Hello I’m looking for help here because I am so confused about what is going on with me. For the last year I have gotten a “uti” about every 2-3 months. I had my urine tested twice and there was no bacteria but there was blood and white blood cells. The feeling starts as very intense burning after peeing for maybe an hour or two. It’s almost unbearable. It’s more just very uncomfortable than painful. I also feel like I have to pee more often so this makes the pain even worse. This lasts for about a day and then following this for about the next week my bladder feels extremely swollen with a lot of pressure. The burning goes away but I still feel like I have to pee more than usual.

Does this sound like IC? I was also looking into pelvic floor issues, ureaplasma, and embedded uti

I noticed that my pelvic muscles during this time are very tense so I’ve been trying to do stretches and relax my stomach more. This seems to help. I also so drink absurd amounts of caffeine. I need to stop and see if it helps but I did notice that sometimes this reaction is triggered by drinking alcohol. Additionally I have no idea if this is related but I have also been getting fevers a couple times a year with no symptoms of normal sickness. Just fever symptoms like cold chills and light headedness.

I (24F) feel like I am losing my mind. I can not live with my IC diagnosis. I just don’t want to accept it because once I do I feel like I have no hope to feel okay again.

Everyday that I wake up is constant agony.

I can’t sleep at night, I can’t focus on anything during the day. I’m having daily crash outs & I genuinely feel like I have zero quality of life. I can barely get out of bed to make myself food and I can barely eat anyways. I am incredibly dehydrated because i’m so scared to drink anything and make this pain worse.

I suffer from PTSD and Bipolar and can’t do any of my normal routines that prevent me from having very bad depressive & anxiety filled episodes (go to the gym, hangout with friends, get outdoors, etc). I was given Oxybutynin to help get me out of bed, but this prevents me from any physical activity (prevents sweat causing heat stroke if you do physical activities that would normally induce sweat). Even being in the sun for more than a few minutes can cause a heat stroke.

I don’t know what to do. I can’t live like this. No one can tell me what’s going on.

I have been suffering for almost 8 months now and have gained weight, started self harming, losing my relationships, losing work, and I just don’t know what to do.

I genuinely don’t want to live.

I’ve seen so many doctors and up until this past week all they do is test for bacterial infections over and over and over (even when i tell them hey I had this done literally two weeks ago at another doctors I don’t want to do this again). Finally I got to a urologist last week. She prescribed me the oxybutynin and said I had overactive bladder disease (OBD) and I needed an invasive surgery. Went back yesterday to tell them about the side effects I was having with the temporary medicine (heat stroke) and a different urologist this time told me I definitely don’t have OBD and I should have never been given that medicine.

She was honest and told me she was baffled by my symptoms: feels like a MONSTER UTI….incredibly overwhelming and CONSTANT burning feeling. Like i’m sitting in a fucking open flame. constant urge to pee but only a few drops if I strain and then it’s even more horrible burning….also a stabbing/ pinching sensation directly in my urethra that will happen when I lay down and try to relax, ETC. All of this for MONTHS with zero relief from dietary changes, antihistamines, all sorts of supplements… NOTHING. the only relief I got was from essentially overdosing on Azo and chugging water to the point where my kidneys were literally on the verge of collapse…yay azo).

Anyways….she said no to OBD and said it is likely IC (even though this diagnosis is supposed to be from elimination right??? I have had zero tests done. ZERO. not even a CT scan.) But she prescribed me some strong pharmacy allergy medicine and scheduled a follow up in a MONTH.

I truly don’t know if I can make it a month. I am also a suicidal person (yay bipolar) and this torture i’m living in is making those thoughts feel more actionable…. if you know what I mean.

I guess I don’t even know why i’m making this post. I’m typing while literally cringing and crying from the pain going on right now while i’m trying to sleep. I feel like no one will ever be able to help me and I can not face the reality that THIS is going to be what the rest of my life looks like.

I guess I am just looking for help.

How do you manage your pain? How did you deal with your diagnosis when you first found out? How do you not want to die? What should I do next to get medical help?

I live in Maine…we have like one urologist so I have no idea what to do. Please help 💔

(edit): I also often have burning after/ uncomfortableness during/ sexual penetration. I am currently seeing a gynecologist about this. I can’t even get through a transvaginal exam or ultrasound. touching my cervix induces incredible pain, like someone is literally using a knife down there. I also have IBS and chronic constipation. Just putting this out there incase anyone has similar issues and has found a correlation between these things and IC.

