Posts by Nicole Ward6

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. 😛

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. 😁

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.😁

James Mendoza76 said:Hey everyone. I just finished a six-month stretch on the night shift, and my body is completely wired to that schedule. I was sleeping from 7 or 8 in the morning until about 5 or 6 in the afternoon. My shift ran from 10 PM to 6 AM every single day, maybe getting two days off a month. My last shift ended this past Sunday. It’s been four days now, and honestly, I don't see any progress. Over the last three days, I’ve barely slept four hours total because I kept forcing myself to stay awake during the day. It didn't work. I couldn't fall asleep at night to save my life, and eventually, I just crashed around 7 or 8 this morning...🙂 and woke up again at 5 PM. Nothing has shifted despite my best efforts to get back to a normal routine over the last four days. Has anyone dealt with this before? I really need some help. I'm done with this lifestyle, and my energy levels are sitting at maybe 50 or 60 percent right now.🙄 Any tips or suggestions on how to reset? I'm starting to feel pretty terrible. I won't even list the side effects—depression, lethargy, general weakness, irritability, you name it. One thing is for sure: never again...

I actually stumbled back onto this forum by accident since it seems like things have gone quiet. If I understood correctly, you worked nights straight for six months and now you can't sleep at night? That makes sense. Your body is programmed that way after a while. You'll probably settle back into a rhythm soon enough.🙂 I know exactly how you feel. I used to work nights too, but mine were even worse. I'd finish a night shift, come home, and then have to head right back in for a weekend shift starting at 7 AM. Those were the toughest ones. I did that for a few years and ended up with chronic health issues.😢 Listen, everyone, watch out for those night shifts. It's not something to mess around with.🤷

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?

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

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.🙂

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.🙂))

silvertrucker112 said:so how exactly are you checking him out?

Yeah, seriously, how are you checking him out??

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 tried taking some Melatonin last night, and honestly, it feels really natural... I’d definitely keep using it, but I’m a bit stuck on whether that's actually okay. I’ve been digging around online, and the advice is all over the place—some sites say you should only take it when you really need it, while others claim daily use is perfectly fine. I even scrolled through some American forums where people mentioned they've been taking it consistently for three years straight... Is that actually safe?😕

Steven Sanchez10 said:It might be worth getting an IVP (intravenous pyelogram)—essentially an X-ray of the kidneys—to rule out any stones once and for all.
You should also consider checking for renal tuberculosis just to eliminate that possibility.
What kind of symptoms are you actually dealing with? Is it just frequency, or are you in pain too? How often are you going during the day versus being woken up at night? Does that pressure in your bladder linger even after you've finished? Of course, these things fluctuate constantly depending on various factors—some days feel worse, some better, but rarely is it ever truly 100% okay.
Are there specific triggers that make things flare up, such as intimacy, anger, acidic foods, or even just the cold?

The cold makes everything so much worse. Honestly, the cold is what started all of this for me. It began with a simple chill. You wouldn't believe it, but even the slightest breeze or a tiny temperature shift can trigger a flare. In the beginning, it took a lot more to make my bladder feel that "tingling" sensation, and the urge to go wasn't nearly as intense as the pressure I feel now. Sex affects me too. Even getting another illness, like a common cold, makes it worse. And if I don't stay hydrated, I'm in trouble. This year, I realized certain foods have started bothering me, like cherries. But nothing hits harder than the cold. Once I pee, even if I could hold it easily an hour before, the second I feel a draft, that intense pressure hits—even if my bladder isn't full. When I go, the urine feels hot, and while I feel better immediately after finishing, that pressure just stays there. I’ve also noticed some immune supplements, like Echinacea or black currant extract, actually trigger me. There’s just no peace, day or night. But nights are the absolute worst. I'm up every two hours, and when my bladder goes haywire—which usually happens whenever I catch another bug—sleep becomes impossible. I could write entire novels about this... it all started so innocently with some ovarian inflammation that wouldn't clear up, and somehow, after a dip in cold water, it "moved" into my bladder. Back then, I only had to get up once a night. Man, those were the days.🙂

Steven Sanchez10 said:I am so sorry you're going through this; I truly empathize with your situation..
What kind of tests have you completed so far?
Have you had full cultures done, a gynecological exam, a cystoscopy, or perhaps urodynamics?...
What did your results show?
That sensation of pressure and the resulting insomnia are classic hallmarks of interstitial cystitis; I deal with much of the same, having spent years deprived of sleep. However, one must methodically rule out all other potential culprits before those symptoms can be definitively attributed to interstitial cystitis.
So, which diagnostic paths have you taken, and have you ruled out other possibilities: gynecological issues like infections or endometriosis, renal tuberculosis, a prolapsed bladder, or even cysts that might be exerting pressure?
Let me know.

Regarding my testing, I've done urine cultures about 4 or 5 times—all sterile. I also did a full urinalysis; everything looks fine except for some red blood cells. My urine cytology showed micro-bleeding from the urothelium, likely in the lower part and maybe even the upper tract (kidneys). I've had three ultrasounds; once everything was clear, the second one showed something that might have been sediment or sand, but they weren't sure, and the third one was clear again. I had a cystoscopy two months ago—there are zero signs of inflammation (!!!)—but they did find some mild leukoplakia, which is supposedly caused by inflammation... even though there's no inflammation present. I saw my OB/GYN for cervical swabs covering HPV, chlamydia, anaerobes, aerobes, mycoplasma, and ureaplasma using the PCR method—all came back sterile. The only thing I haven't done is a urethral swab, mainly because my urologist said there was no point since there's no sign of infection. I've thought about seeing a specialist privately just to get that swab, but honestly, I'm starting to fear they won't find anything either. Oh, and I did a more detailed pelvic ultrasound too. Same result. Also, my period feels different now. And of course, obviously, they referred me to a psychologist. It's true I've been under a lot of stress lately, which shouldn't be ignored, but still! On the urine cytology, you can actually see the bladder cells "peeling"—the first and middle layers. I looked that up online because it didn't seem like my urologist really noticed it.

Rebecca Ward said:Hey from Seattle, I was wondering if name of doctor could share who diagnosed you? Honestly, I haven’t had much luck with urologists yet, and I still haven't found anyone who actually takes my issues seriously. All my tests come back normal, which apparently is enough for doctors to just brush me off and claim it's all in my head and that I'm perfectly fine.
Thanks for the help.

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!!!