Looking for other medication options to help with the feeling of constantly needing to go and the bladder pressure feeling outside of amitriptyline (or noritriptyline ) and elmiron . Thanks so much for your help !!’n
Okay hear me out. Xanax has changed my life. I don't know if it's because it relaxes my muscles or what but it has taken away by absolutely debilitating can't leave the house pain. I have a job now and I'm able to go five hours without peeing. Before Xanax, I was peeing every twenty minutes on the dot, no exaggeration. I'm truly living a life now instead of being an invalid. I only need to take one mg every few days. It's given me my life back. Has anyone else had an experience like this?
For some reason my period has been more painful than usual, and it’s starting to cause a flare up and I’m sad. I’ve been flare free for a while and I feel like I’m going backwards, but am unsure if this is period related. Anyone have a similar experience?
Anyone recommend any.
I am on a waiting list to see a therapist but it could be ages. I definitely think I have hypertonic as it fits my symptoms.
I finally got an appointment with a pelvic floor physical therapist for next week, it’s my first time ever going to one so I would appreciate any advice on what to expect and what I should remember to say etc :)
I was diagnosed with IS in 2021, and in 2025 I had surgery to diagnose/treat endo. A few months after surgery my IS symptoms went WAAAYYYYYYY down, and I have been in SO much less pain. It’s not completely gone, but I 100% feel the difference. I’m wondering about how others feel.
Went to sleep at 10pm ish. Up at 130am in excruciating burning pain. Now it’s almost 3am and I’m just laying here on Reddit hurting. Took some meds I have for bladder and pelvic pain.
Could it have been the yogurt, grapes, strawberries, bananas that I ate at 9pm? I will never know!
I am so sick and tired of never sleeping.
Crazy that this is just how it is for me now almost every night.
First visit to urogynecologist. Been waiting for almost 6 months to get in. I know to tell them my symptoms, issues, medications, daily habits to cope, frustrations, but is there anything you wish you knew before your visit or anything to ask about?
I was diagnosed with endo in Feb. Of this year. With the surgery. Not even a month later the ghost uti started and sometime after my pee started smelling horrible. It does not matter how much water I drink either. No uti. Have been told I morw then likely have ic also. But I haven't seen anywhere that this is a symptom. Its a nasty nursing home type smell. Has anyone else had this. Its so embarrassing. Does anything help.
Trying to figure out if my symptoms are IC or not. I often feel like my entire vagina is raw or burning, like I have a yeast infection or a rash of some sort, but then I take Uristat and the entire area feels better.
Does your IC cause your entire vagina to have a raw feeling EXTERNALLY? I don’t even wear underwear most days…
I don’t know what to do, or even how to explain my situation. If anyone has ANY information on this would be greatly appreciated, because there isn’t much on the internet I can find.
So basically about a year ago i had a UTI and my only symptom was this weird arousal but uncomfortable feeling down there. The sort of feeling that makes u want to crawl up in a ball in the darkness alone, it’s a horrible sensation that can’t be explained. Anyways I took antibiotics and the said UTI apparently went away but this uncomfortable feeling stayed there it would show up some days and then disappear. About two months later it never came back I suspected PGAD, IC of hypertonic pelvic floor but never knew I started taking magnesium and it just never came back.
Fast forward to about a week ago I was having UTI symptoms (burning pee, just feeling weird etc) and the WEIRD arousal feeling came back. I started taking antibiotics and it went away. Until today I’m on my final day of antibiotics and it’s back and BAD. I just want to understand why this is happening, and what I should do.
Side note also because of the antibiotics I’m having bad symptoms show up like watery diarrhoea 15 times a day, lower back pain, cold and hot flushes etc. Been going THROUGH it. Anyways, I don’t know if I show go to the doctors or if they will even understand what I’m talking about. Should I get tested for UTI, IC, ureaplasma or mycoplasma? Or just go to a pelvic floor specialist? I don’t know, it’s just the worst feeling ever.
