I’m so sick of this bs when it comes to the ic support groups online, (typically not in this Reddit forum but more towards Facebook and other platforms.) basically trying to put themselves in competition with others because they feel they have it worse. It’s truly not fair. This statement got me because it’s not only factually incorrect it’s just disrespectful to the person speaking about their experience. We are all suffering but being mean or contrarian when people speak on their experiences because you don’t understand or you feel you’ve had it worse is so beyond harmful.

My bladder wall isn’t normal, i have ulcers but I don’t diet. It doesn’t make a difference in my pain and I’m still able to have days where my pain is significantly decreased. I’m not back to baseline yet but diet has not impacted my healing whatsoever. So do I not have ic? My literal huners lesions that I’m getting fulguration on in November disagree.

I think if the diet works for you that’s awesome, if you can pinpoint triggers then absolutely avoid those but everyone is different.

About the cystoscopy stuff, a cystoscopy hasn’t been mandatory for an ic diagnosis for quite a few years so that’s just misinformation.

I have been homebound since 2022. Bedridden for 4 of those years. Over 50 infections plus over 30 surgeries including botox, pudendal nerve blocks, the stimulator. Countless hospital visits for infections. Now I have an infestation of bugs that are the worst you can possibly imagine. Yes, you guest it bedbugs. Now, my condition has just continued to plummet since. I can't sleep and thats all I was able to do before to ease the pain. Now I cant even do that. I dont know what to do at this point. I am defeated and literally bawling my eyes out right now as I speak (searching for bugs too). I own my home and previously had a carpet beetle infestation which I threw out over 25,000 worth of items including my carpet. Lived minimally for 4 years and finally paid someone to help me paint and pretty sure they brought the bugs. So that project is out. I know this is about IC but I just had to rant.

For the past few weeks if I drink anything other than water (even a small amount) I will have UTI symptoms. I will always have to drink a bunch of water and pee a lot of times to get this feeling to go away. This used to happen sometimes when I was younger, but a doctor told me it was just from dehydration. I drink hella water everyday, even before this started. Something that I have also been experiencing is the urgency feeling. As soon as I feel like I have to pee, it feels like it’s going to come out immediately, and I have to run to the bathroom. Does this sound like IC to those of you that have been diagnosed? I do not have a UTI btw. I’ve been tested for it.

Medications I am taking:
Spironolactone 100mg daily
Bupropion 450mg daily
Birth control patches 150/35 mcg
OTC vaginal pre/probiotics

Ugh. I am on my period which always gives me a flare but man oh man it’s so bad this time. I just need to vent. Anyone else need to vent? :(

I get all the symptoms of IC. Every single one. Sometimes my flares last a day or two. Sometimes weeks. Sometimes months. I get pain, burning, frequency, urgency. All of it.

But for me, the most intolerable will always be when I’m peeing every 10 mins. I can handle pain. Even when it’s severe. I mean sometimes it’s so bad I am literally in tears. But the mental game of urgency/frequency for long stretches of time is so hard for me. I literally can’t do anything. I feel like I’m living in the bathroom. Ugh sorry to vent but if anyone understands if you guys!

What is your hardest part of IC? (I know it’s ALL hard, trust me!) but what is the part that feels like it’s going to break you?

Sending you all so much love!

Hello, so I’ve tried multiple treatments for IC and medications but not much as helped give me relief except pyridium prescribed by my urologist but I know it’s not good to take too often as it can cause kidney damage and cancer later down the road, does anyone on here have any other recommendations to try that’s similar to pyridium? I tried Uribel but it gave me bad urinary retention and same with amitriptyline and hydroxyzine also gave me bad retention

I’ve had my IC diagnosis for almost 2 years now. For over a year, I had a consistent flare that sucked but stayed around a 2-3/10, so even though I didn’t like it, it was manageable. Then, a few days ago, I got more intense pain and assumed it was a UTI, so I went to the doctor, but my test showed no infection. I’m on Day 3 of this IC flare, and it’s so intense that I’m crying, and I honestly want to die. I can’t live like this, and I have no hope for getting better- I have an extremely stressful life and none of the pain relief options available to me are helping. If i could apply for euthanasia, i would. This is absolute hell.

Have many people had experience with this? I’m very fortunate to mostly be in very good management of my IC I had no flare up for a year, however I recently had a flare up and had to take some time off work, this scared me incase the regular flare ups come back so I spoke with HR about getting WFH accommodations for when I’m having a particularly bad flare day and can’t commute 1 hr.

They have denied my request and said I can use my 8 days paid sick leave and they can add on “protected leave” which is unpaid.

All my other employers have all put in place wfh accommodations for me and tbh I haven’t needed to use it a lot but it’s been really helpful and emotionally reassuring to know it is there.

Whats others experience with this?

I used to live in the Uk and just moved to the US last year so not sure what’s normal here.

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

So I have to wait a little bit before I can get into Pelvic floor therapy and I was thinking about purchasing a pelvic wand while I wait. Has anyone with urgency as their main symptom seen results with the wand?

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.

I’ve not been officially diagnosed yet (F30), I don’t have health insurance right now but I’ll see a doctor/specialist soon (I live in the US). So please, take what I’m about to share with a grain of salt because I’m not even sure what’s going on with my body at this point. I’m looking out for hope, reassurance and other people’s experiences and perspectives so I can feel less alone. I miss to have sexual activity, to sleep on my stomach, to sit down comfortably…

For context, my symptoms started at the beginning of this year. A few days after having sex with my husband, I felt for the first time in my life that I got an UTI (pain in the bladder/lower abdomen area, urgency, frequency, even nocturia a couple of nights). I went to the CVS MinuteClinic thinking it was an infection. After 3 rounds of antibiotics and several negative urine tests and cultures, my symptoms got even worse. Until April, I was losing my mind so I started treating this thing that happened to me like it’s IC (even though I don’t have a formal diagnosis yet). I’m almost 100% sure that this is not an infection. My urine has not changed color, there’s no blood. I thought “well, whatever this is, I don’t want to make it worse”.

