Started by Steven Sanchez10 · · 👁 6 views · 71 replies
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redotter95 said: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 said:I haven't personally messed around with glucosamine sulfate, but from what I've read, most people seem to have pretty good luck with it. Also—it looks like quercetin can be a big help when it comes to bladder issues and urination.
You should definitely stay away from coffee, citrus fruits, and don't even get me started on alcohol. You can always find a list online of foods to dodge if you're dealing with IC.
Steven Sanchez10 said:Has anyone here been officially diagnosed with interstitial cystitis—that chronic, non-bacterial version of cystitis that seems completely immune to standard treatments? I’ve been wrestling with this for ten years now, cycling through specialists and various alternative practitioners, pouring a small fortune into it with absolutely zero results... HELP
Amy Moore6 said: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 said:Amy Moore6, if you're still checking this thread, give me a shout. A lot of time has passed, and I'd love to catch up via email. I tried reaching out through my old account a bunch of times but couldn't get through div>