I got my first uti January of this year and I was Given antibiotics, but then my symptoms got worse o went to the er and they told me to stop using them cuz I don’t have one. 7 days later I got a call from my doc saying that my culture urine test came back positive but I didn’t have anymore symptoms. Fast forward March 20 that’s when I got the symptoms back and stronger went to the er I was told I have a uti got antibiotics again, but it didn’t help and they gave me antibiotics for 7 days I felt better for about 10 days. And ever since then I been having crazy burning and urgency and lower belly pain. I saw urologist and was told that I could start bladder installations. Also, they gave me your uribel and Azo and hydroxzine (which is nightly). My symptoms get worse after my periods. I think I might have embedded uti because I always get UTI’s like after my periods. I might talk to my doctor maybe I can start physical therapy but I’m so tired of the burn and especially the burning. I stopped eating and drinking food that can irritate my bladder but nothing is helping me. I also noticed that when I take d-mannose the burning becomes stronger, that what makes me thinking I have bacteria stuck into my bladder wall.
If anyone has any advice please share them with me something that can help with the burning after urination.
PLZ HELP IM STILL A VERY YOUNG WOMAN WHO IS STRUGGLING WITH THIS.
Hi everyone. I’m looking to hear from people with a similar experience.
I’ve been dealing with bladder and pelvic pain for about a year. A bladder biopsy showed chronic active inflammation, and I’ve been receiving bladder instillations (I’m down to my last few treatments).
Compared to the beginning, my burning has improved a lot. However, my main symptoms are still:
Pelvic pain
Constant bladder pressure/fullness
Feeling like my bladder is still full even after I urinate
Occasional sharp, needle-like pains that last only a second or two
I recently started pelvic floor physical therapy. During the evaluation, my therapist found significant pelvic floor muscle tightness, especially on the right side, and pressing on the muscles reproduced my usual pain.
Has anyone else had both chronic active bladder inflammation on biopsy and pelvic floor dysfunction/tight pelvic floor? Did pelvic floor physical therapy help with the bladder pressure and pelvic pain? I’d really appreciate hearing about your experience.
My Urogyn brought it up last appt I’m considering it
Does anyone here have bladder and urethral pain, that did not get an instillation, but was helped by getting pelvic floor botox injections?
I see a lot of quercentin supplements for sale that are just plain old pure quercetin. Quercetin has a bioavailability (BA) of less than 1%..
Source: Dabeek WM, Marra MV (2019). "Dietary Quercetin and Kaempferol: Bioavailability and Potential Cardiovascular-Related Bioactivity in Humans". Nutrients. 11 (10): 2288. doi:10.3390/nu11102288
This means basically none of it is getting into tissue and providing its anti-flammatory action that we take it for. The compound is practically insolubile in water. Yes it has anti-inflammatory properties in vitro in studies, but if it doesn't get into the tissue it needs to be (bladder in our case), it's pointless since its metabolized and never reaches the tissue it needs to be in.
There are some products hat are Quercetin (henceforth referred to as "Q") encapsulated in liposomes. Lipsomes are are small vessicles which can be packaged with drugs or Q. Lipoomes have cell and muscosal layer permeability, so they can make it possible for this compoundto actually get to the bladder tissue then be released where it needs to be.
Phytosomal achieves a similar benefit, but it's just that quercetin is functionalized with phytosomal functional groups that help it permeate cells and get where it needs to be to be effective.
I tried quercetin long ago and go not results. After researching and finding out about its horrible BA I decided to give it another try. I'm not sure if its the new lipsomal Q or not, but I have been feeling better than I have for a very long time. Who knows, so many variables at play in this mysterious disease, but I just wanted to share this piece of information that is always seemingly overlooked and not mentioned when discussing this supplement.
I had a UTI on 6/10 - I had trace blood and leukocytes in urine but the urine culture was negative for bacteria. But the symptoms warranted anti-biotics. I tried Macrobid and couldn't tolerate it, Tried amoxicillin with clavulanic acid - couldn't tolerate it. Finally landed on Kephlex and took 500mg 2x a day for 7 days. And felt better. But 2 days later I felt bladder cramping and had to pee a lot, but I was retaining water so I thought maybe that was it.
Off and on all week I have had weird bladder cramping and low back pain. But no burning, urgency, or stinging with urinating.
To complicate matters, I have a rare immflammory autoimmune condition called Vulvar Lichen Planus and I am having an a horrible flare but I never have urinary symptoms with it.
My Dr. said this could be IC - but I'm actually concerned that I just have a UTI that is not responding to anibiotics.
