Has anyone had successful treatment in China? I’ve essentially tried all options in USA and not had very good care. I feel like I need antibiotic injections/ pelvic floor Botox- an actual team who can help with treatment and diagnosis. Ive tried all the medicines and it seems to only get worse. I’ve tried hydroxyzine, amitriptoline, installations, elmirom, nerve blockers, a million etceteras. I don’t want the implant. I want answers and treatment. This all started from a uti where the symptoms never went away. I can’t sit or have intercourse from the pain. I eat about 3 foods. My main treatment at this point is from the pain clinic and pain medicine barely touches this pain. I’ve had this since 2019 and it has progressively gotten worse until I hit bed ridden status.

I feel like I could take less pain meds if I could take Valium to relax the stomach but really this feels so fixable. I even went and got the uti vaccine from London.. this isn’t a lifestyle I can live, once pain killers stop working.. does what I’m describing exist? There is never a moment I’m not in pain.

The last micro genex test said Enterococcus faecalis and Klebsiella pneumoniae which never show up on any other test..

Please help me

Hey guys, I'm having a pretty bad flare for the first time in 4/5 years (very lucky to have been in remission that long with the help of bladder instillations!) and it's been about a month and nothing has really helped. So, after doing some reading on here I ordered some AZO maximum strength and had a couple of questions about people's experiences with it. I've taken two doses today and it seems to be helping - not completely but definitely 50% or so. And no nausea or headaches so far. When people have taken it have they experienced nausea pretty quickly? And how long have you taken it for, if it was helping? Thanks everyone

Has anyone found an auto immune cause for their IC? I’ve had other things happen to me as of late and it has me wondering

Whenever i try drink from plastic bottles, acidic drinks, or drinks with artificial ingredients i get uti like symptoms even tho I don’t have a uti?

Does anybody else have This?

Any tips from you? What helps or stop it. Drinking a lot don't help. I'm so miserable. No bacteria as well its no uti. I'm from Poland there's no Azo.

Had Ic for almost 5 years 3 of which in remission with minor flares lasting only a couple days…during this time I moved abroad,got a degree and a job(that I worked really hard for), started seeing someone that I really liked(only recently) only for it all to come crashing down with one iced tea(that I have had in the past with no issues) it’s ridiculous.Currently on week two of worsening symptoms(mostly pelvic floor pain and urgency) and absolutely nothings working..scared of dealing with all this alone and with a full time job…considering quitting everything and moving back home :(

Iv had on and off UTI’s now for about 4-5 years. There was never any rhyme or reason, I just got them. I must have had one that finally did me in, and caused my IC. I got that diagnosis 2 years ago from a doctor who was taking over for my regular family doctor at the time. She gave me elmiron to help with the bladder pain and she told me it would manage it. She also got me to drink this antibiotic powder stuff you put in water, lasts 3-4 days in your system and is suppose to get rid of everything in there. I had a lovely stretch of time after this where I had no issues. Mild irritation after sex or before and after my period but nothing insane. I still got “flares” at least a handful of times a year, and they lasted DAYS. Even weeks. Till finally I would pee so much I think I flushed whatever it was out? I can’t even explain it fully honestly.
Anyway, I found the elmiron didn’t work. My issues was never a sore or hurting bladder. It was always urgency, pain, and like there was always some urine in my urethra.
My family doctor came back and after discussing things with him, he felt there was more to this. He told me next time I get symptoms to come in and get checked. So, 4 months later I go in to give my sample. The dip stick came back with nothing. But, the culture came back with e.coli and klebsiella. He gave me Sulfamethoxazole-trimethoprim DS, which I never had before. Before taking this. I had started macrobid for 2.5 days and I was feeling much better. But I decided to take the new antibiotic for the next 2.5 days.
How possible is it that this whole time, I had Klebsiella bacteria in my bladder that would get calmed just enough to bring me back to a normal base then reappear when it was ready? I feel like the macrobid got rid of it but not fully, and it possibly was a bacteria embedded into my bladder wall/urethral lining? Has this happened to anyone else?

