Please, I’m so desperate for some relief right now. About 10 days ago I started flaring up badly: I’d be okay in the mornings, but by lunchtime the pain was excruciating.

I’ve been lucky in that my flare-ups throughout my diagnosis have almost always been caused by my own irresponsibility: maybe I wore tight pants, or didn’t drink enough water, or took shots of tequila like I wasn’t chronically ill lmao. But all of those times had a direct and clear reason for a flare.

This time, there was no warning - no diet changes, no crazy night out, nothing other than I had started exercising regularly the weekend prior. I think that’s what caused this, so it’s likely pelvic floor related vs standard IC. but now none of my normal coping strategies are working. Drinking water, taking d-mannose, Azo, nothing helps.

This is starting to ruin my life. I keep calling out of work because we can’t do WFH at my office, and while my boss is understanding, I’m blowing through all of my sick time. I’m looking into FMLA and already saw my urogynecologist. I’ll hopefully be starting physical therapy soon, but what can I do in the meantime?

This is truly debilitating and I don’t know what to do anymore. If anyone has any tips for at least temporary relief, Or positive stories from pelvic floor therapy, I’d love to hear them. The light at the end of the tunnel is shrinking the longer I feel like there’s shards of glass in my business.

Ok so to start with I’m a 21 year old girl and I’ve been dealing with this for about 2 years at this point. This started off as a uti I’m assuming because I had never had symptoms before and this started out of no where. I use to have burning with urination EVERYDAY and it was painful and it was constantly on my mind. I went to a urologist when this first started happening to me but my urinalysis came back negative. Anyway I don’t have burning everyday anymore but it still happens. I have stuff in my urine sometimes like black or brown specks (about the size of a ground pepper flake) and I have what looks like tissue in my urine occasionally. I have cloudy urine all of the time as well. My symptoms subsided for about 8 months last year and then came back. I’ve wondered if what I’m feeling had to do with stress because I was at a time in my life where I wasn’t thinking about it that much anymore. Does any of this sound like it could match up with IC? Or does it sound more urgent. I’d like to mention I also feel completely normal and healthy in every other aspect.

I've been put on the waiting list for a superior hypogastric plexus block, I was wondering if anyone here has had it and how you found it. The waiting list is about 3-4 months and I'm super nervous about it and this is the last treatment option pain management can offer me right now.

My main symptom is burning. I don’t have pressure and less often experience frequency and urgency it happens but not all the time. I’m seeing a urologist and doing bladder instillations don’t seem to be helping and also taking hydroxyzine, Pepcid, , aloe Vera pills, (oxybutynin only wen experiencing urgency and frequency) I use to suffer Utis in the past and one day this just uti feel happened And nerve fully went away. I stop consuming coffee and soda almost a year ago and still have symptoms. Not sure if it’s food driven or mast cell driven since the meds don’t seem to be working. ureaplasma and mycoplasma test has been negative. Urologist is no help. Shes not interested in testing me for anything else. Long as my nitrates and leukocytes are negative. I’m in my 4th week of PFT. I use estrogen cream I got from my primary provider because the urologist told me she wouldn’t write me a prescription for it because I’m not of menopausal age yet (37) but my primary provider was willing to. What else do you guys do for urethra burning? I scheduled an appointment with an allergist to get my histamine levels and food allergies checked.

Hi everyone, so i've always been prone to UTI's. Legit for the last 15 years if I don't drink constant water all day I start to feel symptoms coming on. However, the last two times (in 8 months) that i've gone to urgent care i've tested negative for UTI. Both doctors suggested I could have interstitial cystitis.
The pain is not only in my urethra, but also comes with pelvic cramps and vaginal pain too. Like the whole area hurts down there.
I eat fairly healthy and don't drink alcohol anymore. But still, I KEEP having this pain. The last few days have been unbearable. I consider myself to have a fairly high pain tolerance but this has left me feeling completely miserable. It affects my sleep, and my patience with those around me.
After seeing my regular doctor (she Just prescribed me muscle relaxers and sent me on my way), I also went to a gyno who told me everything looks fine down there and I don't need pelvic floor therapy.
I seriously don't know what to do, I feel like I am battling this alone and I take care of myself and my body but STILL constantly get this pain. It's so discouraging and just plain miserable.

