r/Interstitialcystitis

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.

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

Thanks to anyone who reads through this, Hey so I‘m asking this because I‘m really desperate for help. For three years, I‘ve been having completely unexplained and weird symptoms. It all started on summer holiday, when I suddenly got sick (stomach pain and diarrhea). It went away, and then suddenly I had a constant feeling as if I had to go to the toilet even though I hadn‘t. After a accident and falling down while skating, I got extreme stomach cramps on top of that. This symptoms went away After a few months and turned into bladder symptoms. I had extreme pain and felt as if my bladder was exploding. I had sudden extreme flare ups, which randomly got better on their own, I dont know why. Pain meds never worked, not even opioids. Now, I‘ve been having the same symptoms since 2 years: I have to go peeing a lot, have cramps in my urethra (sometimes more sometimes less) and have a weird sensation all over my body as if my insides are being kneaded and twisted and the sensation feels different every 2 days or so, its horrible. I‘ve tried Everything, meds, psychotherapy, pain clinic…nobody can figure out the reason for it. So, I‘m asking, is PRT a chance for me or rather unnecessary?

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

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

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.

Update: I was home by noon and I'm not feeling too bad. Had pain, nausea, and anxiety on waking but PACU took care of that. There was a brief horrifying period where I could only pass 20mls of urine and my bladder scan showed 400+, so they had me wait a while to give it another try before being sent home with a catheter overnight. But I managed to pass 600mls and they let me go without it! Bladder is sore and peeing feels like razor blades but that's nothing new after hydrodistention. Nerve block I think is keeping some of the immediate pain down too. Nothing noticeable from the botox yet obviously. But not a bad experience today!

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?

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.

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.

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 :(

I am so hopeless, and in so much pain.

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 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.

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.

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.

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).

Hello so I am M19, so basically 2 months ago I was well jking off with a full bladder and then came to bathroom and then literally literally nearly nothing came out what followed after that was intense urge to pee but it came in weak stream, I had done many tests like urine dr, uric acid, and ultra sound, all of them was fine except in the ultra sound it showed that I had post void like 40% of the urine still remains this went on for 2 week symptoms starts improving I saw 2 doctors but like even when symptoms were improving I kept stressing out afterwards in the 2nd week I finally went to a urologist he gave me solifen medicine which actually in 1 week finally fixed me and I was fine completely fine its was such a relief, I started going to the gym and gain weight (good thing for me as I weight 44kg) but then one day I was sitting on the toilet amd freaking for some reason remember the painful memories of the bladder problems and guess what it actually came back, I believe stress wasn't the only factor here as I drank like tang orange flavour juices alot in gym like 2.5 cups and would hold my urine alot so thats likely affected it, anyways this problem came back and after 5th day I went to a homeopathic doctor who told me this is bladder inflammation, he thinks it's temporary it's day 12 and my symptoms have improved like during morning I am actually able to empty myself but I always get the urge in the evening and the night also I have regular stress and anxiety attacks at 5pm specially as one though comes to me "What if this is chronic". Can anyone here like comfort me please what if this problem comes back again once its finished I can't deal with this the third time