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Living with Interstitial Cystitis (IC)

Started by Steven Sanchez10 · · 👁 8 views · 71 replies

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Participants Steven Sanchez10Kyle Lee7Nancy Newman6Michael Davis11Scott Hall3Robert Collins2Kyle Taylorcrimsongull20Rebecca WardNicole Ward6irontrucker18wearyheron15Tyler James5Jack Anderson2brightsurfer6Ryan Long98Nicholas Myerscasualbadger22frozensailor10granitecyclist6redotter95Brandon Davis11frozenjackal12Amy Moore6 …
brightsurfer6 brightsurfer6 Newcomer
8 messages
joined Dec 2011
#41 ·
That examination really did manage to uncover all the organs causing her trouble, even without her having to specify exactly where the pain was located. And honestly, ever since she started using those drops, she's actually been able to urinate properly.
Ryan Long98 Ryan Long98 Newcomer
2 messages
joined Oct 2014
#42 ·
brightsurfer6 said:She spent some time traveling through Indianapolis and Naperville recently. I’m curious, what kind of diagnostic testing did you all undergo once IC was suspected? In her case, there are zero bacteria in the urine, and the cystoscopy came back looking perfectly normal. She deals with this constant pain, though the intensity fluctuates quite a bit. Recently, she had a really rough flare-up after eating a little too much sour cream. It’s also worth noting that every single time she ended up in the ER, her blood sugar was spiked, sitting right around 12. She stays active moving around the house and the garden, but if she tries to lift anything heavy, the pain intensifies significantly, so she has to be incredibly careful—especially since she’s 62.
Sometimes she feels a burning sensation when she urinates, and sometimes she doesn't; it happens at both the start and the end of the process. She is never truly free from discomfort. Once she's finished urinating, she does feel some relief.
Before she started using those homeopathic drops, she wasn't even able to pass a full stream; it would just be a few drops at a time. Now, she’s able to urinate normally. She finds things much easier when she keeps her fluid intake high (she drinks about a liter of water every day with some boiled oats mixed in).

Suspicion of IC usually starts cropping up when you're dealing with symptoms that feel just like a bladder infection—except, of course, there’s absolutely no sign of an actual infection. It's quite a frustrating way to find out! Generally, doctors won't even start looking into it until they've ruled out any gynecological causes—you know, things like physical pressure being put on the bladder—and completed a thorough urogenital workup to check for infections. Only after those boxes are checked does the conversation move toward a cystoscopy, which is really the gold standard since it allows them to see immediately whether we're actually dealing with IC or something else entirely.

She’s dealing with constant pain—though some days it hits her harder than others.

I haven't quite wrapped my head around exactly what kind of pain she's feeling—or even how it's actually manifesting—just yet.
You might want to ask them for a bit more detail—"pain" is such a broad term, isn't it? It could be anything from sharp and stabbing to intense and throbbing, or maybe just a dull, heavy ache or a burning sensation...
If I'm following you correctly—is she feeling that burning sensation specifically in the bladder area? Like she can constantly feel the actual shape and contours of her bladder? And does that burning sensation tend to flare up or subside depending on whether her bladder is full or after she's emptied it? Also, is she experiencing any burning in the urethra itself?
Could you please go into a bit more detail regarding the symptoms? I’d love to hear more about how those specific questions from my previous post apply to what you're experiencing.

She recently felt quite under the weather after eating a little too much sour cream—just a bit more than usual, but it definitely took its toll. Every time she ended up in the ER, her blood sugar was running high, hovering right around 12. She stays active moving around the house and working in the garden, though she has to be careful; lifting anything too heavy triggers more intense pain, so she’s being very mindful of that. She's 62, so moderation is key!

I have to admit—I really don't know the first thing about diabetes or how much it might actually be impacting her condition.

I wonder if the moderators—who I assume are doctors—might be able to weigh in on this one. 🙂
Sometimes there’s a stinging sensation when I go, and other times there isn't—it can happen right at the start or linger until the very end. It never feels like I've truly escaped the discomfort entirely. That said, once I'm finished, there is a definite sense of relief.

Does anyone else ever get that sensation where it feels like your bladder is completely empty?

