I’m honestly shocked by what happened recently and wondering if anyone here has had a similar experience.

I’ve had more than 10 episodes that I thought were UTIs, but only two urine cultures have come back positive. Sometimes my urine tests show mildly elevated white blood cells, but the cultures still come back negative. Knowing cultures aren’t perfect, I’d been approaching this as a chronic or “embedded” infection.

I’ve also had two cystoscopies, and both doctors commented on how completely clear my bladder looked. No ulcers or Hunner’s lesions. My pelvic floor is tight, though. The terminology has been confusing: I was told I have “bladder pain syndrome, not interstitial cystitis.”

Then I caught a cold and started taking an antihistamine along with an H2 blocker. Suddenly, my bladder discomfort pretty much disappeared….My vulvar/vestibular burning also cleared up 🫪

And it wasn’t just my bladder. I’ve had ongoing diarrhea since having my gallbladder removed a year ago, and that suddenly stopped too—for the first time in a year. After feeling unwell for so long, having several symptoms improve at once was honestly unbelievable.

This made me wonder whether histamine could be playing a role.

Looking back, I tend to avoid a lot of foods considered high in histamine because they don’t seem to agree with me. My reactions also seem inconsistent—one day I’ll react to a banana, another day to mango. There hasn’t been one obvious food that causes the same reaction every time.

I’ve also had very high IgG results on testing, although I don’t know whether that’s relevant. I’m not saying any of this confirms MCAS; I’m just trying to understand what happened.

Where I live, the clinicians I’ve spoken to don’t seem familiar with MCAS, so finding someone to help me look into this has been difficult (I live in South Korea).

Has anyone here had bladder symptoms, improve with antihistamines or H2 blockers?

Which ones have you tried, and has the improvement lasted? I’d really appreciate hearing your experiences.

From recent events I've concluded that food isn't my main trigger atleast which is somewhat hopeful but then again it throws my condition into the bin of "you just feel horrible for big part of being awake and there is no sure way known to get it under control"

I’m trying to help a friend figure out whether her symptoms could be connected or if they’re separate issues. Has anyone experienced something similar?

Her symptoms/history:

Interstitial cystitis (IC): Symptoms started around age 5–6, diagnosed at 12–13. Bladder symptoms don’t change during her period but worsen with caffeine and fast food. Deals with this everyday.

Periods:
- First period June 2025, before freshman year of high school.
- No periods in July/August 2025; September lasted 8 days;
- December 2025 she had two periods about 2 weeks apart, each lasting 8 days; another period in January 2026 about 2 weeks apart from the last dec period.
- Now October 2026 and her periods can last up to 11 days with bad cramps throughout and heavy flow throughout the length of her period. Lower-abdominal tenderness can be worse when pressed during her period. She also says that the spot where she gets cramps can hurt when she presses it. Tampon insertion doesn’t hurt. Her doctor prescribed birth control as of this month, and waiting to see what happens.

Back: Fell during cheerleading about a year ago and still has pain in one spot on the left side that sometimes travels upward toward her spine. MRI reportedly showed early arthritis which is weird to me to be in one little spot at her early age.

Skin/circulation: Legs look mottled or netlike, almost like scales/blood pooling. My guess is Livedo reticularis or cutis marmorata: a netlike, mottled skin pattern that can become more noticeable with cold or changes in circulation. Blood pressure was on low side last time she went to doctor.

Iron: Doctor said her iron was borderline low and checked for anemia. She doesn’t have anemia symptoms.

Appendix: Had a CT scan involving her appendix; her appendix was removed due to appendicitis. That happened in November 2025 - then the periods happened 3 times in 2 week periods back to back for 8-9 days each time the next month December 2025.

Ultrasound: She may have had a pelvic ultrasound during her IC evaluation, but we don’t know exactly what it examined or showed.

This sounds like endometriosis, to me I think I see a connection between the bladder symptoms, appendix and period/menstrual problems. I don’t think her back problem is related but could.

