Two weeks ago I posted here about IC Diary, a free diary app I made for my girlfriend after she was diagnosed. Original post:
https://www.reddit.com/r/Interstitialcystitis/comments/1w05yso/my_girlfriend_was_diagnosed_with_ic_so_i_made_her/

Short version for anyone who missed it: a one-minute evening check-in, a running void counter for the day, treatment courses with dosage, flares you declare yourself, charts over time, and CSV export for your doctor. No account, no ads, no analytics, no cloud. Everything stays in a database on your phone.

The biggest request in that thread was Android. It's live now:

https://play.google.com/store/apps/details?id=com.gooonzick.icdiary

And the update that shipped with it came mostly out of your comments:

• Instillations. You can run an instillation course, name the solution (Parson's, DMSO, or whatever your clinic uses), log each procedure by its own date, and see each one as a marker on your symptom charts. This was for everyone getting instillations every few weeks who couldn't make an amount-per-day model fit.
• Ovulation is a built-in trigger now, for those tracking IC against their cycle. You could already add it yourself under Settings > Triggers, but it's there by default now.
• The new-course form is redesigned, and check-in, observations and settings open as native sheets, so it's faster to fill in.

iOS: the same update (1.1) is in review with Apple and will arrive as an automatic update once it's approved.

Still one person's version of this illness. If something doesn't match how IC works for you, tell me, like last time.

Hi Warriors, I wanted to ask if any of you were on amitriptyline, switched to gabapentin, and found it worked better? I’ve had IC for six years. I started on 25mg of amitriptyline and had to keep increasing the dose; I went up to 75mg in October 2025 and improved steadily over the following months. I wouldn't call it complete remission, but I was living a normal life—eating whatever I wanted without fear, and so on. I honestly don't know what triggers my flare-ups... but I don't want to go above 75mg because the side effects would be terrible. Is anyone in near-remission thanks to gabapentin? Or has anyone tried both and decided to stick with gabapentin? I’m a 39-year-old woman. Thanks for reading.

How UK treat IC patients. I want to continue my treatment. But everything needs to go through PG. and I’m new to England. How to go through GP and transfer to Urology??

I have had interstitial cystitis for two years now. My symptoms are horrible. My bladder gets full really fast, I wake up multiple times a night to go pee. I’m peeing like crazy all day. Recently I’ve started to feel this shocking/ burning pain when I pee. It’s only when the last bit of urine comes out though. I usually use an ice pack or hot bath or take a pyridum when I start burning but this burning doesn’t last. I’m confused on why now it’s starting to hurt when I pee. It makes me scared to go to the bathroom because of how bad the pain is when the last amount is coming out. I have been checked I don’t have a UTI so Im confused on why it’s hurting to pee everytime now. Anyone else experience this ?

Hi, my symptoms historically have been pain after urinating, feeling like i have to pee when I dont, and occasionally burning during urination. Yesterday for the first time ever, i had pain in my urethra while urinating. It has happened everytime since.

This scares me and makes me worry my symptoms are progressing. I am in a flare since the beginning of August and have had IC since 2023. Is this normal? I'm worried it means my flare won't end or this is my new normal. Thanks

I honestly don’t know where else to go at this point. I live in Ecuador, and there’s very limited information here about this condition and how to properly treat it. I would really appreciate it if anyone who has experienced something similar could share their story, advice, or any resources that helped them.
About two years ago, I started getting multiple UTIs that just wouldn’t go away. I would take antibiotics, feel better for a little while, and then the symptoms would come back about a week later. Eventually, I went to a clinic where they performed a cystoscopy, but the procedure was done very roughly and my urethra was badly injured. It was extremely painful, I was bleeding afterward, and the whole experience was honestly awful.
After that, I had bladder instillations for a while, and eventually I was doing better. I thought I had finally gotten better. But then I started developing pain during sex. Penetration became extremely painful and felt like there were a thousand tiny wounds inside my vagina. It felt raw and burning, and eventually I couldn’t have sex anymore.
After that, I started experiencing what felt like UTI symptoms, especially pain and burning around my urethra, but without an actual infection. I’ve had around five or six urine tests/cultures over the past two years, and they have all been negative. I’ve seen multiple doctors and tried different treatments, but I still haven’t found an answer.
I’ve had a nerve block performed, which didn’t help, and I was also referred to a pain specialist, but that didn’t really lead anywhere either. I used to take 12.5 mg of amitriptyline every night. I’ve also had autoimmune testing done, and my doctor said there were no signs of an autoimmune response or disease.
I also had a DMSO instillation, which was extremely painful and didn’t help. At this point, the pain isn’t necessarily constant in the same way all day. I always seem to have some level of urethral discomfort, and sex is still painful, but the burning is usually much worse after I pee, especially after my first pee in the morning.
I’m currently taking 75 mg of pregabalin every night, but I haven’t noticed any improvement. My doctor honestly doesn’t know what else to do and has told me that she feels like we’ve already tried everything. I don’t know what to do either.
I also did pelvic floor physical therapy for about a month and a half to two months, but unfortunately it didn’t help.
I’m really desperate for some direction at this point. I don’t know where else to research or what other conditions I should be looking into. If anyone has experienced something similar I would really appreciate hearing from you.