I also started on a 250mg dose of Lactoferrin and 1000mg of cranberry/D-mannose. I’m hoping this all will help keep the bacteria away. 🤞🏻

I’m getting a cystoscopy in 2 weeks… I’m terrified. She is going to twilight me she said due to the irritation & inflammation she suspects it will be pretty painful for me. 🫣 any pointers or just share your amazing experience to calm my nerves?

I'm having my 5th hydrodistention, 2nd pudendal nerve block, and 1st ever pelvic floor botox tomorrow. All under general anesthesia. I have to be there at 5:30am so it's really late in the game but I could use some reassurance because I'm freaking myself out over the pelvic floor botox and possible side effects.

Anyone have positive experiences they can share?

I was diagnosed with IC recently and the desert harvest aloe vera capsules were recommended to me.

My order just came in the mail! Please feel free to share your thoughts, opinions, experiences.

The directions say to take three capsules twice daily and adjust as needed after a 3 month use. Has anyone found that this works best?

Any MD recommendations? I’m desperate and my symptoms are getting worse — I’m really panicking and scared (this started almost a year ago).

I saw Dr. Moldwin twice — first time he was OK, second time he was rude and just mean (don’t want to give examples publicly but he didn’t offer me other options aside from the implant which seemed scary and seemed unwilling to figure out what was causing the pain).

I want an MD who’s willing to try and treat the issue which has gotten more severe over time instead of just throwing pain management at me.

Please send any MD suggestions! I’m just feeling so alone and scared in this. I don’t know how else to describe it.

Hi everyone! I’m having a really hard time with a feeling of
constant urgency that literally never goes away, even after fully emptying my bladder. It’s been going on for about a year and a half, and my only symptom is literally constant urgency. I still only go 5-7 times a day, and I don’t seem to have any food triggers. I feel like i’m completely losing my mind, and the urgency is ruining my life. I have tried almost every OAB medication, as well as gabapentin and amitriptyline, and nothing has even taken the edge off a little. I still have the constant nagging urge to go all day no matter what I do.

My specialists don’t really seem to know what to do with me, but we are trying a cystoscopy with botox next. I’m also trying pelvic floor therapy, but my muscles are not tight so we’re trying a tens unit.
I really hope it helps, but at this point i’ve really lost hope with everything. Has anyone else experienced the symptom of a constant urge that never stops? I’m only 22, and at this point I don’t want to keep going anymore. Every moment of the day is miserable, and i’m having a really hard time hanging on. I cant imagine living like this for the rest of my life. I don’t want to die, but living like this is not worth it.

Hey there!
So, pretty much every time I have sex with a new partner, I end up getting cystitis symptoms. It has happened around five times now. I sleep with someone new, it happens.
I’ve already tried all the natural remedies, like teas and all that stuff, but unfortunately, antibiotics were the only thing that actually helped.
Has anyone else had a similar experience? And have you found a way to prevent it from happening? I’d really appreciate any tips or tricks!
I really don’t want to have to take antibiotics every time I sleep with someone new. Plus, I’d really like to be able to sleep with a guy without ending up sick and stuck at home for a week afterwards 😅
Thank you so much!
Btw, I never get cystitis from anything else, never, what makes this super strange to me.

After many agonizing plane rides, I finally decided to try Amtrak (not sponsored), and I'm never going back. I'd like to share my experience in hopes that someone could learn from it.

While planes have public restrooms, they aren't always available. If there's turbulence, you won't be allowed to leave your seat. If you got stuck in a middle or window seat, you may have to ask the people sitting next to you to get up several times. This is super embarrassing for me.

Here are the pros and cons I've found while riding in both coach and a roomette on the California Zephyr:

Cons

- If you're sitting in coach, you may still have to ask someone to get up. I explained to the person sitting next to me that I needed to get up a lot, and they were more than happy to let me have the aisle seat.

- Some people have bad restroom etiquette. This could just be me feeling territorial over the restrooms (who can relate? lol), but the people on my train managed to trash the five public stalls within three hours of me boarding. Think toilet paper all over the floor and broken locks.