My questions: Could she have endometriosis alongside IC, even though her bladder symptoms started years before her first period and don’t worsen during menstruation? Could endometriosis explain the painful/prolonged periods and some abdominal or ? Could the mottled legs and low iron be unrelated, or should she investigate other conditions?
Has anyone had similar symptoms, bladder or appendix endometriosis, or normal scans before eventually getting diagnosed? What specialists or tests helped?

( This is all the information I have I will try to keep this post updated with anything I find. This girl has been struggling with this for a long time and it’s only getting worse, pls help!!!)

Let me start by saying this is far from the first option. This is our final treatment before either Neo-bladder reconstruction or full removal. My doctor says my IC is one of the worst she’s ever seen. I have had countless Hunner’s lesions that have damaged the lining of my bladder. I’ve had multiple rounds of instillations, Botox, fulgurations with hydrodistension, and already did the max period of Elmiron. When I say I go pee often, I don’t mean 20 times a day. My bladder capacity is 150mL and I have to go between 30-70 times a day depending on my pain and water intake. I have read both good and bad things on this option, but I don’t feel I have any other choice. I can’t live my life. Just wondering for those who have gotten it, were your symptoms as severe as mine?

Hello,

I’m having an “endometriosis excision, with all procedures deemed medically necessary”, for my already diagnosed stage 3 endo. This is my second surgery for endo, my body reacted poorly to the first and I was unable to get up by myself for four days. This was before I was diagnosed with IC, three years ago my bladder was great! Oh, how I miss those days. I have a wonderful UroGyn who does my weekly bladder instillations and am on medication to help reduce frequency however, I’m still peeing or have to pee every 2-3 hours max. No matter how much sleepy juice they prescribe me, I’m either rolling around in pain from my endo or bladder or have to pee all night. It’s been over a year and a half since I’ve gotten 8 hours of sleep. We are going to try bladder Botox after my excision, also looking into long term catheter options if that fails. This is all just context to my surgical concern.

I asked my UroGyn about having a foley cath kept in for several days after my surgery. I’ve had one before and loved it. He made it seem like it was a simple request. However, during my pre-op with the endo specialist he insists it’s too much of an infection risk. I don’t know what they expect me to do? They expect most people to be up and moving, but my body just says “no” and I’m unable to use my core due to the immense amount of pain. It’s not expected to be a minor surgery, I can’t return to work for 6 weeks and imaging shows it’s worse than ever before. My body is being eaten away by a trifecta of chronic conditions. Even nerve blocks make my entire body angry.

So how to I advocate that I need a catheter? Or do I just accept that I’ll have to wear Depends? I understand they want you up and walking for gas pains, but that only works if you can stand. Would it be wrong to go to my UroGyn or ED after discharge to have one installed?

My IC has been under control enough for the past year and then since the beginning of October began ramping up until last Friday when I was in such excruciating pain I didn’t sleep. Saturday to urgent care where they said it was a UTI, gave me cephalexin and for a day or two I felt a little better. Started feeling crappy again yesterday and the culture results came in which showed 100,000 CFU/mL Streptococcus anginosus. Apparently for UTIs this responds best to penicillin or amoxicillin. Been on the phone all morning trying to get a change in antibiotics since I’m in absolute agony again. My stomach is also in shambles I’m guessing from the cephalexin. I don’t even know what to do anymore. It’s impossible to make doctor appointments and I literally feel like I can’t live another week like this. I’m not even convinced an antibiotic will help. I really need some support and words of encouragement bc I have two children and I don’t even know how I’m going to survive the next 48 hours in this kind of pain. AZO and baking soda barely touch it. It literally feels like there is a blow torch inside my bladder and urethra and any drop of urine that amasses in there feels like acid. Please help, if only to let me know that I’ll somehow get through this.