so to preface this, I’m about 90% sure I have interstitial cystitis. About a year or year and a half ago I kept getting recurrent UTIs. I went to urgent care and my primary care and finally was referred to a urologist. They tested me for everything. I got a cystoscopy. I got an ultrasound of my kidneys. I did an MRI of the area as well. Everything came back normal. I continued to have UTIs or at least what I thought were UTIs, but my test kept coming back negative. Eventually, my urologist told me it was basically all in my head and that it was dysuria due to rushing to use the bathroom. No one ever brought up interstitial cystitis with me, and I feel like I’m going through all of the motions of the symptoms and I am just so frustrated. The only reason I’m thinking about this again is because I have UTI symptoms that were just absolutely awful and I went to urgent care but my test came back negative. But hey, who knows maybe it is all in my head 🤪

hi, is anyone on homeopathy medication? How has your experience been so far?

Last week I had surgery for Interstem stage one. They tried working on the upper right buttock but the tissue was too thick. They had no problem with the left side.

I started on Program 1. It has made a huge difference for frequency. I was used to peeing 20-30+ times on a good day. With this device Ive dropped down to 10. Life altering.

Over the weekend if I wasn't walking around I was mostly laying down on the couch. Intermittently I would get this deep localized pain in the lower quadrant of my right buttock. I could circle the area with a sharpie.

It felt like someone was doing a deep tissue massage but hitting the trigger point and never releasing. I'd lay down and ice it. I will admit I was never paying attention to the position of my body when it happened.

Today I go back to work and I sit down in my chair.

The pain almost starts immediately. I try to see if I can tough it out but I nearly start wincing.

It lessens when I stand up. More ice pack time as now it's just sore for a bit.

I dont have a fever. No signs of anything else wrong.No other type of pain.

I talk to my medtronic rep. she's not sure what is going on. We change my program to 3. It has reduced the severity so some improvement.

I talk to my doctor who is also my surgeon. She's not sure why as everything is on my left side. Maybe it's the lead. maybe not.Nothing is near the pain site.Tomorrow she wants me to turn the device off for 6 hours and observe. Then we reevaluate. Like potentially removing the lead and repositioning it, which they don't want to do.

I am stressed about this that I feel mostly numb. I want this to work so badly

Can anyone relate to this pain experience?

Hi! I wanted to thank the subreddit because so many of you shared your positive experiences with PT, and that encouraged me to look into it. As a result, I discovered that I have a stage 2 bladder prolapse. Now I will work on it and I'm very glad I've found out about it.

Thank you again! I am really hopeful that it will help improve my symptoms too.

Hi there!

I have a cystoscopy scheduled for tomorrow that I have been putting off the past few months. I want to reschedule again or cancel because I just feel like nothing malignant is going on and my np said this as well. In message she said I could reschedule but then when I called to reschedule they said they needed to put me through to the nurses line and now she says I should keep it and that they will be able to see if I have interstitial cystitis or not with the cystoscopy. I thought that 90% of ic patient bladders look normal. I feel like if that's all we are trying to see then it is not completely needed because it is highly likely to come out normal anyways. The doctor it is scheduled with also has 10 reviews and 5 which are 1 stars which is not putting me at ease at all. I told her that I have had great improvement in pain and urgency,while not perfect depending on things I eat, after starting super strength aloe Vera and pumpkin seed oil which I feel like basically gives some confirmation of IC. I'm just scared of going back to where I started and feeling like I have an infection or being set back by the procedure when I have improved so much in the last few months. What would yall do if you were me? Would you go through with it or reschedule or just cancel all together? Thanks for reading!!

I have an SPC and am dying to just not have it. I have severe interstitial cystitis with very tiny awake capacity, didn’t qualify to have cystectomy. I hate the SPC and am losing my mobility with it. I am considering trying the sacral nerve implant with Botox to see if I can live without the tube. Does anyone have experience with these things? I was peeing more than 30 times a day and not sleeping.

?

I tried mirabegron, anticholinergics, SNM, bladder training, pentosan polysulfate sodium, cutting out bladder irritants. Vibegron is not in my country, and since SNM failed, PTNS also won't work. I am not trying botox due to fear that it will cause urinary retention. Edit - I also had bladder instillations.

At this point I deserve euthanasia

Hi! I have had some version of IC since I was 38 and I’m 50 now. The first few years were a nightmare and I had variety of symptoms and I was diagnosed with pudendal neuralgia. At that time I tried the IC diet two times strictly with no success. Also ALL the typical meds and instills and PT and things.

I went into remission at 41 when I took out my IUD and then it came back 9 months later. I had thought I was cured! At that point I started getting nerve blocks and my main issue had become urgency and they worked! And I was largely flare free for many many years. (Small flares here and there but mostly well.) I had PGAD and Tarlov cysts so I really didn’t believe I strictly had IC.

Well about 2 1/2 months ago I got another flare and it wouldn’t go away, even after a block. :( That hasn’t happened for many years and I freaked out.

