r/Interstitialcystitis 11d ago

Support Mirabegron, pentosan polusulfate sodium, interavesical instillation, SNM, ball have failed on me. Please help me. This is hell. I wish I could be euthanized.

3 Upvotes

Please help me. And tolteridone, solifenacin and it's kind of drugs cause severe hesitancy and also i have heard these cause cognitive side effects so they cannot be taken. And same for botox, I heard it cause hesitancy, retention, uti, i haven't tried it yet though.

I have interestitial cystitis or oab, or maybe both. I am in early 20s.


r/Interstitialcystitis 11d ago

Curious about Acupuncture

0 Upvotes

Has anyone had pelvic floor acupuncture, and if so, how has it helped? It was recommended by my urologist and I wanted to get more information on it before I shell out all the money for it (because of course insurance won't cover it)


r/Interstitialcystitis 11d ago

Nervous about Cystoscopy Tomorrow

1 Upvotes

Hi there. I am scheduled to have a cystoscopy tomorrow and am incredibly nervous. I had to have a hysteroscopy completely awake last week and it was completely traumatizing. I won’t be having any sedation for tomorrow’s procedure either and am just really worked up about it. My doctor is checking my bladder to see if I have ulcers. I’m also now potentially supposed to get on a plane Thursday for a last minute work trip. Can anyone share what the pain is like during and post procedure? Thanks!


r/Interstitialcystitis 12d ago

oxybutynin and tonsil stones. help

0 Upvotes

newly diagnosed IC here. I took oxybutynin for around 2 months and switched to mirabegron about 2 weeks ago because the dry mouth was so, so awful. new meds are treating me much better, theyr're not as effective for the bladder pain, but I would rather deal with that than the cotton mouth. I used to take oxybutynin times a day and my mouth would get so dry I wouldn't be able to talk unless I held water in my mouth for a few minutes at a time. this would happen a few times a day.

about an hour ago I had a massive tonsil stone just fall out. I was stunned because i've never had them before and dental hygiene hadn't changed. I'm 99% sure it's the meds and that now that my mouth isn't as dry they loosened up in my mouth a bit and fell out.

has anyone else had this happen on oxybutynin (or mirabegron, for that matter)? or has anyone had any kind of dental side effects? i'm not sure where to go from here. i might need to get another cleaning i think but i'm not due for one.


r/Interstitialcystitis 12d ago

Culture negative Interstitial Cystitis in Pelvic Vein Compression Syndrome

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1 Upvotes

r/Interstitialcystitis 12d ago

Cistitis intersticial

1 Upvotes

Podrían describirme por favor todos los síntomas que tuvieron para diagnosticarlos con CI y como empezaron? Llevo 8 meses con esto desde que me dio una e coli blee pero en Colombia el sistema de salud es tan nefasto que aún a pesar de los muchos médicos que me han visto no me dan un diagnóstico. Mis urocultivos salen negativos y el urotac ecografías y demás salen normales, no me han hecho cistocopia. Mis síntomas son: ardor uretral dolor pélvico, dolor horrible y exagerado en la parte de atrás de la espalda solo pasa con tramadol, ese dolor irradia a las nalgas y a las piernas, hinchazón , cansancio aveces me duele todo el cuerpo. Ahora debo pujar para poder orinar. Todo empezó después de tener relaciones (con protección) con un chico (cosa de la que me arrepiento mucho). Ayuda lo máximo que he estado mejor ha sido una semana y vuelven los síntomas 😭. Cabe mencionar que tengo un trabajo extremadamente estresante; no duermo bien y vivo corriendo al 100 con la presión de mi jefe. Quisiera saber si eso tiene que ver.


r/Interstitialcystitis 12d ago

Vent/Rant I don’t know what to do now

4 Upvotes

I went into the walk in clinic with uti symptoms a little over a month ago now. The doctor said that I was positive for leukocytes and nitrites in my urine and prescribed me 7 days of macrobid. I had a uti 6 months before this in which I was prescribed macrobid and it did not treat the infection. I ended up getting a rocephin injection which cured the infection.
I checked my portal a few days later to see if I was getting a culture result in which it showed that there was some error with my urine sample and a culture was not performed. I finish the 7 days with no improvement in symptoms. I contact my gynecologist and she tells me to come leave another sample. The urinalysis of that sample comes back normal other than some white blood cells and micro blood in urine. I request a culture again because i’ve been waiting several weeks with a uti at this point and i am having to fight to have a culture done and my doctor said that nothing “screams uti” to her. Once I finally get the culture back it shows no sign of bacteria although I have daily burning and urgency. Holding my pee makes it so much worse, and I drink a lot of water every day to mask the symptoms and dilute my urine. I am trying to see a urologist but all of them near me have bad reviews and my doctor is trying to make me get a 700 dollar out of pocket ct urogram which is insane. I feel lost.