it's like fuckin SOUP it's crazy

I have always had frequent UTIs, so when I started feeling these symptoms I just figured here we go again. I did teledoc and was sent Macrobid. For the first time it was not relieving my symptoms, which it usually does right away. Fast forward to 3 boxes of AZO later, gyno visits, urine cultures, all STDs are negative. All STIs are negative. Mycoplasma and ureaplasma are negative. I know there’s something wrong. My urethra is so uncomfortable and has that frequency feeling and almost like it’s going to drip out. I went to the hospital yesterday hoping for some answers and they tested my urine and said bacteria showed up but I have to wait to get the culture results and that pretty much I have to wait until my urologist appointment on Monday. Tomorrow will be day 3 of taking Bactrim with NO relief. I’m not trying to be dramatic, but I’m really, really struggling over here.
I am miserable, uncomfortable, exhausted because I cannot sleep at night from the feeling. I feel so hopeless because what if this never goes away. My urethra just feels so wrong I can’t even describe it. And sometimes there’s throbbing down there too. Bladder feels so full as it would during a typical UTI. I’m really just lost and dying for an answer and if anyone knows of a way to get any relief PLEASE share because I have not been able to sleep AT ALL and it’s truly miserable.

I initially believed I may have interstitial cystitis due to the symptoms I was experiencing (barbed wire on fire in my urethra, urgency, pain, etc.) but my specialists said I don’t and they had no idea what was happening. They proceeded to prescribe me Mirabegron and send me to a physical therapist. Eventually my symptoms went away (for the most part, besides a mild flare up around the time of my cycle each month).. Well, they’ve popped back up (with some added ones?) and I found a different doctor who believes, given other things happening in my body, that it may not be a bladder thing at all and instead suggested it may be Mast Cell Activation Syndrome. Has anyone heard of this/able to shine some light on the subject?

September was hell. My biggest trigger is caffeine so from my last flair in March to September I was slowly reintroducing decaf coffee (decaf contains caffeine. I know, rude.). Anyway the cafe at work gave me a full caf at the start of September and well, I was out of action for nearly a month. £1500+ emergency urology fees and a combo of an extreme elimination diet (not even potatoes 😢), dialation during a cystoscopy, antibiotics and various painkillers, and the flair seems to have subsided and I'm a month free!

I'm back on absolutely zero caffeine though. I think the decaf was also slowly building up the inflammation so not even having chocolate (it contains caffeine, which I've discovered no one knows!).

Anyway, thank you for being a source of tips and solace. This illness truly sucks. I just want a chocolate biscuit!

Hi all,

A lot of my urgency comes from pelvic floor issues. Sitting during the day, especially in pants with thick seams, can cause me a lot of irritation and urinary urgency.

Any recommendations on comfy, stretchy pants without thick seams that are work appropriate (ie not just leggings?)

Hey everyone, I’m a 25F and I really need some advice or to hear from anyone who has gone through something similar. I have a history of a positive ANA (1:320 speckled pattern), a classic butterfly rash on my face, easy bruising, and a diagnosis of Lupus for which I take Plaquenil.
For nearly a year, I have been dealing with a medical mystery that completely escalated this past week, and I finally got a weird lab result that might be the missing puzzle piece. I want to layout my timeline to see if anyone thinks my severe "episodes" are being caused by this:
February 2026: My routine urinalysis showed abnormal white blood cells (1+ WBC Esterase), but zero bacteria and zero nitrites. Doctors were not concerned.
September 2026: I had a sudden, severe episode of agonizing flank and stomach pain. The ER doctor found kidney tenderness and heavy white blood cells in my urine again. They assumed it was a kidney infection from a UTI and gave me heavy IV and oral antibiotics. But a few days later, the culture came back completely negative for bacteria. They did a CT scan of my abdomen/pelvis everything was 100% structurally normal and healthy. The pain never fully went away…
October 16 (A few days ago): I had an episode of screaming, crying abdominal and flank pain so severe that I had to call [911](tel:911) and take an ambulance to the ER. This time they did a pelvic ultrasound—They found high white blood cells again, but the routine culture was negative for bacteria yet again.
October 19 (Two days ago): I unexpectedly peed my pants in public! It felt like my bladder muscles just completely gave out.
Today: A "Yeast Only, Culture" came back showing HEAVY GROWTH of Candida lusitaniae. All my STI testing and bacterial testing are completely clear.
My doctor just called me in Fluconazole (150mg, two doses taken 3 days apart) to treat it.
My questions for you guys:
For those with Lupus or Interstitial Cystitis, have you ever had a heavy fungal overgrowth cause episodes of screaming-level stomach/flank pain and bladder spasms so violent that you lost bladder control?
Do you think my September ER antibiotics accidentally wiped out my good bacteria and caused this rare yeast to absolutely explode and trigger this massive October 16th ambulance episode?
I am so exhausted from being told my imaging is clear while being in the worst pain of my life. Any advice, insights, or reassurance would mean the world to me right now. Thank you!

