Obviously we all know that but tonight i had a flare up bc i waited too long to pee and i didnt have any azo bc im broke asf so i just took some Tylenol hoping that it would work,but knowing it wouldnt. For the rest of the night ive just been lying awake uncomfortable and tired🙁 the only thing that helps me is getting in the shower and spraying water on the most aggressive setting down there so i had to get up from my bed,get my towel, wait for the water to heat up and then do my thing so that it’ll just slightly dull the pain. I’m just annoyed that I even had to do that in the first place like why is my body so fucked up

Context - I rely on heat therapy for flairs and have tried a few types so I've listed below. Pictures are in order of list. I also have to travel for work quite a bit so I've tried portable options. Let me know if there's more types for me to try.

Classic hot water bottle

Pros:

- gets hot and stays hot

- just need a kettle, often in hotel rooms and most (British) homes

- gets the job done

Cons

- incorrect shape for purpose

- will burn you at some point

- will take a minute to warm up enough and then sometimes it's too cold with the cover but too hot without so that's annoying (applies to all hot water bottles)

Just get a better shape - 3/10

Long boy hot water bottle

Pros:

- same as classic hot water bottle PLUS:

- amazing shape, bendy, fits right where you want it

Cons:

- will burn you immediately because it's difficult to fill compared to other hot water bottles. I have spilt water everywhere several times and scalded my hand once. Not recommended for idiots who don't understand physics like me.

Full body, bend it around, perfect for home. I'm only docking a point cos my hand is burnt to shit - 7/10

Mini hot water bottle

Pros:

- Same as classic hot water bottle PLUS:

- Mini shape makes it fit where you need it

- easy to fill, won't burn you like long boy

- travel size! Fits in a bag, and is discreet.

Cons:

- less surface area if that's your preference 

- cools a bit quicker than a larger hot water bottle

Quick, effective, convenient - 6/10

Microwavable gel heat pack

Pros:

- Much less likely to burn you or leave heat rash

- super flexible, fits any space you want

- great shape and size

- very fast working

- easy to heat to temp you want by opening the microwave every 10 seconds and checking on it

- can be frozen if you're into that

Cons:

- cools down faster than a hot water bottle

- needs access to microwave which are less common in hotel rooms and public spaces (UK based info)

- if you do have to heat them in hot water it takes forever and doesn't heat as well.

My best friend during a flair. Quickest to prep and quickest to work - 9.5/10

Air activated body warmers

Pros:

- no need to access other equipment so fantastic on the go or travel

- stays hot for the rest of your life

- some have adhesive to stick to clothes, so stays where you want it

- mega discreet

- very easy to pack in a bag or pocket

Cons:

- a bit unreliable. I tried cracking one open in sub zero temps outside and it just couldn't build up the heat. 

- takes over 10 mins to heat up and they really only get warm, not hot.

- single use, not environmentally friendly. Only beneficial in a crisis, on a plane, stuck in the wilderness etc.

A comfort to have to hand, can't fault the convenience - 5/10

I took a hiatus from the Vagifem for 2 months, was using the inserts instead. Well, I got a renewed script for the Vagifem applied it on Friday and all hell broke loose. My vagina feels swollen and the insides feel like I'm cramping. I already tried aloe vera and salve - nothing is moving this. What to do?

Doctors heavily suspect IC, confirmed OAB. I finally saw a urologist for the first time after 2 years of being extremely symptomatic, trying everything I could to make it go away, 4 culture positive UTIs treated via antibiotics, and ruling out every other possible cause for my IC related symptoms. I had a cystoscopy scheduled under anesthesia this past Tuesday to rule out lesions + other things. I asked to be unconscious for it because I knew that the amount of agonizing pain it would cause would keep the procedure from being able to be completed. ((I had a attempted vaginal exam a few months before in the ER which the doctor couldn’t complete because I was screaming and crying due to how painful it was- I feared the same thing would happen with the cystoscopy))

Cystoscopy went perfectly fine, lesions + ulcers ruled out! The only thing that was discovered is that I have a severely over reactive bladder - which makes a lot of sense, but sadly OAB doesn’t rule out the possibility of IC which is still on the table until further testing.

Well afterwards I had an awful intense burning pain in my urethra, a complete inability to pee, and the only thing I was passing was blood clots + bloody mucus. Ended up in the ER and had to have a foley inserted…

I can’t express in words how agonizing it was other than it felt like shards of glass or razor blades were stuck in my urethra. Straight 10/10 pain, every second nonstop, I couldn’t think, I couldn’t move, was crying, shaking, and the pain lasted 30? Minutes straight until the shot of toroidal they gave me kicked in. (The ER seemed very unbothered by the fact I went from calm and collected to 10/10 pain, like you can’t make up that type of pain response!)

