I underwent pelvic floor physical therapy (PT) in 2021 primarily for interstitial cystitis. These were some of the PT stretches that were part of my regimen.

I highly recommend pelvic floor PT. I think of it like this: All my doctors see me as the body part they represent (GI doctor as my digestion system, gynecologist as my reproductive system, urologist as my bladder system, etc.). But my pelvic floor physical therapist sees all those parts put together, including the muscle, sinews, fascia, etc. that surround them. I felt understood by my physical therapist more than any other doctor.

I've been scanning some of my IC research and history. I hope to post more on this channel in case it's helpful to anyone. I also did pelvic floor PT in 2010, so I'll share those stretches soon.

Disclaimer: I'm not a healthcare professional. I'm not providing medical advice. I don't have proprietary rights to this content, so if it's copyrighted, I might need to take this down.

These scans aren't recent, so likely there's better research available. I collected these early on after my diagnosis (around 2008). I think the "theme" of some of my blue highlights was to show how legitimate and serious this pain is. Like, there's a stigma that a bladder is "weak" and having issues there makes you weak. I do not accept that interpretation.

• Image 1 - can't find source - helpful in showing the mucus lining of the bladder
• Images 2 and 3 - source - helpful in explaining types of pain
• Image 4 - possibly relates to this source - shows seriousness, lists hypothetical causes, mentions petechial bleeding
• Images 5 and 6 - source - describes urgency, discomfort. The "current drug" list is quite old/dated

I plan on sharing additional parts of my story and treatment little by little.

Long-time lurker here. I posted awhile back when my 17-year-old daughter was suspected to have IC, desperate for answer and suggestions. Many of you reminded me that IC is a diagnosis of elimination, which felt overwhelming. I read nearly every post in this group, took notes, and cried with and for many of you, thinking this might be something my daughter would have forever. 💗 The kindness and encouragement here shown to one another, from those going through years (sometimes decades) of pain, is absolutely incredible.

We had several appointments with her doctor, and I asked about embedded infections (as many here suggested). I was dismissed and told it “wasn’t a thing” and that mycoplasma was too rare to check. I pushed anyway, paid a hefty sum out of pocket, and was crushed when the test came back negative, and back to square one. The only advice we were given was to “wait a year for a urologist.”

Even though her doctor felt it was likely IC, I couldn’t accept that without further investigation, especially since no one seemed willing to look deeper. And more, because this group offered so many paths to explore.

Months later (which I humbly acknowledge is nothing compared to many) was the breakthrough... physiotherapy! We found a physio specializing in pelvic floor therapy. It turned out my daughter has a very tight pelvic floor on one side, which was mimicking bladder infections. Why, was this not suggested by her doctor? How many suffer misdiagnosed. Its simply Tragic.

Long story short: many doctors don’t always consider this, and it’s easy to feel dismissed. But there are other explanations, and there is hope. If you’re still searching for answers, don’t give up advocating! You know your body (or your child’s) better than anyone. 💗

I'm going to have to have a colonosopy soon and I'm worried about what to eat/drink during the prep. I know they have pills now, so I'm too worried about having to drink magnesium citrate. I'm more worried about not getting dehydrated or depleted from electrolytes. A lot of the things recommended like sugar free Gatorade and sugar free Jello have citric acid and other things that would flare me like crazy. Any tips for what to eat/drink would be appreciated. (I said sugar free above, because I also have diabetes)

Hey everyone!! 39 f here, history of kidney cancer but cancer free as of Dec 13 2024. Had a total right nephrectomy.

I kind of don't know where to start. I've struggled with UTI symptoms without having a UTI for years, but lately, over the last couple of months they've really gotten horrible. Pretty much constant. My oncologist has reassured me it's nothing to do with cancer, plus I have all kinds of scans every 3 months of my life lol So I'm trying to figure out what's going on and I have an appointment with a urologist in October

(I tested negative for a UTI and vaginal bacteria as well at my last doctor's appointment.)

My symptoms are primarily- Urethral burning Urgency And peeing myself if I try to jump on the trampoline lol

AZO helps heal almost all of the pain completely, but I'm afraid to keep taking that since I only have one kidney now.

My questions to all of you are, what can I do in the meantime for pain? What should I ask my urologist? Are there any medications that you guys have found to be helpful?

Does anyone else experience kind of twinging or tweaking pain in their pelvis/ovaries from their IC??? Some days are worse than others

Similar to the post with PT stretches from when I went in 2021, here are some stretches from when I went to pelvic floor PT in 2010. (I had different physical therapists in the same medical group, and they were both excellent. I feel understood by pelvic floor physical therapists. I highly recommend seeing one.)