Before she actually started using those homeopathic drops—well, she couldn't even manage to go to the bathroom properly; it was just a few drops at a time.

If I’m reading this correctly—and please, correct me if I'm wrong—she was basically having to force it out? Like, she had to strain her pelvic muscles and use all her abdominal pressure just to go? That would imply her stream was pretty much broken or intermittent, wouldn't it?

I didn't quite follow the logic regarding the "just a few drops" part. What happens if her bladder was actually holding something like 200–300 ml of urine? — you did mention earlier that she seems to handle higher hydration levels much better. If she were truly only passing a few drops at a time, the process would take an eternity—and if she were completely unable to void, we’d likely be looking at teaching her how to self-catheterize. Out of curiosity, what does her uroflow look like?
What were the results of the urodynamics test?

How often is she actually getting up to pee during the day?
I honestly couldn't wrap my head around how her bladder even functions—it just seems completely defies logic!🤔

It’s no secret how much the psychological side of things can mess with your bladder function—it really is a huge factor.

When she was struggling to go, her lab results didn't show much. They could basically only confirm she was having issues, but they couldn't pin down an actual cause.

It’s obvious this has been tough on her—she’s such a fighter, but even the strongest people get worn down. Honestly, over those six years, I’m sure she’s questioned herself more than a few times—wondering if she was just imagining the whole thing—especially since no one could give her a straight diagnosis.
What’s your take on how she’s actually managing all this?
How much is it actually holding her back from her day-to-day life?

She’s urinating normally now. It helps her quite a bit to stay super hydrated (she boils some oats in a liter of water every single day).

By "normally," do you mean she’s finally able to just relax those muscles and get a steady stream again, similar to how things were before the symptoms started?

That exam actually highlighted all the organs causing her trouble, even without her pointing out exactly where it hurts. And ever since she started using those drops, she's been able to go.

You could probably get a more detailed explanation from a charismatic local preacher for free!

The technician told her the lining was damaged, yet during the cystoscopy, the urologist looked right at it and saw everything was perfectly fine? Hmm...

It feels pretty pointless and honestly unfair to give her false hope that isn't based on reality. We all know what happens after that initial burst of euphoria wears off. It might be better to steer her away from that hollow optimism—and her wallet will definitely thank us for it.
crimsongull20 crimsongull20 Active Member
84 messages
joined May 2004
#43 ·
Does sitting and moving make her pain worse, or is it just lifting heavy stuff? Where exactly does it hurt?
brightsurfer6 brightsurfer6 Newcomer
8 messages
joined Dec 2011
#44 ·
Everything seems to be in order according to the tests, and they didn't find a single thing during the cystoscopy. Her homeopath actually showed her a cross-section of the bladder lining, which apparently looks like it's full of these little indentations... I guess it makes you wonder if it’s somehow nerve-related?? Especially when nothing shows up on the actual cystoscopy.
It isn't cancer, it isn't an infection, and it isn't endometriosis either. It’s just this constant, localized pain in her bladder—like it's deep inside the actual tissue of the bladder itself.
During the exam, they concluded that she’s having some trouble urinating; she does manage to empty her bladder completely, but she’s stuck with this persistent sensation that it’s still half-full.
Before she started using those drops, she was barely passing small amounts at a time, but now she's managing much larger volumes.
When she ended up in the ER due to the pain—which happened twice—her blood sugar was sitting around 11 or 12, though her urine and blood work looked fine.
She’s been sticking to a really strict diet for a few days now, and she says the pain has dropped down to about a two on a scale of 1 to 10. Her blood sugar seems to be back within a normal range, too.
Nicholas Myers Nicholas Myers Active Member
163 messages
joined Jan 2012
#45 ·
brightsurfer6 said:That examination really did manage to uncover all the organs causing her trouble, even without her having to specify exactly where the pain was located. And honestly, ever since she started using those drops, she's actually been able to urinate properly.

