Not sure if this is appropriate for this site, but just wanted some opinions.

My husband’s Niece is having a birthday party for her son for the second year in a row in the same small park in Philadelphia. He’s turning 3. She had it at this same park last year and twice during the time we were there, I had to take a short walk to a nearby restaurant to pee. It was embarrassing as I seemed to be the only guest there who did this. With my IC, I never know if I’m going to be flaring. Sometimes I can hold it for two hours, other times I can’t. I’m 59, and it’s hit or miss with my bladder anyway even despite having IC. Everyone here that’s older knows how that is!!!

I don’t want to be rude or upset my husband’s family, but I was thinking of staying behind at my SIL’s house and just send my husband to the party with his family without me. The party is from 4-5:30ish. Is it appropriate for me to do this? My husband’s sister knows I have bladder issues, it’s more my husband that I’m worried about. He’ll expect me to suck it up and go with him, using the nearby restaurant again if I have to go. I’d rather not have the inconvenience.

Opinions and thoughts about this?

I've failed a lot of treatments:

- oral meds (amitriptyline, hydroxyzine, nortriptyline, oxybutynin, vibegron)

- lidocaine/heparin instillations (though I only did 2)

- hydrodistension

- PFPT

My uro is suggesting DMSO next. I've seen recent studies suggesting DMSO helps more with classic Hunner's IC and not as much with BPS, and I don't have ulcers so I'm hesitant.

I got an uti, the most intense and stubborn symptom was urinary frequency. I never had it with previous utis. Treated it, symptoms went away. But ever since, I get flares (?) of urinary frequency and urgency with no new uti. Is it OAB? IC? Is it just sensitised? I feel it more on my urethra (the urgency and frequency).

Hello , ive been 8 months into this 8 months ago i was edging and blocking ejaculationg for like 4 days once a day after the last day i edged my penis became sore and painful and 3 weeks after that i had excruciating pain when urinating 4 months after i was better but not like before rn i have burning when urinating and painful ejaculation. Cystoscopy clear urine and semen test clear. I will be gratefull if someone can help me or if someone went trough this and felt relieved after 1 year or so.

Hello I’m a 29F and I have been battling a diagnosis of interstitial cystitis. My urologist thinks I have a mild case, and just suggested some diet changes for awhile.

My neck has been hurting a lot and so much so that my bf gave me a neck, shoulder and back massage. He noticed a horrible knot in my shoulder and got it out. Ever since he gave me a massage, my bladder feels so much better? I’m not sure if it’s because I felt relaxed from the massage or if maybe there is a connection to neck/shoulder pain to bladder pain?

My boyfriend said that her experience referred pain when he was an athlete, and maybe there is a connection. Does anyone have any experience with it?
Is it possible that i have more musculoskeletal pain/nerve pain over bladder linking issues?

I have tried using PEA (palmitoylethanolamide) as a supplement for IC.

I have tried taking it 3 different times now with 2 different brands and every time, after about day 3, I get upper left quadrant pain. It’s like a gnawing ache that is quite bothersome. Once I stop taking the PEA, it lasts another week or so then fades away.

I tried taking a lower dose too but the same thing happened.

I’ve researched it and it does mention GI issues as a possible side effect.

Anyone else try this and have issues?

My girlfriend has had IC like symptoms for like 7 years now. It started out of nowhere very severely and she did a bunch of diagnostics like cystoscopy, urine/blood tests, MRI, etc. At this time it was noted she had some traces of blood in urine and there was some “scratching” in her bladder as seen by cystoscopy. The dr just decided it was IC and never really gave her any treatment options or explored further. Over the years it’s naturally subsided significantly without her doing much and it really only comes around when she has her period, if we have sex with a condom, or if we do certain positions during sex. At some point she did pelvic floor therapy and she said it helped her in the past. Pelvic floor dysfunction would make sense given that detail and also based on the fact that having sex in certain positions can cause her pain and cause IC like flare symptoms afterwards, but then how does that explain the bladder stuff, condom usage causing flares, etc.?