I've been scanning some of my research and history with IC, and I plan on sharing more soon.

Disclaimer: I'm not a healthcare professional. I'm not providing medical advice.

Someone posted recently with a photo of there suppliments they believe in, I was hoping to find out more before I spend money on them.

The two are: Prelief and AZO Bladder Control.

I have been dealing with IC for about 5 years, I have had two cystoscopy with fulguration and triamcinolone injection that have resulted in an extreme relief, but eventually my hunners lesions retrun and flair ups can be quite painful. I dont have them a lot, but as time goes on it seems a bit more often.

I tried many suppliments over the years adn none really do anything that I can discern. What I am wondering is are these two supplimetns to be taken everyday in an effort to minimize pain during a flare up or are they taken when a flare up occurs or something else.

The only thing I use is baking soda when my urinary tract is at a complete stand still due to pain and that usually helps me at least relieve myself.

Thanks for any specifics along this line, I appreciate it.

So, I had to drink an energy drink today since I couldn't afford to sleep and needed to be awake for something so I took the leap of faith. I thought I was in the clear since I didn't feel anything for the first 2 hours and I was like oh is my OAB and suspected IC gone? Can I handle it now?

My body said hold my drink, let me burst that bubble real quick. 😭

Hey guys since suffering with IC symptoms I’ve had bubbles in my pee, they just rest on top and it’s not foamy. It’s literally like air bubbles?😂 but they don’t look like air bubbles if that even makes any sense. I’m just wondering if anyone else has this? Because the internets says it can be all kinds of things and I don’t have an infection so I was guessing if it’s just an IC thing. (Also my doctors response was quite literally just I don’t know so yay)

My main cause of pain from my IC occurs after I pee. I believe what is happening is a spasm of my pelvic muscles. I wanted to ask if anyone had advice on how to prevent these spasms or how to relieve the pain afterwards.

I’ve also noticed that once I end my stream I feel my pelvic floor pull upwards. So, I assume I am pushing down my pelvic floor while I pee. I’ve tried doing some breathing exercises before peeing to relax the muscles however, i can’t help but push down when i pee.

Any guidance is appreciated!

Hi All-
I have been reading through all the posts on here and there is a WEALTH of knowledge & information on how to help. I know we all have different triggers and different things that may or may not help but as I've been reading & any of you mentions a drug, or a supplement, I've been trying to make a note of it in my phone. Then I spend my evenings furiously googling and trying to learn about all the things that could possibly help since most doctors don't know how to help either.

I've made a spreadsheet and would LOVE for ALL of you to add to it as you find things that help. I've started to add to it but since I am on my second flare up and I got no help the last time I don't have a lot of experience and haven't taken any drugs for IC yet.

Let's arm ourselves with knowledge so when we go to a doctor we can mention all these things and get their thoughts or try on our own (with the supplements) to see what can help.

https://docs.google.com/spreadsheets/d/1sDWkDaJMyC5WQGh-5DDth34v2Fp6oHH8OWIH7XSlXws/edit?usp=sharing

I’ve been struggling with painful bladder syndrome since I was 16, and I finally got diagnosed in 2024 after years of suffering. I’ve tried so many treatments – bladder injections, bladder dilation – but nothing seems to work.

I’m exhausted. I feel like I can’t keep going on like this, and I don’t feel like anyone truly understands how relentless this pain is. Sometimes the pain lasts for weeks, then I’ll have a break, but the constant burning never really leaves me.

I’m desperate for some relief. If anyone has any recommendations or advice on how to cope with this pain, please share. I feel so alone in this.

I (24F) feel like I am losing my mind. I can not live with my IC diagnosis. I just don’t want to accept it because once I do I feel like I have no hope to feel okay again.

Everyday that I wake up is constant agony.

I can’t sleep at night, I can’t focus on anything during the day. I’m having daily crash outs & I genuinely feel like I have zero quality of life. I can barely get out of bed to make myself food and I can barely eat anyways. I am incredibly dehydrated because i’m so scared to drink anything and make this pain worse.

I suffer from PTSD and Bipolar and can’t do any of my normal routines that prevent me from having very bad depressive & anxiety filled episodes (go to the gym, hangout with friends, get outdoors, etc). I was given Oxybutynin to help get me out of bed, but this prevents me from any physical activity (prevents sweat causing heat stroke if you do physical activities that would normally induce sweat). Even being in the sun for more than a few minutes can cause a heat stroke.

I don’t know what to do. I can’t live like this. No one can tell me what’s going on.

I have been suffering for almost 8 months now and have gained weight, started self harming, losing my relationships, losing work, and I just don’t know what to do.