brightsurfer6 said:Everything seems to be in order according to the tests, and they didn't find a single thing during the cystoscopy. Her homeopath actually showed her a cross-section of the bladder lining, which apparently looks like it's full of these little indentations... I guess it makes you wonder if it’s somehow nerve-related?? Especially when nothing shows up on the actual cystoscopy.
It isn't cancer, it isn't an infection, and it isn't endometriosis either. It’s just this constant, localized pain in her bladder—like it's deep inside the actual tissue of the bladder itself.
During the exam, they concluded that she’s having some trouble urinating; she does manage to empty her bladder completely, but she’s stuck with this persistent sensation that it’s still half-full.
Before she started using those drops, she was barely passing small amounts at a time, but now she's managing much larger volumes.
When she ended up in the ER due to the pain—which happened twice—her blood sugar was sitting around 11 or 12, though her urine and blood work looked fine.
She’s been sticking to a really strict diet for a few days now, and she says the pain has dropped down to about a two on a scale of 1 to 10. Her blood sugar seems to be back within a normal range, too.

I'm not sure if everyone has actually gone through the Health PDF guidelines, but just a reminder: discussing alternative treatment methods—which includes homeopathy—is strictly prohibited here.

Please, I ask you to read this. Rules. Before jumping into the discussions.

Since modern medicine still hasn't provided a truly satisfying answer for interstitial cystitis, I’m willing to be a bit more flexible. However, please refrain from bringing up homeopathy in this space anymore.

I appreciate the understanding.
casualbadger22 casualbadger22 Member
40 messages
joined Feb 2014
#46 ·
Dealing with this mess is rough, and honestly, getting any real help or straight answers is a struggle here, just like pretty much everywhere else.
From what I can gather, most people talk about some kind of mucosal erosion that leaves everything feeling way too sensitive. Triggers can be anything from infections and autoimmune issues to allergies... plus hormones play a huge role, which is why so many people dealing with PCOS also suffer from IC. For some folks, once they get their PCOS under control, the IC symptoms actually start to improve.

At the end of the day, it all comes down to diet and managing symptoms—basically using food as your medicine. We shovel all kinds of junk into our bodies like we're filling up trash cans, so it’s no shocker that our systems react this way.

The absolute worst thing you can do when you have IC is go grabbing random teas or trying to acidify your urine. Most teas are actually harmful, especially green tea and cranberry. Your safest bets are chamomile, peppermint (which helps relax the smooth muscles), and anything that's strictly caffeine-free and tannin-free.
For some people, D-mannose is a lifesaver, but for others, it just makes the symptoms even worse.

I stumbled upon this food list that seems pretty solid. http://www.ichelp.org/document.doc?id=7

Also, here’s a blog post where someone shares their experience fighting IC for years. Might be worth a look. http://www.curezone.org/blogs/f.asp?f=1421
frozensailor10 frozensailor10 Newcomer
1 message
joined Feb 2015
#47 ·
Nicole Ward6 said:Hmm, I've been struggling with these exact same issues for three years now. Where can I go for testing so I can actually get a formal diagnosis? Based on everything I'm feeling—frequent urination without any visible signs of infection—I strongly suspect it's that specific condition. I've tried every antibiotic imaginable, but nothing works. The last time I saw a urologist, he just prescribed Medazol. When I asked him what was actually wrong, he just said it was "chronic." I don't get it; I'm only 32, not an old lady! On top of that, I can't sleep at all because of the constant pressure. It’s really taken a toll on my mental health because I've spent three years unable to figure out what's happening or find the right treatment. Please, HELP!!!

Hey! I've been struggling with this for four years too. I had a cystoscopy and they found an expulsion at the bladder neck trigone... my doctor just calls it "chronic" and leaves it at that. I had an IV a year ago and everything seemed fine then. Does anyone else have trouble actually going, like having to strain to pee?🤦
Nicole Ward6 Nicole Ward6 Member
11 messages
joined Jul 2011
#48 ·
frozensailor10 said:Hey! I've been struggling with this for four years too. I had a cystoscopy and they found an expulsion at the bladder neck trigone... my doctor just calls it "chronic" and leaves it at that. I had an IV a year ago and everything seemed fine then. Does anyone else have trouble actually going, like having to strain to pee?🤦

