r/Interstitialcystitis

No bladder instills, medications/supplements, changing diet or pelvic floor therapy etc

I looooove a soda but I don’t love all the added sugar (I do limit it because carbonation anyway) but I’d love to enjoy a diet soda once in a while if it weren’t for the damn artificial sweeteners. Even stevia bothers me.

Why isn’t there any diet soda with like monk fruit or something? What do yall drink for fun that doesn’t have artificial sweetener?

Does anyone experience foot pain or extra sensitivity in their feet? I’ve had IC for 14 years and my feet have changed right away when I became ill. They are incredibly tender all of the time.

Well it’s been awhile since I’ve posted in this subreddit, but I’m currently dealing with what I thought was a horrible flare, but I’m now thinking it’s an actual uti or kidney infection. This past year, I’ve been dealing with horrible symptoms, such as urgency, frequency, and some occasional abdominal and back pain. When this started, I thought I had a UTI but after multiple dip tests and cultures, trips to different specialists and all that jazz, my urologist diagnosed me with IC. Since then, my symptoms have been more manageable with drinking more water and less caffeine and alcohol and taking Benadryl. But I still get flares where I’m peeing 24/7 or feel the urge to pee 24/7.

These past few days, I thought I was in a horrible flare. I had a constant urge to pee, but I assumed it was from drinking too much coffee and taking excederin migraine multiple days in a row (lots going on and I was very stressed lol). Then yesterday when I was at work, I went to use the bathroom and felt a sharp pain in my side. I suddenly felt incredibly lightheaded and nearly passed out! Thankfully, the lightheaded feeling didn’t last too long and I was able to go home and rest, but I still had a lot of pain in my right side and an almost bloated feeling in my bladder.

After resting and not getting much sleep last night, I decided it couldn’t hurt to get seen, so I called my urologist and sent in a urine sample, which showed signs of infection (trace bacteria, high wbc, trace leukocytes). My doctor put me on Macrobid and I’ve taken one pill so far, but the pain in my right side and back is just getting worse. Now, I feel like I can’t even pee because I feel so bloated. I also get a jabbing pain in my side when I pee.

I’m starting to worry that this uti may have progressed to a kidney infection and the Macrobid won’t be able to help. Or I’m worried I have a kidney stone which may be causing the uti. Either way, I’m just freaking out and in a lot of pain. I hate having IC because it makes it so difficult to tell whether it’s a flare or not, and it’s not super easy for me to get to a doctor all the time. I’m considering going to an urgent care to get my kidneys checked, but I’m not 100% sure of what to do. Ugh this just sucks.

What is the best brand to try.

TBC I'm not looking for explicit medical advice here, I'm purely seeking out anecdotal evidence on purpose.

So I am in the process of figuring out what is going on with my pelvic pain and I'm in the testing phase, but there seems to be a high likelihood that I have IC based on the fact that I have Chronic Idiopathic Urticaria (chronic hives). I thought it was kind of interesting that an IC friendly diet goes almost hand in hand with a low histamine diet. Finding out that IC is possibly related to autoimmune disorders or allergies made a lot of sense in my case. If anything, it's kind of crazy this didn't come up for me sooner.

With THAT being said, I have to give a short background. When diagnosed with hives, I was explicitly told to not take NSAIDs because NSAIDs can make hives worse (which is super ironic given the name, I know). I've had hives for 10 years now and because my condition is mostly well managed, I took ibuprofen from like 2016-2020, had one bad reaction to it that made me stop, and then a year ago, I had a doctor tell me that Tylenol could not help my pelvic pain and that I really needed to take Ibuprofen for it. I have been taking Ibuprofen, and my hives have been fine, so I'm not worried about a reaction. Finding out that my pelvic pain could very likely be IC (which could likely be tied to autoimmune problems) has made me conflicted.

My plan moving forward is "better safe than sorry" and go back to fully using Tylenol for my pain. It can't hurt to try an eliminate it to see if the inflammation goes down, right? I kind of just wanted to see what other people have been told: is it common to have bad reactions to NSAIDs with IC or to be flat out told "do not use NSAIDs" upon being diagnosed? Or is it the opposite? Is it widely known that NSAIDs are a "go to/gold standard" for pain? I'd just like to hear what other people go through or have been recommended. I don't expect there's a universal answer and I'm not looking for one, but it would be interesting to hear if anyone else is in a similar position. Thanks!

(Obviously if you have hives like me do NOT use me as proof that you can take NSAIDs. I have done so out of desperation and gotten lucky, you might not be so. And like I said, I'm not going to take or not take anything based on what people say here, I'm just curious as to what other people feel and have been told. It seems I'm already on a really good drug for IC and CHU, so moving forward, I'm probably mostly looking at making dietary changes.)

