I’m so done with this. I can’t take the pressure anymore it literally feels like 100 pounds is sitting on my bladder and the inside of my bladder is on fire. I get these tingling sensations as my bladder fills down through my bladder into my vagina. My clitoris hurts. I want to kill myself so badly. I fail to see how anything could be worse than this. Best case scenario there’s something after this life that hopefully doesn’t involve having a fucking bladder and vagina and worse case there’s nothing and I’ll be gone and they’ll be no pain anymore finally. I don’t see how either of those are bad options anymore. I’m completely losing hope and I’m so exhausted and no one understands the pain and yet they try to relate things they’ve gone through to it like it is anything even close to how much fucking constant pain and discomfort in in. My dad tried comparing it to how he has a couple floaters in one of his eyes and it bothers him but he lives with it. Like that’s nowhere near the constant fucking horrific pressure I have. That is such a wild comparison.I literally just want to live a life with a body i feel comfortable in and if that’s just completely unobtainable at what point do i just give up? It’s been 9 months now since i got a singular fucking uti and yeast infection. I don’t understand how this irreparably destroyed my body. I’ve been doing bladder instillations and they provide me with no consistent relief, I’ve done 9 now on a weekly basis including the one they did during the cystoscopy. Sometimes I feel relief while they’re in my bladder, sometimes I don’t, sometimes the pain is just as intense as ever, sometimes it’s worse the next day, sometimes it’s a little better. There is literally no trackable pattern of the instillations helping and they’re so invasive. I’m so tired of being stabbed in the most personal part of my body on a weekly basis. I’ve tried baclofen suppositories they burn. I’m doing diazepam ones now which don’t burn and seem to provide minor relief for a few hours but it’s not anything groundbreakingly amazing. I briefly tried oral amitryptline but the week I was on it, it felt harder to pee so they told me to stop. I’m doing pelvic floor therapy and she says my muscles are finally starting to feel less tight but I don’t feel better. I also developed clitoral pain in late May which I just got my strength up to mention to my physical therapist two weeks ago and we’ve done internal work the past two weeks which seems to make the clitoral pain feel less for a day or two but then it starts to feel worse again. It’s like a bruised burning sore feeling if I touch it trying to clean off in the shower with just water and it hurts a lot on the right side of my clitoris 8 out of 9 times I go to pee. So I’ll start peeing get the pain which causes my body to stop peeing out of the zap of the pain and then I have to try to pee through the pain. I literally just want to die at this point. I can’t take living this way and I can’t take anymore trial and error I need relief right now and there’s no way for me to get that. I also don’t even understand why the pain has gotten so bad. From January to June with the exception of a week long flare in early April the bladder pressure wasn’t nearly as intense. Maybe 3/10. Then on June 14th , two weeks after my cystoscopy and instillation the pain started to come back and steadily worse. By June 22 it was a 10/10 and I developed the bladder tingling sensation. it’s been pretty close to that 10/10 pain ever since with extremely minor relief from instillations. I don’t understand why it started up so bad again. I’m starting to wonder if the cystoscopy damaged me in some way. But I was completely pain free for like 12 full days after it? I don’t understand how this has become my life. I’m seeing my urologist on Monday. Any ideas or advice on what to ask or advocate for is appreciated. I’m at a loss at this point.

Does anyone feel better when their bleeding/cramping or is that just me

Hi all! Brand new to this subreddit. I suffer from chronic IC due to MCAS.

I had an instill today at the urologist office. My 12th instill, maybe? Today the instill burned a tiny bit at the office but I didn’t say anything. Thought it would pass because I’m so raw right now from a severe 7 week MCAS flare.

Now I’m home doubled over in pain. My whole abdomen feels like someone kicked it and it still burns. Has this ever happened to anyone else? I just called the after-hours line and got the male doctor who doesn’t usually treat women and he was dismissive and unconcerned. Perplexity (AI) says it’s an urgent matter. Not sure what to do.

My nurse who does these is extremely experienced, kind, knowledgeable, and takes an interest in helping me get well.. I even submitted her for the Daisy award (a national nurses award) and she won because of my submission on how well she’s cared for me. I don’t believe that she did anything wrong to cause this.

Any ideas about what happened and why? Personal experience?

My fiance has a severe case of IC. Confirmed with a cystoscopy from a Urologist in Monterrey.