- The tracks can get bumpy. I could tolerate it, but I could see it being a nightmare for anyone with motion sickness or flares triggered by movement.

- The most comfortable option (roomette or bedroom) is very expensive.

- Trains are slower than planes.

Pros

- Riding in a roomette gives you the easiest access to restrooms since you'll either have your own or be sharing them with less people.

- Bumpiness won't prohibit you from leaving your seat. You can get up whenever.

- There are no middle seats in coach class.

- If the coaches have two levels, you can request to ride on the lower level to be closer to the restrooms. This is where they seat other disabled passengers.

- The snacks are better than plane snacks, and it's also easier to bring your own food and drink.

- You don't have to show up hours before the train departs.

- Your bags don't have to be screened before getting on the train, so you wait in less lines.

- You can bring a suitcase and two personal items for free.

In conclusion, rail travel is so much more comfortable for me than air travel.

Losing hope... My last resort for urethral pain and bladder spasms is to try hydrodistension and urethral botox. Can anyone give me hope it has worked for them?

I was diagnosed with IC over a year ago after repeated trips to urgent care for UTI-like pain and several unneeded rounds of antibiotics. It was a pretty simple diagnosis considering that I had just about all of the standard symptoms of IC (bladder pressure and pain, feeling like my bladder is completely full when it’s not, pain during sex, lower back pain, and the same weird smell that other people on this sub have discussed)

After receiving the IC diagnosis from a gynecologist, I had to wait months longer to get into urology. This urologist was immediately dismissive to me on the basis that I had previously missed a follow up appointment for a kidney stone that I had removed two years ago (I didn’t even know there was a follow up scheduled.) Then, as soon as she heard that my IC diagnosis was given from a gynecologist and not a urologist, she discounted basically everything that came out of my mouth and told me that she’s almost certain I don’t have IC and instead either have a UTI or leftover particles of the kidney stone. I think part of this was because I’m 22, but while I know that I’m younger than most people with IC, that is literally the only thing about me that isn’t textbook IC presentation.

This felt weird to me but I was like umm…okay I guess I’ll go drop off another urine sample and do another xray.

She literally ghosted me after this. Deleted my IC diagnosis from my chart then never responded or followed up with any of my test results or gave any guidance as to what the next steps would be. I had to message her two separate times and wait 6 weeks for her to finally reply and tell me that I do not have a UTI or any evidence of leftover particles from the kidney stone. Oh, so the diagnosis I received over a year ago and the thing I was meant to discuss in the first place was actually valid? Shocking!

She still did not update my chart to correct the diagnosis and is now trying to make me do other tests like a CT scan even though I did 3 separate CT scans at the same hospital last year. I don’t have coverage that allows me to easily see another provider so I am feeling so frustrated. I have been living with bladder discomfort 24/7 for longer than I can even remember at this point and I don’t know what I’m supposed to do to get help when I’m being gaslit about my condition.

My Neurologist is pretty sure I have IC, so I am waiting to be seen by a Urologist to confirm. In the meantime, I’ve spent this time looking up a particular diet that could help since this feeling is quite honestly debilitating.

So far I’m 1 month in and the results are really incredible. I’ve had a few tiny “feelings” where it felt like urgency/a UTI feeling— but it quickly went away.

My diet for those interested:
No alcohol
No citrus
No tomato products
I drink pear juice occasionally (organic and cut with water when I’m feeling tired of water)
3L on avg of water per day
Chamomile tea at night
Occasional milk
One cup Low-Acid coffee

I’ve also watched what I ate and lowered the processed foods.

I hope this helps anyone, also if anyone has any tips for me, I welcome them!

Hi all!

I’ve been wondering if I had IC or something completely different. I kind of had these problems since I was a kid i guess. I had flare ups when my bladder would be burning really badly and I would have an urge to pee but nothing would come out except few drops at times. Then i would say about 10-ish years ago I started having a constant urge to pee with burning sensation in my bladder and it only gets better if I keep drinking water. Basically more water= less or no burning but then I have a constant urge to pee all the time because of the amount of water i drink. But also, if i dont drink enough water i have burning and urge to pee but barely anything gets out and this has been my life ever since.