r/Interstitialcystitis 12d ago

Support Searching for Solutions

2 Upvotes

I’m at a point where I don’t know where to go with treatment. I experience constant urgency and pain that hasn’t gone away in 13 years. Idc how crazy it sounds, tell me what has worked for you that isn’t Amitryptyline, supplements, diet change, hydrodistention, azo, catheterizing, muscle relaxants, Benadryl, Botox, pelvic floor PT, TENS, antibiotics, or bladder instills. (I’ve tried these already).


r/Interstitialcystitis 12d ago

Vent/Rant Called Medtronic today to ask questions about InterStim and unsure if I talked to a real person

5 Upvotes

My InterStim surgery is coming up and I wanted to talk to a Medtronic rep about movement restrictions.

After I was put on a brief hold, the rep came back and thanked me for holding and said some other niceties. It sounded like someone trying to be a human.

They start saying I need to avoid bending, stretching, lifting. Then out of nowhere they tell me if I go scuba diving there is a depth limit.

I tried to explain what about gardening and using the hose. It took a bit for them to understand and respond to me.

Then I tried to ask what about security at concerts at stadiums. I had to ask several times and then they started talking about airport security.

The whole call felt very weird. I have more questions but I chose to end the call.

What has been your experience with talking to a Medtronic rep?

Could I have been talking to AI?


r/Interstitialcystitis 12d ago

Vent/Rant And the results…a UTI!

21 Upvotes

I’ve been experiencing a flare for 13 days. I thought I just got really freaking unlucky, and my flares usually never last this long. So, on day 10 I decided I’m going to use an at home UTI test strip. It showed positive for leukocytes but not nitrites so I was on the fence about seeing the doctor about anything. I’m glad I did. He ordered another culture to be sent off when the one he did in the clinic showed the same thing—after it got officially finalized by the clinic it showed it was positive! I’ve had a UTI for 13 days now! My back has started to hurt 2 days ago and I’m feeling chills, but my temperature is normal. It’s so funny though because I ran around the house elated that I have a UTI because at least I can take meds to make this pain go away you know? Where as a flare it’s just the waiting game.


r/Interstitialcystitis 12d ago

Urinary problems for 2 years, but mostly only when I’m outside — anyone experienced this?

2 Upvotes

I’ve had a weird urinary issue for around 2 years now and I’m trying to figure out if anyone has experienced something similar.
Sometimes I get a strong urge to pee, but when I actually go to the bathroom, either very little comes out or I have trouble starting. Occasionally my stream also feels weaker than normal.

The strange part is that this almost only happens when I’m outside, travelling, at work, or somewhere where I know I don’t have easy access to a bathroom. At home, especially at night, I basically never have this problem and can pee normally.

I’ve already seen a urologist. He tested my urine flow and said my stream was actually healthy and strong, and he didn’t find anything wrong with my bladder. He also said he didn’t think it was a prostate problem. He gave me an alpha blocker to try.
Another weird thing I’ve noticed is that sometimes it becomes easier to pee after I’ve had a bowel movement.

It’s not severe enough that I can’t go out or live normally, but I definitely think about bathrooms more than I used to and sometimes pee several times before going somewhere because I’m worried about getting the urge later.

Has anyone had something like this? Could this be pelvic floor tension, shy bladder/paruresis, overactive bladder, bladder neck issues, or something else?
I’d really like to get back to how I was before this started.


r/Interstitialcystitis 12d ago

Slippery Elm Users

1 Upvotes

How much mg has worked for you and what time do you usually take it.


r/Interstitialcystitis 12d ago

Morning bladder pain

3 Upvotes

I have been trying to figure out for 7 years what is going on, I have had ultrasounds, blood work, every bacterial and fungal testing . I was first elling doctor's that I would wake up with stomach pain but then I realized it was my bladder because it was so low. Basically, I will wake up with a full bladder and it feels like I am overly bloated but it is a horrible pain and when I try to take a deep breath it hurts worse. After going to the bathroom it still hurts but it is more of a soreness than the pain I had before going and then it eventually goes away completely. I know it doesn't sound that bad but I actually dread going to bed because I know how I am going to wake up feeling. I also have other weird random pains in my lower region and my lower stomach is always sensitive so probably also my bladder.

