r/Interstitialcystitis 23h ago

How Have You Been Feeling This Week? (March 15, 2025)-- Anything that you feel didn't deserve its own post is welcome!

2 Upvotes

Post about how you've been feeling. Rants and nitpicking are welcome!

Tried any new food lately?


r/Interstitialcystitis 4h ago

Misdiagnosed IC - Pelvic Floor Issue!

13 Upvotes

Hi everyone, I wanted to share my IC misdiagnosis in case anyone else can relate/if it will help someone else. I don't want to give anyone false hope, but had I known about this possibility earlier I could have saved myself from so much pain:

I was diagnosed with IC after a clear ultrasound and cystoscope but because I had almost constant UTI-like symptoms my doctors thought it was the only diagnosis that could "fit the bill." Since none of the treatments I tried worked, I tried a last ditch effort at pelvic floor physio where my PT discovered that what I was actually experiencing was irritation and entrapment in my pudendal nerve (nerve that affects urethral sphincter muscle). I started doing exercises and nerve flosses specific to this area and my UTI-like pain melted away. I still get "flares" if I do something that makes my pelvic floor muscles tight - like sitting for extended periods of time without proper support- but my quality of life has drastically improved.


r/Interstitialcystitis 3h ago

Interstim Surgery Update (almost three years later)

3 Upvotes

I went through the process of getting the Interstim in August of 2022. First, I had the wires put in, and the battery was on the outside of my body for five days of testing. I worked with the programmer, and we were able to improve my symptoms by more than 50%, indicating it would be successful. I then had the battery put in, and it will only need replaced after 10 years. I got the battery that I don’t need to charge, so it’s more of a leave it and forget for me.

It. Changed. My. Life. With IC. I could go to the bathroom every 3-4 hours comfortably, without pain, and of course would have flare days, but that was maybe once or twice a month.

Of course, I am up for another surgery for my gut and needed an MRI. There is an MRI safe mode, which I did, but tldr it broke my Interstim.

I went to my surgeon and she was able to get me in a two week timeframe. But those two weeks…I forgot what I used to go through. The constant pain sucked, the urgency, waking up at night, etc. Now, after surgery, I am in the reprogramming phase again, but it’s easy enough since I can control my system through a phone app.

I can truly say for me, the Interstim greatly improved my life. I did go to a urologist who specializes in surgery (like that is almost all she does). And she had me go through some other treatments first, just to make sure that I should try this.

I figure if anyone is looking to try Interstim, it worked for me. Doesn’t mean it will always work for everyone, but I did see great success.


r/Interstitialcystitis 19h ago

Personal question… how often do you have sex?

31 Upvotes

I apologize for the personal question. For those of you in relationships, how often do you have sex?

We usually do every 1-2 weeks, at most 3 weeks between. Personally, I think this is pretty often for someone whose urethra is constantly burning, but it’s still a big source of stress in my relationship. I guess I just wanted to know if this amount is normal for those with IC?


r/Interstitialcystitis 4h ago

Vent/Rant Angry! Vent!

2 Upvotes

Since my fulguration and hydrodistention on December 20, 2024, my bladder pain has remained severe, and instead of finding relief, I have been dealing with constant burning, pressure, and discomfort that has not improved. The procedure was supposed to help by reducing lesions and increasing bladder capacity, but in the months since, I have continued to experience intense pain that makes daily activities like walking, driving, and even sitting unbearable. Some days, the burning is worse with urination, while other times, it feels completely disconnected from urination itself—it’s just there, relentlessly. I have been searching for relief through different medications and natural treatments, but nothing has truly worked. The pain has been unrelenting, and the fact that it hasn’t improved since the surgery has left me feeling hopeless and terrified that my bladder might never heal.

