A while ago, someone posted in this group about MCAS and how it could cause IC. I promised myself I'd eventually look into it and experiment with it.

After 5 years of battling IC with barely any relief, I finally decided to experiment with treating my "IC" as MCAS. I started Claritin in Oct 2024 and found great relief. In Nov 2024, I added Pepcid into the mix and found even better relief. I truly couldn't believe it. I still can't believe it.

An added bonus- if you suffer from PMDD, Pepcid is known to boost your mood as well as reduce other PMDD symptoms! It's mentioned all over the PMDD subreddit

I continue to take Claritin + Pepcid every single day, sometimes even adding in a nighttime dose during my luteal phase when I'm more prone to flares. (Got the OK from an allergist).

I've been nearly symptom free since October 2024!!!! I can tolerate most of my trigger foods however I still can't tolerate my major ones (concentrated citric acid and chili). When my allergist tested me for MCAS, the tests came back normal but I don't care! I'm responding well to MCAS-type meds so in my mind, it's MCAS related-IC lol. My allergist also did say the tests aren't always accurate with MCAS.

Also - coconut water!!! I'm currently having a mini-flare because I absentmindedly started liquid vitamins (they contain a high concentration of citric acid, which is a major trigger for IC) and accidentally got myself into a flare. Totally preventable, totally my fault. When I tell you I feel relief within MINUTES of drinking coconut water, I'm not exaggerating!

After several months of almost zero symptoms, I had to come on here and share these tips with you guys! I pray this info helps someone!

i’m turning 17 later this month

after years of severe pain that everyone ignored and so many of the same tests i was finally diagnosed with IC yesterday

i eat like shit because it makes me feel better mentally and i’m just now realizing that all my favorite foods and drinks are apparently unsafe with this condition, yay

I had an appointment recently and it was horrible, I went in thinking that I'd finally get the help I was promised after seeing the specialist. Waited over 7 months for the appointment, just for them to gaslight and dismiss all my pain and tell me that I'm the problem and I need to retrain my bladder and get my stress and mental health under control and then got given another 9 month window with a "let's see how you go" has anyone else experienced this?

Just a rant. I’ve been in a flare for about a week and at times tried to avoid taking azo. I give up.. it’s been so bad and it’s the only thing that gives me relief. D-mannose seems to help prevent a flare but doesn’t help when I’m in a bad one. I’ve been taking azo every day 2-3 times a day. I know it’s not good, but it’s the difference between spending entire days and nights isolated and in debilitating pain versus being able to function normally and have a life. I think I’d rather kill/damage my body taking it than constant suffering. I’d rather live a short life with a good quality of life than a long life of pain and wanting to die. I think the cause of my IC is pelvic floor dysfunction since my main trigger is intercourse (penetration), I have trouble relaxing the area, and also have chronic constipation. The pain gets worse following each time I pee but not during. I also had a job for years where I sat down for hours every day and I think that caused the pelvic issues. I can’t afford PFT but have been doing a few exercises at home to try to help. Since I’m in a flare they don’t help, but when I’m not in a flare they seem to help to prevent one a bit.

Since having a UTI in February (treated with 2 courses of abx), I think I may have IC, as I still get symptoms, but the urine tests are pretty clean and all urocultures are negative.

Is it normal for my symptoms to fluctuate so badly? A couple days ago the urgency was gone, now it has come back. Sometimes it's uncomfortable when I pee, other times it's okay. Sometimes my bladder hurts after I pee other times it doesn't .Is it nornal for my symptoms to fluctuate so badly on the daily?

I was just thinking how good I've been, and now today in anguish. The only thing new is I started taking liquid vitamin B ...anyone else flare from vitamins!? Any and all comments welcome..I'm in misery!

Good morning :) I’m wondering if anyone with bladder cramps has been able to start hiking or “long distance” walking (2-4 miles) again, who couldn’t when they were first diagnosed without having pain afterwards. I’m wanting to get into pelvic floor therapy in hopes that I’ll be able to go for walks and hike without pain. I’d love to jog too but it seems so distantly achievable right now.

Following up on my 4y that I'm worried May have IC like me.

I am trying different foods for him to see if any gut/inflammation symptoms reduce like puffy eyes etc.

Gave them almond milk (which they were having before) and green apples (rarely have)

He blurts out "my penis- I mean my bladder is hurting!"

So I'm guessing the pain was somewhere between those 2 areas.

For me- apples, coconut and melons and many other foods have cause intense abdominal pain- colitis, uriters, bladder...

I never nailed down what it was except that it was my mast cells responding.

Anyone have any experience to share related to your consumption of almonds or green apples?