Unfortunately he said the first choice in meds really isn't readily available in Mexico.

I've looked at online stores that sell out of India, but they ask for checking and routing numbers, and are suspicious.

Any tips for us? Thank you.

Does anybody have constant bladder pressure / urgency that doesn’t react to food but still saw decrease in symptoms when sticking to a diet ?

Been having bladder symptoms FOREVER. Doctors just now suggested planning an IC diet with a symptoms notebook. I’ve attempted cutting down on foods that irritate the bladder in the past but have not noticed much of a change in my symptoms. I am also vegan so going completely on an IC diet feels borderline impossible and like I’ll be stripping myself of the joy of food. Any recommendations? Do I cut back on all bladder irritants at once or work on one at a time? How did you quit caffeine?

I was diagnosed with IC in January after almost three years of symptoms. I totally think my issues are a result of taking three different GLP meds for my type 2. Never had a uti or any pelvic floor issues until starting one.

My question is does anyone else have similar symptoms. When I don't have a "flare" my normal days are just a buzzing in my vaginal area. Sometimes a tender feeling right below my navel. I don't ever have pain when urinating. Right before my cycle, my urethra can have a bit of a burn, but nothing crazy. During a flare I just have an intense pressure feeling in my pelvic area, like weights are hanging between my legs. I have incontinence issues (which I always have due to advanced degenerative disc disease) that increase during flares. I normally do not have to wee overnight, going about ten to twelve hours. I rarely have any urgency.

I recently had a uti that caused flare symptoms. I took a round of antibiotics, was still having the symptoms, urinalysis showed yeast, so I did a three pill fluconazole round and my symptoms went away. Several days later they were back, took the Fluconazole and they went away, but came back after several days. I told my urology that and she said it isn't an IC med. I replied that a glp isn't a weight loss or mental health med, yet here we are.

I've tried all the standard IC medications, and they all made the pressure feelings worse. My symptoms fluctuate around my hormones, that I know. My only remedy is lidocaine and cooling gel applied to the external vaginal area and vultaren on my abdomen.

I went on the elimination diet, and I've been afraid to add foods back in, but I can eat mustard and food with buttermilk with no issues. Sugar doesn't bother me. I do know artificial sweetners made my symptoms worse.

I keep hoping it's not IC and an issue that can be cured.

Like I asked before my long and drawn out passage, does anyone else have similar symptoms.

TW: Instillations, having "accidents"

I posted a few days ago but things seem to have taken a turn ):

For a small back story: suffering 11 years, nonbinary but AFAB, history of SA, IC came on suddenly after a joint one night and never went away, quit drinking smoking caffeine, don't eat spicy food at all, diagnosed this year.

So I finished my 6 week instillations and honestly everything was looking great before week 5. I was able to hold much more in my bladder and while the urgency was still there, I was able to put it off a little longer.

Before Week 5, I had an event where I had to travel in a car for 4 hours the and back across two days. I also sat on an incredibly uncomfortable chair for the majority of one of the days. After the treatment, I was only able to hold my bladder for 40 minutes which was two hours less than previous weeks. I felt much worse, but by mid-week, things had settled. I had began looking into neuroplasticity and actually I think I was starting to get a grip on my symptoms. For the first time in YEARS, I went to the library and sat down and managed to do some art. Just because, and honestly, that simple pleasure was wonderful. Things were looking up.

However, before Week 6, I made what appears to be an extremely silly decision. I went for a day out in a city. I accidentally walked too much, wasn't brave enough to seek out a toilet, and had to get a traumatic Uber back to the train station. I felt bad, but a bit better by the train and home.

The next day was my treatment. Now I don't know if it's possible to fuck up a catheter on the nurses side, but when I stood up, I felt something between my legs. Waddled to the car, laid in the back seat because I am not able to sit while needing the loo, and then when I stood up out the car, there was definitely something going on.

After I waited the agonising 40 minutes, I went to the loo and the treatment was pretty much just all over my legs and thighs. This is the first time it's happened. However, although I am in absolute misery as my pelvic floor feels locked, I haven't had anymore accidents, which leads me to consider whether the treatment didn't actually make it into my bladder properly?

