PLEASE ONLY RESPOND WITH POSITIVE ENCOURAGEMENT OR SUCCESS STORIES

my only symptom is that i have to pee 24/7 and i don't even remember what it's like not to have to pee. the last time i didn't feel like i have to pee was at 16 years old.

i'm 31 and have had IC for over 15 years, but did not receive a diagnosis until 2022 cystoscopy. for the first 10 years i didn't receive any treatments because doctors just said they didn't know what it was. i have been a bit neglected but i also know i did not advocate for myself the way i am now. i am awaiting a new urologist appointment in december who seems to be a lot more knowledgable, whereas before i was just with an OBGYN who didn't care much, so i know there is reason to have hope, but i am just in a dark place right now.

since my diagnosis i've gone through the usual prescription medications (currently on amitryptiline 50mg) and have tried installations, currently seeing a naturopath, just started pelvic floor therapy, but 0% of anything i have tried has improved the feeling even the slightest bit, even for a few minutes. i have the same day every day no matter what. i don't have good and bad days. i don't have flares. it's just relentless. i've never had any incontinence at all; it's just the feeling of urgency 24/7.

i haven't yet tried botox, and i genuinely can't believe after seeing the OGBYN who diagnosed me for the past 5 years she never once mentioned this, so i am looking forward to trying that. but it's just really hard guys. sometimes it hits me how hard it is and how brave i've been for so long, but still feeling like i'm in a waiting room. i can't have sex and i've literally had sex like once because it feels like it's just pressing so hard on my bladder. it feels like someone's taking my bladder in their hand and squeezing the shit out of it. even doing other things is not really possible because i have to pee so bad all the time i can't relax, and the feeling of arousal is just buried underneath all the urgency. ive never had a boyfriend even though there are people who like me and who i like back. and it's at the point that it's breaking my heart. people in my life don't understand because they don't know the reason and i just feel like there's no point in telling them because they can't help me and i don't want the pity either. i'm sure some of you can understand that once you tell someone something like this, it's not something they can unlearn about you. since it's a 24/7 thing for me i feel like they'll just always see me through that lens to an extent.

i am grateful to have the upcoming appointments lined up and to know that i will have care that i have not yet had before. but for some reason i still feel like i'm drowning right now. in the first 10 years i never thought about it and never complained. i just shoved it all down to survive. but it seems to just get harder and harder and not easier. if i could find anything that could give me even 30 minutes of slight relief per day, enough to be able to have sex and know what that feels like, or to fall asleep watching a movie and not pee 15 times before bed, my quality of life would be drastically better. but the way this disorder manifests for me is extremely unforgiving.

please share any positive encouragement you can, and PLEASE even if you're in the same position, i cannot handle hearing any similar stories right now if the outcome is not positive. i am looking for some hope and love to hang on to and not commiseration 💗 thank you

I've already been off caffeine for years but I was doing fine with decaf coffee. Now I can't tolerate that anymore. I tried Teeccino and that was a trigger too sadly! I miss having something hot to wake up to! Herbal tea makes me sad (lol) I've never been a tea drinker but I would be willing to try a decaf or herbal tea if someone has a good suggestion!

Seltzers and citrus are also out for me. Ideally looking for something hot to replace my morning decaf which I miss sooo badly. 😭

Hi! It’s my first post on here. Hi everyone!
I’m a 27 year old female and first started having bladder issues last October in 2025. It was just pressure and feeling like I constantly had to pee but could still hold it for hours. (I’ve had a UTI before and it didn’t feel like this) I went to urgent care and was told I had Ureaplasma. Took the medicine, it didn’t work, went back and was told I had a Strep B uti. The medicine again didn’t work. I was told to go to a primary care doctor where she told me I had a normal UTI. Took the medication and again the medicine didn’t work. She tested me again and told me I had nothing on my cultures and I was fine. I felt hopeless but randomly the following week everything went back to normal.
In May of this year 2026 I had the same feelings come back. I went to urgent care, was told I had nothing, and randomly again that same week it went away on its own.
In July of this year the same thing happened again.
September 1st of this year I started having pressure and the constant feeling of needing to go started happening again. This time it did not go away and is still really affecting me today.
I have been tested for everything bacteria wise and have been negative on every test and culture. I have had an ultrasound that was returned as normal and was referred to a urologist.
Before I really even told him my story he just told me I had OAB and tried prescribing me pills immediately. Even when I did explain my symptoms to him, he said yeah that’s not very normal for OAB but we can try the medicine. I don’t really want to try the medicine as I don’t suspect it’s OAB.
My symptoms are constant pressure like someone is just sitting on my bladder. I’ll be fine for up to an hour after I pee sometimes but then the pressure will come back. I can hold it for about 3 to 4 hours after the initial pressure starts. No pain when peeing. No waking up in the middle of the night. Just a steady constant feeling of having to pee. Sometimes I almost feel vibrations in my pelvic area.
I’m going to a obgyn tomorrow and just wanted some opinions on what you think it could be or what I should ask or say to the doctor. My day to day life is really starting to affect me and my mental health :(

I had pretty bad IC, was sleeping 0-4 hours a night for a year at its worst bc many nights I'd just be up in agony from IC. I had to restrict a ton of foods because they would cause so much pain. I had IC for probably 2-3 years total, with frequent UTIs prior.

