Having this procedure next month! How as everyone’s and what were your results.. “IC” for a year now but of course I’m stressed it’s more serious.

The last week I’ve had awful back pain, terrible pressure, weakness. I have had that pressure to pee just about the whole year constant with some good days but all in all I felt like I was in a constant trigger… could this back pain and tiredness be coming from ic? I have surgery in may (CYSTO, BLADDER BIOPSY/HYDRODISTENTION) kinda nervous! I am prone to UTIs and was certain I had one but my urine culture came back “no significant growth” I just wonder if she had already started me on a antibiotic a day prior to testing it threw my results off? The nurse who took my urine done a dip test and told me I did have some blood in my urine & white blood cells but once she sent it off it was nothing.. no burning during irritation.. anyone else experience this?

I’m currently on a weight loss med that dehydrates the heck out of you and on top of it you have to take miralax almost daily to avoid the constipation symptoms. I notice if I go a couple hours without drinking any water my pee burns and my bladder will burn for 30 minutes afterwards. After I drink some water with electrolytes in it and get it flowing in my system the pain usually stops. I have never had flares because of dehydration before and I also never get burning. I’m trying so hard to drink water but I just am not thirsty often and don’t want to drink all the time. Any tips to get in more water? And do any of you have experience with dehydration flares?

Hello, I’m in horrible pains but I still don’t have any doctor who treats me. I’m even in a hospital now under morphines but no doctors and they don’t know IC and don’t try to figure out what I have.

In a different hospital they didn’t do the biopsy but also did not try to figure out what is it what I have instead. So I’m not treated at all. I’m getting worse and worse. The Natrium Level is dangerously low now too but drinking is the only what helped me a little. Without drinking a lot of water I would have to be on morphine non stop.

If you know someone in Germany please share the info with me. I can’t no more…

A lot of people on this subreddit talk about the things they did to resolve their symptoms. But I've seen many people say that the swelling and pressure in their abdomen, also known as "IC belly", is a persistent symptom. I have never seen anyone here explicitly say that their IC belly went away after any sort of treatment or medication.

Is there anyone here who has gotten the swelling to go down? How did you do it?

This journey started for me in 2016 after taking antibiotics.

Maybe 5 times since 2016, the last being almost 4 years ago I get symptoms of a uti without a uti but that’s not my concern. That usually clears up very quick.

My concern is my bladder is painful to touch through the vagina 24/7. It use to be a lot worse than what it is. I can have sex; just not doggy style where the bladder is hit(feels similar to a cervix )

Does anyone else experience this.

I don’t have issues with urgency or pain when my bladder fills or empties

Hello all! I’m hoping to get help from people that might have gone through something similar or might have a clue as to what I’m going through. 25 yo F. I haven’t drank coffee or alcohol in over a month. Starting on April 3 I started feeling this pressure in my bladder like I had to pee more than usual like UTI symptoms. I got my urine analysis back from Minute Clinic April 7 saying they found 1,000-9,000 CFU -ML Group B Streptococcus isolated so they started me on Cephalexin antibiotic. I still wasn’t feeling better at all with the main symptom being bladder urgency and frequency. It felt like I could pee so bad constantly, like my bladder was completely full. So they switched my antibiotic again to Amoxicillin for 7 days which I am finished with now . I went to my primary care provider and they took a urine analysis and it’s came back with no infection present. I got a vagina swab done to make sure I didn’t have a yeast infection bc there was a slight burning on the general outside part of my vagina sometimes . It came back for Bacterial Vaginosis so they started me on Metronidazole for 7 days. It is now April 21st and I still feel this constant full bladder feeling like I have to pee so bad all the time. My Dr is referring me to a urologist but I was told it will be WEEKS till I even get a call back. My situation is grim and I just have to live like this. I’ve tried getting an appointment myself but the gyno offices my insurance covers aren’t taking new patients till July&August and there’s no urologist under my insurance besides the one my Dr. referred me to. It feels like I will never feel better. I am very interested in alternative medicine or supplements that have helped with this full bladder feeling. I think my bladder is inflamed? but I don’t understand why it just hit me one day all of a sudden or why this is happening. And of course I can’t know anything till I wait months for a specialist. Is there any one that can help me I am so so desperate. I am open to any and all questions

I have an ultrasound of my bladder and kidneys tomorrow. My understanding is that IC can’t be diagnosed via ultrasound so what is it looking for exactly? Does anyone know?