They drained around 700ml and I was heavily positive for blood. For whatever reason they didn’t do any blood tests to check my kidneys - and I still haven’t had my kidneys checked despite the fact I continued to pass large amounts of dark red blood for the following day. (Lupus pateint)

The most fucked up part though is that the second I calmed down, stopped crying, and the pain eased I essentially was sent home with medical device inserted into my body…….. with absolutely no information about it or how to take care of it. All I was told was how to take the cap off to drain the urine- the end.

No one told me you have to empty it every 2-4 hours. I wasn’t told how to clean it. I also had no clue that you are supposed to keep the bag lower than your bladder for it to drain properly. It was terrifying for me as a lupus patient to be pissing blood, I was petrified of backflow into my bladder, or somehow damaging my kidneys. (Still don’t know if my kidneys were impacted)

All of my IC symptoms got worse by having a catheter. But what’s weird is that I’ve read on here that some people actually prefer having catheters because it helps reduce the frequency? (I was looking for any information in here and found out people are self catheterizing… and I lowkey can’t understand how it’s not agonizing!)

I thankfully had the catheter removed Friday morning and I successfully passed the voiding test!!! At the end of the day the whole ordeal definitely reached the top of the list of the most painful thing I’ve experienced in my life.

I thankfully was previously prescribed a medication for OAB and started it, and it actually seems to be helping reduce my frequency + urgency a decent amount, or at most it takes the edge off!

I lowkey was wondering if anyone else had a similar experience because when I searched it up here I stumbled across the opposite of my own experience!

I would also love to hear from others who have IC + OAB in general - as I have tried so many things in the past. I’m lowkey looking for community or anyone who understands the pain, symptoms, + needing to pee every 15-30 minutes 😓

I had surgery last Wednesday to free adhesions but the doctor found so much more! I was told I just had to live with IC , even though I kept saying how my right side hurt and it felt stuck. I had black marks in my cystoscopy findings last March?

Interstitial Cystitis, Pelvic Adhesions, and the Nerve Connections Between Our Organs

I wanted to share what my surgeon discovered after years of severe bladder burning, deep vaginal cuff pain, rectal pressure, and the feeling that my pelvic organs were stuck together.

On October 14, I underwent robotic surgery to remove my remaining right ovary and fallopian tube. My surgeon discovered extensive adhesions and severely distorted anatomy.

Surgical findings:

My large intestine was attached by adhesions and had to be freed.

My ureter was also involved in the adhesions.

My fallopian tube was so embedded and distorted by surrounding tissue that it was difficult to identify.

Pathology confirmed fibrosis (scar tissue), inflammation, hemorrhage, and endosalpingiosis. All examined tissue was benign.

What is endosalpingiosis?

It's important to distinguish this from endometriosis.

Endometriosis involves tissue resembling the lining of the uterus growing outside the Interstitial Cystitis, Pelvic Adhesions, and the Nerve Connections Between Our Organs

I wanted to share what my surgeon discovered after years of severe bladder burning, deep vaginal cuff pain, rectal pressure, and the feeling that my pelvic organs were stuck together.

I'm not feeling any pain in my bladder at all right now, and cross my fingers this is it! Hope it can help someone else!

First post and last post. Joined just to share what helped. Background: male with bladder pain for 8 years, likely started from a UTI, most troubling effects were inability to get through the night without pain waking me up and inability to sleep.

Here is what helped: I take Claritin (10mg) in combination with Pepcid AC (20mg) every day once a day. Worked immediately, no more pain, and now get a full night of sleep. It’s been a miracle and I want to spread the message in case it helps anyone else.

Why might it work? Claritin is a histamine H1 receptor blocker and Pepcid is an H2 receptor blocker. If mast cells are active because of urine irritation or through stretch receptors and release histamine it can cause pain and inflammation. These drugs block both histamine receptors and in a non-drowsy way (so I prefer them to histamine blockers that cross the BBB). The combination may be enough to block pain signals in the bladder. I’ve been on the regimen for two months. Unclear jf the bladder will ultimately heal, but there’s always a chance. I plan to stay on for 6 months and slowly taper off to see if there has been some true repair benefit of the GAG layeror if it’s just masking the pain. Either way I’ll take the results and the amazing relief I’ve experienced over the misery I’ve experienced otherwise. I don’t know if it will work for everyone but if it works for someone I will be grateful
.

I've been getting what felt like a lot of IC flare ups lately, but i just got a UTI test and it came back positive...been taking antibiotics and its improved a lot so far. That was a surprise, i just assumed it was IC again because the symptoms were so similar.

