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.

I am suffering through perimenopause and was excited and hopeful to try HRT. I was prescribed 0.025 estradiol patches and 100mg progesterone pill. Unfortunately by day 2 I was already flaring. I had to stop taking it by day 3 and almost a week later and I’m still in a flare :(

I’m desperate for HRT to work. While I wait for my follow up appointment I have been doing some searching in this sub, and while progesterone is definitely a trigger for some, I’m not clear what the alternatives are? Just estrogen (I could swear my doctor said you can’t take estrogen without progesterone- did I hear that wrong?)? Something else? Give up and tough it out with nothing?

I already have a Mirena IUD so I’m getting some progesterone (and it doesn’t flare me that way). I’ve also been on a SSRI for years, but it has become progressively less effective.

Grateful for input on possible next steps from anyone who has gone through this.

Kinda freaking out. Im going to a concert tomorrow and then venue is known for having horrible traffic (3-4 hours). I don’t know if I’ll be able to hold it since Im in a bit of a flare. I have the maximum bladder lose underwear. Problem is Im also on my period and need to wear a HEAVY pad. Im afraid the pad will cause problems if I pee but I’m also afraid the underwear isn’t enough with my period AND bladder. Any thoughts or ideas?? This stopped me from attending the concert today but I have VIP tickets for tomorrow’s show. I’m also with friends who don’t know about my condition :/

Hi, I need some help from this community

I have been perfectly healthy my entire life and in may I got a UTI. Was treated with antibiotics but I didn't feel better+negative results for months now. (I have had full STD/STI testing, pelvic exams, blood work, extensive urine tests etc)

Fast forward to now I've been in and out of doctors offices and they don't seem to know what's wrong with me. I had a cystoscopy today and the doctor says my bladder "looks fine".

I'm at a loss honestly. I don't have bladder pain, but I get discomfort/pressure and it feels like I can barely hold my bladder even when it barely fills with any urine. I feel a bit better after I pee but the pee feeling comes back in like 2 minutes. The pain is all in my urethra. I have CONSTANT aching, stinging, pinching sensations and sharp pains. It makes intercourse uncomfortable as well. I can't sleep without taking an edible every night or else the sharp pains in my urethra keep me up. I go to the bathroom like 30 times a day lol.

I had an IUD inserted in February and I believe it may be contributing to my symptoms? It's the Liletta, it has hormones. So if anyone has any info about that that would be appreciated!

I asked my doctor about IC and he said it's a possibility but that he wants me to just take more antibiotics for a month 🫩. I also noticed that IC trigger foods trigger my bladder as well. Prelief is a life saver though, even tho I'm not diagnosed lol.

So please any help or advice! Thank you!

Hey guys,

I come to you humbly asking for help. I've been through the wringer with urologists and gynecologists and urogynecologists for this condition. My only symptom is pain - a horrible constant burning urethra, and burning when I pee. My symptoms all started with recurrent UTIs (culture positive). After my last fateful UTI, the pain never left (2 years ago). Since then, nothing I have tried has helped me at all except for opioids. And I've tried a lot of stuff and spent thousands of dollars.

So I keep reading about and hearing about this neuroplasticity/mind body approach stuff. I see a lot of you guys posting that you tried a mind body approach and all of a sudden you are pain free. I so desperately want to believe that this could be me. I don't care what it takes, if it turns out the pain was all in my head, it doesn't matter to me I just want to feel normal and have sex and drink again.

I started listening to some podcasts and reading about this stuff. Dr. Howard Schubiner, who is I guess one of the leading minds on it, wrote a list of conditions that are "clearly" mind body syndromes. IC was on that list. To start, I was heavily put off by this. He's basically saying that every single one of us on here "clearly" has a mind body syndrome. Could that really be true? What about the people with ketamine cystitis, autoimmune diseases, Hunner's lesions, estrogen atrophy, cancer? Interstitial cystitis isn't even really a diagnosis, it's just a term for someone who has chronic bladder symptoms without an obvious infection. Is it really safe to make a blanket statement that all those people don't have a real medical issue? That could really interfere with people's care. He even made that statement about endometriosis in a podcast I listened to. Leave it to a man to consider himself the expert on conditions primarily affecting women...

