Living with Interstitial Cystitis (IC)

I’ve been wrestling with these issues for about 15 years now. It all kicked off during my first pregnancy, and honestly, the cold weather makes everything so much worse. If I feel even a hint of discomfort in my pelvic area, I bloat up like a balloon. There's this constant pressure in my lower abdomen and an urgent need to pee, though it’s usually just a few drops. It doesn't burn, but I'm sitting there like an idiot and nothing happens. Then there's the pressure combined with a stinging sensation at the urethral opening. Don't even get me started on sex... and on the bad days, the pain is so intense I can barely sit or walk properly; I end up wrapped in layers like I'm heading into a blizzard. Now that things are flaring up again and winter is approaching, I'm bundled up like a bear, frantically hunting for wool pants—I can't even remember the last time I wore a skirt. I've had almost every test imaginable except for a cystoscopy. My urethral swabs are fine, cervical tests are clear, urine is sterile, cytology shows 8 cells in the urine, and I even did four consecutive days of urine cultures. Blood work is normal, gynecologist says everything is fine... so what am I supposed to do? I'm starting the whole process over again with a cystoscopy and a urography, but it feels like a total waste of time. Just like many of you, I've cycled through antibiotics and urinary antiseptics. I was on prophylaxis for six months or more and felt a bit better, but then my gut flora went completely out the window. Even cranberry juice makes me nauseous now. I suppose I might be partly to blame since I don't drink enough fluids. You guys gave me the idea of what's happening—maybe I should just move somewhere warm in the South, maybe above 40 degrees, otherwise I'll be stuck wearing socks forever. I'll check with my hospital; they recently got some new equipment that might actually help. Best,

Hi. I know exactly what you mean. I can't even find you in the thread, but it sounds like things are just getting worse and worse for you... I actually stopped seeing doctors altogether and switched to alternative treatments. Hopefully, things will take a turn for the better soon. Physically, I’ve started feeling some improvement—I'm not sure if you're experiencing the same thing, but I'm constantly running to the bathroom during the night. Everything feels completely out of whack, and I just can't get a decent night's sleep anymore. That really makes everything so much worse. Plus, the cold weather isn't helping either, just like it's affecting you. Good luck with all your testing and research...

I am not entirely certain whether you have been diagnosed with interstitial cystitis, an overactive bladder, pelvic floor dysfunction, or perhaps something else altogether.
One cannot truly speak of interstitial cystitis without first undergoing a comprehensive battery of tests. This process requires laboratory work to rule out all possible infections—think urine cultures, swabs for mycoplasma, chlamydia, trichomonas, herpes, or even renal tuberculosis. Furthermore, clinical clarity usually demands an IV urogram, a cystoscopy to inspect the bladder lining, cystometry to evaluate muscle function and maximum capacity, and hydrodistension with biopsy to check for petechial bleeding, ecchymosis, or glomerulations.

Have you kept a bladder diary? It is worth noting how often you find yourself needing to go; with IC, frequency can skykcket to as many as 60 times a day. Patients often face a constant urge, intense pressure, and persistent discomfort. These symptoms tend to fluctuate based on dietary choices, sexual activity, menstrual cycles, and various other factors.

Do you experience longer periods where things seem to improve? I wonder how much your quality of life has been compromised and how you manage to navigate your career and daily responsibilities. Dealing with IC can turn simple pleasures, like grabbing coffee or going to the movies, into significant challenges. It is hardly surprising that the impact on a patient's life is compared to those facing much more systemic struggles, as noted here:
A Harvard Medical School Guide states that The quality of Life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering fra chronic cancer pain

The following statistics also paint a sobering picture regarding the prognosis:

A survey showed that among people with interstitial cystitis:

40% were unable to work
27% were unable to have sex due to pain
27% had marriage breakdown
55% contemplated suicide
12% had attempted suicide

This is a serious diagnosis, one that should not be confused with "standard" chronic cystitis, which typically allows for longer periods of remission where a patient can function normally.

It is a condition that profoundly disrupts one's existence. While there are rare accounts of complete recovery or significant improvement, for most, it remains a persistent, chronic struggle characterized by debilitating symptoms.

If a person hasn't completed that full diagnostic gauntlet, they shouldn't jump to an IC conclusion. Because the etiology is so murky and the testing so complex, it often takes five years of searching just to reach a definitive answer.