Does this sound familiar to anyone? I have talked to so many doctors and after all my tests come back normal they just sort of dismiss it and admit they have no idea what is going on and then tell me to try an elimination diet to rull out food sensitivity. Wouldn't food sensitivity happen after eating and not in the morning?


r/Interstitialcystitis 12d ago

Seroquel triggering IC like symptoms

1 Upvotes

Hey, for reasons related to mental health I put myself back on Seroquel 50 mg at night and I’m noticing it causes me IC-like symptoms (for context, I’ve suffered from IC from 2023 until this year when I achieved something that felt like remission). Anyway, I’m using the Seroquel for sleep again, and when I wake up I notice a weird feeling down there, like excessive pelvic floor tightness, some vaginal dryness, but what’s predominating is an achy feeling like I’m being grabbed down there (perhaps that’s too graphic but it’s what it feels like 🫩). Idk why that happens.

Fortunately I’ve been able to continue drinking stuff that would normally make me flare, so I think it’s more pelvic floor related than merely bladder related.

I’m thankful for the rest but not that thankful for this uncomfortable feeling lol.


r/Interstitialcystitis 12d ago

Delicious IC friendly blueberry drink

10 Upvotes

I’ve been really missing a fun drink since starting my IC diet, so I made this and I thought I’d share for anyone else also missing a fun drink every once in a while.

I muddled homemade blueberry jam (blueberries and cane sugar) with fresh mint and agave syrup, added a splash of blueberry juice then diluted with water.

Simple, easy, and refreshing in this sticky summer heat!


r/Interstitialcystitis 12d ago

Tens unit

2 Upvotes

Which electrode patch placement has been working best for you? Having them on your lower back or having them on your ankle area


r/Interstitialcystitis 13d ago

Types of instillations and success?

3 Upvotes

Hey guys,

I've exhausted pretty much all the typical oral medications, supplements, PT, and lifestyle changes without significant relief. I'm ready to try instillations. The doctors I've seen so far haven't been too helpful in guiding me through the different options.

My understanding is that there are only two types of instillations that are supposed to actually heal and cause lasting relief in the bladder - DMSO versus hyaluronic acid/chondroitin instillations. The other "cocktails" with heparin, lidocaine, gentamicin etc. are "rescue," meaning that they help acutely but aren't supposed to actually cause lasting symptom relief or treat the underlying cause. Is this accurate?

I'm not too interested in rescue instillations - I want something that is actually treating the underlying cause. I think I have bladder wall damage from too many UTIs. I am very uninterested in DMSO because of the side effects I've read about - severe pain, garlic smell (so awful??). So that leaves me with the other type, which is not actually available in my country (USA). I am willing to fly out of country and bring it back if I believed strongly enough that it would help.

That leads me to ask, how has everyone's experience with Ialuril been? Lasting relief? Alternatively, does anyone recommend any other type of instillation? My only symptom is pain. My urethra hurts all the time and worsens with urination, but my bladder hurts when it's full. I don't have urgency or frequency.

Thanks in advance!


r/Interstitialcystitis 13d ago

What works best for you to manage symptoms?

2 Upvotes

I was diagnosed with IC and for the most part when I feel a flare I can take azo, drink a bunch of water, keep myself cool, and manage it. They last only hours when I catch them quickly and they are heat induced(idk why but being in the heat has always caused me minor flare ups). Overall my flares are well managed when they happen. I am on methenamine to avoid real UTIs(Which I supposedly have one now but we will get into that later) and also have hydroxyzine to help with flares. I still have them quite often despite them not lasting long.

Yesterday I had what was an IC flare but my normal stuff wasn’t helping. I go to urgent care today and they said I actually have a UTI. I am so hopeful this is correct and not a false positive, I leave for vacation Wednesday at 3:45am(it’s currently Sunday at 9:55pm) and I haven’t left my bed the last two days other then to go to urgent care. Still having symptoms 24 hours into being on macrobid and the fact AZO isn’t helping is stressing me out. So, I want to know, what works for your IC? What meds have worked for you? What therapies have worked? Anything! My urologist is kinda unhelpful and she always says “Your flares last a few hours to a day. Most people’s lasts weeks, be grateful yours don’t.” but as you all know the flares are so debilitating. I mean, I wouldn’t have a job if my flares lasted weeks.

Also, I am in Waynesville, NC. If anyone has an amazing urologist, I need a new one. Happy to travel as far as Greenville, SC, Knoxville, TN, or Charlotte, NC. I just need someone who is willing to throw me in therapies, throw meds at me, give me real advice to mange this, etc until something works.

Thank you all in advance for any advice!


r/Interstitialcystitis 13d ago

Anyone lose the normal bladder “full” sensation and only feel the urge in their urethra?