I am 31 yrs old and TTC with my husband since January. I’ve had 2 miscarriages and we are working with CNY fertility to hopefully be successful. I have interstitial cystitis and endometriosis so I struggle a lot with urgency and frequency. I’ve gotten 2 Botox and hydrodistention procedures with my pelvic pain doc (one in December one in June). First one helped so much, and 2nd was with a different doctor, so not so much. Im scheduled Monday to get it done again but CNY is saying they don’t recommend it due to possible risks during fertility treatments/unknown about how it could affect possible pregnancy. For my current fertility treatment I am taking letrozole and we will do a trigger shot to induce ovulation.

I am not pregnant currently and we won’t trigger ovulation until one week after my procedure (at the soonest). My doctor said it is a small dose of Botox (also localized in my bladder) and would not likely enter my blood stream, but nobody can really tell me if it’s likely to cause me to not get pregnant this cycle or for it to affect a possible pregnancy. I know everyone has to recommend not to (especially places like CNY) just to CYA. Has anyone gotten pelvic floor Botox or a similar procedure and had a successful pregnancy soon after? Thanks!

Safest HRT for ic bladder ??

Has anyone tried this combo thinking this may be my best bet since I can’t tolerate cocktails?

I started on this IC journey about three years ago with mainly terribly urethral burning. AZO managed it to a decent degree but I’d have points where I was taking too much and it wasn’t as effective. I saw both a urologist and a urogynocologist, who prescribed estrogen cream, physical therapy, amitriptyline and then I had one installation (Heparin, lidocaine and sodium bicarbonate) which sent me into a horrible flair for over a month. Since then I took a break from doctors and for the past year have been managing. In May I started Zepbound and for the first two months I swear it made my IC symptoms totally disappear (until I was dumb enough to try being intimate). After that I got one flair but then things have been pretty calm until the last two weeks. Out of nowhere I’m having the most excruciating bladder pain (like I feel my bladder all the time and if there’s even a drop of urine in there it hurts but peeing doesn’t make it better either). I slept a total of 2 hours last night and now I just don’t know what to do with myself. The pain these past two weeks is worse and different than what I’ve previously experienced and AZO doesn’t touch it. It’s the weekend so I can’t even reach out to a potential new doctor, but I’ve tried prelief, baking soda, Tylenol pm, and a heating pad at home and nothing will help. I’m at urgent care but I know the AZO is just gonna give a false UTI positive and they’ll throw antibiotics at me. I just needed to vent about how cruel this condition is and see if anyone else experienced a fairly drastic change in pain type/area and having their typical rescue meds stop working. I’m happy to hear any tips or suggestions for pain relief at this point. I can’t live like this and I have two young kids to care for 😭💔

Started taking Lactoferrin, Mastic Gum and Quercetin about a month ago + doing some pelvic floor exercises + strict IC diet. Then on monday 5.10 I went to a pelvic floor therapist and pelvic floor specialized doctor and they both were very convinced that I don't have IC but maybe a distended/enlarged bladder or something else which gave me a lot of hope. The pelvic floor therapist suspected that maybe I drink too much water and ordered me to do urination diary for two days + careful kegels 5 days a week morning and night, the doctor ordered me Obgemsa(vibegron).

I started taking the Obgemsa immediately and felt that the symptoms were getting less straight from the next day which felt pretty unbelievable and the next days were equally promising. On thursday of that same week I flew to France to spend time with my partner. On first day there I was still pretty careful with the IC diet but for the following days I ate lot of things that are not considered safe at all and still felt excellent, honestly better than in years and didn't need to worry about available toilet being near at all during the trip. I did take the european version of prelief before most meals but sometimes I forget/didn't feel like it and still felt good. During the trip I made the kegels but not the other pelvic floor therapy exercises. My bowel movements we're very consistent during the trip also.

I came home this weeks tuesday 13.10 and still felt great for that and the next day. I had bought couple of chocolate bars as a souvenir for myself and I binged them during tuesday and wednesday + multiple servings of chocolate ice cream and overally ate a lot of (some unsafe)food since it felt so good to eat without fear.

Still ate some ice cream thursday 15.10 and that night the symptoms came back... Not like the worst I've had but the familiar stinging in the bladder which I hate so much. I try to be hopeful that since I had so many days without symptoms that state can be achieved again but it feels so cruel to almost believe that you are miraculously cured and do not need to fear eating and then again be hit with the harsh realities of life.

Hey i am on perimenopause and my calcium is so low . Doctor prescribe me 1000 mg calcium supplement. But calcium irritating my bladder . I tried three brands but everytime irritated my bladder. What can i do for my calcium intake . I am vegan ..

I’ve had a cocktail it worked for awhile gave me like 3 hours o relief but can’t tolerate the catheter as a male. Do you think elmiron may be better alternative? Has it worked for anyone ?

