Cystoscopy Qualms and Questions

[HuckFinn]

Hi,

The weirdest thing happened a few nights ago: when I started to pee, a small amount of bright red blood immediately spurted out, followed by normal yellow-colored urine. Except for that one strange incident, all my subsequent pees have looked perfectly normal.

Freaked out, I underwent a urinalysis at my doctor's office about 14 hours later to check for microscopic blood in the urine. The test came back totally negative for blood in my urine. Puzzling. I'm still waiting to hear from my doctor about what further steps I should take. No doubt, additional urinalysis is in my future. But urologists usually want to do a cystoscopy (a camera mounted onto a long tube that's shoved up your penis and into the bladder) when blood is visible in the urine and the patient is older than 50. Typically this procedure is done with the patient awake. Yikes! My concern is that the cystoscopy pain might worsen my chronic pelvic pain, particularly the once-in-a-while referral pain I've felt for the last 15 years in my penis.

So here's my question for anyone who's undergone cystoscopy: how painful is cystosocopy? If you had to do it again, would you insist on sedation with propofol or just tough out the cystoscopy with a topical numbing jelly, which is how it's usually done? Did cystoscopy worsen your pelvic pain? Would imaging alone accomplish the same thing as cystoscopy? Any other cystoscopy-related advice?

Thanks!

[Redub]

Once the scope went through the prostate are it was painful but it was short and manageable. Peeing afterwards was painful for a few hours but again, nothing crazy. If I had to do it again I would just have them use the topical.

By the next day I was 100% back to normal(which included CPPS symptoms) but not better or worse.

[webslave]

Flexible cystoscope is not too bad, blood probably not from bladder but from prostate (burst capillary, not significant).

[HuckFinn]

Yes, that makes sense, Webslave, given the fact that the bright red blood came out first, followed by normal-colored urine. Bright red blood followed by normal urine suggests the source of bleeding is distal to the bladder. A urinalysis performed 13 hours later found no blood in urine at all. I was initially thinking it might be a burst blood vessel in the urethra, but the prostate sounds like a likely candidate. I wonder if a cystoscopy is even worth the trouble. (I'm groping for any excuse to avoid it, obviously.)

[webslave]

Hmm, tricky one because of your age ... I'd probably avoid it unless 1) flexible instrument used and 2) covered by insurance.

What's your PSA?

[HuckFinn]

My PSA is 2.64 (normal), and it was measured the day after I saw blood in urine.

[webslave]

While not concerningly high, your PSA is also not super low (I am around your age and my PSA is under 0.5). If the blood recurs, I'd investigate.

More on PSA here viewtopic.php?f=36&t=3926

[HuckFinn]

That sounds like an excellent approach. And yes, looking at that PSA link, I see what you mean about my PSA score being not low. My father had aggressive prostate cancer in his 70s, so thanks for making me aware of that information.

[HuckFinn]

Here's the second and final installment of my little adventure with visible blood in my urine (also known as gross or macro hematuria). To recap, in March 2020, for the first time ever, blood came out when I peed. I don't mean that my urine was tinted a charmingly pink-lemonade hue or perhaps an alluring rosé. It was worse than that: the first several drops were horror-movie scarlet, as if somebody were slaughtering a pig in my bladder.

The next day, I had a urinalysis, which came back normal. My primary-care provider said to come back in three months for a follow-up urinalysis. In retrospect, based on what I now know, she should have sent me directly to a urologist. This all happened just as the pandemic was heating up, which might be why she didn't refer me. (Then again, primary-care providers often treat hematuria too casually, according to a study I saw.) After that bloody pee, my subsequent urinations looked perfectly normal. For that reason, I held out hope that the bloody-urine incident was a one-time-only anomaly, and I also hoped that I could avoid the dreaded cystoscope.

It wasn't, and I didn't. Almost exactly two months later, it happened again. This time, I saw bright-red blood AND blood clots. Naturally, I googled my symptoms and had the shock of my life. Here's what I learned: at my age, there's a 12- to 20-percent chance that the cause of gross hematuria is bladder cancer. (The chances drop to 2 to 4 percent for people my age if its microhematuria, meaning that the blood is detectable only through a lab test.) Needless to say, I started freaking.