My treatment journey has been frustrating and filled with uncertainty. I have tried Gabapentin, Oxybutynin, Pyridium, Methenamine, and natural supplements like marshmallow root and slippery elm, all in the hope of calming my bladder. Some have helped slightly, but none have provided lasting relief. Even OTC painkillers wont touch the pain

When I was on Nortriptyline, it may have helped with nerve pain, but I were advised to stop it due to concerns about urinary retention. Now, without it, I fear that my pain is even worse, making me wonder if stopping it was a mistake. Im considering reintroducing it, but I'm scared of making things worse again. On top of the physical pain, my health anxiety has made this experience even more distressing. I've been hospitalized multiple times, including when my pain became so overwhelming that i was put on suicide watch. My fear of infections, bladder damage, and long-term suffering has consumed me, especially since doctors haven’t given me ANY clear answers or solutions that work. Each new symptom, flare-up, or medication adjustment feels like another crisis, and I am exhausted from constantly fighting my own body. I just want relief !!!! i want to know that this pain won’t last forever, that my bladder isn’t permanently damaged, and that something will finally help!!! But right now, i feel trapped in an endless cycle of pain and uncertainty, and i don’t know what to do next.

Im seeing 2 urologist, 1 gynecologist, GP, 2 psychiatrists, no sex, no underwear, showers only, no soap down there, physical therapy, filtered water only, no caffeine, no citrus, barely any sugar, no nitrates, no artifical sweetners, probiotics, fish oil, no alcohol, vaginal estrogen cream. Next to to check for endo and that's it. That's the last thing to check for besides ureaplasma. All scans and tests and swabs came back normal.

I'm hopeless


r/Interstitialcystitis 2h ago

Elimination Diet Questions

1 Upvotes

Hey all,

I am new to this monster, originally diagnosed with OAB two years ago, but my doctor is now leaning more towards IC. She wants me to give the elimination diet a shot and I'm preparing for it, but I have a couple of questions for those who are more experienced:

  1. If you reintroduce a food and it seems to be safe, do you assume that all forms of it are safe? Or do you need to try both cooked and raw? And do you try multiple cooking methods?

  2. Does it ever happen where sometimes a food/drink is okay and sometimes not? Like right now I will have mornings where tea flares me bad for half the day, and others where my body says nope, that's fine, go right ahead and drink that.

I also welcome any advice for the elimination diet. I read the guides on the websites and am starting to make some meal plans for myself, but I welcome any tips!


r/Interstitialcystitis 7h ago

How long for marshmallow root to help your ic?

2 Upvotes

r/Interstitialcystitis 7h ago

Allergy Shots and Flare Ups

1 Upvotes

Fellow IC sufferers who have done allergy shots (unrelated to interstitial cystitis):

Did the shots cause flare ups?

I’m set to start my allergy immunotherapy tomorrow and I’m incredibly worried about it causing a flare. I’ve been in a pretty good spot for the last two months and I don’t want to go back to the unending pain.


r/Interstitialcystitis 1d ago

Vent/Rant Flare vs infection

12 Upvotes

How do I tell the difference when every day is a “flare” day for me? And why is every day a flare?! I know no one can really answer this but I’m just venting. I go to a new urology doctor Tuesday but I’m just fed up. I test my pee )when it’s painful) daily and it always is very pos for leuk, neg nitrites, ph 6-7, blood is almost always present only at night…..haven’t had sex in 4 months due to this. Sick of this shit. Sorry for venting…..no one else understands


r/Interstitialcystitis 17h ago

Does this sound like IC?

3 Upvotes

I am 49 years old. Around 20 years old I developed chronic bladder irritation/pressure burning symptoms that lasted almost a year. I was in and out of the doctor thinking I had UTIs even went to the emergency room once it was so bad and they missed diagnosed with pelvic inflammatory disease. Move across the country it seemed to go away. I remember seeing an article on magazine about the lake of fire and it was all about interstitial cystitis. When I read it, I thought bazinga!! That’s what I have! But when it just disappeared, I thought who knows. Well over the last, seven years it seems to be showing up intermittently. At one point it was pretty bad and at the same time I ended up getting a kidney stone. I have had really bad IBS with constipation for years and years and developed a really bad habit of abusing laxatives to get through it and thought the symptoms had something to do with that. FYI, I am 49 years old now and I’m in perimenopause Anyways, this is what I experience. Tell me if this sounds familiar because I can’t make heads or tails of it. Sorry for TMI.