I’m waiting for official diagnosis and have an appt with an OBGYN first my symptoms coincide monthly with ovulation and right before my period, I also can no longer eat spicy stuff without feeling like my urethra is sandpaper the whole next day, and I’ve had two episodes of waking up to what I thought was a uti 7 months apart but negative cultures and was peeing blood so I realize they’re flares. I also realize it coincides with my IBS flares that follow my cycle, so my question is does anyone just endure? I’m almost to my mid 30s this is new to me and I am average height and weight but I’ve started working out I’m a busy person does anyone also just raw dog the pain? I am hopeful maybe I can get help with the hormone part and it alleviates this and also work on my pelvic floor but this feels insane to have it take over my life 😭

I haven’t gotten diagnosed with ic. I don’t want to self diagnose but I fear I may have it. I have been having frequent urination symptoms for almost 3 months now. it begun because I had started having lots of sex and drinking lots of diet coke. I was fine in jan and it came upon nowhere. I notice that when I have highly acidic things, it makes it worse. but when im strictly on water and gatorade, I feel better. I’ve gone to the dr and she said it wasn’t a uti. I am also diabetic and she said it was because my A1c went up a little bit to 7.1. I think she may somehow be right but I don’t think it’s the only cause. I burn really bad after sex when I go pee and I have a little bit of light pink spotting. I really feel like this could be ic. I tell my gf I think that’s what it is and she downplays like no you don’t need to be diagnosing yourself. I’m tired of feeling this way. I can’t even bring myself to work a full shift at work sometimes if it feels too bad. I don’t want to keep going back to my dr and she thinks im constantly complaining. I have tried azo pills and they only help for just a little bit. does anyone have any remedies ? im tired of feeling this way. I just wanna cry.

I’ve got MCAS and will occasionally get IC flares because of the MCAS after sex, any pelvic surgery (endometriosis) and recently got a flare starting microdosing mounjaro to try and reduce MCAS symptoms (managing these diseases is just hell!).

Anyway, two weeks into this latest flare I read about lactoferrin on here and thought I’d give it a go in desperation. It actually worked.

I felt less symptoms immediately and a week later I am entirely symptom free. Still taking the mounjaro and no issues.

I only took a 300mg daily dose as I was nervous of adding something new - it still did the job.

I recommend trying if you haven’t yet.

Hey guys, I’m feeling a bit freaked and was wondering if this has happened to anyone else before. I was just doing some of my PT breathing (diaphragmatic breathing in butterfly pose) and got a pang like I really needed to pee. I decided to hold it and go after I finished this minute of breathing, but got another pang and rushed to the restroom. Before I could even pull my shorts down I was peeing, I couldn’t stop or control it.

I’ve never had a problem with incontinence before, I’m wondering if the breathing relaxed my pelvic floor so much I just started going?

I’m going to call my physical therapist tomorrow morning, but I was just hoping to get some reassurance since I’m sort of prone to panic. I also smoked some weed before all of this and it’s not helping lol

Hi everyone. I’m a 19-year-old girl and I’m really struggling with symptoms that make me wonder if this could be interstitial cystitis / bladder pain syndrome, or something else.

My main symptoms are:

constant pressure / discomfort in the pelvic area

frequent urination, some times also every half hour.

symptoms come in waves (some periods better, some worse), and some triggers include stress or car and bus trips or even sitting still for long periods of time.

Also, if I don’t drink enough water through the day it burns a little when I finish peeing.

I saw a urologist and had an ultrasound, and they said everything looked normal. That reassured me a little, but I’m still suffering a lot. It’s been more than two months that I am feeling like this now.

I’m also dealing with a lot of anxiety, and I’m starting to wonder if stress or pelvic floor tension could be making everything worse.

Does this sound familiar to anyone with IC, pelvic floor dysfunction, overactive bladder, or anxiety-related bladder symptoms? How did you figure out what was really causing it, and what helped you improve?

Thank you so much. I feel very lost right now!!!

I simply can't take it anymore. Since December I've had pain when urinating. I've already taken antibiotics, had urine cultures done, had imaging exams. The urologist said it wasn't his problem anymore and prescribed a medication to be taken once a day to relieve the pain, but it doesn't work. That's the problem; there isn't a single time I urinate that it doesn't hurt. It's been like this since December! I'm tired, really tired! I don't even know which doctor or who to contact because I don't have money and only have health insurance.

Hi everybody! I got diagnosed with IC about 5 months ago and life has been hell as you may all know. I recently relocated to another country and I wanted to continue my treatment here, the specialist i have my eye on has a treatment called Platelet-Rich Plasma (PRP), and describes it as this in their web page: "PRP infiltration of the detrusor muscle is being used as an innovative and minimally invasive option for treating this condition. The use of PRP promotes cell regeneration and bladder tissue repair..."

