Cystoscopy: My fears and anticipation vs. what actually happened

Photo of Stephanie Gish immediately after her cystoscopy

Do you ever find yourself loving Google, yet hating it at the same time? That was the case for me as I spent more and more time researching and looking up information during the two weeks leading up to my cystoscopy earlier this month. My last four urine tests all showed blood in the urine, which was actually part of the reason for my referral back to nephrology. And, although the hematuria is most likely due to IgA nephropathy, my doctors wanted to send me to urology just to make sure everything was good there, since–I later learned–all cases of repeated hematuria not caused by urinary tract infections should be referred to urology.

In much the same way that a colonoscopy allows a gastroenterologist to look at the inside of the colon using a scope, a cystoscopy allows a urologist to look at the inside of the bladder and urinary tract using a very small scope. While I’ve had many colonoscopies at this point, a cystoscopy was new territory for me and just thinking about it made me cringe! But, I like to understand completely all the different tests and procedures I undergo, so I turned to Google to try and find out more about the patient experience of a cystoscopy.

I found quite a few medical sites that explained exactly what the procedure is, but I wanted a patient perspective. I searched, but I didn’t come across much…and what I did find were usually reports of patients saying how miserable this procedure was for them. So, I gave up my Google search and figured that undergoing the test was the best thing for me and I just needed to not think about it–many people have been through far worse, so I shouldn’t be worried about a simple cystoscopy.

I’ll spare you the details because WebMD or MayoClinic.org can tell you exactly what it is and what happens in two seconds, but–as a quick recap–my cystoscopy was done in a special urology clinic testing room with topical anesthetic (like Lidocaine) and lasted about five minutes. The topical anesthetic allows the scope to be fed through the urethra and up to the bladder with minimal discomfort–I even got to watch the monitors and the images from the scope, much like you would watch an ultrasound.

In hindsight, I feel a little embarrassed at just how worked up and nervous I allowed myself to get over this procedure. There was only minimal discomfort, somewhat of a slight pinch when the topical anesthetic was being applied/injected into the urethra, and no other pain. I did focus on my breathing and concentrated on staying calm and relaxed. It was interesting to see inside my bladder on the monitors and the doctor explained everything he was looking for. While everything looked fine, there were visible signs of chronic inflammation…not a surprise, considering I do have an Inflammatory Bowel Disease.

Since the cystoscopy didn’t show anything concerning, I now have, as my urologist put it, “a five year warranty” on my bladder! Which just means that because nothing showed up on my cystoscopy this time, if there continues to be hematuria, another scope is recommended in five years.

Recovery was easy. Of course, I went into this fasted because I feel I do better in general with everything if I’m in a fasted state. So, I was about 26 hours into my fast when I had the procedure done. I wasn’t in any pain and was mostly just tired from getting myself so worked up over nothing when it was all said and done. For the next 24 hours I did have a slight burning sensation when urinating–which I was told to expect–but after that, I was right back to normal.

My Crohn’s journey has taken me down many winding paths and it seems like whenever I feel like I’m getting ahead or when I don’t expect it, there’s a curveball coming at me. It sounds strange to say it out loud (or write it down), but my colon has pretty much been the only constant thing on my mind for the past 16 years (I’m always thinking about things like, will there be any blood today? How do I feel? Can I go that long without needing a restroom? Will I be able to eat that?). But now, my colon will have company as my bladder and kidneys join it at the forefront of my thoughts.

I often find myself mulling over the same conundrum…I wonder how bad off my health would be if I wasn’t trying so hard to watch what I eat, improve my mindset, and live healthier overall. But, then I wonder how different things would be if I never stopped taking Humira when I started it 10 years ago. While I was trying to solve the mysteries of my gut all those years without medications, did I have unchecked inflammation that allowed my kidney function to decline and cause hematuria to be a recurring problem? It’s questions like this that I’ll never have the answer to–and doesn’t do me any good to dwell upon–so I simply remind myself that I’m doing the best I can with the information I have and these are the decisions I’ve made with my health that I’m comfortable with. I feel empowered knowing that I’m in control of my health, scared because I don’t have all the answers (and no one does; we really don’t even know what causes IBD and there is no cure), but also very lucky that I have access to top-notch care and a team of doctors who are looking out for my best interest and want me to be well.

Throughout this journey, I continue to learn and grow. I’m better at asking questions and discussing details with my doctors now, I weigh my options carefully, I have a team of doctors who I trust and rely upon, and I focus on trying to live in the present. I try to live my life with no regrets, whether it’s Crohn’s related, relationships, or chances we take, there’s no time for living in the past. So don’t obsess over the things you can’t control–whether it’s a countdown to a cystoscopy or wishing you didn’t have Crohn’s Disease–just find the good in each day and take life one day at a time when you need to…many more adventures lie ahead.

Cheers to good health and life!

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