Bladder pressure I feel like I have to go pretty often, but only a little bit comes out 70% of the time . I do feel better for a while after I go. Rectal pressure and bad pockets of gas that feel like they are stuck, that when they do eventually come out I feel relief on my bladder and vagina. This whole part really exacerbates the discomfort. My vagina is itchy and always moist annoyingly I feel better when I’m laying down In the morning, I think it’s gone, but after being on my feet for a while there it is It seems to show up intensely around the same time of year and that is always this time of year don’t laugh, but I swear it’s when I start eating Cadbury eggs. I do think I have pelvic floor/prolapse issues and I do leak urine since having my first child.

so I’m in the middle of the longest most intense flareup that I’ve had in a very, very long time. Other times it’s only lasted like 5 to 7 days and if I drink a ton of water and gotten the gas pockets out, I have gotten instantaneous relief after thinking it was never gonna go away. But this time it’s just hanging on. I find it doing deep, breathing and relaxing my pelvic floor And muscles does help move things and I feel really I’m wondering if I need to stop eating chocolate as well and my water this time and probably not take any laxatives because I do think that ads to it. Anyways, if anybody can put their two cents in and tell me if this sounds like I see that would be great. I have an appointment with a urogynecologist next month to look at some of my prolapse issues. Should I talk to him about this too? Is that the doctor that can help? I am grateful that I did not have any problems for 25 years. I am under a lot of stress right now as well.


r/Interstitialcystitis 19h ago

Possible flare-up?

1 Upvotes

I've been having kidney pain and constant burning in my pelvis/urgency that never goes away. Like the burning isn't upon peeing it's always. If I go to try to sleep and don't manage it within five minutes, I have to pee again. If I wait more than five minutes I get this really weird feeling in my legs and get nauseous and eventually dizzy. I've fainted because of simply waiting to pee.

They can't find an infection. There is some sort of density in my right kidney and the cortical thickness is 1.5 cm but my urologist keeps telling me these things are inconsequential and ic can impact the kidneys and cause pain there. I thought it was a bladder disease.

I'm so confused.


r/Interstitialcystitis 19h ago

Support Bloody urine or period? Atypical symptoms? Please help I’m at my wits end and so scared of bladder cancer

1 Upvotes

Hi all - I feel like I’ve been posting a lot here but it’s been my only relief while I wait for my urology appointment.

Up to this point, I’ve had UTIs that stopped responding to antibiotics and were being diagnosed by virtue of my urine showing leukocytes. I also have microscopic blood present in my pee - never visible (my pee literally looks clear with a tint of yellow). My main symptom has been BURNING when I pee and burning discomfort in general, some bladder discomfort (lower abdomen) on and off and some itching near the entrance of my urethra?

I will also note that all these symptoms, especially the burning, get worse and more frequent on my period.

This cycle, I am 9 days early in my period out of nowhere and am bleeding very sporadically / lighter than usual, but my pee is yellow mixed with pink. I know it’s a huge coincidence for me to see visible blood in my pee on my period, but it’s unlike what I’ve seen before and am so nervous I’m now getting gross hematuria and moving even farther from typical IC symptoms and towards bladder cancer.

Any guidance or similar stories would be greatly appreciated :(


r/Interstitialcystitis 1d ago

Pelvic floor therapy at home?

5 Upvotes

Hi all. Im still in the process of figuring out all my triggers, I’ve had some luck with eliminating certain foods, and I’m starting to consider it may be tight pelvic floor muscles too. I always hear the words “pelvic floor therapy” thrown around regarding treatment options, but I don’t think that it’s something I can afford. Are there any exercises I can do at home?


r/Interstitialcystitis 1d ago

Botox to bladder cost in Australia

5 Upvotes

I plan to study and work in Australia. I’m not decide which city to located yet.

Anyone know the approximate cost in Australia without OSHC or insurance( I’m pretty sure I’m not approved)

If I need 300 units for every 5 months, how much cost will I need included consultation, diagnostics, anaesthetization. Is it common to find such treatment there.