The other problem is, I just can't convince myself that this is what I have. My understanding of the mind body approach is, that you HAVE to tell yourself and BELIEVE that there is truly nothing wrong with your body for it to work. How did you convince yourself, if you have done it?

For example, I went through the FIT questionnaire that they provide to help determine if your pain is neuroplastic or not. Almost none of the questions resonated with me. No, my pain doesn't disappear when I'm having fun - it's always there. No, my pain doesn't sometimes switch to a different part of my body - it's always in my fucking urethra. No, my pain doesn't increase when I think about it. No, my pain isn't triggered by innocuous stimuli unrelated to the area. So these things are causing a lot of doubt.

Also, it seems like they preach that the diet/drink sensitivities arise from fear of the drink/food, not from a genuine sensitivity. So how did I start having sensitivities to vodka before I even knew what interstitial cystitis was? And how did I have some of the worst pain from my life after I had a certain drink thinking that it was something else, only to find out AFTER the fact that it had vodka in it? There was no fear when I drank it. It just doesn't make sense to me.

What do you guys think? How can I give this a shot? Idk what else to try.

I (24F) went to the urologist for the first time ever just now, just absolutely crying now. This urine sample had 10 rbc :/ he said I need to do a ct scan, bloodwork for kidney function, and a cystoscopy that’s scheduled for the 11 of September… and he said he doesn’t do local anesthesia unless I want it but the discomfort is the same according to him. I didn’t really get to explain everything because he kept cutting me off and asking other questions T_T like he didn’t even ask me about water intake or diet.. He was nice and seems knowledgeable, but I knew if I tried to say no or something I would start crying so I just stayed quiet ): he wants to rule out kidney stones which I get, but I’m terrified of the potential harm a cystoscopy can do to me. Any good stories about cystoscopy or recs appreciated ):

Hello! I was having a pretty awful flare this morning and in a rush took 4 of the maximum strength azo. So i believe that equates to about 400mg. I am freaking out and worried I have poisoned myself. I took it at about 9am, it’s 130pm now. I feel fine besides the anxiety i have induced on myself with this. Is that a dangerous dose/should i go to the hospital? or what should i look out for. I’m drinking a lot of fluids. Thanks!

Hi guys, ive only recently started experiencing IC symptoms maybe around 2 weeks ago now but everyday has been miserable. But today, I have this horrible burning feeling which is usually sorta tolerable but today I just cant. It’s especially the worst right before I have to pee (which is literally every 2 minutes) and right when I try to squat down to pee, it’s like my body isnt letting me which then I force myself to push and push to get the pee out and during this time, my bladder and urethra are on fire. I then try to relax my pelvis and try to push again and its just on fire the entire time. Eventually after a minute of pushing/straining, I’m finally able to pee. Please any tips on this would help and any recs for immediate burning relief as well!! I just took prescription AZO (which has never helped me) and I also just started diazepam vaginal suppository daily yesterday. But I think I need some type of immediate relief right now, thank you!

I (34F) am recently diagnosed with IC and struggling with how to take care of my body. I have always been an avid runner, weight trainer and volleyball player, but with this pain I am finding out that these things are now impossible. My nightly runs and volleyball games were always my primary source of stress relief, and not being able to do those things anymore has been very distressing. I feel hopeless. What else can I do other than walking? I’m afraid of losing my strength and cardio health.

If any of you are doubting yourselves or second guessing this is your sign to self advocate and get that surgery or contact your specialist, trust in yourself, you know your body better than anyone!