(EDIT: to be clear i do NOT have OAB . My latest visit suggested I have IC and she said she was going to treat me as such. Sorry if I confused anyone! This post is about living with IC)

I’m thinking about starting Amitriptyline for IC because I’ve heard it’s very effective,however I’m a little bit nervous about it because it can lower seizure threshold (i had one really big seizure 2 years ago from wellbutrin). Obviously I’m checking in with my neurologist to ask his opinion, but I wanted to see if there’s anybody here who has a seizure history that takes Amitriptyline.

Hello fellow sufferers

I just recently got diagnosed and have start bladder instillations. Things seems to be improving but I'm also heavily avoiding any triggers or possible triggers since my diagnosis. My last flare was from a pineapple popsicle and I was curled up in my bed wishing I could claw my bladder out.

But I miss my daily lattes and caffiene so much. I'm trying sips of caffinated teas here and there hoping for a tiny boost of energy with little side effects. I've actually been avoiding coffee for months now. I believe caffiene is a trigger not just acid.

Just wanted to vent and see if anyone is in the same boat or is maybe brave and decides to suffer for some espresso every once in a while. 🥲

I don’t know what is going on with me. Just had a kidney stone blasted in the kidney but urologist found “mild slightly reddened” chronic inflammation in the trigone area of the bladder upon Cystoscopy but said it’s due to my active ulcerative colitis (I am flaring and have been for 7 months, the pain i am having came two weeks after flaring)

So the pain I am having jumps from the left side of my clitoris, the middle top of my clitoris, the bottom of my clitoris, and then the very bottom of my vulva, close to the taint lol.

It makes me feel like I need to pee. It’s a throbbing, stinging sensation. It feels like I felt when I passed kidney stones over the decades but I don’t think it’s actually kidney stones this time.

So my question to you guys is: is the pain actually coming from your urethra? Because I had an idea to actually touch the part of the pain while I was peeing and that’s not where the pee was coming out

So it wasn’t really urethra pain.

So what does this mean?

This is driving me crazy. I will never know what is causing me pain and I fear I will never get better. And it’s not affected by food at all

I had an in-office cystoscopy with hydrodistention this afternoon. Dr sent me home with some samples of Uro-MP (and a prescription of it) to handle pain/spasms over the next few days. My main issue right now is my urethra is BURNING. Any suggestions for relief??

Hello, I was finally diagnosed with interstitial cystitis in 2019 after three years of suffering. I took amitriptyline 25mg in the evening and something else for an overactive bladder, but I had to stop taking it when I became pregnant in 2021.

Until now, I was doing well enough to lead a normal life, but a few days ago the symptoms suddenly returned, and I'm desperate! Constant urge to urinate, a burning pain in the bladder, and this strange feeling that the bladder is inflamed. There are no bacteria in the urine.

I generally follow a low-histamine diet, and if I've been careless, I've had symptoms just one day later, and then the problem is over.

I don't know what to do now because I miss my life when I was fine and almost thought I was cured. Would it make sense to increase the amitriptyline to 50mg, or are there other medications that might help you?

Thank you!

Anyone here on Venlafaxine/Effexor? My doc and I are trying to figure out if it caused this or at least sparked it/made it worse. My symptoms all started right when I started taking the medication.

I've never had frequency problems in many years of IC (I may have had IC since childhood, but I was diagnosed about 17 years ago) until this summer. My uro/gyno ARNP says she swears summer makes IC patients' frequency jump. She also said it's just an observation and NOT anything backed up by any science.

Does anybody else get more frequency in the summer?

Wondering if this happens to anyone else. I have been having symptoms on and off for almost a week-ish. Low-key constant burning, urinating often and urgency. It doesn't burn while I pee, and plenty of pee comes out, it's just a burning and pressure for a while after. During the day I feel totally fine and then around late afternoon/evening it starts again. It makes it hard to sleep because I keep having to get up and pee.

I did take a UTI test at home in case and it is negative. This happens all the time. If I go to the DR my test strip will sometimes show trace blood or trace leukocytes which they will insist treating with antibiotics while we wait for the culture-- which always comes back totally negative.

In 2021 I was going through a stressful time and had this uncomfortable, unexplainable discomfort of my bladder/vagina that came on suddenly. It’s hard to explain but it felt like torture I couldn’t go even a minute without thinking about it. Felt like I had to pee when I didn’t, felt like I had a heavy nagging pelvic floor, and burning sensations. My doctor started me on amitriptyline 25mg and I felt better within a week. I then upped my dose to 50mg as it was helping me sleep as well. I was stable and asymptomatic for 4 years on amitriptyline. In May I decided to try and go off of it because I didn’t think I needed it anymore. Within 3 weeks all the symptoms came back but 10x worse than the first time. I thought I ruined my body. I restarted back on 50mg right away and it took 12 weeks to completely feel like myself again. By week 8 life felt more tolerable but it certainly wasn’t gone. Now I’m 12 weeks back on and feel 95% normal again

Recently I decided to try CBD (recommended by my doctor.) for symptoms! I ended up ordering the wrong thing and got CBG instead. Later I found out that CBG is just like CBDs mother chemically, and are very similar, and have pretty much the same effects! But also that CBG had more research to support that it helps with IC!

