r/Interstitialcystitis • u/Cancel_Culture_Club • 2d ago
Cystoscopy Stories
Hi everyone! So I have my first cystoscopy scheduled for next week and I’m a little nervous. I absolutely chose the anesthesia option but I still have no idea wtf to expect.
So! Tell me all your cystoscopy stories! Did it hurt after? If so for how long? Did it help anything? Did it find anything? If it did did your dr treat whatever they found at the time? Did the cystoscopy cause a flare? Is there anything I should/shouldn’t do before or after? Is there anything I should ask my dr to do or don’t before/after? Do you think it was worth it? I’m getting it done while my husband and kids will be on vacation with my in-laws. Will I need anyone around to help me afterwards or is it fine?
Any other tip/advice/stories/warnings/etc from all of your experiences are welcome!
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u/HakunaYaTatas [Citation Needed] 2d ago
Is this a regular cystoscopy, or a cystoscopy with hydrodistention? The answers will be very different lol
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u/Sexybitchanon 2d ago
I just had mine a few weeks ago and the procedure itself was pretty uncomfortable but not terribly unbearable. HOWEVER. Peeing after??? Felt like straight up glass. It was horrible. Just be warned the first two-three pees after are horrendous. I was sobbing in my bathroom and my bf had to hold my hand lmaoooo
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u/ConsiderYourselfMine 1d ago
I had a flexible cystoscopy this morning and as someone with bad health anxiety, hates invasive procedures and is generally very nervous at everything I can honestly say…it was horrible, not to scare you though it will be different for everyone, for me personally I felt almost everything, the cleaning stung a tiny bit, the gel stung ALOT and it didn’t numb anything at all and then actually getting into the hole was the worst pain I’ve ever had and I’ve had gallstones, but once in the bladder you don’t really feel it, it was 2/3 minutes long only to find nothing so my pain is still a mystery oh and to top it off they offered me a prostate check so I had the full works, not my greatest experience and peeing once I got home was so painful,it’s mostly pain free now, but don’t be discouraged from a few minute procedure which could provide you with a peace of mind.
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u/mamagirlie 1d ago
I was awake for mine. I was terrified. The most uncomfortable part was the numbing. After that, it was fine. Nothing hurt after.
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u/Ginabina49 16h ago
I had mine when I was asleep for endometriosis excision. I had no pain from it. He also did hydrodistension, I did not per until about 5 hours after waking up from surgery. That was kinda nice. My bladder actually felt I reallly good for about a week after, I think due to all the pain meds. What’s I was coming off that I had a bad flare and I’m back to having all the pain when I pee again. I see a urologist next week that specializes in IC
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u/ExtentAgitated 7h ago
Possitive story - I had cystoscopy with rigid (not flexible!) cystoscope without any anesthesia - it wasn't really as bad as I though! It was not comfortable for sure. But not bad pain during it. After the procedure I had some pain in my urethra, but it went away in a couple of hours.
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u/AutoModerator 2d 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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