Regardless of what the official diagnosis says, the symptoms for IC are always the same. Honestly, I’ve stopped searching for answers. From what I see from you ladies here, and from everything I've read online, this is an incurable condition that’s incredibly tough to pin down. That said, I did come across some info on American and Italian sites suggesting acupuncture might actually work for IC. I tried one round of ten sessions, and I'm using magnets now. I can tell you that after those ten sessions, I felt about halfway cured.🙂But then, two weeks later, everything went right back to how it was. Based on what I've read in these forums, some women go for months, doing sessions two or three times a week. It really depends on your acupuncturist and if they actually hit the right points. Since this is a relatively new condition, even acupuncturists don't fully know how to treat it yet, so they just try treating it like standard cystitis. And from what I've read, that works for some people...🙂In my case, it's all about the kidneys—either they aren't working well energetically or they're blocked. That explains the cold legs, being sensitive to the cold, the smelly sweat, the lack of energy, and the total despair and depression. Most importantly, though, it's the bladder that feels like it has "lost control." That constant pressure and the non-stop urge to pee, whether it's day or night, makes no difference. It's a vicious cycle, for sure. Oh well, things will get better; youth is on my side.🙂))

Well, good luck—keep us posted if you actually see any progress. Personally, acupuncture did absolutely nothing for me, but hey, that doesn't mean it won't work for you.

Scott Hall3 said:Well, good luck—keep us posted if you actually see any progress. Personally, acupuncture did absolutely nothing for me, but hey, that doesn't mean it won't work for you.

You really have to hit those specific points, just like she said. This is such a mysterious condition—nobody truly knows why it happens or how you get it. Honestly, here in the States, it feels like we're lagging behind on everything. Do some digging online; search for "acupuncture for interstitial cystitis" and you'll see plenty of info. It’s a long road, though... this is definitely a chronic thing. I am feeling a bit better lately, actually. I've been using magnets, which helps my energy levels and makes my bladder feel less sensitive. I'm about to start my next round of acupuncture, hoping that by session three or four, I'll finally turn a corner. I also managed to sort out some other issues that were draining my spirit. It was tough and took some time, but it was worth it. My sleep is better now, too; when I wake up, my brain doesn't immediately spiral into worrying about the pain, so I can actually fall back asleep. And if I don't sleep well, the magnets help save the day. I'll keep you posted on how it goes.🙂

Yeah, I found one of those sites, and honestly, it gives you some real hope! http://acupuncture.blog.co.uk/2009/0...titis-6798920/

Steven Sanchez10 said:I am not entirely certain whether you have been diagnosed with interstitial cystitis, an overactive bladder, pelvic floor dysfunction, or perhaps something else altogether.
One cannot truly speak of interstitial cystitis without first undergoing a comprehensive battery of tests. This process requires laboratory work to rule out all possible infections—think urine cultures, swabs for mycoplasma, chlamydia, trichomonas, herpes, or even renal tuberculosis. Furthermore, clinical clarity usually demands an IV urogram, a cystoscopy to inspect the bladder lining, cystometry to evaluate muscle function and maximum capacity, and hydrodistension with biopsy to check for petechial bleeding, ecchymosis, or glomerulations.

Have you kept a bladder diary? It is worth noting how often you find yourself needing to go; with IC, frequency can skykcket to as many as 60 times a day. Patients often face a constant urge, intense pressure, and persistent discomfort. These symptoms tend to fluctuate based on dietary choices, sexual activity, menstrual cycles, and various other factors.

Do you experience longer periods where things seem to improve? I wonder how much your quality of life has been compromised and how you manage to navigate your career and daily responsibilities. Dealing with IC can turn simple pleasures, like grabbing coffee or going to the movies, into significant challenges. It is hardly surprising that the impact on a patient's life is compared to those facing much more systemic struggles, as noted here:
A Harvard Medical School Guide states that The quality of Life of interstitial cystitis patients resembles that of a person on kidney dialysis or suffering fra chronic cancer pain

The following statistics also paint a sobering picture regarding the prognosis:

A survey showed that among people with interstitial cystitis:

40% were unable to work
27% were unable to have sex due to pain
27% had marriage breakdown
55% contemplated suicide
12% had attempted suicide

This is a serious diagnosis, one that should not be confused with "standard" chronic cystitis, which typically allows for longer periods of remission where a patient can function normally.

It is a condition that profoundly disrupts one's existence. While there are rare accounts of complete recovery or significant improvement, for most, it remains a persistent, chronic struggle characterized by debilitating symptoms.

If a person hasn't completed that full diagnostic gauntlet, they shouldn't jump to an IC conclusion. Because the etiology is so murky and the testing so complex, it often takes five years of searching just to reach a definitive answer.