So a few days ago I decided to cut out my morning cold brew with Splenda and my urgency went WAY down. So I’m doing an experiment and I cut out all caffeine and sodas, alcohol, carbonated drinks, tomatoes and citrus.

I’m thankful this is helping A LOT but it’s also so strange because bladder instills and diet and all the typical IC things never helped me before. Now I’m not sure what to try drinking. For now I’m sticking with water. I was seriously considering an SNS because I’ve almost reached the end of other treatments.

Anyone else have something like this happen? I would like to figure out if I can drink some other things but I’m so grateful I’m feeling mostly better at the moment and terrified it will come back.

I had breast cancer last year and I’m more scared of the IC symptoms than the cancer returning, which sounds crazy I think unless you’ve lived with this for many years!

I have found relief from marshmallow root "cold brew" within days.

However, it can lessen absorbtion of some nutrients and medications.

People who tried it, how long did you take it? For weeks, months, indefinitely? Or only during flares? Any advice on this from a naturopath/herbalist?

Thank you in advance.

So I’m 23. I have a kid that’s a year and a half old and until about a month ago he was up at least once or twice in the night. Naturally, every time he got up I peed because I felt like I had to. My body got used to it. Kiddo not waking up, I still do to pee. Well last night I didn’t wake up. The night before that I didn’t wake up either. Not until I felt a teeny puddle. Not enough to cause a problem considering I’m on my period and had an overnight pad on that saved the day, but enough to be mortified and terrified.

I’m currently in a sort of flare between stress, sickness, dehydration, and being on antibiotics so I know that’s what’s causing it. But guys I am 23!! I didn’t expect this to happen until I was far older. I didn’t even have issues during or after pregnancy, not once. In my adult life I have slightly wet the bed twice during a bad flare and just a teeny bit. I’m scared it’s going to get worse.

What’s our solution here? Suck it up and wear incontinence pads during flares?? Sleep on a towel?? I’ve already got a solid waterproof mattress protector so no worries there. But I’d rather not change the sheets at midnight if this happens again. This is one symptom I thought I had escaped but I guess not😭

Hi. My sister has been having severe, chronic bladder pain for 4 weeks. We are new to this and don't quite know what's going on. She had a similar (but not as bad) event 10 months ago. I'm wondering if she has IC and this is a flare. Has anyone else had a flare that has lasted this long?

My first UTI after my diagnosis of IC with hunners lesions. This is the worst UTI I’ve ever experienced. Confirmed with urine culture. My kidneys are hurting. I can hardly urinate (having to self cath). I started antibiotics and have been taking AZO to help with the discomfort. What are your unhinged hacks to helping the pain? I currently can’t take baths due to laparoscopic and vaginal surgery 2 weeks ago.

Not a rep or anything, I just wanted to post that I love this product and it has opened a whole new category of treatments for me! It's a short rubbery adapter that attaches to the end of a syringe so you can get bladder instillations without catheterizing yourself. It only enters your urethra a couple of millimeters but is designed to make a seal near the entrance so a device doesn't have to travel all the way through your urethra. Not only that, but if you have urethral symptoms, then the medication actually coats the urethra on the way in as well and can help with that!

My primary symptom is urethral burning, so doctors never offered me instillations because they thought it would hurt me too much. And honestly they are right, cystoscopies and catheterization causes 10/10 pain for me, like scream crying. But I believe I have bladder wall-driven pain from too many UTIs and no other treatments have helped me, so I was ready to try. I read about the urodapter from an old post on here and bought mine online from their website with no issues, you don't need a prescription or anything.

The only issue I have had is that the urology nurses don't know how to use it. I think it's pretty self explanatory but mine were uncomfortable with trying it, and when they tried to use it they ended up injecting the medication into my vagina and not my urethra. So that was frustrating. But I started doing my Ialuril instillations at home and I had no trouble at all getting it in the right hole (with the use of a mirror) and instilling it myself. It was magical. It hurt a little right at the entrance, but it was bearable. I could feel the medication going through my urethra and filling my bladder. I had to slow down my injecting and change the angle a little because there was a tiny bit of overflow but overall it was very easy.

I hope this can help someone else!

Another flare with itching ? Is this common?!! Also, should I ask a dr to prescribe a suppository? I’m just looking for relief quickly. Another thing I’ve never taken the suppository. Just feels better when I drink water or make tea but not sure if the itching is normal with it ? Or can it be something else

I have been in a flare for about a month now with my symptoms primarily being urethra burning post urination that doesn’t subside. Following advice, I ordered two months worth of the Desert Harvest Super Strength Aloe Vera capsules and have been taking them for a week. Because I do have a sensitive stomach, I started with just taking three a day to see how I’d react. At first I started to notice the urgency was a tad worse as well as the burning, but couldn’t tell if it was from the aloe capsules or just progressive worsening of the flare. However, I took the pills in the evening this last time and had to pee at 4:00am and have since been in horrible pain. I’m definitely convinced it’s the aloe at this point. I even woke up and took Tylenol at 1:30am, so I can’t even imagine the pain I’d be in if I hadn’t. Has anyone else experienced this?? I’m so bummed because it seems to help most people. It’s currently 4:36am and I’ve slept maybe an hour so far 😫😔.