Sorry, I just saw the message. 😛
I haven't actually gone all the way through the diagnostic process yet, so I don't have an official IC diagnosis. That said, I definitely recommend that everyone else keeps pushing for testing and follows the advice of mainstream doctors before jumping into alternative treatments. But man, all the symptoms are there. There are so many times when it feels like my bladder lining is just raw—it’s honestly like pouring alcohol or salt directly onto an open wound.
I'm feeling way better than I was a few years ago. I'll shoot you a DM with the rest of the details. 😛
granitecyclist6 granitecyclist6 Newcomer
3 messages
joined Jul 2011
#49 ·
The forum isn't exactly buzzing. If anyone here has been diagnosed with IC, please send me a private message. I've been dealing with this for over a year now, but without an official diagnosis, I can't find a doctor who actually gets it. It’s hard to find someone to talk to who understands the reality of this. 😢
redotter95 redotter95 Newcomer
4 messages
joined Jul 2015
#50 ·
Can any of you who've been diagnosed with IC let me know which doctor actually gave you the diagnosis? Like, who's the go-to specialist for this stuff here in the States? Feel free to just shoot me a DM if that's easier.
redotter95 redotter95 Newcomer
4 messages
joined Jul 2015
#51 ·
Since nobody's chiming in yet, I figured I'd just lay out my whole situation here—hoping maybe someone else is dealing with the same weird stuff. 🙂

So, basically... I've dealt with frequent urination my entire life. No actual pain, just had to pee every hour or two, though it was always an easy process. Since my urine cultures always came back clean, my GP didn't think anything of it, and some social gynecologist actually told me it was just because of my spine and basically kicked me out of the office.

The real trouble started about two years ago. After sex, I’d get this urethral pain right after peeing, which would just vanish on its own after ten days. Cervical swabs came back totally clear. I was still peeing constantly, but the urethral pain stayed away until early this year, when the exact same thing happened again after sex. Then, by the third month, things started getting uncomfortable around the vulva area. My gynecologist insisted it was a yeast infection and gave me vaginal suppositories, but those honestly just made everything worse. Swabs and cultures? All sterile. So far, it's just been a constant cycle of ups and downs.

Then, about a month ago, things took a turn for the worse. Now, actually peeing is a struggle. It’s hard to start, the flow is weak or stops and starts, and I feel like I can't fully empty my bladder. If I strain, the flow gets stronger, but I try not to do that. Honestly, going to the bathroom has become a total nightmare. 😢

I saw a urologist, and my uroflow test was pretty bad. There's a significant amount of residual urine left in my bladder, and the ultrasound showed a prominent bladder neck—basically like the muscle there is too tight. The specialist recommended a urethroscopy and maybe some dilation. Then I saw a neurologist, who suggested a urodynamic study, so I'm planning to get that done soon. On top of all this, I've got other issues too, but that's a whole different story for now.

One weird thing I've noticed is that it's actually easier to go if my urine is more concentrated. I've been keeping a bladder diary, and I'm hitting the bathroom about 15 times a day, which my doctor says is way too much.

If anyone out there has gone through something similar, please reach out so we can swap notes or info. I'm losing my mind over here.
Brandon Davis11 Brandon Davis11 Newcomer
2 messages
joined Dec 2015
#52 ·
Hey there, has anyone actually tried aloe vera capsules for this condition?
redotter95 redotter95 Newcomer
4 messages
joined Jul 2015
#53 ·
I tried drinking aloe vera juice—not the capsules—but I didn't really feel any difference, honestly. I know I've read online that it helps a bunch of people ease their symptoms, though. Maybe the capsules actually pack more of a punch than the liquid stuff? 🤔
frozenjackal12 frozenjackal12 Newcomer
3 messages
joined Jan 2016
#54 ·
I’m pregnant and currently stuck in the hospital being bombarded with every single live painkiller and antibiotic they can throw at me. My bladder is absolutely killing me—I haven't slept in weeks. Honestly, the doctors here seem totally clueless about what's actually going on. A while back, a urologist suspected it might be IC, but once I started feeling even a little better, I didn't bother following up with more tests. Anyway, that doctor isn't practicing in the US anymore. I am desperately begging you guys: please, if you have a name of a urologist who actually helped you, or someone who gave you an accurate diagnosis after running the right tests and actually knows their stuff, let me know. I haven't slept in a month and the pain is becoming unbearable; it feels like my bladder is constantly full and about to burst. I can barely move from my bed. I'm based in Washington, D.C., so please, help me find a specialist for both me and my baby because I just can't take this anymore.
Amy Moore6 Amy Moore6 Newcomer
2 messages
joined Jan 2016
#55 ·
frozenjackal12 said:I’m pregnant and currently stuck in the hospital being bombarded with every single live painkiller and antibiotic they can throw at me. My bladder is absolutely killing me—I haven't slept in weeks. Honestly, the doctors here seem totally clueless about what's actually going on. A while back, a urologist suspected it might be IC, but once I started feeling even a little better, I didn't bother following up with more tests. Anyway, that doctor isn't practicing in the US anymore. I am desperately begging you guys: please, if you have a name of a urologist who actually helped you, or someone who gave you an accurate diagnosis after running the right tests and actually knows their stuff, let me know. I haven't slept in a month and the pain is becoming unbearable; it feels like my bladder is constantly full and about to burst. I can barely move from my bed. I'm based in Washington, D.C., so please, help me find a specialist for both me and my baby because I just can't take this anymore.