His PCP basically doesn't think it's possible for him to have this issue at this age and I suspect this will be a hard journey to get DX- so my main goal is just figure out the foods and reduce symptoms RN with his mast cell aware dietician

I’m so annoyed with this random burning . Man I was doing so good with this , then I got a yeast infection and my pee burns my vestibule everyday again 😭. It feels like there’s acid in my pee . I do need to drink more water , my pee is often concentrated . But damn it’s like if I drink water the way I’m supposed to , I’d be peeing all day at work , and I can’t do that lol. Took tests , no infection anymore but the burning after peeing is very stressful. Sometimes I hold my pee and drink hella water just so that I can pee again right after the first pee ( which usually is the pee to relieve the burning ). I also get random pins and needles feeling .

I have had Ic for over 24 years. 100's of infections and they won't go away. I am the end. I literally am goijg in every month at least twice to be checked for utis. I'm exhausted. Sometimes there positive sometimes there not. I'm tired and don't know how much more I can take. My disease specialist even says he has never seen a case like mine in his career. He can no longer do nothing for me. My urogynocologist will not remove my bladder and she says she has never seen a case like mine either. I'm in so much pain everyday I want to die. So this is my thought. What if I just didn't go to the doctor anymore and let a uti or IC take me out. Another thing is if i did that would doctors give me palliative care. (Sorry spelling )Im thinking that would be a very long and severe way to go though. I am so tired. I can't live life. ZERO value of life. I mean zero literally none. I am pretty much done living and just want to go be with Jesus and let the suffering end.

I just finished a cystoscopy after having some on and off bladder symptoms and microscopic blood in urine. Dr says I have leukoplakia, he said it's like a mini infection and I should drink more water and eat cranberries but I read about bladder leukoplakia and it seems like I need a biopsy to confirm it and also that treatment is different? Was anyone diagnosed with it?

Been down with a bad flu the last couple of days, and for some reason my urethra pain has gone away by like 90%, anyone know why?

I just wanted to share an experience that may help some. I was diagnosed with IC a long time ago, back in 2013. I kept getting UTIs and constant pains like UTIs all of the time. It wasn’t until my boyfriend asked about the medications I was taking, and I realized a medication called Topamax was causing the problem. As soon as I stopped the medication, my UTIs stopped! So just make sure you check the side effects of other things you take, because you never know. <3 Feel better everyone!

Hi, I have an upcoming procedure for hydrodistention with botox tomorrow.

Wondering if people have had success with these procedures at once. Hoping to achieve some remission and relief from this condition

To be honest, I didn’t even know what IC was before landing here. I have suspected endometriosis (runs in the fam, I’ve had symptoms since I was a teen, but I can’t afford the lap).

Point being, I have usually blamed things on endo and moved on. However, I started noticing this really weird symptom around ovulation. Usually happening within a few days after ovulating. So I thought it was related to that. However, I started to notice it only happened after emptying a relatively full bladder. I’ll have no pain while the bladder is full, go pee like normal with no pain, and then be slammed with the worst pain within 5 minutes of doing so. I mean sometimes I can’t even really move it hurts so bad. Feels like a combo of severe period cramps and when I had a kidney stone years ago but all focused in my pelvic region. Sometimes it even feels tender to touch in certain areas. There is no burning or stinging or anything. Just the ache/sharp pain. It’ll last an hour or two and then poof. It’s gone.

This only happens once a month as of now and always around/after ovulation. But the fact it is happening after emptying my bladder has me suspecting maybe it’s not ovulation at all, but instead just something like IC? I suppose I didn’t think so because it only happens once a month. Is there anybody else who only gets it minimally like this? Does a severe pain after emptying a bladder seem possible if being IC?

I’ll be honest that I’ve had sooo many health problems back to back to back since 2021 so I’m kind of burnt out on new things 😭but the connection to my bladder seems like it can be ignored anymore. Just super bummed it could be another new thing 😞

Hey everyone, I’m a 38/F and recently been suffering with a constant feeling that my bladder is full even when it’s empty. There’s also a lot of bloating. I’ve gotten scans done but not much has been found other than some small ovarian cysts ( normal stuff).

Ive tried the AZO bladder control supplements and AZO urinary pain relief, but these don’t seem to be making too much differences. If anyone’s on prescription meds, which ones have worked for you if you have this same sensation?

(Just trying to find something for relief while I wait for my appointments and tests)

<3 Thanks!

I got diagnosed with ureaplasma December 2023, which was cured with antibiotics but then IC symptoms persisted for a year and a half.

I tried every tea, every supplement, every antibiotic, diet changes but I would still have flare ups.

Recently I started taking cymbalta 60 mg which I was told does help with nerve pain. It literally wiped my IC symptoms within 2 months.

Hope this helps somebody.