I've always had IC, but over the past 5 months I've been in and out of A&E with all the symptoms of a kidney infection but without the infection, including peeing a lot of very visible blood. I've also been so tired, I'm having to take 3 hour naps pretty much every day. My urologist performed an emergency cystoscopy to with biopsies to check for lesions or bladder cancer and everything came back clear. I've also had an ultrasound of my bladder and kidneys and a kidney function test, again they came back clear. I know I should be relieved at the clear results but it's worse not knowing what's causing all of this 😔 I'm now waiting for a CT scan and urodynamic testing but I've pretty much lost hope that they will find answers.

I’ve always used benzos (ie diazepam/valium/xanax etc) very sparingly because most people that have experience with narcotics that cause physical dependency all seem to agree that benzodiazepine withdrawal is far worse than opioid withdrawal.

Thus I have never been physically dependent on benzos due to this healthy fear/respect of them. Opioids on the other hand I have used extensively before I even had IC when I went through a decade of spine surgeries and also when my IC pain began. So I’ve been through opioid withdrawal many times and don’t fear it too much and understand the trade off I’m making if I take them.

The problem with opioids for pain in general is that tolerance builds (you get diminished analgesic effect as time goes on and need to increase the dosage to obtain the same amount of pain relief lower dosages achieved early on). You can also reset this tolerance by going through withdrawal then start the vicious cycle over again and have good analgesia in the beginning stages of use again.

With regards to IC; I believe that the pain relief achieved through benzos (at least in my case) is a result of the muscle relaxant properties these drugs have - they have very minimal analgesic effect in the way that an opioid does in that an opioid causes your brain not to feel pain it otherwise would. For example, when I had chronic back pain and surgery benzos would barely touch the pain while opioids did well against it.

Alternatively to the muscle relaxant properties - it could be that the anxiolytic effect of benzos lowers our stress and that has some downstream effect that causes the bladder to hurt less.

Regardless of what the exact mechanism is for why benzos provide IC pain relief for some people, my main question, is this:

Will developing tolerance towards benzos result in diminishing returns on their use against IC pain?

I know that people that take benzos or abuse them fall into the same trap as opioids in the sense that they need higher doses over time to avoid withdrawals characterized by extreme anxiety.

If it is the muscle relaxant effect of benzos that is responsible for IC relief, will increased frequency of benzo use result in tolerance that causes diminishing returns? Or does the tolerance and diminishing returns that benzos cause only apply to anxiolysis/anxiogenesis and not the muscle relaxant effect they produce?

It’s a complicated question because I’m not sure whether it’s the muscle relaxant effect or the anxiolytic effect of benzos that brings relief. But feel free to provide answers to my question about tolerance vis a vis both hypothetical mechanisms of releif I’ve described.

Those of you that have actually developed physical dependency to benzos and have IC would be most equipped to answer this question; or your experiences would be most useful for me to have a better understanding of what I’m getting into if I use benzos more to the point where physical dependency develops.

Hopefully that never happens but I’ve completely gotten off opioids because they are a dead end and I actually think they make flares worse in the long term despite immediately numbing pain (there’s also some academic literature I won’t go into detail on that worries my that they could actually worsen pain and even IC itself through two different mechanisms - but this is very speculative on my part so I won’t go into detail here on that unless you want to talk about it).

since opioids are out of the picture I may end up reaching for the benzos more often and I don’t know what to expect with regard to their efficacy if dependency does develop.

Thanks.

My IC used to be more predictable. It used to be that my pain was at its peak 10-14 days before my period, then it disappeared during my period, and didn't return until 10-14 days before my period. This is how it used to be. It was predictable and I based my food choices on this schedule.

I just finished my period 4 days ago and I'm INFURIATED that I've already had 5 pain attacks today. Pain attacks which means 20 minutes of level 6 pain where I had to stop what I was doing and get in a position and just try to breathe. This is supposed to be my "free time" where I have relief for a couple weeks.

Just last month my symptoms were improving, my pain wasn't exceeding level 2, I was responding well to instillations, and I truly believed I was on my way to being symptom free.

And now here I am, in pain, having my regular life duties be disrupted, and now with more unpredictability? How is that fair??