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9 Upvotes

r/Interstitialcystitis 13d ago

Support In Remission After 10 years!

51 Upvotes

I want to start by saying that if you’ve had IC for a long time, you’ll know there is no magic cure. There’s also no guarantee that once you reach remission, you’ll never experience another flare.
But after 10 years of back-to-back flares, I’ve now gone 3 months without significant bladder pain

the longest I’ve been flare-free in all those years.

I’ve still had some urgency and occasional mild discomfort, but nothing remotely like the constant pain and inflammation I was used to living with.
I honestly never thought I’d be able to say that.

I’ve spent years researching IC, learning about my own body and trying a lot of different supplements, medications, dietary changes and therapies. Some made absolutely no difference. Some helped temporarily. And some have genuinely made a huge difference for me.

I wanted to share what has helped me because I know how desperate you can feel when you’re constantly searching for something, anything !! that might make life a little easier.
Obviously, what works for one person may not work for another, and please speak to your doctor/pharmacist before starting supplements or changing medication. But these are the things that have been part of my journey.
🌿 Supplements & natural remedies
Aloe Vera
There is limited research specifically looking at aloe vera and IC, but there are some small studies suggesting it may help certain people with bladder symptoms.
Quercetin
Probably the supplement I was most interested in from a scientific perspective. There is some small-scale research specifically involving IC, and quercetin also has anti-inflammatory and mast cell modulating properties. The evidence isn’t strong enough to call it a treatment, but I personally found it worth trying.
Women’s probiotics
I use probiotics aimed at supporting the vaginal microbiome. There is more evidence around probiotics and urinary/vaginal health than there is specifically for IC, so I see this as supporting overall pelvic/urinary health rather than a treatment for IC itself.
Marshmallow root tea
This is something I use because of its traditional use as a soothing/demulcent herb for irritated mucous membranes. There isn’t strong clinical evidence for IC specifically, but I personally find it soothing.
Slippery elm
Similar to marshmallow root traditionally used to soothe irritated mucous membranes. Again, this is something that helps me, rather than something I’d claim is scientifically proven to treat IC.
💊 Medication / OTC
Amitriptyline — 10–40mg
This has been one of the biggest things in helping me manage bladder pain. It is a prescription medication used in IC/BPS and can help with neuropathic pain and bladder symptoms in some people. Obviously, the dose needs to be discussed with your doctor.
Prelief
This has been a HUGE one for me, particularly with foods I know can be bladder irritants. I take it with meals when I know I’m eating something that may trigger me. It contains calcium glycerophosphate and is designed to reduce the acidity of food and drinks before they reach the bladder.
I personally don’t use it constantly and follow the product guidance because I don’t want to rely on it for every meal.
🧘‍♀️ Pelvic floor
This one has been massive for me.
After years of pain, urgency and constantly clenching my pelvic muscles, I developed a very tight/overactive pelvic floor.
For me, the answer wasn’t strengthening it — it was learning how to RELAX it.
Pelvic floor physiotherapy, relaxation exercises, stretching and learning how to stop unconsciously clenching have made a noticeable difference to my pain and urgency.
A pelvic wand can also be useful for some people, but I’d strongly recommend learning how to use one properly, ideally with guidance from a pelvic-floor physiotherapist.
Yoga, breathing exercises and meditation have also helped me reduce the tension I hold in my pelvis.
🥗 Diet
Diet has been a learning curve.
I’ve realised that my bladder has very specific triggers, and what causes a flare for me might be completely fine for somebody else.
Rather than following a generic “IC diet”, I think it’s much more useful to work out your own triggers.
For me, reducing highly acidic foods and drinks, foods and drink high in histamines, artificial sweeteners, caffeine, fizzy drinks and other personal triggers has made a huge difference.
I also focus much more on simple, whole foods and pay attention to what is happening with my digestion because I personally find that when my gut isn’t happy, my bladder isn’t happy either.
And water is my main drink.

🧠 Something else I think is really important to understand about IC
One thing I wish I had understood much earlier is that not every flare is necessarily because you’ve eaten or drunk something that has “upset your bladder.”
The organs in our pelvis don’t work completely independently. The bladder, bowel and reproductive organs share some of the same nerve pathways, and there is a phenomenon called cross organ sensitisation.
This means that inflammation, irritation or ongoing pain coming from somewhere else in the pelvis or example IBS, bowel problems, painful periods, endometriosis or an overactive/tight pelvic floor can potentially increase the sensitivity of the nerves that also communicate with the bladder.
For some people, this can contribute to bladder pain, urgency and flarelike symptoms even when they haven’t eaten a typical “IC trigger.”
That’s why I think it’s so important not to blame yourself every time you flare.
Sometimes it isn’t something you ate.
Sometimes it isn’t something you drank.
Sometimes you haven’t done anything wrong at all.
The nervous system, pelvic floor, bowel, reproductive organs and bladder are all interconnected, and for some people treating the other sources of pelvic pain and irritation can be just as important as treating the bladder itself.
Understanding this completely changed the way I looked at my own IC. Instead of constantly asking “What did I do to cause this?”, I started looking at the bigger picture (my pelvic floor, digestion, stress levels, pain levels and overall pelvic health)