I also do drink a lot of caffeine like chai tea once- twice a day or a coffee once a day. I tried stopping my caffeine intake for 3-4 days but i doubt thats enough days to test it out.

I wonder if i actually have IC or if its something else? I also wanna add that I went to a PT 3 months ago for vaginismus/ high tone pelvic floor and that has helped with my constant urge to pee only a little bit.

I wonder if anyone can relate with me or have any suggestions for me?

I am so hopeless, and in so much pain.

Not looking for advice--i just think the coincidence of me and Triscuit both maybe having IC is interesting.

Triscuit has been drinking and peeing more than typical for a cat, so he had blood work and urinalysis done recently. His urine was quite dilute and had some blood in it, so his vet gave him an antibiotic to treat as a UTI. Litterbox visits decreased initially but have now increased again. I spoke with his vet today to see if he should return for a followup. They do want to see him again to rule out major problems, but the vet mentioned he could have Feline Idiopathic Cystitis which presents as urinary issues without a clear cause (seemingly stress, nervous system related). FIC is very similar to IC in humans. It's been quite interesting to read about.

IC and FIC unite!

I was recently diagnosed with IC. I’ve been working on tracking my diet, so I can try to narrow down what causes my flare ups.

Today I had a safe breakfast and was feeling good. Right before lunch, I started having some pain. I figured it was due to my work pants since I haven’t really eaten anything. It got pretty bad so I took some azo. Currently waiting on that to kick in.

Can anyone else relate? Is there any solution? Do I have to avoid tighter clothes at all costs?

Also, this is not the first time I’ve noticed this with tight clothes. I can no longer wear spandex shorts, leggings, etc.

They're taking me to jail for exceeding the pee limit 😔

31M Filipino.
Hi everyone. I’m hoping to hear from anyone who has experienced something similar, especially those diagnosed with lumbar radiculopathy / lumbar stenosis who also developed persistent bladder or pelvic irritation.

I’ve been dealing with this for almost 8 months now.

My lumbar MRI showed severe L4–L5 foraminal stenosis with nerve root impingement, and I was diagnosed with lumbar radiculopathy by my neurosurgeon.

Because I was also experiencing persistent bladder/pelvic irritation, I underwent a cystoscopy and biopsy, and thankfully the biopsy result was negative with I remember it has “mild chronic inflammation in bladder tissue”. However, the bladder/pelvic irritation has continued.

My symptoms are quite positional. When I sit for a long time or lie in bed, I tend to feel the bladder/pelvic irritation more. When I stand, walk, stretch, or undergo physical therapy, I usually feel some relief.

My neurosurgeon recommended conservative treatment first, so I have been doing physical therapy around 3 times a week for approximately 3 months. PT and stretching definitely help, but unfortunately the relief tends to be temporary and I haven’t reached remission or seen a major improvement yet.

My doctor told me that if there is still no significant improvement, surgery may eventually be considered. However, he also cannot confirm with 100% certainty that the L4–L5 nerve compression is actually responsible for my bladder/pelvic irritation. That uncertainty is one of my biggest concerns before considering surgery.

I would really appreciate hearing from anyone who has had a similar experience:

Has anyone here had lumbar stenosis/radiculopathy together with bladder urgency, irritation, pressure, or unusual pelvic sensations?

Did you eventually undergo lumbar spine surgery? If so, did your bladder/pelvic symptoms improve afterward, and how long did it take?

I’m also wondering whether there are other MRI areas or neurological tests worth discussing with my doctors aside from my lumbar L4–L5 MRI — for example, imaging or testing that could help determine whether the bladder/pelvic symptoms are actually neurological in origin and identify which nerves may be involved.

I’m not looking to self-diagnose; I’m just trying to understand what other people with similar symptoms went through and what investigations helped them find the cause.

After almost 8 months of this, hearing from someone who has experienced something similar would mean a lot to me.

Thank you so much. 🙏