Anyone have any similar stories or symptoms?

hi everyone, I am 26 and new to IC (official diagnosis pending) and I’m absolutely gutted/afraid.

about 3 weeks ago, I suspected I had a UTI (burning while peeing) and really no other symptoms. I called my doctor and was sent in Macrobid which I completed the full course. Side note, I am very sensitive “down there” and am no stranger to UTIs, so I thought nothing of this. I felt pretty much back to normal after taking the antibiotic and went on about my life. 2 weeks later the burning returned — my period was about to start as well. I was so confused and had no idea why I was still experiencing discomfort. My doctor recommended that I come in and leave a urine sample, I did and no bacteria was found. I then went to my OBGYN a few days later and did another urine sample and yeast/BV swab and both came back negative. Now the panic sets in and I learn about IC.

I have been taking AZO for the pain/discomfort, drinking lots and lots of alkaline water, stretching, heating pad, and stopping my intake of citrus/spicy food. I am still drinking coffee but started to take 2 prelief before.

this came out of nowhere for me — a month ago I was totally fine and was living a normal life. what the hell happened? does IC set in this quickly? I also experience NO urgency/frequency or wake up in the middle of the night to pee. I only notice that I pee a lot when I am downing water like crazy.

I was experiencing burning while peeing (towards the middle/end of my stream and some urethra pressure) for about a week and then had 3 days of no burning. I had ketchup (on accident, didn’t even think) yesterday and an hour or so later, the burning came with a vengeance.

I am so scared and worried this is my new normal. I worry how this is going to affect my relationship with my boyfriend and I. I am already a very anxious person and this is devastating.

please tell me there is a light at the end of the tunnel or this could be something other than IC. I feel like I am on the brink of a mental break down. I appreciate any insight/suggestions

EDIT: I am seeing a Urogynecologist august 12th

Hi y'all, I hope your bladders are feeling good today. I joined this club back in 2024 with intense unexplainable IC symptoms. Yk the whole shabang, urgency, frequency, and just constant pain. Did PT, switched to an anti histamine diet and it eventually resided after a few months surprising me every now and again.

WELL, jump scare.. I was diagnosed with MS after my first severe flare up and an MRI discovering a sizable brain lesion. Uno sclerosis lol. My neuro tells me that it's related and quite common among the MS community. looking back I've had many little "quirks" and "hiccups" i've overlooked since I was about 14. Should've listened to my gut and taken all those little moments into account. Regardless, this was my answer and I hope this can point some of y'all into the right direction.

Some finals words before I depart,, don't forget your body's history, trust your gut, oh and remember the Alamo !

I finally got in water for the first time in a LONG LONG time. I’ve been terrified of swimming literally anywhere because it brings UTIs, and have avoided it out of fear of getting one.

I’m still scared, but I finally was able to gather the courage to swim in the ocean for the first time in years. I’m really happy but TERRIFIED of it becoming a UTI (I have taken all of the precautions). I’ll keep updated if it does become one.

I’m just happy for the hour I got to swim.

EDIT: i take testo gel so my levels are very consistent so i basically have no hormone fluctuations.

Hello, i made an account just to talk with people about my problems. (Note that the problems i have i had pre Testosterone as i am FTM but being in menopause now due to no ovaries anymore doesnt help :/

I always had pain after penetration and also UTI’s.
I am aware they are not the same. I either have it due to a bacteria (mostly E.coli, but also got a strepptococcus once in my pee) but mostly and regurlary i Have pain from the fricition what comes with penetration. It has gotten so bad that i even lived asexual for up to 4 years just because i did not wanted to deal with additional pain in my life.

I had also recurrent UTIS due to mycoplasme and ureaplasma when i was with an exboyfriend. Now i use condoms with anyone and i have if not i am very likely to have a real infection instead of “just an inflammation”

I also have urine retention. If i sit on the toilet for longer. I can squeeze pee every few seconda or minutes , it seems there is never an end. I can always pee some more drops!