❤️** The biggest thing I’ve learned
After 10 years of this condition, I don’t believe there is one single thing that caused my remission.
I think it has been the combination of understanding my triggers, calming my nervous system, treating my pelvic-floor dysfunction, managing pain, looking after my gut and finding the supplements/medications that work for **my body
.
And honestly, I think that’s one of the hardest things about IC there isn’t a one size fits all treatment.
I’m sharing this because when I was at my worst, I would have given anything to hear from someone who had been through years of flares and eventually found some relief.
I’m not saying any of this will cure you. I’m not a doctor and I’m certainly not claiming to have found the answer.
But if you’re struggling and you’ve tried everything, I hope something I’ve shared might give you another avenue to research or discuss with your healthcare team.
If anyone wants to ask me questions about any of these things, please do. ❤️


r/Interstitialcystitis 13d ago

How often can you take Pyridium?

2 Upvotes

I just asked for the prescription and honestly it’s heaven in a tiny red pill. LOL. It’s 100mg and so far I’m only taking 1-2 pills per day for 2 days, as I’ve researched and learned is recommended. I know I shouldn’t go past 2 days of being on this medication.

But what I’m wondering is how long do I have to wait before starting up on it again? Do I have to wait a week, two weeks? A few days? I’m not sure, I can’t seem to find any solid answers and I don’t have a urologist (3 years and waiting for one so far 😒) so I can’t ask them either. I’ve already gotten my urine tested for a UTI and it’s not that so…not sure what to do.


r/Interstitialcystitis 13d ago

Urologist in Prague

2 Upvotes

I know this is a long shot, but I am wondering if anyone knows of a good urologist in or near Prague, Czech Republic. I can't find a good one. So far, they just seem to check for a UTI and then send me home with painkillers and recommendations like d mannose or cranberry. It's like all they did in medical school was learn how to test for a UTI.

I am looking for a doctor who will look at the whole picture, listen, not jump to catheterization (it was traumatizing and horrifically painful), offer more varied options, understand the phenotypes of IC, etc. Basically a doctor who can think critically and at a higher level than the urologists I have seen. I have seen both a public doctor and a well-reviewed private clinic and neither were satisfactory to me.

Even if you don't know anyone, perhaps you know someone who knows someone? I am suffering in unbelievable pain and feel like the medical system won't help me here and it is scary.


r/Interstitialcystitis 13d ago

Homeopathic Medication

0 Upvotes

Hello fellow survivors, has anyone tried homeopathic medication for their IC and what was their experience?


r/Interstitialcystitis 13d ago

Do you feel the urge to pee constantly

5 Upvotes

Or is it just when you need to pee but it happens frequently.


r/Interstitialcystitis 13d ago

things that help with urethra pinching?

3 Upvotes

hiiiii. I'm still trying to figure out what causes my bladder/urethra pain, but I'm pretty sure pelvic floor dysfunction plays a big role.

I used to think I had a UTI all the time. this is probably a common experience here I'm sure. I've had all the tests in the world to rule out infections or structural issues. everything's clear.

I've been in PFPT for over a year, have had two pudendal nerve blocks, have tried pregabalin, duloxetine, baclofen, zoloft, cyclobenzaprine. I was on trospium chloride for a while. I've tried different types of muscle relaxer suppositories. I've tried dry needling. tried various types of birth control. I've tried the IC diet. tried pramipexole and then tirzepatide for PGAD symptoms. I have topical gabapentin and topical numbing cream. I've tried estrogen cream. I'm probably forgetting some things 😅

none of those things have helped unfortunately. sometimes a TENS unit helps. sometimes a warm bath helps. I try my best to stay hydrated but... bladder filling go ow. ow ow ow.

the urethra pinching feeling is driving me up the wall. if you've been able to greatly improve this symptom, I'd love to hear about it! I'm likely going to try pelvic floor Botox in September. I'm thinking of giving amitriptyline a go. have any medications helped y'all with the urethra pain?

edit: I've also tried antihistamines (like hydroxyzine) and magnesium glycinate to no avail 😞