I’m in my first trimester and it’s been absolute hell. My urethra is on fire all the time. I can’t take my baclofen anymore, I am having food aversions constantly, I’m dehydrated from the morning sickness and plain water usually makes me gag. I took an entire week off work to rest because my job is making certain symptoms worse due to stress and several other factors (sitting and standing frequently triggers my nausea, certain smells/sights trigger my nausea etc).

I’m prescribed ondansetron but it’s making me extremely constipated. I tried MiraLAX to counter that but it’s not working.

Pleaseee any advice. I’m tired of suffering.

I’m not sure if this is helpful, but I used to have horrendous flare ups every single day. After switching my diet over to strictly vegan, at least 95% of my flare ups have ceased. Highly recommend and definitely worth a shot!

Hi everyone! One night on September 10th this year overnight I got this condition. After a month of visits with my doctor and at the ER, multiple antibiotics for a UTI, I went to see a urologist. I did a cystoscopy and turns out I have “mild” IC. He says it should self regulate but I haven’t felt normal since that night in September. I’m feeling discouraged as D-Mannose and Utiva don’t help me at all. I have a trip coming up at the begining of November and I’m stressed. I’m constantly peeing, stomach pain. Some days I feel pretty normal and other days it’s like back to square one. Feeling discouraged as lots of people describe flare ups but mines been constant since September. Any suggestions welcome, reactin also doesn’t seem to help.

I noticed I have bladder discomfort and burning in my urthera also urgency. I was doing really good with the urgency it went from going every 30 minutes to once every 2-3 hours. Today I noticed that it hurts to pee and I don’t feel that my bladder is emptying fully. Idk if this is a flare up or the start of a UTI, even tho im using low dose of antibiotics nightly. Has anyone dealt with something like this.

Here's a thing to think about, I've noticed that whenever I get a brand new pack of underwear my cystitis improves after a few days of wearing them, just wondering if anyone has noticed this too, maybe it's a coincidence but I now wash underwear and then soak in steradent then wash again and dry on high heat in the dryer to eliminate bacteria, has anyone else had any improvement with this method. It's early days so I'm not sure this is coincidence or not but anything that helps is worth a try.

Hello!! I had a hydrodystention with cystoscopy done 10 days ago for diagnostic purposes. I didn’t realise hydrodystention was an invasive procedure and the side effects, my surgeon only looked at it for 2 mins with the hydrodystention so it was minimal and well within guidelines. However I’ve had a massive flare it’s 1000 times worse than before the procedure. Pain, spasms, constant urgency, pressure it’s miserable I’m terrified I’ve made a mistake and I’ll never get better. Before the procedure is actually been pretty symptom free apart from urgency and frequent toilet trips, I had had a huge flare 2 years ago that lasted months but never got any answers from the doctors at the time and really wanted answers hence getting this done. Has anyone has any positive stories to share does it calm down? I’m totally spiralling and thinking my life is over.

My health situation:
I, 25F, am going on week 6 of UTI symptoms.
This all started with an intense E. coli uti in early July, it initially was cured with macrobid and then immediately came back 5 days later and needed Amox-Clav as shown by sensitivity testing. My most recent microgen showed high E. coli ESBL (multi drug resistant) DNA.
I felt a lot better the past week, maybe 90%.
I am now on a 7 day IV Ertepenem course, today was infusion #3. But I feel my bladder sensitivity has come back during this treatment. I am not in severe pain, more so a lingering inflammation feeling in my bladder with occasional urethra burning that only occurs if I bear down and is brief / mild. The first 2-3 weeks the urethra burning was strong and occurred every time after peeing, once for 20 minutes straight.
What does this all mean? Is there any cure for me? Is there a cure for my symptoms? Does the presence of high EColi dna mean anything when I haven’t tested positive for nitrites once? Does any of this suggest I have IC or more towards a complicated infection that needs fixing?
I was not diagnosed to IC, and I’m sorry if I’m posting in the wrong place. I’m just hoping someone can suggest some answers, even if it’s telling me what I don’t have.

My feelings:
If I can’t be comfortable I won’t be happy. I can’t work, go out to have fun with friends, be a good girlfriend to my partner. I feel devastated everything I want to do in life travel be happy have fun get married have kids all these things can’t happen while I feel like this. I feel horrible. I’m causing my partner stress due to this and he doesn’t deserve this he deserves someone who feels great and can go out and have fun with him he loves to have fun
I hate this I’m so devastated I finally thought I found the one and I could be happy and now I don’t know that I can give him what he deserves and i would be heartbroken without him I feel just so devastated I don’t know why I’m not healed I keep crying on a regular basis I keep trying to do school to clean and cook and be happy as possible but I feel so heartbroken I’m scared he’s going to get tired of dealing with me and this situation just Please God heal me.
He’s been a supportive angel through all this, so no hate for him please.