Hey! I’ve been on amitriptyline (25mg) for about 1,5 weeks. How long did it take for you to start noticing improvement in symptoms? My main problem is bladder pain.

Thanks ❤️

So I recently underwent a laparoscopy and got diagnosed with Endometriosis and IC after having the worst pelvic and urinary pain this past year, which all started since I got a UTI in January. I've always had pelvis and urinary issues but it has never been nearly as bad as since I've gotten my first UTI—these symptoms have been the worst and most uncomfortable pain I've ever experienced; I've had (and still have) constant one-sided radiating pelvic pressure on my left side, a feeling of lightning bolts in my crotch after urination (that usually flares the worst during my period), alongside painful intercourse (every time it'll feel like something is painfully internally pressing on my bladder), and aftewards, intercourse will trigger UTI-like symptoms for DAYS with no infection present.

I got the mirena inserted during my procedure in hopes of preventing new endo growth and stopping period flares, but now I'm feeling frustrated as it's been a month since my surgery and I'm feeling the same symptoms, if not worse because I've been spotting/bleeding everyday since. I was taking a probiotic because I'm worried of getting another yeast infection from constant liner/pad usage, but these past few days I've been having a terrible IC flare with urinary spasms and just overall uncomfortableness down there after peeing, so I bought a new probiotic because the one I'm currently using has cranberry in it, which I read is a common trigger for IC (I had no idea). I also was reading that caffeine is a trigger which is so frustrating as I'm a full-time student with a busy schedule who frequently needs an energy drink to survive the day. I just want to be able to have my life back and not live on restrictions for the rest of my life.

This is all to say that, now I've been going down a rabbit hole on here trying to figure out a good supplement regimen to help manage these symptoms but everyone says something different and I don't want to end up spending 100's of dollars on products that I don't actually need or won't end up using, so if anyone has recommendations of what has actually helped them and what is (and isn't) worth it, please let me know. Also if there's any treatment options worth looking into please let me know!—I did PFT briefly before my surgery and will be returning to it soon for hypertonic pelvic floor issues. I've also done Pelvic Rehabilitation Medicine's PRM protocol nerve injections, but it didn't give me any relief. :/

Does anyone find it helps or makes things worse? It's been suggested by a friend but Im starting to come out of my flare I think and I don't want to rock the boat !

Hey everyone. This is a rant because I’m so upset about what I’ve lived through and what I now have to deal with, I got a copper IUD about a year ago, and I had it removed about 3-4 months ago. My battle started as soon as they inserted it, I had a reaction that made me black out on the table then I had incurable sickness for 3 days after. I battled with chronic BV and had enough to the point I removed the damn thing (the IUD created a biofilm) after removal I was finally treated permanently from BV I have not had an infection since, but I was still having intense urinary burning, frequency, and over all discomfort it felt like the worlds worst UTI. We did all the testing under the sun including mycoplasma and ureaplasma. All NEGATIVE. that’s when I got my Interstaitial cystitis diagnosis. My doctors at first tried fixing my medications (I’m a C-PTSD survivor so I’m on mental health medication) then I did some research on my own, I had UTIs as a kid but not very often as an adult, but you know when this all started? After the FUCKING IUD was inserted. I have had a healthy normal life until my iud. I’m so frustrated! I did some research and found i wasn’t alone. It’s gotten so bad I only work one day a week at my job because of my discomfort. I’m so frustrated! If anyone has things that helped them with their pain and urgency to go all the time I would really appreciate the advice. I feel like I’m choosing between my work and pain and I’m so sad about it. I just want to feel normal again