I can’t explain to you how much they’ve helped me! I almost feel normal? My bladder isn’t in any pain that I can really notice. Instead of struggling to pee, When I pee it’s a normal good stream. I have a lot LOT LESS frequency that I feel the need to go. I’ve had some irritates like coffee and it also held up very well, and I didn’t see any usual side effects! At time to where it’s not sending me into no symptom heaven things just get more manageable! So far I’ve been taking it at the start of the day almost everyday for the past 2 week. I absolutely felt my bladder pain go down the first time I took it though! But soon I’m gonna try to start taking it only when my bladder gets bad, or if I’m taking a trip and I don’t want it to get in the way, instead!

I’m taking a 50mg CBG gummy for reference!

Later I’ll probably try CBD as well to see if it’s the same or similar. I’d ABSOLUTELY recommend trying CBD or CBG. You can always just try it and see! Plus starting where ever you’re comfortable when it comes to milligrams, and work your way up! For me the past 2 weeks it’s been a life saver And a much needed break. I’m sure everyone’s different but I hope it could help others peoples symptoms! I FEEL LIKE MORE POEPLE WITH IC SHOULD KNOW ABOUT THIS!

Context about me if you’re interested- I’ve been suffering with IC since I was 10 years old, probably inherited from my mom. (I don’t have chronic UTIs just IC!)

Ive had really really awful times but on a day to day I’ve been able to manage somehow. it’s a lot more unbearable than I give it credit for and it’s ruined a lot of things for me. it’s just hard to think of a time my bladder wasn’t in some type of pain!

Since 10 I’ve completely cut out soda (my biggest irritant) other things have been harder for me to cut and sometimes kick my ass though.

I don't know what's wrong with me, and nor does my urogynocologist. I am a 17 year old girl, and for a year and a half now i have had unexplainable pain (but most NOTABLY urgency) issues in the urethral area. It comes and goes, and the 'flare-ups' last about an hour or two at a time. It feels like i still need to pee/ bear down, it can burn at times, and it just feels wrong. Like the beginnings of a UTI. Only there isn't one. Do i really think it is IC? No. I have no issues with bladder pain, just the urethra. It's wrecking my life. I am about to graduate and all i can do is go home and cry because school takes 100% of my capacity. How am i supposed to have a career? A life?? A partner??? I have refused a cystoscopy, because i think it will be counterproductive and runs the risk of making things worse.

My doctor put me on topical clobetasol gel for the area, and i think there was an improvement for a bit. But then it started causing side effects that were arguably worse than the starting point! I just don't know what to do. I graduate in three months. I want to chase my dreams. I want to understand why this is happening to me, and find the root cause of this. Not just slap a fucking steroid on an extremely thin sensitive area and call it good. That's lazy. If ANYONE has ANY ideas, shoot. I have researched the internet top to bottom, but i am sure the people here know how that goes. Please, help me.

My doctor in the last city I lived in was amazing at treating my IC and it was the best it's ever been.

My new doctor believes that the condition doesn't exist, says I don't have it, and that it's all in my head. My symptoms have gotten so bad that I can barely leave the house or socialize.

Since my doctor thinks my symptoms aren't bad enough to see a urologist through the public health system, I have to see someone privately. It's so expensive and there's a three month wait.

I don't know how anyone is supposed to just deal with severe symptoms. Feeling hopeless today.

Does anyone know anything to help with really bad bladder pressure? It feels like the pressure is inside my bladder pushing out.

TIA

Urologist prescribed Solifenacin (Vesicare) to me but I'm hesitant because of the side effects, as well as the last OAB medication not doing anything for me. Would love to hear your experiences if anyone's taken it before.

Crying as I’m writing this. I’ve been dealing with extreme IC for 6 years and failed all meds, diet changes etc. Bladder and urethra appear normal on cystoscopies etc. I had a hydrodistention a week ago and my IC is 100% worse than it’s ever been and it was already so severe where I woke up every 30-60 min each night, sometimes more. Now the urge never goes away and I cannot sleep at all. I have been suicidal over my ic before but now that it’s even worse I’m scared it will push me over the edge. My follow up is in 3 months and there is no way I can wait that long. Will my symptoms ever go back to baseline, which was bad enough? I’m actually panicking, nobody can survive without sleep

I think there is a list of Pelvic Floor PTs that got sent around but it would be awesome to also have a list of urologists where you have been heard, that have been helpful and have helped with treatments?