Has anyone here just had lower abdominal cramps that comes and goes (right above the pubic bone) lower back pain and shivers down their legs with IC? I have never had any other symptoms of any kind prior to 6/10. Does IC just come on one day? Or is it slow attrition?
Thanks for reading.
I’ve been referred to a pain clinic. Has anyone found a pain killer that actually reaches the bladder? Morphine pills aren’t even working. Percocet originally worked but I went from breaking 5 mg in half to eventually 10 mg 4 times a day so essentially it lost efficacy and no longer touches the pain (all prescribed and monitored by doctor). I just want the pain to stop. I’ve had this since 2019. Started as a uti where the symptoms never went away and has progressively gotten worse and worse. Ive tried nycentine and thought I was going to die from the pain (it’s supposed to be a pain killer but wow the pain it caused). So far: percocet(worked at first-nycentine, and morphine are all fails). It essentially feels like there is no bladder/urethra lining left so it’s a 50/50 shot if the med will take me to hell or not. I’m only 39 and used to be a software developer and it’s sad but the pain.. I can’t do the pain anymore. It’s hard to get the pain killer to reach the bladder pain.
My urogyno doctor retired this week so it’s been a hard time. Pain is in bladder, urethra, vagina. I’ve tried it all and I live my life in bed. Like a hot poker is around my bladder and urethra or razor blades are slicing through me every second of every day. There isn’t a treatment I haven’t tried but if anyone has a pain medicine that can reach the bladder or the worlds best doctor I’ll beg for that info. I’m on pro level so please don’t suggest things like nerve blocks, amitriptyline, hydroxyzine, naturapaths, micro genex, etc etc.. I’ve tried every antibiotic even tho I always show up without an infection (except micro genex I’ll get medium bacterial loads but doctors hate those test and the millions of antibiotics I’ve tried don’t do shit). I just need the pain to stop at this point, it’s gotten so severe. No luck with uromune vaccine from England either. I could go on for hours of things ive tried. It’s not uroplasma so please only expert opinions if anyone has gotten to this level. I’ve even done a clinical trial where a Morpheus machine was built to go through the vaginal canal into the bladder to stimulate collagen (made it worse), Mona lisa (made it worse)… I can’t go on and on on what I’ve gone through to try and get better and the amount of doctors I’ve seen. the last 2 years have been hell I just need the pain to stop. I eat 3 foods and only drink Evian, no sex, no arousal, still severe severe pain. Valium, xanex.. I can’t get to the pain. Yes I’ve done cystoscopies.. I’ve done it all please I need a break from the pain. I’ll do anything and spend any amount of money at this point. I had to quit my job but I have savings.
Edit- thank u to everyone taking the time to try and help me. It means the world and to have empathy from people who actually get it is wrapping my heart in a much needed hug. I don’t care how cheesy that sounds
Hi everyone! I’ve been a long-time lurker of this sub since beginning my own CUTI journey back in 2023, with the worst of it taking place between June of 2025 to present. I just wanted to say to the women on here—PLEASE consider your IUD, if you have one, as a potential culprit.
I read probably every single post about CUTI/IC/horrific cycle of symptoms with no positive cultures, and was severely depressed and even having suicidal thoughts (extremely unlike me) from being in 24/7 pain (urgency, burning urethral sensation, pelvic pain) and had seen multiple urologists and tried out pelvic floor PT before finally deciding to take the leap and remove my IUD this week.
It was night and day! My IUD was a bit stubborn to remove and I even felt multiple pops inside my uterus before my OB was able to pull it out completely, and he mentioned it was possible it could have been slightly embedded in my cervix or surrounding tissues. My UTI-like symptoms lingered for a day or two, but by day 4 post-removal, I feel like I have my life and personality back. It’s almost hard to believe a week ago I was crying every day to my husband about how much pain I was in. Every doctor wants to talk about how there’s no evidence that IUDs can cause urinary symptoms, but this has taught me that WE know our bodies best, and if something doesn’t feel right, we should advocate for ourselves and our experience.
I’ll provide updates in the coming weeks/months as to whether I have truly been cured, but I want others to know this in case they might be experiencing the same frustrating cycle. There is a light at the end of the tunnel!