, since 2 years. So now I have to go to the toilet very often and constantly have this weird sensations and since a few days my bladder has gotten worse without any reason. I also pee a lot sometimes more than I actually drink. I‘m really desperate I just want to enjoy my teenage years. I‘ve been to basically every doctor, psychiatrists because my GP said it is „psychosomatic“, didn‘t help either. Does anyone have any idea? Feel free to ask questions aswell.