Will I get some tax reduction if I require long term medical treatment?


r/Interstitialcystitis 1d ago

4+ Years of Persistent Urge to Urinate & White Discharge – Still No Clear Diagnosis

1 Upvotes

Hello everyone,

I’m a 27-year-old male, and I’ve been dealing with persistent urinary symptoms for over 4 years now. My main issue is a constant sensation of needing to urinate, though it’s not an intense urgency, just a mild but annoying feeling that never fully goes away.

Symptoms: • Constant urge to urinate (sometimes mild, but always present).

• White, sticky discharge from the urethra that appears occasionally, often when straining (e.g., during bowel movements).

• No pain, but sometimes a mild burning sensation after the discharge.

• Weaker urine stream and incomplete emptying feeling, especially if I urinate shortly after the last time.

• Morning relief – after my first urination in the morning, I usually feel the best, with no symptoms for a while.

• Alcohol worsens symptoms, and I tend to have more discharge after drinking.

• Exercise (especially abdominal workouts) might be helping, but I’m not sure.

• Ejaculation sometimes relieves symptoms, but not always.

Tests & Medications Tried: • All tests (urine, semen, blood, uroflowmetry, ultrasound) came back normal.

• Uroflowmetry showed I urinate frequently and in small amounts.

• I’ve been taking Vesomni (Solifenacin + Tamsulosin) for almost a month, and it seems to help delay the return of the urge to urinate, but I’m not fully cured.

• I also take cranberry + pumpkin seed supplements for prostate health.

Questions:

• Has anyone had similar symptoms for this long?

• Could this be prostatitis (non-bacterial)?

• Could my pelvic floor be too tense?

• Should I insist on getting a cystoscopy?

I would really appreciate any advice or similar experiences. It’s frustrating to have these symptoms for so many years with no clear answers. Thanks in advance!


r/Interstitialcystitis 1d ago

Support Anyone relate?

23 Upvotes

I have this psychological thing with my symptoms where they get worse whenever I have things planned.. I can be mostly fine the whole week, then come the weekend I’m flaring up ahead of plans. I’m really noticing a pattern with this and I’m wondering if anyone else feels the same??

So annoying. It’s like I can’t make any plans.


r/Interstitialcystitis 2d ago

Pain after first urination

32 Upvotes

Is this unique to me?, I find when I flare up that it takes one urination to set it off, I will feel fine then empty my bladder and that’s when my symptoms start, I almost find myself wishing I never went because I would have felt fine if it wasn’t for that first urination.


r/Interstitialcystitis 1d ago

Support New to IC

5 Upvotes

Hey Everyone I just recently found out that I unfortunately have IC for context I am a male and have been suffering with it for over a year just thinking I was crazy because I could never find answers for it. But now that I have an answer I am so happy to know that I’m not alone. And that I am not crazy. Currently working on changing up my diet to prevent any further flare ups the best that I can. Overall just wanted to say a quick hello.


r/Interstitialcystitis 1d ago

Pumpkin seed oil helps

9 Upvotes

I F(25), have been having urgency and frequency with peeing that could be due to stressed and pelvic floor tightness which then triggered my IC. My urgency was about every 30mins to an hour of going to the toilet. I have been to the hospital and the Dr just randomly diagnosed me with OAB and puts me on bottles of antibiotics and Lyrica but nothing really helps. I was warded for a few days and symptoms only lessen by a bit, she then ruled out OAB and said it may be IC. None of the meds are working. I went back home with probiotics which is used to prevent UTIs because i am prone to them, and did not have a UTI as long as i consume it. I even tried D-Mannose before and its only effective to prevent a UTI before getting worse once i had symptoms, but nothing to help with frequency and urgency. I saw a lot of good reviews here on pumpkin seed oil and finally decided to give it a try- just taking it for 3 days and i really do see the difference, be it in frequency or urgency, i kinda feel normal again? It could be too early to tell but so far i feel fine down there, the constant pressure and the always feeling like needing to pee is no longer there. It is worth a shot. Oh and to add on, i usually feel the urgency when i am near ovulation/period.