Hi everyone, I’m living proof that pelvic floor dysfunction can absolutely wreck your quality of life. I’ve been dealing with bladder issues for two years now, and honestly, five years ago it was already starting to creep in. It’s that constant sensation of needing to go, waking up multiple times throughout the night, and this intense feeling of inflammation that gets much worse after sex. Eventually, sex just became too painful—sometimes the ache would linger for ten days afterward—so I eventually just gave up on it altogether. After we both went through various tests and swabs, nothing bacterial was found, and a cystoscopy ruled out interstitial cystitis completely.
After a while, I realized this wasn't just about my bladder anymore; it had turned into a persistent pelvic pain that actually forced me to start taking Apaurine just so I could get any sleep at all. I also noticed that sitting for long periods made everything feel significantly worse. I even tried yoga, but strangely enough, that actually made the pain flare up even more.
Following a suggestion from a kind soul here on the forum, I ended up traveling to Munich to visit a specialized hernia clinic, where they finally diagnosed me with bilateral sports hernias. Basically, the muscles meant to support the inguinal canal have shifted out of place, which is the root cause of my pelvic floor dysfunction (PFD). That tension then triggers all the secondary issues like bladder irritation, painful intercourse, and even digestive problems.
PFD isn't really a recognized diagnosis here in the States, but if you suspect your symptoms might be muscle-related, I’d suggest picking up the book *A Headache in The pelvis* and seeing if it helps. If I don't end up needing surgery, that's going to be my main way of managing things since I don't have many other options.
I finally found my "why," and I truly hope you all find yours too. Wishing everyone the best of luck.
If anyone has questions, please feel free to reach out. 🙂

wearyheron15 said:Hi everyone, I’m living proof that pelvic floor dysfunction can absolutely wreck your quality of life. I’ve been dealing with bladder issues for two years now, and honestly, five years ago it was already starting to creep in. It’s that constant sensation of needing to go, waking up multiple times throughout the night, and this intense feeling of inflammation that gets much worse after sex. Eventually, sex just became too painful—sometimes the ache would linger for ten days afterward—so I eventually just gave up on it altogether. After we both went through various tests and swabs, nothing bacterial was found, and a cystoscopy ruled out interstitial cystitis completely.
After a while, I realized this wasn't just about my bladder anymore; it had turned into a persistent pelvic pain that actually forced me to start taking Apaurine just so I could get any sleep at all. I also noticed that sitting for long periods made everything feel significantly worse. I even tried yoga, but strangely enough, that actually made the pain flare up even more.
Following a suggestion from a kind soul here on the forum, I ended up traveling to Munich to visit a specialized hernia clinic, where they finally diagnosed me with bilateral sports hernias. Basically, the muscles meant to support the inguinal canal have shifted out of place, which is the root cause of my pelvic floor dysfunction (PFD). That tension then triggers all the secondary issues like bladder irritation, painful intercourse, and even digestive problems.
PFD isn't really a recognized diagnosis here in the States, but if you suspect your symptoms might be muscle-related, I’d suggest picking up the book *A Headache in The pelvis* and seeing if it helps. If I don't end up needing surgery, that's going to be my main way of managing things since I don't have many other options.
I finally found my "why," and I truly hope you all find yours too. Wishing everyone the best of luck.
If anyone has questions, please feel free to reach out. 🙂

Man, now I'm curious—how did they miss those hernias during your exams here in the US? I assume they just sent you for ultrasounds, but is there something an ultrasound misses? Or do you need specific scans? Also, what caused you to develop bilateral hernias in the first place?

Can I get a quick update on the acupuncture situation? Nicole Ward6 how's it actually working for you?

Scott Hall3 said:Can I get a quick update on the acupuncture situation? Nicole Ward6 how's it actually working for you?

No, unfortunately it didn't do much for me. 😢 Well, it helped a bit, but I'm definitely not cured yet.😢
I've switched over to homeopathy. I'm seeing this one homeopath who's actually pretty impressive—she managed to help a woman who was basically at her breaking point. Maybe she can help me too. I'll let you guys know how it goes.😁

Sorry for digging up this old thread. Is anyone actually feeling any better? Also, where are you guys getting acupuncture done, and does it cost an arm and a leg? Thanks in advance. 🙂)

Jack Anderson2 said:Sorry for digging up this old thread. Is anyone actually feeling any better? Also, where are you guys getting acupuncture done, and does it cost an arm and a leg? Thanks in advance. 🙂)