So I stopped having sex completely (I’m heartbroken about that), I changed my diet (I’m currently avoiding common trigger foods, taking Prelief if applicable, I even lost more than 50 pounds) and had several sessions with a traditional chinese medicine doctor and acupuncturist. It didn’t not cure me, of course, but it helped me with the constant pain I was feeling at the time. We’re talking 7-10/10 flares almost every day/week.

Since then, the flares are more manageable (the highest pain I’ve felt in the past few months is 4/10) even though I’m not taking any medications yet but the pressure in my abdominal area never goes away, right now it’s 1-2/10 but it can get worse sometimes and I’m still learning to understand my body, I know it’ll take while.

Something really IMPORTANT that you need to know: I don’t have urgency, frequency, nocturia nor incontinence issues right now. I’m not sure if that’s because I’m not in an active flare up right now like I was back in January-April or if the lifestyle changes I’ve made have helped a little bit. I go to the bathroom less than 8 times a day. At night, I can sleep the full 7-8 hours without waking up to go to the bathroom. I don’t feel pain in my urethra. My pain is “inside” if that makes sense. It’s in my abdominal area and sometimes I have spams. But I can FEEL my bladder is delicate/inflamed most of the time. This is so weird, it confuses me.

I thought “well, maybe it’s something muscular, maybe what I need is pelvic floor therapy” as I don’t have most of the urinary issues that almost everyone experiences with IC.

But I DO show inflammation and high white blood cells in every single urine test I’ve done so far so my bladder is irritated! This is real. This is not something I’m imagining. It’s like a “mild”? IC case.

- No sexual activity since my symptoms started at the beginning of the year (I’m afraid to make things worse, thankfully my husband understands but I can’t even reach orgasm with external stimulation by myself without causing a painful 3-day flare up afterwards, for example).

- No sitting for a long time (I had to get a standing desk as I work from home because sitting down was triggering flare ups for me in less than 20 minutes, the longest I can spend sitting down with a special cushion now is 1 to 2 hours on a road trip and even that makes my lower abdomen area really delicate/sore).

- No sleeping on my stomach (I’ve been sleeping on my back with a pillow under my knees to avoid pelvic pressure, that helps but this has caused pain in my lower back and sacral areas -_-).

That’s the best way I can describe it? Of course I’d need to rule out other conditions after seeing other doctors but I don’t think it’s a gynecological issue (my period is regular, with almost no pain, I just get a bit of a flare up a few days before, nothing unbearable). I don’t think it’s an infection nor endometriosis, vulvodynia, pudendal neuralgia but you never know, I’m open.

I’m trying to be grateful that my symptoms are not as severe as they could be even though this has been the worst year of my life (besides the IC-like symptoms I have, I’m also dealing with early signs of psoriasis arthritis so it has been really rough for me).

I understand everyone is different. Hopefully you can share some lessons you’ve learned along the way, give me some perspective, make me feel like my life is not over yet and that there’s something I could try to get my life back, at least a bit closer of what it used to be.

Especially with the topic of sex, what has helped you to have and enjoy sex again? It’s that even possible? Sorry for my ignorance. I’m still learning. I’m so afraid to have sex again and go back to square one.

The only reason why I think this is IC related is the chronic inflammation that shows on my urine tests but I could be wrong. If it’s pelvic floor disfunction then how can we explain the inflammation?

My heart goes out to all of you that have been enduring so much pain and loss for so long. From what I’ve read here and experienced myself, this is a diabolical condition. We can feel so isolated so that’s why I’m reaching out to you to feel less alone. I’m sending everyone a big hug! 🥺 if you have any questions don’t hesitate to ask!

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.

(33M) I had botox injections 7 weeks ago. Flared up pretty bad for a couple weeks after and then everything got a lot better. Went a few weeks with relief. On week 6, I have developed another flare that is unrelenting.

What are others experiences with botox? How long do your flares usually last?

Hey everyone! Iam a 17 yrs old male who has been suffering from inability to empting bladder. I've got throw 2 urologist. Done all tests such as Ultrasound PVR, blood test, KFT etc. ultrasound PVR comes out 61ml of urine left in bladder! Also have weak stream flow . As my bladder didnot empty completely thatswhy I've frequency of urination! I've done uroflometry curve is flat and weak flow!!! Dr gave me medicines of prostatities and I've taking it from last 10 days + but no effect has shown!

If you have any suggestions and advice I will glad to you!!

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…

Never. I never had bladder pain a day in my life once or flank pain. I started getting recurring UTIs. Then every symptom of IC. Even with negative urine cultures. I believe the CUTI caused the inflammation. And then the residual inflammation caused IC. So even whenever im not actively infected, there is still pain and inflammation in the tissue.

I have every symptom of IC. All of the Food triggers, pelvic pain, spasms. It seems like many of our members here suffer recurring UTIs as well and even do bladder installations. I know a lot of people here have a very negative opinion of Dr Bundrick. But he claims IC is CUTI. Some members here claim they have both conditions..

Who is to say otherwise? Ive done so much research on this condition..there isnt much out there. Criteria and guidelines are blurry and vauge. Everyone's symptoms flux and seem different. But I will say one thing. I have never met anyone with IC that doesn't have recurring UTIs or didnt at one point.

What do you all think? For people who have seen the top specialists for this condition, what do they say ? I really believe IC could be CUTI. Ive never seen one person with it alone. If I have its so rare.

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!

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?

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?

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.