I'm angry, I'm hurting, I'm frustrated, why is this happening? I just want to call my doctor and cry and beg him to heal me. I can't do this anymore. It's so fcking FCKING painful. On the body but on the mind too. I'm so mad and sad and fed up💔 I just want relief and if I can't have that I at least wanted predictability 💔

has anyone had pain RIGHT AFTER They fully empty their bladder/urine? Not constant, not before urination, but only after as it is completely emptied (the second it is emptied) super sensitive & spasm/burning pain kinda, like toward the bottom of my bladder near the pelvic bone/beginning of urethra (near the neck/end of bladder) MAYBE?? I don't know if a kidney stone is stuck there, crystals/cysts, etc, but I am now on antibiotics & going to see if these help.. and I won't be an asshole & stop taking them halfway through. I've never experienced a UTI like this before. My dr tested me for uti and saw normal bacteria & moderate blood (and when I wipe I see some blood dots that're light light pink) on the toilet paper. Which is odd to me... this started happening all very suddenly like 3 days ago almost 4 & it's scaring me & driving me insane. Sometimes it dulls & isn't as bad, sometimes it's bad. Looking for someone who has gone through this & what they had! I want to get a ultrasound and or catscan if the antibiotics don't work. Comment please & thank you!

I'm 5 days into a flare up and I have no idea what caused it. There are forest fires in my area and I'm thinking maybe the smoke in the atmosphere is the culprit? Is that possible?

I first started having IC symptoms when I was about 17, also about when I started having sex, and back then (18 years ago now, I feel so old LOL) IC wasn’t so commonly known about especially in the area I lived in so it went undiagnosed for 4 years. The symptoms appeared as mimicking bladder infections, urethral irritation and an aching bladder. As a result my primary care physician would put me on a 7-10 day round of antibiotics anytime I would have these issues and when they became frequent with no relief at times she would even put me on them for 30, sometimes 60 days to “prevent” infections. By the time I was 20 I became pretty intolerant of all antibiotics and I had become so sick from all the antibiotics I was sent to a urologist and internal medicine doctor at Stanford University where they ran slews of tests with no real answers coming back and for another year the same routine with antibiotics. I even had doctors tell me there was nothing they could do for me and I needed to just go home, not wear underwear or pants and stay cool (don’t sweat), swim or take baths and no more sports. I was a marathon runner, soccer player and ballerina so it felt like a death sentence to hear my life was now to be lived on the couch. I started going online and searching for answers and I found a forum about IC and it sounded exactly like what I had so I contacted some of the doctors in CA listed on there from people that were having success and was finally diagnosed at 21. They put me on Elmiron and within 5 days I was having bad reactions and immediately stopped, bloody urine, my gums bled when I ate, constant chills I thought I had the flu, vomiting and nose bleeds. I ended up doing the elimination diet and finding the triggers and that managed it for about 5 years until the bladder aches, achy joints, and urethra irritation started again and I did also start to actually get frequent UTI’s so we were back at square one with the antibiotics too. By this time I had found internal and functional medicine and doctors were testing for and looking at Lyme disease and starting stem cell treatments and other great therapies like IV high dose vitamin c and I was going in a hyperbaric oxygen chamber for an hour a day so symptoms started going away pretty fast and there was rarely an actual infection. Over the years till now I’ve only needed antibiotics a handful of times and sometimes I could power through my body not tolerating them well or Cephalexin or Clindamycin (two I tolerate) treated them or even better we were able to treat it with the vitamin c and peptides like TA1 and LL-37. Well now I’m pregnant, first one, and I anticipated flare ups and difficulties but not like this. I’ve had 3 UTI’s in the first trimester and I recently got an inner ear infection and my MD said Cephalexin isn’t an option I would need to try amoxicillin. I regret it so much. After just the second dose I became dizzy, light headed, nauseous and am barely able to eat or get out of bed. I feel hopeless, I can’t use the typical protocols of the vitamin c or peptides and am in pain from the infection and reaction to the antibiotics. Anyone else have this problem?! What antibiotics can you tolerate?

Ive been dealing with bladder problems for a few weeks now, I have been tested for a uti and put on antibiotics but the results were negative. The doctors I’ve seen think it might be interstitial cystitis and I have just been put on a medication for it but it won’t start working for a few weeks. I have the constant urge to pee and have been peeing at least 14x a day and it’s been somewhat manageable the past few days. Today I was not smart and drank some lemonade without thinking about the acidity irritating my bladder now I’m so uncomfortable I feel an unbearable need to pee even when I can’t. Is there anything that helps flush it out quicker and get relief asap? I’m scared it’s going to feel this bad for days I’m so uncomfortable

I just had an appointment with a Gyno, hoping to get a referral to urologist, I really identify with IC symptoms + Utis + Pelvic pain.

Gyno sent me home while I wait for what urologist said, and told me I had “myofascial pain/Pelvic Pain.

Booked me in for “trigger point injections”

That is all.

Has anyone heard of the term Myofascial pain? Could it really cause ALL my symptoms?