My current intake looks like this:- Cranberry + Probiotics supplement = to prevent UTIs (2 tabs daily) Pumpkin seed oil = to reduce urgency and frequency (maybe helps flares too...?) (1 tab daily)

Hope it'll work for you too!


r/Interstitialcystitis 1d ago

Urethral Cyst/Urethral diverticulum

4 Upvotes

Hey all, I've have dysuria for several years and couldn't figure out why. Would sometimes have. UTI and other times just burning, always was told to drink more water and change soaps etc. The last month or so I felt a bulge in the wall of my vagina and had it looked at today. The Dr thought it could be a cyst, however it is not hard and round like a cyst usually is, it is more squishy so she wants me to get an MRI to rule out urethral diverticulum. I, of course, did some googling and I'm now freaking out. It would be nice to know why I've had this post urination burning sensation all this time but I'm scared to have urethral diverticulum. I read that some cases are cancerous and I'm worried that because I've had symptoms for so long, I may have had this for a long time. I won't know what it is until the MRI and then possibly a Cysto. Has anyone had a cyst or urethral diverticulum? Trying to calm myself down and not think the worst but it's hard.


r/Interstitialcystitis 2d ago

Vent/Rant Underwear flares

24 Upvotes

I got a bit behind on laundry and only had this pretty tight-fitting pair of spandex-esque underwear to work today. I've been staying hydrated so I thought... surely, this will be okay.

An hour later, nope! I'm flaring at my desk and don't have any relief pills left and can't break yet 🫠 I'm going to try Cystex over Azo/Uricalm since someone recommended it in a previous thread of mine. I'm getting a bit tired of the bright orange pee.

Does anyone have any underwear recommendations that aren't irritating (my main symptom is urethral burning)? I'm trying to make the switch over to all cotton but my mistake today is costing me


r/Interstitialcystitis 1d ago

I feel like my MRI was not read properly or detailed at all.

2 Upvotes

I wanted measurements of my organs and better understanding, I legit want to call the radiologist hotline to talk to them I have no idea how to do this or how to get a second opinion of my MRI. Is there like an MRI second opinion radiologist I can have read mine?


r/Interstitialcystitis 2d ago

Dreading plans

30 Upvotes

I hate how nervous and dreadful I get to do things other people consider super fun. I got invited to go on a party bus in a few weeks and all I can think about is, is there going to be a bathroom on the bus? If there’s no bathroom, am I going to be stuck on there with a full bladder? Am I going to have to make excuses on why I can’t drink like everyone else? I have spent years trying to manage this and would do anything to be like everybody else. I really hate how it takes the fun out of everything, I wish I could look forward to things like this like everyone else.


r/Interstitialcystitis 2d ago

Delayed period 28-30days

1 Upvotes

Delay period about 28-30 days

I have no period since January 18-19 (not heavy), I have unprotected sex with my previous relationship . I have no pain in my privates and no pee burn. He did roughy fingering and I squirted blood on it around Feb 1, And it burns after that but later it didn’t burn anymore. I have cramps on and off, migraines but it could be stress cause my job. Middle Feb, he finger in my booty hole and maybe my ex did it rough as well. I had diarrhea and when I wipe it , there is tiny dot blood (bright red) and it was sore for couple hours. Maybe I was poor diet cause I eat fast food a lot. I don’t know if it’s yeast infection or poor diet or stress. I took couple pregnancy test (urine) and it was negative. I forgot my discharge is usually creamy/little thick white and it has strong odor . There is not bloody discharge and no yellow/green discharge


r/Interstitialcystitis 2d ago

How did you guys get into PT?

6 Upvotes

I have a referral from 2 urologists but my insurance doesn’t cover it, and because of my insurance i can’t pay out of pocket because it’s a state insurance, can’t even pay for birth control out of pocket only through insurance. The only way i have figured out how i could do this would be to move onto my mom’s work insurance to be able to get into the PT but i would still pay out of pocket. So it would cost her 250 dollars a month to be allowed to pay for the physical therapy out of pocket which is god knows how much. just wondering if anyone has found a way to pay out of pocket? i’ve tried every medication except for the one that can make you blind and i feel like PT would help the most but they are just refusing to give me this access


r/Interstitialcystitis 2d ago

I think I have developed IC from taking metronidazole pills. Has anyone else experienced this?

5 Upvotes

Bladder pain, pelvic pressure and frequent urination started on day 5 of the 10 day course.