I’m trying to figure out the pattern of my flares. I think I’m noticing that during ovulation I’m having really bad flares every month. Does anyone else experience this? What do you do to help the pain/urgency to go every 5 minutes?

Hi. I am 31 years old and about 2.5 years ago I was diagnosed with Fowlers syndrome and chronic interstitial cystitis post hysterectomy. I started my journey with self cathing and have had the InterStim devices placed on the left and right side. I first had the bigger InterStim devices placed. The right side got infected and was removed, then about a month later the left side battery flipped and had shocked me. In December 2024, I had smaller InterStim devices placed. In March of this year they were revised into a deeper pocket. But since having it, I have had back pain, trouble sleeping comfortably, swelling in both of my legs with pitting despite being in lasix twice a day(this started after most recent revision). And I feel like I have flare ups more often now than before. Not to mention about 2-3 weeks ago I had bent over and felt a sharping shocking pain in my lower back that caused me to black out. And the pain has remained since.

Has anyone had similar issues? What are your experiences with the InterStim?

I am kinda on the edge of wanting the devices out or just keeping them and dealing with these issues. I’m stuck as to if it is helpful to me and worth it because I have had to have about 8 surgeries just for the devices and leads but the complications leave me stuck. Please help.

Hey guys question!

So I got the hydrodestention procedure 7/11/25 and have been symptom free luckily since then. But I started my period (first one since my procedure) and have symptoms again.. is this something you’ve also experienced if you got the procedure & did symptoms go away again after your period ended? Thanks in advance : )

I do,especially if i strain. I did have a fungal infection but i treated it and dont have a UTI or ulcers. Im sure it could be because i wear pads and of the leakage,but its so bad, it makes me feel so unclean.

I'm a male dealing with daily interstitial cystitis issues from ketamine therapy which I stopped 4 months ago (never had any issues before then). The urologist said it's most likely ketamine cystitis so the cause of it is a bit different, but I find that the symptoms are almost identical to interstitial cystitis. Progress is painfully slow and gradual but it's being made. I'm getting a second opinion soon but am struggling to properly word and describe the symptoms I'm dealing with and I would really appreciate it if y'all could describe how your symptoms show up and what they feel like to you?

Right now for me they are:

• Urethra sensitivity and pain: Often feel stinging/burning pain in the tip of the urethra, which persists for a couple hours after I urinate. Almost feels like I'm holding in a couple drops of acidic pee at the very tip and feels a bit like a sunburn internally irritating me there.
• Sense of urgency: Often I feel a sense of urgency multiple times in an hour and when it's bad it's multiple times a minute. Just feels like when you break the seal when you're drunk and always feel the need to pee, but when you actually try to not much comes out (not a retention issue but just because the tank is mostly empty)
• Sense of frequency: Increased frequency of going to the bathroom, but mostly due to the increased sense of urgency. Not really a big issue as I don't wake up in the middle of the night to pee or anything so I think it's mainly caused by the sense of urgency
• Tingling sensation near bladder: Sometimes I feel a tingling sensation near my bladder for no reason. Its almost like what I imagine butterflies in your stomach feel like from anxiety, but just in a different location
• Foods causing worse conditions: All these issues get worse for a few hours when I drink coffee, orange juice, or something high in artificial sugar. Or if I eat sweets or foods high in artificial sugar.
• Aching in the bladder: Sometimes there's a general achiness in the bladder region. Not sure why or how it happens but it's uncomfortable as it almost feels as if someone is mildly squeezing your balls or something.

I've noticed some posts about a clinical trial from 2-3 years ago, but it seems like there haven't been many big updates since then (?) A bit hesitant but since I've been dealing with a super bad flare-up since last week, I'm just desperate to try ANYTHING that people said was helpful...

Bought two bottles and waiting for shipment.

Please can anyone share some positive experiences with this supplement to give me hope of relief...thank you

Sometimes when I sneeze my bladder feels like it's being squeezed painfully. Like my whole body cringes from how painful it is. I just sneezed twice in a row and I'm crying right now. Anyone else have this happen? Not looking for help just want to complain with people who understand and relate.

I take AZO 2-3 times a months when the flares are really bad and painful. But I know it says to only use for a short period. Does anyone have any knowledge on this and if it’s okay to take like this? I Haven’t been back to my Urologist in years after I was diamond and really don’t want to make an appointment for this one question because this overall seems to control my flares.