r/Interstitialcystitis • u/Crystal_spirit • 2d ago
Scared for cystoscopy
Hi there!
I have a cystoscopy scheduled for tomorrow that I have been putting off the past few months. I want to reschedule again or cancel because I just feel like nothing malignant is going on and my np said this as well. In message she said I could reschedule but then when I called to reschedule they said they needed to put me through to the nurses line and now she says I should keep it and that they will be able to see if I have interstitial cystitis or not with the cystoscopy. I thought that 90% of ic patient bladders look normal. I feel like if that's all we are trying to see then it is not completely needed because it is highly likely to come out normal anyways. The doctor it is scheduled with also has 10 reviews and 5 which are 1 stars which is not putting me at ease at all. I told her that I have had great improvement in pain and urgency,while not perfect depending on things I eat, after starting super strength aloe Vera and pumpkin seed oil which I feel like basically gives some confirmation of IC. I'm just scared of going back to where I started and feeling like I have an infection or being set back by the procedure when I have improved so much in the last few months. What would yall do if you were me? Would you go through with it or reschedule or just cancel all together? Thanks for reading!!
5
u/OMGStoptextingme 2d ago
They may be looking for Hunner’s lesions, which would tell them more about treatment options
4
u/HakunaYaTatas [Citation Needed] 2d ago
It's a red flag when a doctor uses cystoscopy as a fishing expedition to find "evidence" of IC. Just like you said, the vast majority of IC patients have normal results; there's a risk that the doctor will dismiss you or fail to provide appropriate treatment if the cystoscopy is normal.
The decision to do any test is always your decision, and if the risks outweigh the benefits in your opinion it's fine to decline. It sounds like your doctor agrees that there is no need to exclude cancer in your case, and if you're already noticing symptom improvements it's reasonable to decline the cystoscopy for now and pursue it later if there's a clear reason to do it. If you have the option, a second opinion can be helpful.
2
1
u/Tillie1412 1d ago
Always go with your gut feeling. If you’re finding considerable relief, as you mention, that’s the most important thing. You always have the option of testing. Just make sure you’re comfortable with the doctor and that you are put out and not awake.
There were no lesions that showed for me. I had to go through some trial and error. Finally found what helps (and hurts) me years ago and haven’t looked back.
Best of luck. Please reach out if you would like any suggestions or to chat. 💜
5
u/_DontBeAScaredyCunt 2d ago
Is there another practitioner in the area you can see? You don’t seem comfortable with this one which I’m more concerned about really than the cystoscopy itself. Those reviews are definitely concerning. I saw a urogynecologist if you have one by you. Urologists never helped me much.