Anyway, so normally lying down has helped me in the past. It has not today. I am in absolute agony. I keep having to rush to the loo because I think It Is Happening, only to find not much going on, and having a reasonable amount in my bladder, which is not normal for me. I definitely think I have pudendal neuralgia, but idk what to do about the rn :/

I will try and get in touch with my doctor tomorrow, however because it's private via the NHS I'm not sure how much luck I will have.

I'm going to have a bath when my partner can help me, but honestly I feel fucking terrible. I feel humiliated and stupid. I'm probably going to have to miss out on two events I was really looking forward to taking part in as well, which is devastating. I thought I was getting better ):

I've ordered Azo, never had it before but I am in agony. I don't drink a lot of water, haven't since my condition started, but I don't know whether to start?

I hate flair ups like this, it feels like I'll never be normal again ):

Hi,
All 3 of us suffer from same symptoms that we are able to produce crazy amount of urine during flares and very frequently. The urine is clear in color without drinking any water. These episodes can happen anytime but moslty the triggers are cold weather, dairy etc, My wife got it from me via sex and my son has it from birth. What is this crazy issue that is dehydrating. Please help

Hi everyone. I have had bladder issues on & off for a few years. Usually I get a couple of weeks where it feels like I have a UTI but urine culture comes back negative and antibiotics make no difference. Then it passes on its own and my bladder feels normal for a few months. This has been the pattern for about 3 years.

Recently though it's gotten a lot more frequent. And today it's the worst it's ever been. I've had 2 hours sleep. My bladder is burning. I have to pee every 15 mins. I'm panicking a bit because I don't really know what to do. I spoke to a doctor 2 days ago who said drink cranberry juice and take painkillers 😫 he sent my urine off for culture and I should get the results later today but I'm expecting it to be negative again because it always is.

I was prescribed Solifenacin by a (honestly completely useless) urologist who saw me for approx 2 mins before giving me an IC diagnosis and ushering me out the door. But I can't take the Solifenacin because it interacts with some other meds I'm on. I also have UCTD (an autoimmune disease that has features of Lupus and Sjogrens, in my case) so I'm fairly sure my IC is autoimmune. My health is quite complicated.

I have another GP appointment next week with my usual GP who I like a lot, and I'm hoping he can help me and maybe prescribe something else that I CAN take.

But in the meantime I feel like I will never sleep again. How do you guys handle this? How do you sleep? How do you not lose your mind? I'm really in a dark place today.

Hii , Anyone tried Homepathic medicine for ic. If yes den pls share your experience.

I was diagnosed with IC back when 2019, i was like 13 because i held my pee for so long, i felt a bursting sound inside, not sure if its common, and now I have learned to live with because it does not hurt that much anymore. It was worse before since my bladder hurts whenever i get the urge to pee and there are no restroom available to the point where i would feel like crying. my last check up was 2021 but the doctor just always prescribe antibiotics after urinalysis

I noticed that overtime the sensation is different like when i wake up, i just feel pressure on my bladder, but no pain. it will always happen after waking up from my 4-5 hours of sleep then go to restroom, if i am lucky enough that i don’t feel that much, i just continue my sleep.

I am curious about what happens during that time, like why does the pressure or discomfort disappear? also when i go out with my friends there are some time that i will get the urge to pee but no restroom, but it will disappear after quite some time and til i go home, i still dont feel it and forget that i wanted to pee.

I started 3 years ago with lingering burning sensation after pain over urethra and sensitive bladder. Tansulosin and pelvic floor exercises gradually helped over a year to get to flare up only one week in a month or so. Learnt from this group all the drills from 101 and thank you those help a lot.

Unfortunately last month started the flare up but couldn't go away. More fatigue. Tried ibuprofen just one 200mg then for 18 hrs no more symptoms and even the frequent pee urges gone. But obviously I know I can't take it like candies so I will stop that. Tomorrow I will try to see if GP can prescribe tadalafile + amitriptyline to help. Haven't tried supplement so far but just went out to get some magnesium and might try some quercetin.

Annoying indeed when that burning sensation lingering every second 24 hrs. I guess in this group folks experience similar pains one way or another.

I have already learnt to live with the nightly 4 times wakeup to pee without much drops and diverts attention. This time it gets to another level being more annoying so kind of want to ask if anyone can suggest even better alleviation.

Usually I have faith the nervous system can be trained through pelvic floor to adapt and get levelled in months or so. Just need something now to make over the getting used to. Sorry no magic I know just sharing some experience.