I rarely come back to this thread. I was gone for a few years, just completely off the grid, and today I decided to open it up again just to see if anything had changed, only to stumble right onto your post. I actually started this whole discussion back in 2007 under the name Steven Sanchez10. So much time has passed since then, and honestly, I stopped posting about it on the forums because I’d just had enough—I was totally fed up with everything. I registered again today with a new handle because I couldn't remember my old password, but I just couldn't let you go without responding, especially since you're pregnant and I can only imagine how hard this must be for you. Over the last few years, I have been through the wringer with doctors and alternative medicine people. I’ve swallowed mountains of antibiotics and all sorts of different medications. It felt like every single doctor had their own little theory and prescribed something completely different from the last one. The one thing they almost all agreed on? They’d throw antibiotics at me, even though my urine cultures were sterile and my swabs came back "clean." Then they’d just pivot to some other class of drugs. It really just depended on which urologist you saw. For example, a urologist who mostly sees women dealing with incontinence or neurogenic bladder would prescribe the exact same stuff those women get. Or a surgeon might push invasive methods, like bladder hydrodistension. Some doctors actually had a better approach and tried targeting things specifically—like using tricyclic antidepressants or antihistamines—assuming it was definitely IC. Speaking of antihistamines, Atarax was one of them, which also acts as an anxiolytic... and there were so many others, even Omnic. None of it really made a dent. The absolute worst part for me was the sleep. I’d be getting up as many as eleven times a night. It absolutely trashed my long-term relationship. I don't even need to tell you how much the lack of sleep, the daytime exhaustion, the damaged intimacy with my partner, and the general mental fog and limitations this illness brings can destroy a life. It bleeds into every single corner of your existence, not just your sex life. I kept putting off having kids, waiting for some kind of therapy that would minimize the symptoms enough so I could live a somewhat normal life, try to conceive, and actually carry a pregnancy to term. Years went by, bouncing from doctor to doctor, and now... well, now it feels too late to start a family or have that healthy, stable relationship I wanted. That’s just my experience, though. Not everyone ends up in the same spot, and everyone’s body reacts differently. Maybe the treatments they gave me would actually work for someone else, or maybe someone else would find relief much earlier and manage to fix their bladder or at least ease the symptoms. If I could turn back the clock, the one thing I’d change is leaving the US to seek a diagnosis elsewhere—somewhere where they follow actual clinical guidelines from the jump. I wish I’d seen a urologist who specialized in interstitial cystitis and actually had a massive caseload of patients like me. I really hate that my diagnostic process started with such invasive stuff like hydrodistension (which is both a diagnostic and a treatment method, and by the way, it did nothing for me) and biopsies. I wish they had just done a potassium test instead. That’s way less invasive and actually useful if you're planning specific treatments, since it can show if you're even a candidate for GAG therapy. Also, regarding the treatment choices—some doctors operated under the theory that bacteria had burrowed deep into the bladder lining, so they’d inject antibiotics directly into my bladder every single day for weeks. It didn't help. If anything, it just irritated my urethra even more because of the constant catheter use. Honestly, if I'm already being subjected to bladder instillations, wouldn't it be smarter to try a GAG solution (glucosamine glycan) to coat the lining and protect it from all those irritating substances in the urine)? It would have made so much more sense than the endless rounds of bladder antibiotics I took. There's really no point in doing antibiotic instillations if they didn't work orally; the bladder tissue isn't like the prostate, which is encased in a capsule and poorly vascularized, making it hard for antibiotics to penetrate. So, it was just a chaotic mix of everything, with no real order, no logic, no guidelines... just too many doctors all doing the same useless things, going from one to the next in a giant circle. I know I’m not making this any easier for you, and I’m not offering a magic solution, but I truly worry about whether you'll get the help you need here in the States. If your cultures and swabs are clean, and your kidneys and gynecological health are fine, it’s highly likely this is a bladder issue (IC?). You know that even healthy women face increased bladder pressure during pregnancy, leading to frequent urination and waking up more often at night. But with IC, those symptoms can become absolutely brutal. That was my biggest fear, which is why I waited to plan a pregnancy until I thought I was cured... but I never reached that point. Now I just regret not moving away, trying to change my circumstances, and just biting the bullet to try and start a family during my "normal" years, regardless of what state I was in. Now it feels too late. Just try to stay brave. I don't know how far along you are or how old you are, but I'm assuming you're young enough to pull through this.🙂 Maybe you could look into some kind of calming tablet that’s actually safe to take while you're pregnant? Just so you can finally get some decent sleep at night. Since you're expecting, getting a full diagnostic workup for IC gets pretty complicated, and honestly, figuring out a treatment plan is just as tricky. You might want to check out some American forums to see what meds or relaxation techniques—like acupuncture—other pregnant women with IC are using. (By the way, I think there's a specialized pain management center over in Seattle that uses acupuncture, which might help with the pain). The most important thing right now is that you and your baby make it through this safely; things will be easier once the baby is here. Here’s a link to an official IC site, maybe you'll find something helpful there: http://www.ic-network.com/