I genuinely don’t want to live.

I’ve seen so many doctors and up until this past week all they do is test for bacterial infections over and over and over (even when i tell them hey I had this done literally two weeks ago at another doctors I don’t want to do this again). Finally I got to a urologist last week. She prescribed me the oxybutynin and said I had overactive bladder disease (OBD) and I needed an invasive surgery. Went back yesterday to tell them about the side effects I was having with the temporary medicine (heat stroke) and a different urologist this time told me I definitely don’t have OBD and I should have never been given that medicine.

She was honest and told me she was baffled by my symptoms: feels like a MONSTER UTI….incredibly overwhelming and CONSTANT burning feeling. Like i’m sitting in a fucking open flame. constant urge to pee but only a few drops if I strain and then it’s even more horrible burning….also a stabbing/ pinching sensation directly in my urethra that will happen when I lay down and try to relax, ETC. All of this for MONTHS with zero relief from dietary changes, antihistamines, all sorts of supplements… NOTHING. the only relief I got was from essentially overdosing on Azo and chugging water to the point where my kidneys were literally on the verge of collapse…yay azo).

Anyways….she said no to OBD and said it is likely IC (even though this diagnosis is supposed to be from elimination right??? I have had zero tests done. ZERO. not even a CT scan.) But she prescribed me some strong pharmacy allergy medicine and scheduled a follow up in a MONTH.

I truly don’t know if I can make it a month. I am also a suicidal person (yay bipolar) and this torture i’m living in is making those thoughts feel more actionable…. if you know what I mean.

I guess I don’t even know why i’m making this post. I’m typing while literally cringing and crying from the pain going on right now while i’m trying to sleep. I feel like no one will ever be able to help me and I can not face the reality that THIS is going to be what the rest of my life looks like.

I guess I am just looking for help.

How do you manage your pain? How did you deal with your diagnosis when you first found out? How do you not want to die? What should I do next to get medical help?

I live in Maine…we have like one urologist so I have no idea what to do. Please help 💔

(edit): I also often have burning after/ uncomfortableness during/ sexual penetration. I am currently seeing a gynecologist about this. I can’t even get through a transvaginal exam or ultrasound. touching my cervix induces incredible pain, like someone is literally using a knife down there. I also have IBS and chronic constipation. Just putting this out there incase anyone has similar issues and has found a correlation between these things and IC.

(EDIT: to be clear i do NOT have OAB . My latest visit suggested I have IC and she said she was going to treat me as such. Sorry if I confused anyone! This post is about living with IC)

Hello I’m looking for help here because I am so confused about what is going on with me. For the last year I have gotten a “uti” about every 2-3 months. I had my urine tested twice and there was no bacteria but there was blood and white blood cells. The feeling starts as very intense burning after peeing for maybe an hour or two. It’s almost unbearable. It’s more just very uncomfortable than painful. I also feel like I have to pee more often so this makes the pain even worse. This lasts for about a day and then following this for about the next week my bladder feels extremely swollen with a lot of pressure. The burning goes away but I still feel like I have to pee more than usual.

Does this sound like IC? I was also looking into pelvic floor issues, ureaplasma, and embedded uti

I noticed that my pelvic muscles during this time are very tense so I’ve been trying to do stretches and relax my stomach more. This seems to help. I also so drink absurd amounts of caffeine. I need to stop and see if it helps but I did notice that sometimes this reaction is triggered by drinking alcohol. Additionally I have no idea if this is related but I have also been getting fevers a couple times a year with no symptoms of normal sickness. Just fever symptoms like cold chills and light headedness.

I’ve been struggling with painful bladder syndrome since I was 16, and I finally got diagnosed in 2024 after years of suffering. I’ve tried so many treatments – bladder injections, bladder dilation – but nothing seems to work.

I’m exhausted. I feel like I can’t keep going on like this, and I don’t feel like anyone truly understands how relentless this pain is. Sometimes the pain lasts for weeks, then I’ll have a break, but the constant burning never really leaves me.

I’m desperate for some relief. If anyone has any recommendations or advice on how to cope with this pain, please share. I feel so alone in this.

24// Female

The past couple years I have gotten frequent UTIs. Never thought much of it. I’ve been on Birth control since I was 17 but never had bladder issues besides the UTIs. Well recently I got off my birth control and suddenly I’m having all the IC symptoms. I did have a UTI 2 months ago that went away with antibiotics but the bladder pressure unfortunately returned and keeps coming back since I got off birth control. I started taking it again but obviously my hormones are still out of whack

I’m just wondering do any of you have IC and only get flare ups when your hormones are messed with? Because I’ve never had issues until now. I’m just hoping it chills out once my hormones are back to normal 😥 I am getting a cystoscopy done next month. Went to a urologist and they basically told me to come back when my symptoms worsen. Gotta love US healthcare!