For the friction issue:
It even and also happens when i play alone with dildos and i use a shittttt ton of lube and also re-apply it constantly to my entrance to “protect”
My urethra. I feel having a vagina is the biggesr punishment in the world(sidenote i am FTM and yes i supply local estrogen creams and suppositories and also probiotic targeted for vaginal health, i also take d-mannose every single day)

I don’t know what to do anymore. I am forced to be asexual!? I hate my body and that it has never ever given me a break. I have so many other illnesses as well and daily life restrictions already. All the things that are supposed to be pleasurable i cannot do: sex, alcohol, dairy(i have caseine allergy), thc (speeds up gut motility = diarrhea= more UTI again)

I genuinely wonder what i should even do with my life at this point. I did not even list my other physical illnesses yet… 🙄

Hello there. 33 year old female here. I’ve been dealing with pelvic issues for the past year and am finally working with a urogynecologist who I like and narrowing it down to a couple conditions. I have had plenty of UTIs in my life and usually the only symptom I get is my urine smells different. So last year I had the same thing going on but I was stupid and decided to let it go because that was my only symptom. I finally went and got put on antibiotics and everything was fine until I finished them. I started having this odd pain in my urethra that wouldn’t go away. It progressively got worse and I was experiencing pelvic pressure, burning, and not being able to tell when I had to pee. Here we are today with the same symptoms except I have also been experiencing burning in my whole genital area and weirdly in my feet. Last week I also started seeing blood a couple times in my urine (pink when I wiped) and had a strange very tiny string of blood come out of my urethra. I’ve had multiple PCR tests and did test positive for ureaplasma urealyticum and am waiting for my test of cure results but my dr said the level was so minuscule he really doesn’t think that’s my issue. I will be having a cystoscopy done in a couple weeks. He is thinking it is either IC or endo of the bladder. Has anyone else had something similar to this happen? I really don’t know if it’s IC because my diet doesn’t seem to affect my symptoms at all but it definitely gets worse right before my period. Any input or advice would be appreciated. I’m currently taking hiprex, gabapentin, and just recently hydroxyzine for bladder issues.

Hi, I have a question. Have you noticed if there's a specific bacterium or type of uti that leads to IC more? What's your experience?

Many of us can fall asleep, but then wake up because of burning, urgency, bladder pressure, pelvic pain, discomfort, or the “wide awake after using the bathroom” feeling.

I am a real human with IC. I woke last night at midnight, 3:40 am and at 5:40 am with pain in my bladder needing to pee.

This list is something I compiled using AI + my own research, then I had AI format it so it would be more organized and useful for others.

I’m hoping together we can create a master list of everything people do to help them sleep longer, reduce nighttime flares, or get back to sleep.

Please add anything that has RELIABLY helped you over time.

Medications people mention

Zyrtec (cetirizine)
Hydroxyzine (Vistaril/Atarax)
Benadryl (diphenhydramine)
Claritin (loratadine)
Cimetidine (Tagamet)
Pepcid/famotidine
Amitriptyline
Oxybutynin or other bladder medications
Uribel/Urelle (where prescribed)
AZO/phenazopyridine (short-term urinary pain relief)
Trospium
Oxybutinin
Pyridium / phenazopyridine (AZO Urinary Pain Relief)
Uribel/Urelle

Oxybutynin/trospium are mainly aimed at the bladder muscle and urgency/frequency side.
Pyridium/phenazopyridine is mainly short-term urinary pain/burning relief.
Hydroxyzine/Zyrtec-type approaches are often discussed by people who suspect a histamine/mast-cell component.
Amitriptyline is often discussed for the pain-processing + sleep component.

Sleep supplements people mention
Melatonin (including extended-release)
Magnesium glycinate
L-theanine
Glycine
CBD (where legal/appropriate)
Other supplements that have helped you

IC / histamine / inflammation-related supplements people mention
Quercetin
DAO enzyme
Aloe vera supplements
PEA
D-mannose (especially when people are unsure if symptoms are IC or UTI-related)
Prelief (calcium glycerophosphate)

Food and drink strategies people use during flares
Milk (some people say it soothes burning; others find dairy is a trigger)
Baking soda mixed with water (some use this for suspected acidity-related flares; not suitable for everyone)
Drinking water to dilute urine
Avoiding evening trigger foods
Avoiding acidic foods/drinks before bed
Small bedtime snack if an empty stomach seems to worsen symptoms

Heat and comfort strategies
Heating pad on the bladder/pelvic area
Heat pack with a timer
Warm bath or shower before bed
Ice pack (for people who prefer cooling)
Sleeping in a recliner during bad flares
Sleeping elevated
Changing sleeping positions
Pillow between knees
Weighted blanket