I was wondering if anyone has undergone this procedure, i would like to know your experience with it in general, how was the process, how you felt afterwards, etc.

From what I understand this treatment is still very new and in an experimental phase, but i would love to know some first hand experiences with it before i choose to do it.

Other treatments they offer are Hyaluronic acid instillations which im also curious to know if anyone here has tried it.

TIA!

Hello everyone,

I’ve been on Mounjaro since November and I haven’t had any IC flare since then. Which is amazing for me because I used to have them weekly.

However I recently stopped Mounjaro and I am in a huge flare.

I believe Mounjaro helped my IC while on it.

QQ, has anyone else experienced improvement on a glp1?

Do you still make a low dose even if the normal weight was achieved?

Ty all!

34f, recently diagnosed with Grave's disease and HS

March 8 - went to a new OBGYN and had a painful pap. Experienced cramping, spotting, urgency to urinate and cloudy urine days following pap smear. I did have a yeast infection that cleared up with 2 fluconazole pills (I've gotten many paps done and this is the first time any of this happened)

March 30 - all symptoms gone except urgency to urinate and started experiencing lower back aches. Saw my PCP and she did a urine culture and urinalysis.

Now - just found out that my urinalysis showed high leukocytes, no nitrates, no blood, and normal skin flora.

I'm seeing a urologist next week to try to figure things out. Has anyone had this happen to them? I'm freaking out 😭

Background: I had an untreated bladder infection for 7 months in 2024-2025...I noticed sweet/weird smelling urine and urgency to urinate sometimes. Definitely did not feel like a UTI so I didn't see my PCP until 7 months later. My CBC showed wbc fighting an infection, urine culture came back with e.coli and it took 2 rounds of antibiotics to clear.

I’m trying to understand how my bladder reacts to certain foods.

When you eat a trigger food, such as tomatoes, how long after do the symptoms appear, and how long do they last?

Thanks :)

I’m 3 weeks into the elimination diet and my symptoms aren’t much better. After cutting out most of my favorite foods. This is so frustrating.

Maybe I’m just not that diet sensitive. Is anyone not diet sensitive? And how can i even tell what bothers me diet wise when theres all these other factors, breakthrough periods, stress, possibly allergies?

Maybe it’s more my allergies, stress etc I don’t know. I do notice it get worse when the weather changes, I’m congested etc. I don’t think regular antihistamines work, but I can’t take hydroxyzine with the amitriptyline, it makes me too tired. Not sure if it worked for that or not anyway when I was taking it before

This is just so depressing. I can’t work a normal job anymore. It feels like it’s messing up my life

I originally started bpc 157 and tb 500 mg for back and hip pain. I started to feel immediate results and started down a rabbit hole seeing everything that it might help. I’ve always had stomach problem which I suspected to be ibs because in stressful situations my stomach has all the symptoms. Then a week ago I started looking into if it might help for my ketamine induced cystitis. My IC was really bad. I was a heavy ketamine user doing over a gram a day. Having to pee every 30 minutes and having horrible pain at starting to pee because I had to really push with all my might to get pee to start going even though I had to pee every 30 minutes. I knew that ketamine induced cystitis could be permanent. That’s when I found out about the study done on IC on 12 patients. Saw the before and after pictures of the patients and just had a feeling it would work for me. Well about 4 days ago I went from forcing pee to come out to it just coming out how it naturally should. I’m now peeing about every 2-4 hours. I’m only two weeks into my cycle also. Last 4-5 days IC has not consumed every minute of my day like before. The stream is coming out full force without having to force it. I’m not saying this is for you but it’s definitely working for me. Whether it’s placebo effect or not it doesn’t matter. I feel way better. Anyone suffering from this I’d look into it. It might work for you. Wish everyone the best with their IC . I’ve never shared anything like this on Reddit but I had too in hopes it might help someone else. I’ll be commenting over the next few weeks on my progress or if it stops working.

Hello! I wanted to see if anyone had any advice on when or if they ever think their IC symptoms are actually a UTI. I am prone to UTIs although I haven’t had one in about 6-7 months (yay!) but I’ve been thinking about when my IC symptoms flare up whether there gets to a point where I should check to see if it’s actually a UTI. When get a flare up I usually wait to see if they pass and if they linger I then get a urine sample tested but I don’t want to constantly be getting a urine test when it’s just my IC. I don’t know if that makes sense but I’m just wanting to get people’s experience with balancing the two and any advice! Thank you in advance for anyone who would like to share 😊 also can private message if you’d feel more comfortable.

Has anyone tried the interstim of IC? Im in the trial period of it currently. Wondering if anyone else has tried it?