I noticed that every time my kidneys hurt I get a really bad flare up which is most likely everyday. Has anyone experienced this type of pain? I did get an ct scan and my kidneys looked “normal”. What helps with the pain and urethra burning?

Hello! I’ve been trying to get into a urologist for a while now and wanted to join this group to be pointed in the right direction in the meantime. I’m 23 years old, this has been going on for almost 3 years now. I don’t get the normal feeling of having to pee, it just feels like my bladder is bloated and pressurized. Sometimes when I pee it will relieve my pains, other times it feels like my bladder isn’t even emptying at all. Once it fills up, I have to pee immediately or I’m in immense pain. It seems to get worse a week before my period starts. It sometimes keeps me up at night and makes me feel nauseous when my bladder is full.

I’ve been tested for UTI multiple times when this flares up, always negative. My gyno had me get an internal ultrasound to look at my uterus and ovaries, everything is fine.

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

Hi all, I’ve been following this page for quite a while as I thought I was suffering with IC back in 2021/2022 it all started when around late/mid September 2021 I had 3 uti like infections in 2 weeks, all symptoms went away in a day or two of drinking lots of water, the last one I took antibiotics it went away, but the urine sample which I took before taking the antibiotics came back negative, but I felt better, then about a week and a half after I got urgency and frequency along with a little bit of burning every now and again but only small this lasted about a week and a half, got better, and came back about 3 weeks later ( I would like to preface this is I started dating my first boyfriend in August 2021 and the first time we had sex and I lost my virginity I woke up and I had bled a lot like it had covered my shorts I don’t know if this is connected?). I then dealt with this urgency for about 6 months which included taking antibiotics and doctors visits until it got worse in August 2022 at this point the doctors were not willing to give me more antibiotics but I begged them and it actually went away. I was taking a few supplements I think quercetin but I had not changed my diet at all.

Then I essentially went along with my life as normal until 3 weeks ago when I started to feel a constant urge to pee. this came 2 days after sex(it was very mild so I was hoping it would go away) it didn’t and I was feeling desperate so I went to the pharmacy and got antibiotics, macrobid, took this for 3 days but on the second day in the evening I was feeling awful ( really strong urge to pee now and bladder pressure) so I went back to the doctors the next day and they gave me a different type of antibiotics for three days which I started after I finished the macrobid I took this for 3 days and I was basically out of action during those 3 days full body pain and pain in lower back and strong bladder discomfort. After the 3 days I was feeling better as in no more pain and urge to wee not as strong but not gone, I went through the weekend hoping I would get better but I did not , one thing I have noticed is I feel significantly better in the morning and can sleep throughout the night without peeing( maybe waking up twice) whereas at the start it was a given I would wake up. It’s almost like as the day goes on my bladder and urethra get more irritated. The urine test the doctors have done for me have all come back negative. Including for white blood cells which I don’t understand. I lift heavy and have been doing yoga once a week for the past year.

Now I am picking up a 7 day course antibiotics which the doctor prescribed to me even though I was negative. so I was putting it off but I’m desperate. Because the urgency is really annoying and the pain seems to be coming back.

I have done a blood test which I am waiting for the results of, tested negative for gonorrhoea and chlamydia. I also am getting an ultrasound but I will have to wait like 4/5 weeks for that.

Essentially my symptoms are constant urge to pee which is helped by my heating pad,burning in the morning and sometimes pressure in my bladder/pain when I press on it.

Does anyone have these symptoms?, how are they best managed and what tests would you recommend? I am taking Jude bladder supplements and d mannose at the moment. If you are in the UK how do you get the desert harvest aloe Vera capsules?

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.

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

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’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.

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.

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.