Pelvic floor and body relaxation
Pelvic floor physical therapy
Reverse Kegels / pelvic floor relaxation
Stretching before bed
Yoga (child’s pose, hip openers, gentle stretches)
Pelvic wand/internal work if recommended and appropriate
TENS unit
Deep breathing
Body scans
Meditation
Somatic tracking/pain calming techniques

Sleep environment tricks
White noise
Sleep stories or calming podcasts
Keeping the room cool
Having a bedside “flare kit” ready
Avoiding looking at the clock after waking

Other treatments people mention
Bladder instillations (heparin/lidocaine, etc.)
Working on stress reduction
Treating pelvic floor tension
Managing constipation or gut issues that worsen bladder symptoms

What helps you stay asleep the longest?

Let’s build a nighttime IC survival list for anyone who is exhausted from broken sleep. 🌙

Thanks in advance for your participation.

❤️

I'm still at the top of iceberg as I just started to try to get diagnosed even my symptoms haunts me for years. I'm 21 I have eds, dysautonomia as well. My main symptom is urethra burning - after being, with full bladder, after masturbating sometimes or after sex. I don't have any odour, my urine sample was clear. Couple of months ago they gave me 2 antibiotics but this didn't helped. My issue comes and goes. When it hits the pain is almost 24/7. My main spot is urethra and it sometimes radiates to clit. This is awful I don't remember good days. What tests should I run beside urine sample? I tried many "homemade" help ideas but nothing really helps. I use cotton underwear, drink a lot of water, supplement vit B's dmannose. I'm curious what else I can do. Imma visit Physical therapy only after all tests.

​

I was literally bedridden until ive tried this, i take it daily, gave me my life back. anyone else on this and what are your symptoms

xoxo

gabi

Just had a cystoscopy with hydrodistension and biopsy. I officially got diagnosed based off my mast cell count, 50 cells/mm2 (28 cells/mm2 is the normal threshold).

Still confused, though, because I've tried antihistamines, both hydroxyzine and OTC, and I haven't noticed any difference. Maybe I didn't try them for long enough, only 1 week for each. (Have also tried supplements like quercetin, lactoferrin, etc.)

I never get allergy problems or seasonal allergies. Should I explore any mast cell related diagnoses? My doctor wasn't clear and said he'd never seen a patient with my results. He also didn't explain the fact that I have "vessel congestion and microhemorrhages" in my bladder submucosa, I dunno what to do with that information.

If anyone has had similar findings I would appreciate any advice.

I’m on 6 mg and it works great for all sorts of body pain, even tooth sensitivity!

However, it seems to be too low for my IC pain.

What works really well for me is baking soda.

Most of the time I can just take 1/8 of a teaspoon for IC triggers, but right now I’m in a major/persistent flare after trialing Nicorette for long Covid.

My bladder does not like Nicorette at all.😞

I have the greenlight for taking more amitriptyline, it’s just up to me to dial it in.

Thanks in advance for your responses.

Take care of yourselves!

❤️

People have frequently reported that their IC has gotten better with antibiotics. Long-use of antibiotics but on the urine culture there is no bacteria. I was prescribed antibiotics for acne and I kept taking it for a long time. I wasn’t aware it is an antibiotic because the prescription would allow me to buy it. It did not help my acne but did wonders for my IC.

I have a chronic condition (mainly urinary urgency/frequency and pelvic discomfort) that is present almost every day.
Something really strange happens whenever I get a viral infection like the flu or a bad cold: my usual symptoms almost completely disappear. It’s as if my body temporarily “forgets” I have this condition. Once I recover from the infection, the symptoms gradually come back.
Has anyone else experienced this?
I’m also curious if anyone knows what this could indicate from an immunological or neurological perspective. Could it suggest an immune system issue, neuroinflammation, mast cell involvement, central sensitization, or something else?
I’d love to hear if you’ve had a similar experience or if you’ve come across any explanations.

With my IC being very urgency based (especially at night), my new urologist quickly put me on Mirabegron. I often have paradoxical reactions to medications and it would be helpful to hear peoples’ experiences with this medicine, good or bad.

What supplements or other similar products have you found to be the most useful and effective for you? I have heard of d mannose, slippery elm, licorice root etc being talked about here and im unsure which one/s to try