Thanks!

the one time I try and explain about the pain and cocktail of pdrugs affecting my libido he suggests that I'm no good for him and that it's such a vital part of the relationship for him

I have pelvic floor dysfunction and I was fine all day. I walked around three different stores though for a couple of hours. I had to GO to the bathroom like twice when I got home and that irritated my bladder but more than usual and my fiancé and I had a really bad argument and I broke down and lost it. So stress. I’ve been drinking water and took an extra Ditropan ER and still having urgency and spasms. I don’t want to go to the hospital. Anything that could help with this at home? Please. It’s killing me. I could scream.

Hey everyone! I bought AZO the first time I began to flare but never took it after seeing the cancer warning. It’s mentioned a lot in this group so I was wondering if anyone else shares this concern?

I’d love to have it as an option for pain relief but fear it’s not worth it.

Hi, I hope somebody can help me - I never had any problems with my waterworks until last year. Going through menopause in my early 50s and although I'm on a higher than usual dose of HRT, it's made me develop vulvodynia and what my specialists call Bladder Pain Syndrome.

I've had all the tests: bladder looks normal, they just say it's bad luck due to menopause. I actually have no peeing issues, even during the worst flare I only need to go every 2-5 hours, no reduced stream, no leftover feeling, urine same colour smell etc as always. Sometimes my urethra burns after peeing, sometimes not. At first, I was getting 2-3 days of a moderate flare that didn't stop me having a normal day every few months. But in the last 6 months, it's all snowballed and now I am almost constantly in a flare and my pain is 8-9 every second of the day and I am essentially housebound by it. I'm a single mother so I can't just do nothing, I have to do basic housework and look after my kids (13, b/g twins), but I'm exhausted and in agony. Nothing happened to trigger it, it just suddenly went this way.

I'm in the UK and the NHS has actually been very good: I'm on amitriptyline, I have regular pelvic floor physio because I do have a hypertonic pelvic floor, I also have IBS and a nutritionist has helped me work out a diet to help both my bladder and bowels. I take 3 different types of bladder support supplements and religiously take Prelief with every meal. I only drink water, lots of it, I use a pelvic wand at home and I try to do relaxation exercises every day. BUT NOTHING WORKS. The physio and HRT have got rid of the vulvodynia but the bladder pain is not budging.

Here in the UK, you don't get opioids for chronic pain, unless you're in hospital, they make you do CBT, and use OTC painkillers only. None of this works for me.

The pain is so bad that I feel like I'm in labour 24-7 except the cramps aren't in my womb, they're in my bladder and around my pubic bone. I was in hospital last month for gallstones and I was on a mix of morphine and codeine and my bladder pain didn't even go away then, that's how bad it is.

I'm starting to feel like I can't go on. If I didn't have my kids, who are such amazingly caring and patient young people, I wouldn't be here now writing this. I can't cope with this level of pain. It makes my legs tremble and buckle when I stand up. I don't know what to do when I'm doing everything the specialists recommend. I'm also single and I feel so lonely. I can't work, I don't live near my friends because I ironically moved away for my new job that I've lost now because of my health problems and have no support and no chance at ever having a relationship again if this all doesn't radically change.

I'm sat here crying because earlier I had to tell my kids that I might have to cancel their birthday trip in June if my pain stays like this. I not only never have anything happy for myself now I'm having to take away their fun too. Please, does anyone have ANY advice?

It's times like this I want a Foley catheter or for a surgeon to just cut my urethral sphincter. I don't care if it makes me fully impotent. Just let me constantly dribble for the rest of my life I just want some relief. The urgency and pain and retention is too much. 😔

What can be the cause of bladder trigone leukoplakia in young age,my sister has it too,its not caused by infection or bacteria stuff

I'm pretty new to this sub - mostly just been a lurker. I haven't officially been diagnosed but I suspect this may be my issue. I'm waiting on an appointment with a doctor to get the ball rolling (healthcare in Canada without a primary care doctor sucks). Here's my story:

About 2 months ago, I had what I thought was a UTI. I did a urine test, tried some antibiotics but the symptoms came back. (They didn't completely go away but they did lesson). So I had another urine test, this one with a culture. They asked me to wait until the results were back until prescribing another antibiotic so I waited. Got the results and the culture came back as mixed flora so they prescribed a different antibiotic because it wasn't clear what the bacteria was? These antibiotics made me so sick and on day 5 of 7 of taking them, my symptoms came back even stronger. At that point they told me I needed to see a doctor in person (this was all virtual care). This person also told me that all of my previous suspected UTI's (about 1 every six months) were not actually UTI's. I had no idea. I always got antibiotics and the symptoms eventually went away. But I have always felt like I had small bladder and needed to know where the bathroom was. I didn't know that peeing every 2 hours wasn't really "normal". But this time is different because these symptoms will not go away.