I'll just shoot you a private message so I don't get a yellow card. 😁

I honestly suspect my mother might be dealing with this herself. She’s been enduring this pain for over six years now—some days it’s absolutely debilitating, while other times it seems to ebb away just a little bit. She has gone through every single test imaginable; everything comes back perfectly normal. We’re talking cystoscopies, urodynamics, CT scans, MRIs, ultrasounds, blood work, urinalysis, colonoscopies, gynecological exams, even gastroscopies... And so, for years, she’s just been bounced from one specialist to another, essentially playing a game of medical whack-a-mole where nobody can find the culprit, leaving them to tell her that, according to the charts, she’s perfectly healthy.
Eventually, she ended up seeing a homeopath who, during a digital assessment, suggested that her bladder lining is severely compromised. He recommended she try to lower her urine acidity by incorporating more green juices into her diet and provided her with some drops that seem to offer a bit of relief. His theory is that because she has type 2 diabetes, the sugar crystals are somehow irritating and "scratching" the bladder wall. It makes me wonder, though—how on earth did none of those high-level doctors she visited all these years manage to pinpoint anything at all?
The reality is, she’s still in constant pain.

She’s basically given up on the doctors at this point, opting instead for those drops she occasionally swears by—though even then, her consistency is a bit hit-or-miss. We’ve actually started keeping a meticulous log to see which foods trigger her flare-ups and how her blood sugar levels might be playing a role in the pain intensity. It’s all over the place, honestly; sometimes her sugar is high but the pain stays manageable, other times it's the exact opposite, and occasionally both just spike together in a perfect storm of misery. She’s being incredibly stoic about it all, claiming she’ll just grit her teeth and endure it for as long as humanly possible, but she did make it quite clear that once she hits her absolute limit, she’s going to lose it!
Dealing with this relentless bladder pain for six and a half years now, and despite every test coming back perfectly normal, we still don't have a single concrete diagnosis. I suppose we’re reaching that stage where we’re just completely at a loss for what to do next.

A lot of women mention that Elmiron made a huge difference for them. For instance, check this out:

http://www.drugs.com/comments/pentos...-cystitis.html

I'm not entirely sure if it's readily available here in the States, but I bet there are ways to get it... probably worth looking into. You really need to hunt for a urologist who actually cares about staying informed and willing to put in the work. Don't have any specific names to suggest, unfortunately.

Wishing you the best of luck finding something that helps your mom. Hopefully, these next two links offer some clarity. If I were facing this diagnosis, I’d start by digging deep into research before trying to track down the right specialist. Good luck. 🙂

http://www.ic-network.com/

http://www.ichelp.org/

I suspect that taking Elmiron might actually be quite dangerous if combined with the specific medications she's currently using to manage her diabetes.

The symptoms don't quite align with IC—honestly, any decent doctor should be flagging IC as a possibility by now. It isn’t actually that difficult to diagnose, and I can tell you from experience—speaking about my time seeing doctors in Washington, D.C.—that I've run into plenty of physicians who proactively suggested IC and eventually sent me for the necessary tests.

One thing she can try immediately is tracking how her diet impacts her pain levels. With IC, there's a specific list of trigger foods that can really make things worse. Additionally, during urine tests or a cystoscopy, the clinical signs would likely become apparent.
Go ahead and comb through those links that crimsongull20 shared with you.

Could you describe her symptoms in a bit more detail? You mentioned the pain fluctuates—try to define when it peaks and when it subsides. Since this has been going on for over six years, she must have noticed some sort of pattern by now.
Has she noticed a difference after eating certain foods? If so, which ones?
What time of day is the pain most intense (right after waking up, during the day, or at night)?
Does movement or physical activity help her, or does it make things worse?
Does she ever have periods where she is completely symptom-free—even if just for a few hours, days, or weeks?
How is her urination behaving? Does she feel more burning at the start of the process or after she's finished?
Does she feel any relief after she urinates?
Is she able to accurately gauge how much fluid is in her bladder?
Does she find it easier when she stays well-hydrated and has to go frequently, or when her urine is more concentrated?

I'm only asking all this so I can give you some better guidance on what this might be—and what it probably isn't. 🙂

I can say for certain that it's better for her to hear "we don't know" than to be handed a bunch of incorrect diagnoses.

That homeopath basically fed her a mountain of lies just to sell his own remedies. They all try to push these drops that are essentially nothing but water, claiming they contain "information" about your illness (they perform some little rituals over them to supposedly "charge" or "energize" them, oh boy 🙄). He gave those exact same drops to a whole crowd of patients with completely different diagnoses and symptoms. The fact that the drops didn't work for her proves it. He just wants to convince himself they actually work. She should just eat more fruits and vegetables—especially raw ones—to help raise her urinary pH. There's really no need to go out and buy fancy green juices.
Besides, we're looking at the Health PDF here, and it's only right to point out which activities and alternative supplements are just useless.

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).