I started low dose naltrexone for long COVID, and it helped my brain fog a bit but the main thing it did was completely eliminate my IC symptoms.

I started at 1.5mg, then 3mg, then 4.5mg, now 6mg. I saw results since 3mg I believe. I'm only at 6mg now bc I keep hoping it will help my other chronic pain and long COVID, but no such luck yet 😅

Thankful I found something that works for me, even by accident!!

Might not work for everyone of course but could be worth looking into!!

Just wanted to share bc I had never heard of this as a treatment option when I was struggling.

Hello everyone! 🌻

My name is Natália, and I am collaborating on a research project at Maastricht University in the Netherlands, working on female genital and pelvic pain.

Our research group is currently investigating why genital and pelvic pain develops and persists, how it overlaps with other chronic pain conditions, and how women and their partners cope with its impact on daily life, intimacy, and sexual well-being.

📢 We are looking for couples to participate in our online survey!

Who can participate?

• People with a vagina and their sexual partner, both aged 18 or older.
• In a stable relationship lasting at least six months (heterosexual or same-sex).
• Both partners must participate.
• No formal diagnosis of genital or pelvic pain is required! You are eligible as long as you experience persistent genital or pelvic pain.

Participation involves two separate online questionnaires: approximately 30 minutes for the woman experiencing pain and 20 minutes for her partner. Your participation is voluntary and you may withdraw at any time.

💜 Interested in participating?

·       Register here:
https://maastrichtuniversity.eu.qualtrics.com/jfe/form/SV_9Qqsjee6VSMfAvY

·       Or contact us at:
[fpn-genitalpainstudy@maastrichtuniversity.nl](mailto:fpn-genitalpainstudy@maastrichtuniversity.nl)

The study has been approved by the Ethics Review Committee of the Faculty of Psychology and Neuroscience at Maastricht University (ERCPN 276_17_01_2024) and the Medical Ethics Review Committee of Maastricht University Medical Center (METC24-037).

Thank you for helping us better understand the connections between chronic pain conditions and give greater visibility to women's experiences of genital and pelvic pain! 💜

Does anyone else find the berocca drinks increase your frequency and urge to pee? When I was dignosed with IC I started drinking these as a energy boost instead of coffee but have found these drinks still give me the same sort of urgency that coffee does. Wondered if it was something thats in the drink causing it?

My mom and I have always suffered from mental illness. It began when I was a child and her as a young adult we both and extreme treatment resistant depression.I told her about therapeutic prescribed ketamine. I started it and became the guniea pig.

Fast forward 6 months later as you all now I am here with IC even though it was under my doctor countless doctor appointments and pain in a new frontier with this disease. Worrying if I will have this pain for life.

In the shower realization hit me weird sense of gratitude. I pee like a racehorse and I don't know when my bladder will me normal. But I am glad its me and not my mom. I'm glad that she didn't have to put her body through this as someone who is older than me and have unneeded pain. I don't have peace per say but a bit calmer that I have a diagnosis and not a weird mystery UTI

I don't know why I am sharing this, maybe anyone else feels the same way? I know it may be odd

I may as well not even gone to the uro yesterday-Monday. I had Axonics last year and it seems i got transferred to their care. I saw the doc at the last appt when they changed settings. Never saw him this time. It seemed like a lot of trouble for barely 10 minutes. Axonics has improved OAB but not the way I'd like.

Has anyone noticed a change in their IC flair ups after pregnancy and birth? I’ve been dealing with IC for years and after having a baby I haven’t had any? I’m only 3.5 months postpartum but usually have flair ups at least 2 twice a month

I have manageable interstitial cystitis (symptoms can be made nearly invisible by strict dietary changes), so I'm not recommending this to someone with really bad IC or anyone currently navigating a flare-up, but I want to celebrate and share for those of you who are in a position to tolerate some experimentation.

I'm not a huge coffee person, but for years I did notice that whenever I drank coffee for a couple days straight, my bladder would make me pay for it.

This year, I was really craving the taste of coffee, so I looked into low acid coffee options, and a google search told me that cold brew contains 70% less acid than regular coffee. So I tried drinking it for a couple days straight, and I had no adverse reaction-- only the slightly manic coffee high that I'd missed!

I drink cold brew a few days a week now (on the other days, just tea), and my bladder seems fine with it.

So, I'm rejoicing!

Still mourning the loss of orange juice, though </3

UPDATE: My primary care doctor is familiar with IC and prescribed me amitriptyline and hydroxyzine until I can see an actual urologist! She said it has successfully helped her other patients’ symptoms so fingers crossed this works for me! Im starting it later tonight.

I finally scored a referral to a urologist after being denied twice, and going to the ER for this debilitating pain three times in the past two weeks. To help ease my pain, I have changed my diet drastically, been taking a women’s health probiotic everyday, d-mannose, antihistamines (Zyrtec and Benadryl), muscle relaxers, and even steroids from my recent wisdom tooth surgery. The only way I can rest at night is oxycodone prescribed by the ER doc when he saw that I was screaming in pain.