I wasn't able to get an appointment with a doctor for 6 weeks (which will be the end of next week). In the meantime, I have started the IC diet. I don't drink alcohol. I gave up coffee, citrus, tomato, soy, etc about 3 weeks ago. I've done bloodwork to check my kidneys, liver, diabetes, hormones, etc. and everything was clear. My urine test showed a high about of leukocytes, "few" bacteria" and yeast but the doctor wasn't concerned about that. I've started taking Pumpkin Seed oil and got some Prelief but I don't know what my triggers are because my symptoms will. not. go. away. I've lost quite a bit of weight because I feel like I can't eat anything. The symptoms just persist. It's been 6 weeks of constant urgency and frequency. No pain. No burning. Just the constant and continuous need to pee. This is so frustrating and discouraging. I feel like I can't do anything anymore. I can't go out because I can't eat anything and I'm so uncomfortable all the time and just always need to pee.

I have an appointment to talk to a pelvic floor therapist next week but I know that can be a slow process. I don't really know the point of this post except I feel lost and discouraged and I am desperate for any kind of relief. If anyone has any tips - or has experience anything like this, I'd love to hear from you.

My physical therapist keeps feeling something swollen or of a different consistency on the right side of my vagina when doing internal releases, but she isn't sure what it is. That is where I feel my constant symptoms of frequency, urgency, heaviness, fullness, and pressure, as well as in my urethra. Thoughts on what it could be and how to find out?

I have IC, and for the longest time my flare ups just randomly subsided a bit. Fast forward to now I’m about 6 weeks pregnant, and last week I thought I had a uti. Frequency, bladder pain, and a 99.3 temp. I went to the clinic, and they said I had a uti, and gave me a shot of antibiotics and antibiotic pills. 3 days after I get the urinalysis lab report, and it says there was no bacteria present in the urine? So I’m assuming this is an IC flare up? I’m legit miserable. The burning sensation and bladder pain are so annoying. I legit want to just be in a ball in bed. Idk if the pregnancy is causing the flare up? For those who were pregnant and with IC was there any medication that was pregnancy safe that helped a bit? Right now I’m not taking anything for the pain.

Post about how you've been feeling. Rants and nitpicking are welcome!

Tried any new food lately?

I’ve seen a few people say minoxidil made them flare badly. Is there any other medicine we can take?

Hello

For the past year or so I’ve been on and off with “bladder issues” I can’t pinpoint it if it’s IC, a uti or an overactive bladder. I’m new to the whole IC thing and I’m not diagnosed with having it.

My symptoms are feeling like I need to pee all the time but actually when I do go to the toilet I am passing urine. I also find when I have passed urine I still feel the intense urge to need the toilet.

I’ve had no luck with my doctor apart from them pumping me with multiple antibiotics which help short term then it can flare up again. Sometimes I can go months without it happening, I feel as if I’m suffering with it now and then I last had the same symptoms in January this year. I’ve cut out coffee, sugary and fizzy drinks and I’ve lost a stone in weight but it still flares up. I’ve no idea what it is but it’s driving me mad especially if I’m not near a toilet.

Any help/comments/advice/personal experience would be greatly appreciated. Thanks

I used to treat myself with d-mannose as long as it wasn’t a big flare up. I asked my doctor if I could continue with them when pregnant and she said ask a pharmacist. I did. They hadn’t ever heard of them before. Research is mixed and im suffering with a flare up at 7 weeks but nervous to take it. Has anyone had any experience with IC whilst pregnant. I’ve also moved GPs so I know they won’t necessarily understand IC/painful bladder syndrome and tell me to take pointless over the counter cranberry stuff.

So I’ve had interstitial cystitis for 5 years now currently 22o. Right now, I’ve recently stopped weed and drinking. on a week right now and once again, every second of the day , my mind instantly goes to my bladder telling myself I have to piss, as well as the most uncomfortable sensation down there you can imagine. The only thing that has worked a bit (and yes, I have literally tried everything in the book from pills, mris, to cystoscopy, which is when they stick a tube with a camera up my penis), was physical therapy stretches. Right now I’m crippled with anxiety, to the point I can’t even function whatsoever. I managed it a bit with weed and drinks over the years but I think it has made it extremely worse. I guess my question to anybody out there with this is if they’ve experienced something similar when stopping weed or alcohol? Cause like I said weed and drinking make it so bad, but now it is like 10x more bad, and I don’t want to go back to being an addict anyways… thank you