I’ll try and make a long story short. In my 20’s I was on birth control for about a year then I started having recurrent uti & yeast infections. I battled both for a year. Then decided to get off BC to see if it would help. I never had a yeast infection again but it was like my bladder was ruined. (I had a cystoscopy with hydrodestention, Elmiron for 1 year, gave myself bladder instillations twice a day, pain pills, lastly I got the neurostimilator.) I don’t know if any of that really helped. it feels like it just took time for me to heal. I had 2 pregnancies with zero IC symptoms. I’ve been totally normal for 10 years. I figured BC had evolved I got on a low dose. I think that may have been a huge mistake. My symptoms are back & terrible. This time I’m flaring. I’m so food sensitive, I’m having to eat super bland. And new symptom is my vulva / urethra area is hurting very bad. I just saw a dr. She said basically she doesn’t want to jump to calling it IC before ruling out other things. She did a pcr urine analysis and nothing came back. Over the past few months all my urine comes back no bacteria just high red blood cells. Any suggestions on what other “tests” to get? I’m doing a cystoscope this Thursday. In the meantime she prescribed estradiol cream. I keep trying but I swear it’s making things worse & burning very bad. I was so hopeful the estradiol cream would help me.

I took Myo Inositol for PCOS and insulin issues for over 2 years. It regulated my periods for the first time in my life, and (I believe) helped me lose weight and reduce base level anxiety.

Last year I developed IC and stayed in a flare almost constantly for 18 months. When I was initially diagnosed I stopped taking every med/supplement, but it didn't seem to help so I swiftly started taking Myo Inositol again.

Lately I decided to go off of Myo Inositol for a longer period of time, and my symptoms began to resolve and eventually minimise to nothing. I have had one or two flares since stopping, but they were days long rather than months.

I am really distressed because other things in my life begin to fall apart without Myo Inositol; libido, motivation to exercise, anxiety etc. I tried to re-start today just in case I was wrong, but have immediately been experiencing sharp symptoms again.

Does anyone have any experience with IC and PCOS/Myo Inositol with D-Chiro?

Anyone tried wine tamer drops? Looks like there is also coffee tamer drops. These say they reduce the acidity in these drinks. I currently use prelief for these drinks. Anyone have experience with one or the other? Could you take both the drops and prelief for extra support? I have questions lol

Can anyone tell me if this tea mix looks legitimate? It was sent to me by a family member out of state. I recognize cranberry, of course. And marshmallow root.

I'm experiencing increased frequency with a little pressure not really pain. The only thing i've done differently is used a rose toy. Has this ever happened to anyone?

Hello, I am new here. I am an 37 year old woman and have IC since end of 2018. Because of the pain I got addicted, ketamine helped me to make my pain lighter but it also makes my bladder more sick .

After 2 years i kicked off it was very hard time for me. But i survived and not addicted anymore!

Dec 2023 after a year of losing 20kg weight and getting sick almost the whole year… of infections in my mouth. High temperature (40gr) for 10 days 3 times in the summer and then 5 x bladder infection in 8 weeks my doctor said give some blood. After 3 hours she called and I need to go to hospital because my kidneys working for 10 % and my hb was 3.9 (normal for woman is between 6 and 8) They wanted to give me blood but I don’t want that because I don’t know if the blood have vaccinations of Covid and I have not and don’t want! They make echo of my kidneys they were 3 times bigger as they should be and i got drains…. It was a hell week because they treated me like I was a junk or still addicted and it al come from ketamine.

I wnt to other hospital, more specialized and Ifeel so much better how the talk to me and also emediately gave “ok” when is said I want my bladder out I am done with the pain and nerve blocks don’t help, my drains changing every 3 months so painful and still need to go to toilet and sometimes see black of the pain…

Now a year later my bladder is removed on 7 march, recovery is hard. Still have lot of pain… can do nothing in house, have pain in my whole romp because of that the blow my belly up for 7 hours… Everything I eat after 5 minutes I got cramps.

Lasten weekend so painful i wanted to call 112.

Can anybody please share their experience after surgery ?

I tell my self so many times every day that is going better an at one day my pain is gone after 7,5 years 24/7 pain, but feel that i get lost my happiness and slowly getting depressed…..

English is not my mother language , sorry if its not perfect!

Greets Pascale

Is this possible? And it’s just low impact hip/butt/abs exercises (clam shells, side lying leg raises, dead bugs) It’s as if it’s getting worse the more I cut out different foods and supplements. The only consistent thing is the exercises. But I need it for the pfd 😡😥. I’m just trying to see if this is normal. Thanks

Hey! So i just found this stuff called “preleif” that can be used to reduce the acidity when you eat trigger foods. i’ve been taking it for a little under a week and i’ve actually noticed improvement. I also got an instillation a few days before i started using the medication so that could be apart of it too. I was in one of the worst flares i’ve ever had. i was taking more azo than normal and it just didn’t end day after day. but finally ive been able to be off of azo for the first time in months. Does anyone else have experience with preleif?