I’m rooting for you! I truly believe you'll find the strength and courage to push through to the end. 🙂
frozenjackal12 frozenjackal12 Newcomer
3 messages
joined Jan 2016
#56 ·
Thanks for the reply; honestly, just knowing I’m not alone in this means everything. I’ve been taking Normabell just to catch some sleep—taking them before the day even starts just to feel a little numb enough to actually make it through. It’s pretty much the only thing I’m allowed to touch while pregnant. I’m 23, currently six months along, and man, it’s been a ride. My husband and I fought for four years to conceive, then we lost a baby two years ago, and now that we finally succeeded, instead of celebrating, I’m just white-knuckling my way through every single day like it’s a year-long ordeal. He’s being an absolute saint, handling everything, while I’m basically bedridden and feeling like a total invalid. The doctors here just stare at me with these blank looks and tell me the same stuff you probably heard—that maybe some bacteria crawled deep, deep into the bladder wall. Most urologists won't even touch me because they're terrified of the pregnancy complications, so they just shuffle me off to OB-GYNs. I’ve been on the edge of a breakdown for a month now; I’m ready to just give up, but I have to stay strong for the baby and myself. What hurts most isn't even the physical stuff, though—it's seeing my mom and my husband suffer right alongside me. This illness is like a plague that drags everyone you love down with you. So here I am, stuck in this hospital bed, while the specialists talk down to me like I’m some burden, basically saying, "Look, we did what we could, if it still hurts, that's your problem." And honestly, dealing with all this in a place as dysfunctional as the US just makes everything ten times harder.
Robin Newman2 Robin Newman2 Newcomer
2 messages
joined Jan 2016
#57 ·
Hey frozenjackal12,

I’m dealing with some pretty similar issues myself, and honestly, ginger tea has been a lifesaver for me. I’m not entirely sure if you should be drinking it while pregnant, though—you might want to do a quick Google search just to be safe.

One thing I’ve noticed is that my bladder symptoms take a massive dive whenever I eat white sugar, white flour, or red meat. It feels like those foods just acidify my whole system, making everything ten times worse. And hey, if they’re pumping you full of all sorts of medications, that could be contributing to the flare-ups too.