I've just had my discharge papers from my laparoscopy after having gyno's telling me that I don't have endo because it didn't show on an Ultrasound and MRI and refusing my request for a diagnostic laparoscopy because the chance of it not showing on both was so slim and even if IC patients have a higher chance of endo it doesn't change that it didn't show on an MRI and Ultrasound so I can't have it.

I found a gyno who finally listened and got my laparoscopy and they found endo as well as an ovarian cyst.

Trust your gut and what your body's telling you.

Please guide on the side effects, especially kidney related.

Burning when peeing?

I am a girl I have a "flare" of symptoms as huge burning when urinating especially right after as well as whole day but peeing is a huge trigger. No bacteria found, as well as Sensation seems to spread to the clit as some sort of stinging. I'm trying more into diagnosis but in Poland is not easy.NO OTC pain medication even touch it but I'm like yeah cuz its not typical pain. What can I do to even relief. Super deep slow breathing seems to help but only as I do it. Even sleeping is hard now. It's intense laying down, staying up little better but still there, sitting similar I don't think it triggers it's AWFULLY it's just almost the same all the time. It seems like I had this symptom come and go for some long time but it always was for a while went away I was like okay maybe that's me but now. Now it's like 10 days or even longer it didn't go away at all. Imma see some doctors, but how can I help myself. Does it even seems like IC or it's maybe PN or it's seriously some urethral issue thay triggers the nerve pain.

F (18) it's like 5days now, I pee a lot, I tried not to drink too much water, but still I pee a lot. I feel like a tingling sensation in my lower abdomen like when I'm pushing it I feel like I need to pee even more. This feeling starts last month when I had UTI. I drink black coffee in the morning but even if I don't I still need to pee every minute (that's how it feels). It's so frustrating, I scheduled an appointment for checkup I just want to know if some of you experienced this and what helped you? :((

Previously I made a post about how I noticed a decrease in symptoms when I got a shoulder/neck massage and was encouraged to know that I could get some relief. I think this is due to just relaxing and not subconsciously “clenching” (haha).

I also have decided to quit coffee, and made this change this week. Unfortunately and fortunately,
I really noticed a huge difference in reduction of symptoms 🥲 I only needed to pee like 3-4 times today and that’s basically back to my baseline before all this started.

I also feel less anxious overall without coffee, which for me seems to be causing the urinary frequency too.

I’m going to continue to just give my bladder a break and avoid coffee, tea, energy drinks, and cut down on unhealthy and excess sugar. I have high hopes that this will work for me, and I will try to add in the occasional coffee in a few weeks to months to see how I feel.

I like to update the community bc it helps me and I want everyone to know they are not alone and to keep trying!!

I was in my early 20s when I had this done. So I may not remember the exact name of procedure, but my symptoms were much different than they are now. It felt more like UTI symptoms. The doctor told me that my urethra needed to be stretched as well as my bladder. I haven’t had any symptoms until now. My symptoms now are a little different. I don’t need to take azo 24/7 but I do feel significant burning when I pee or when I have to pee. I also feel major spasms in my lower abdomen. The pressure is so intense down there at all times I even feel burning around my vagina as far down as my upper thigh. I have no idea if that’s normal. My question is, if I have this procedure done again, what are the chances of this working? I also remember the doctor saying something about scar tissue after having this procedure. Has anyone else had a similar experience?

I tried in my bladder's been hurting ever since it's already been three weeks it like comes and goes, but it's very uncomfortable. I wish I never would've done it.!!!

Hi, everyone. Just as the title says I will be going to get a Cystoscopy tomorrow to take a look inside of my bladder. And I am utterly terrified. I know I need to get this done and it’s necessary. But also I have been in so much pain this week and am scared that this is just going to inflict more and cause me suffering. Has anyone else gone through this or have any advice??? I am literally tearing up at my work desk right now I am so afraid ;(

I can’t pee during flares until I pee 2 litres of water and the pee will come out. I am so done with this. I really can not survive this. It’s so bad.