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)

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.

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?

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.

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.

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)

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. 😭

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!

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!

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’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.