I actually went through my entire pregnancy dealing with this same issue, though thankfully it wasn't quite as excruciating as what you're describing. I definitely had my fair share of bad days (that last month of pregnancy was absolute torture), but I managed to push through, and my little girl just celebrated her first birthday recently.

Hang in there and try to stay patient. Make sure you're sipping on plenty of fluids, too. I really hope everything turns out okay. Take care of yourself.

Neem tea (that Indian plant) helps me too, but seriously, don't touch that if you're pregnant. You could also try marshmallow root tea; it’s great for soothing mucous membranes, so it might help heal the lining of your bladder.

Good luck!
Scott Hall3 Scott Hall3 Newcomer
6 messages
joined Mar 2008
#58 ·
Brandon Davis11 said:Hey there, has anyone actually tried aloe vera capsules for this condition?

I have—I ordered them from overseas (pretty sure I'm not supposed to be advertising stuff here), specifically formulated for IC. I took them for about 4-5 months. The only thing that felt any difference was my wallet—my bladder stayed just as miserable as before.
Amy Moore6 Amy Moore6 Newcomer
2 messages
joined Jan 2016
#59 ·
Robin Newman2 said:Hey frozenjackal12,

I’m dealing with some pretty similar issues myself, and honestly, ginger tea has been a lifesaver for me. I’m not entirely sure if you should be drinking it while pregnant, though—you might want to do a quick Google search just to be safe.

One thing I’ve noticed is that my bladder symptoms take a massive dive whenever I eat white sugar, white flour, or red meat. It feels like those foods just acidify my whole system, making everything ten times worse. And hey, if they’re pumping you full of all sorts of medications, that could be contributing to the flare-ups too.

I actually went through my entire pregnancy dealing with this same issue, though thankfully it wasn't quite as excruciating as what you're describing. I definitely had my fair share of bad days (that last month of pregnancy was absolute torture), but I managed to push through, and my little girl just celebrated her first birthday recently.

Hang in there and try to stay patient. Make sure you're sipping on plenty of fluids, too. I really hope everything turns out okay. Take care of yourself.

Neem tea (that Indian plant) helps me too, but seriously, don't touch that if you're pregnant. You could also try marshmallow root tea; it’s great for soothing mucous membranes, so it might help heal the lining of your bladder.

Good luck!


That’s definitely good advice for most people, I get that, but for some of us dealing with IC—or whatever they want to call this miserable disease lately—trying to chug massive amounts of water during a flare-up feels less like "being brave" and more like a death wish. Seriously. It could basically mean spending your entire life glued to the bathroom floor. When you're in those phases where the urgency hits, you're looking at running to the toilet every ten minutes, twenty-four hours a day. It doesn't even matter how much is actually in your bladder; that constant, frantic urge is always there, and adding more liquid on top of that just makes the pressure absolutely unbearable. I remember one time, I just stayed in bed, trying to white-knuckle my way through it to see how long I could last... I managed an hour, maybe, and then I just couldn't even stand up anymore. I was literally crawling on all fours to the bathroom. It's just awful.
Eric Miller9 Eric Miller9 Newcomer
3 messages
joined Feb 2016
#60 ·
I've been dealing with this mystery issue for four months now, and honestly, I'm at a loss. My test results—everything from urine cultures to urethral swabs—keep coming back clear. It all started after I sat on a cold bench for a bit; suddenly, it felt like a full-blown infection. About ten years ago, I dealt with something similar where they found ureaplasma and mycoplasma, which antibiotics cleared right up. But this is different. The pattern is driving me crazy: I'll feel totally fine for two or three days, then by the afternoon of the fourth day, that heavy sensation kicks in after I pee. I don't even know how else to describe it. It’s this pressure at the bottom of my bladder and a sensitive urethra. If I soak in a warm bath overnight, it settles down, but the uncertainty is what's really killing me. I can't make any plans because the pain just comes and goes whenever it feels like it. Sometimes I'll just grab an analgesic just to numb that stinging, dull ache. My urologist is stumped. An ultrasound looked okay, so now he's mentioning the possibility of a urethral caruncle, which is supposedly an easy fix, but the thought of a cystoscopy makes me want to crawl under a rock. The idea of having a tube shoved into my already sensitive urethra is terrifying. I'm wondering... could these symptoms be pointing toward IC?

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