My OBGYN saw me today, and referred me to a better urologist after ruling out any reproductive issues. However, this doctor cannot see me until the new year. Until then, what do I do?

I have a primary care doctor appointment today, and she is thankfully very receptive. Should I mention that my OBGYN brought up the diagnosis of IC and see if we can try something like amitriptyline preemptively? I just don’t know how to make it until January…

I can't swallow pills. I've tried all the different methods. I feel like I'm getting closer to figuring it out. I'm 26 for Pete's sake. It's very frustrating. I've had moments of success, but can't swallow them consistently. I'm looking for a non-pill option for Aloe Vera to help the bladder. I guess it's supposed to be a specific kind of aloe vera. Does anyone have any recommendations? or alternatives for what aloe vera does for the bladder?

I don’t get the “burning pain” that i see so many talk about. I just get a deep ache as it starts to fill and makes me go pee very, very frequently. I get relief after peeing until it starts to fill again.

Since i don’t see many with this symptom, those who DO have it, what works for you? What gives you relief?

People with Hunner lesions, what has helped you, if anything?

Did you see any improvement with Whitmore cocktail/corticosteroids or cauterization of lesions,?

TIA

Hi all, I’ve had IC for 5 years with two of that being symptom free. My flares seem to trigger from hormone changes, my hypertonic pelvic floor and the biggest one - coffee.
Sometimes I’m ok thanks to birth control but sometimes I have constant burning and am completely afraid of dating because I avoid intimacy. I’m 25 and it’s making my life miserable. I moved to a new city for work and there is a female IC specialist here, where as at home it’s impossible to find a doctor that even entertains my symptoms.
I’ve basically had no treatment or answers, just a diagnosis.

I could book a gp appointment and ask for a referral, but I’m also scared my now 4/10 pain could become 10/10 pain again if someone starts trying medications with me etc.. based on experience what would you all do?

I have tight pelvic floor muscles that squeeze nerves. Nortriptyline helps but we wanted to add something in. Gabapentin is flaring me and I’m burning more and burning with pee and I’m using it to help that! Has anyone experienced this and if you did, what other meds did you try that didn’t flare you?

My husband and I will be making nachos this weekend. I'd like to avoid triggering a flare. I'm looking for sauces that I can add to nachos in lieu of salsa. I also need to avoid avocados so guacamole is out. Does anyone have any suggestions?

I genuinely want to cry and need some support.

I have been on Ketamine since May and my doctors have been thinking it is IC induced from therapeutic mental health ketamine.

It has been scary what I have been going through and painful. I went on Ketamine and Spravato pages to you know warn them because this is scary, painful and nobody deserves this.

People told me:

Your fear mongering

Your story doesn't add up

I'm a man in my 40s and I never had bladder issues

60 mg wouldn't do that

Well you know what doesnt add up spending a month going from doctor to doctor going nowhere because American healthcare is a joke. I know Ketamine is a wonderful drug for mental health, I noticed the side effects.

Complelty downplaying and invalidating my experience

I'm so hurt I thought people on reddit were nicer. I deleted my posts because I couldnt bear the bashing I just wanted to help

for the past 7 years, i’ve had constant, 24/7 pressure in my bladder. to spare you the details it’s been a living hell. but could this be something that is an endo symptom? this is what my family is looking into now and i wanted to know if it’s a possibility.

Has anyone had any experience with their bladder involuntarily spasming during the bladder installation process and causing the entirety of the medication to leak out eventually? I had my first instillation today and I had some leakage during the injection of it but since it was my first one, they had me wait 15-20 minutes to make sure I tolerated it and in that time, I ended up progressively leaking out pretty much the entirety of the medication (when i went to the bathroom, basically nothing was in there). Trying to figure out any possible solutions to avoid this happening again. It’s also not painful (other than some pain from the catheter) when it happens, it’s just involuntarily leaking out

Hi All,

Looking for some help as I’m going through my first serious flare in 6 years (yay but BOO) I forgot how demoralizing this is 😔

I think I caused the flare by taking Advil cold and sinus for 4 days straight - has anyone had a similar situation? And how did you get it under control?

I went to a urogynocologist and he was AWFUL and just dismissed me and did urodynamics for no good reason - I’m in so much pain so could really use some support and tips. Thanks all so much in advance. 💛

waiting for cystoscopy but think I may have IC. I’ve had bladder issues for years that aren’t uti. I was good for months but recently it began again. I had started running again does anyone know if running triggers it? I notice if I stop and rest few day I improve. also notice if I get stressed tingling immediately returns like within minutes pressure and tingling but don’t know if this is in my head or what bc it’s like so quick can that be real. I live with pressure low in abdomen plus a nerve type pain that extends from low ab to big toe like constant ache not sure if related. I have 20 blood number ( microscopic ) I never see blood but on numerous labs last couple years.

burning? bladder filling pain? urgency? frequency?

i go next week for my first one & nervous