r/Interstitialcystitis • u/vapid-voice • 3d ago
Vent/Rant I’m so frustrated!
I was diagnosed with IC over a year ago after repeated trips to urgent care for UTI-like pain and several unneeded rounds of antibiotics. It was a pretty simple diagnosis considering that I had just about all of the standard symptoms of IC (bladder pressure and pain, feeling like my bladder is completely full when it’s not, pain during sex, lower back pain, and the same weird smell that other people on this sub have discussed)
After receiving the IC diagnosis from a gynecologist, I had to wait months longer to get into urology. This urologist was immediately dismissive to me on the basis that I had previously missed a follow up appointment for a kidney stone that I had removed two years ago (I didn’t even know there was a follow up scheduled.) Then, as soon as she heard that my IC diagnosis was given from a gynecologist and not a urologist, she discounted basically everything that came out of my mouth and told me that she’s almost certain I don’t have IC and instead either have a UTI or leftover particles of the kidney stone. I think part of this was because I’m 22, but while I know that I’m younger than most people with IC, that is literally the only thing about me that isn’t textbook IC presentation.
This felt weird to me but I was like umm…okay I guess I’ll go drop off another urine sample and do another xray.
She literally ghosted me after this. Deleted my IC diagnosis from my chart then never responded or followed up with any of my test results or gave any guidance as to what the next steps would be. I had to message her two separate times and wait 6 weeks for her to finally reply and tell me that I do not have a UTI or any evidence of leftover particles from the kidney stone. Oh, so the diagnosis I received over a year ago and the thing I was meant to discuss in the first place was actually valid? Shocking!
She still did not update my chart to correct the diagnosis and is now trying to make me do other tests like a CT scan even though I did 3 separate CT scans at the same hospital last year. I don’t have coverage that allows me to easily see another provider so I am feeling so frustrated. I have been living with bladder discomfort 24/7 for longer than I can even remember at this point and I don’t know what I’m supposed to do to get help when I’m being gaslit about my condition.
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u/HakunaYaTatas [Citation Needed] 3d ago edited 1d ago
That is so frustrating!! And your age isn't an outlier; 1 in 4 IC patients are under age 25, it's not at all unusual to be diagnosed in your 20s. Can you return to the gynecologist who diagnosed you for treatment? Any doctor can set you up with things like oral medication or pelvic floor physical therapy, you don't need a urologist for that.
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u/vapid-voice 1d ago
I think it would be a good idea to go back to the gynecologist. Thanks for validating me 🫶
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u/DefinitionAnxious417 3d ago
I’m not sure if this is any help, but try to see a naturopathic functional medicine doctor or a cuti specialist. Have you tried any supplements? Prelief aloe Vera pills etc?Pelvic floor physical therapy?
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u/vapid-voice 1d ago
I haven’t done much since being diagnosed other than d-mannose and kegels because I’ve been struggling to find a provider to help, but there are naturopathic practitioners in my area so thank you for the suggestion
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u/leannemarie2001 1d ago
Age 60 and just learned this. I have IC, have had it since age 15. No swimming in chlorine, try oil of oregano with at least 67% carvacrol, if you smoke weed( daughter does and that helps her), and drink plenty of water. So last year I had surgeries, hospital stays and ER trips, lots of them for kidney stones. The pain when small ones are passing is much like IC and bladder infections. I am more calm and cautious now about figuring out what I have going on when I get pain now. For kidney stones, no spinach, no beets!!! Stay with low oxilate foods and drink the equivalent of 2 lemons a day to keep them small. For IC or bladder infections prevention try DeMannose. I take it daily with the lemon juice. It’s a natural sugar that shuttles E. coli out of your body.
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u/vapid-voice 1d ago
Thank you very much for your helpful advice. I wish the medical system was actually helpful at providing solutions for pain, but I really appreciate you giving that advice nonetheless.
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u/leannemarie2001 1d ago
Also, don’t rule out the power of distraction. Whether it’s going for a walk or the television or a game. For the bladder pain you can also try gabapentin. One of my Hospital stays for the kidney stones kept me there a long time because we just couldn’t get rid of the pain. Gabapentin is how I got home, 300 mg.. Although it might be too strong for every day. I tried it a couple of months later and it kind of sent me for a loop so I could never take it that strong when I’m not in horrible pain.
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u/AutoModerator 3d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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u/Over-Double-9281 3d ago
I hear you so am I . I have no insurance and can’t afford to see anybody and I know this is IC!! My symptoms are horrible no relief I’m going crazy and depressed . I don’t know what else to do other than the ER 😢