I’m 15 days post hydrodystention I had it for diagnosis purposes I’m bitterly regretting it - I didn’t do research and trusted my doctor who said it helps him to see things. I’m in pieces I’m having the most severe flare of my life and nothing is touching the sides I can’t sleep. I’m thinking my life is over - and I’ll never get better. Severe urgency, is main symptom constant pressure, discomfort - has anyone got any positive stories to share who went through this and when did they turn a corner?

Please no doom and gloom my mental health can’t take it.

37, AFAB. Last night I passed urine, no issues, after about 5 mins started having bladder pain which got steadily worse, to the point where I passed out. After googling I got worried as bladder pain and fainting is apparently bad. The pain eased after about 30 mins. The Dr seemed a bit confused as to what it was, as I dont have classic UTI symptoms like blood in urine and pain when passing urine. I now have low level bladder pain when I move. Anyone else experienced this?

What bc do you use? I currently use one that contains drospirenone and ethinyl estradiol and am thinking whether to change it to something else or not

Just got diagnosed with ic a couple of days ago and was recommended to follow a very restrictive low-acid diet (“IC-Smart” diet) for a few months before reintroducing foods to determine my triggers. Really struggling figuring out meals as all of my favorite foods are now a no-go. Does anyone have any recipes or meal prep ideas they can share?

i will note it is only fun for us after i’ve changed everything, 😅 but it was super easy to make and very yummy even after killing half the ingredients, which is something we don’t find often! i will also add, EVERYONE HAS DIFFERENT TRIGGERS, TRUST YOUR BLADDER! i crossed out the naughty ingredients that i left out. i put a question mark next to spinach because i tolerate it fine in small amounts, but it is high in oxalates that can trigger some. parmesan cheese can also be an occasional trigger when used in large amounts, but this recipe uses such a small amount it was tolerable. always check your italian seasoning ingredients since some have secret evil inside. i used my own mixture of basil, thyme, oregano, and rosemary. and lastly, i would recommend avoiding this recipe overall if you don’t tolerate dairy well. i would recommend checking out the link to the recipe since it mentions extra tips on timing to keep the chicken moist. i used breast filets that only needed 2.5 hours in the crockpot. just had to share because it was so yummy and so easy to make IC safe, hoping it can at least help 1 person! https://www.thereciperebel.com/crockpot-tuscan-chicken/

"I can eat a diced up tomato. What is it going to do, hurt me?" - quote from man hurt by tomato

Through all of the pelvic floor treatments, surgeries, hysterectomy, scar tissue, nerve things, and changing my diet ... After months of remission..

Not even a whole tomato. It only took a little bit to send me into a flare so bad I was up until 4am.

Marshmallow root tea has helped! Ol' reliable.

Let's see if I remember this next time I'm faced with a tomato. I probably won't.

"Maybe this time, it won't cause a flare!" Don't fall for it! 😭

If my IC bladder pain comes back I'm ending it. I am so grateful that I'm not in this amount of pain for the past 6 years but I can't do it again. The burning is horrific and traumatizing and these damn doctors won't even give pain meds so actually work. I have a plan in case this pain comes back.

it seems like everytime i flare its either better or worse than the last one, which in return sends me spiraling if that worst ones are my new “permanent” and my baseline is progressing.

anyone else?

Espescially I realizes this lately I take around 4-5 seconds to start peeing. Is this normal? Im male by the way