I’m thinking about starting Amitriptyline for IC because I’ve heard it’s very effective,however I’m a little bit nervous about it because it can lower seizure threshold (i had one really big seizure 2 years ago from wellbutrin). Obviously I’m checking in with my neurologist to ask his opinion, but I wanted to see if there’s anybody here who has a seizure history that takes Amitriptyline.

Hey, I'm female and I've had severe bladder problems for 10 years. As a toddler, I often had pain when urinating, which went away again and again. When I then turned 11 years old, I suddenly got daily hours of pain with burning etc. As a result, I usually had to sit on the toilet for several hours after school. I went to the pediatrician, urologist and thousands of gynecologists. Cystoscopys (nothing unusual was found) were done, my urethra is not narrowed, I have no viruses, bacteria, ultrasounds were normal and blood has already been taken a thousand times without result and urine samples have been taken. Over the years I have developed a technique myself to relief symptoms and I constantly have to drink water (5-6L a day), which also relieves severe pain. In addition, it helps me if I stop again and again when urinating, wait a little and then continue. Only recently I was at a new cystoscopy, in which bladder stones (I am young and drink a lot) were actually found, but these were not further examined by the doctor, but were disposed of. I have an actual bacterial bladder infection every 6 months and no antibiotic helps. I have tried everything in the world and no doctor can help me. I've even been to alternative practitioners. I was also sent away by a specialist..... Has anyone ever experienced something like this? I urgently need help.

Hello fellow sufferers

I just recently got diagnosed and have start bladder instillations. Things seems to be improving but I'm also heavily avoiding any triggers or possible triggers since my diagnosis. My last flare was from a pineapple popsicle and I was curled up in my bed wishing I could claw my bladder out.

But I miss my daily lattes and caffiene so much. I'm trying sips of caffinated teas here and there hoping for a tiny boost of energy with little side effects. I've actually been avoiding coffee for months now. I believe caffiene is a trigger not just acid.

Just wanted to vent and see if anyone is in the same boat or is maybe brave and decides to suffer for some espresso every once in a while. 🥲

I don’t know what is going on with me. Just had a kidney stone blasted in the kidney but urologist found “mild slightly reddened” chronic inflammation in the trigone area of the bladder upon Cystoscopy but said it’s due to my active ulcerative colitis (I am flaring and have been for 7 months, the pain i am having came two weeks after flaring)

So the pain I am having jumps from the left side of my clitoris, the middle top of my clitoris, the bottom of my clitoris, and then the very bottom of my vulva, close to the taint lol.

It makes me feel like I need to pee. It’s a throbbing, stinging sensation. It feels like I felt when I passed kidney stones over the decades but I don’t think it’s actually kidney stones this time.

So my question to you guys is: is the pain actually coming from your urethra? Because I had an idea to actually touch the part of the pain while I was peeing and that’s not where the pee was coming out

So it wasn’t really urethra pain.

So what does this mean?

This is driving me crazy. I will never know what is causing me pain and I fear I will never get better. And it’s not affected by food at all

Good morning. I’m Victoria. I got diagnosed with IC maybe 20 years ago. I had a procedure done but I can’t remember what it was. It didn’t help anyway. At that point the urologist just said she couldn’t help me. Well, after maybe 2 years of no flares, it’s back this morning. I don’t even mind the pain so much. It’s the smell. It’s horrible! It fills the bathroom. Is there anything I can take for it? Thanks in advance!

I had an in-office cystoscopy with hydrodistention this afternoon. Dr sent me home with some samples of Uro-MP (and a prescription of it) to handle pain/spasms over the next few days. My main issue right now is my urethra is BURNING. Any suggestions for relief??

Hello, I was finally diagnosed with interstitial cystitis in 2019 after three years of suffering. I took amitriptyline 25mg in the evening and something else for an overactive bladder, but I had to stop taking it when I became pregnant in 2021.

Until now, I was doing well enough to lead a normal life, but a few days ago the symptoms suddenly returned, and I'm desperate! Constant urge to urinate, a burning pain in the bladder, and this strange feeling that the bladder is inflamed. There are no bacteria in the urine.

I generally follow a low-histamine diet, and if I've been careless, I've had symptoms just one day later, and then the problem is over.

I don't know what to do now because I miss my life when I was fine and almost thought I was cured. Would it make sense to increase the amitriptyline to 50mg, or are there other medications that might help you?

Thank you!