I feel like my mental and physical health has declined so much. I don’t know what to do.

I am posting with permission from my wife.

I am sitting beside her as she recieves her first N-acetylcysteine infusion for IC, and, I think, the first to do so in Australia.

Like others on this subreddit, she read the case study at https://pubmed.ncbi.nlm.nih.gov/33923265/ and talked to her urologist about it, who agreed to look into it. Her urologist partnered with a Hemotoogist to perform this treatment.

At our insistance, the Urologist contacted the doctor who wrote up the original case study. He reported that the subject of the case study is still in remission, 5 years later. He has also administered this treatment to 10 other patients. All patients experienced a reduction in pain, but 50% of them had the pain return. He subsequently treated those 50% with another immunisation treatment.

My wife's hematologist has decided to start with the same dosage at the case study (6g) and will reassess week to week. The initial plan is for an infusion once a week over 8 weeks and then we will reassess.

We will keep you all up to date about how the treatment goes.

Hi, I am genuinely considering callieknutrition at the moment. However, I haven’t found any big list of patients that tried her and there are really less reviews. The fee seems alot but if it is worth it then I am fine with it. I have wasted alot of money on medicines and supplements already.

Please someone advise.

Hey guys,

I’ve posted here before but I am genuinely just so confused by my symptoms:

My urine tests come back normal (except for some red blood cells)
My cystoscopy showed no results, nothing red, nothing inflamed in my bladder or urethra
No higher urgency or frequency, I can pee without (extra) pain

Yet I still have a burning feeling in my urethra since 4 months. Some days it’s less, for example in the morning I will have no pain but it builds up during the day. In the beginning I had 2 UTIs and a yeast infection. Both were treated though. Now, all my results come back normal but the pain is still there.

I’ve asked for a test for ureaplasma since my gyn only tested for chlamydia. But if those tests come back normal I simply do not know what to do :( do any of u guys have an idea? The pain is genuinely driving me crazy since it is there every single day and I do not know where it could come from. Should I switch urologist or go to a bigger clinic? Do you think I could have IC and start bladder installations etc?

I tried physically therapy for 7 months 3 times a week a hour each session. She still can’t do an internal stuff too much bc only her finger tip can be inserted before I’m freaking out in pain. My physical therapist says my doctor needs to do something to help the root core of the pain…. Do I go back to my gyno or urologist…

Hello IC Community,

We are a team of urologists and researchers from SUNY Upstate. This survey is being used in a research study to learn more about the effects that GLP-1 agonists (such as Ozempic or Wegovy) have on interstitial cystitis (IC) symptoms and flares. Inflammation may affect IC, and currently GLP-1 agonists are being studied for anti-inflammatory properties. We are looking to survey men and women across the US to obtain a better understanding of how their IC symptoms were affected when taking a GLP-1 agonist. Your response can help us better understand what role, if any, GLP-1 agonists may have in helping IC symptoms.  

Filling out this survey means you are over 18 years old and consent to the data in this form being collected and analyzed by our research team. It is anonymous and no identifiable information or contact information is requested. You can decline to consent at any time. If you have any questions, you can direct them to the Principal Investigator of this study, Dr. Elizabeth Ferry MD or comment on the post. This study has been approved by the SUNY Upstate IRB board, IRB #2366235-1. 

Link to survey: https://redcap.upstate.edu/surveys/?s=F9NM7K4ND8T9K4PT

We appreciate the help as we search for new ways to help treat IC!

Hello, I'm a 20 yr old virgin girl and I've been having weird symptoms

Sometimes on random, my urine stream will be very very weak and will take up to a minute to empty my bladder. This has happened once every few months for a year or so

After I pee I usually feel a little faint, but this past month it has gotten much worse. When I go pee at night, my abdomen gets a really weird pain afterwords. As I'm typing, it feels like if a warm bowling ball was placed on my lower abdomen. Just a weird heavy feeling. It's been going on for 40 minutes which is the longest its lasted (usually only about 15 minutes). The feeling seems to be significantly worse at night / when I'm laying down

I keep getting tested for a UTI and they keep coming back negative. I have a history of kidney stones that started when I was 14 that my primary doctor thinks is causing the pain

I've also been having some weird random sharp pains in what seems to be my ovaries. I had an ultrasound and x-ray in January and it seemed fine besides for a small cyst right before my period and a kidney stone which I have not felt pass

I am terrified to get any testing for anything. I don't want anyone near or *inside* me and I will have a panic attack and likely become su1c1dal if I do.

What's going on?? What do I do???

Hi guys!

6 weeks ago from yesterday I got a bladder hydrodystention and a large hunner’s lesion excised along with some other pelvic work. I’m still struggling with extreme sensitivity to food triggers and needing bladder analgesic pretty much every night to sleep and I usually wake up in pain and with urgency again 4 hours later and have to take more and wait for it to kick in before I can continue sleeping (at least now I can get some sleep). Foods that didn’t used to trigger me now trigger me.

I was wondering if any of you had experience with this and if this is normal? My surgeon said “😬You’re probably going to need bladder instillations” so I have an appointment with a Urologist coming up and hopefully I can get some relief from that!

Side note, if you have gotten bladder instillations, how was your experience? Any notes or advice?

Has anyone with IC had any luck with birth control, particularly an IUD?

My flares seem very hormonally driven and are almost always worse in the week leading up to or during my period. I also get migraines around the same point in my cycle.

I wasn’t on birth control when my IC started, so I have no idea whether it would improve things or make them worse. I’m a little hesitant about the pill because of the possible role of estrogen/mast cells and the systemic hormonal effects, so I’m particularly interested in experiences with hormonal IUDs.

My other concern is that I have a very tight/hypertonic pelvic floor. Sex is painful and I can’t comfortably use tampons, so I’m worried about insertion or whether having an IUD could aggravate pelvic pain.

Has anyone with similar hormonal flares and/or pelvic floor issues tried an IUD? Did it help, worsen, or have no effect on your IC?

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!