If you read any of my earlier messages about this, you know that I was extremely reluctant to undergo a cystoscope, for fear that it would trigger a flare-up of chronic pelvic pain syndrome. But after two incidents of blood in my urine, there was no avoiding it. In fact, I was all but banging on the urologist's door and begging to be turned into a human shish-kebab.

If you're not familiar with what a cystoscope is, a urologist basically shoves a two-foot-long TV-antenna-looking probe with a camera on it up your pee-hole all the way up to the bladder to see if there are any tumors in there. (A CT scan alone won't get the job done, unfortunately, because the CT scan can miss certain kinds of bladder tumors because of the hollow nature of the organ.) Oh, and you're awake when it happens. Because of chronic pelvic pain syndrome, I've had more than my share of suffering in that part of my anatomy. Consequently, I was as worried about the cystoscope itself as I was about the diagnosis that it might yield.

To root out the cause of the gross hematuria, I've now undergone two urinalyses, an ultrasound, a CT scan, and yes—a cystoscope. Surprisingly, a lot of times, doctors can't find the cause of hematuria. The best they can do is rule out big threats. For me, the final verdict was as follows: no cancer.

So where's the blood coming from? Webslave correctly called it in March: a burst prostate capillary (or rupture from prostate inflammation) apparently released blood into the urine. At least that's my urologist's best guess. Bottomline: no big deal. All he knows for sure is that there's no cancer in my urinary tract, kidneys, or bladder. Come back in a year to check the prostate again, he said. And no need for a cysto or CT scan next time, he said. Thank God for that.

Having said all that, I want to pass along three key lessons I learned from all this:

Lesson #1. If you see blood in your urine, see a urologist ASAP. (In my opinion, a primary-care provider isn't sufficient.) Also, accept the fact that you'll probably need to undergo a CT scan and cystoscope to rule out cancer, especially if you're over 40. More than likely, the cause isn't cancer. But it could be, so don't dismiss it. If it's cancer and it's caught early, you stand a very good chance of keeping your bladder and living a long, normal life. If it turns out to be cancer and is allowed to progress, you could lose your bladder and end up peeing in a bag. If caught too late, it can metastasize and potentially kill you. So no fucking around with blood in the urine, folks. Typically, blood in the urine is the first and only symptom of bladder cancer. If you see any blood in your pee, get to a urologist. Though you don't hear much in the news about bladder cancer, it's roughly the sixth most common type of cancer. The main risk factor for bladder cancer is tobacco use (I'm a non-smoker), but non-smokers can get bladder cancer, too. Other risk factors include age (the older you are, the higher the risk), male, and white. But younger people, women, and other ethnic groups can get it, too.

Lesson #2. If you need to undergo a cystoscopy for hematuria or any other reason, there are ways to make the procedure much more tolerable. Prior to undergoing the procedure myself, I asked for tips from people on a bladder-cancer forum, and here's what they told me to do (before you do any of these things, check with your doctor. I'm no doctor.) Their advice was invaluable:
1. Take a benzo and Tylenol about an hour or so before the procedure.
2. Before the urologist rams home the cystoscope, a nurse should squirt lidocaine—a numbing agent—up your pee hole a few inches. That's typically done, but if not, request it. The lidocaine insertion is unpleasant, but it's gotta be better than having a coat hanger go up your un-numbed penis.
3. Ask the doctor to administer nitrous oxide (aka, laughing gas), a gas that you inhale through a special mouthpiece. Dentists and obstetricians often use nitrous oxide on anxious patients these days, and some urologists keep it on hand, too. Nitrous oxide won't knock you out, but it'll make you spacey, mellow, and it has a muscle-relaxing effect. (Cystos are supposed to be more painful if you tense up. Hence the benzo and nitrous.) In my case, the nitrous oxide wasn't covered by insurance, so it cost me $100 out of pocket. Money well spent. The spacey feeling wears off immediately after the procedure when you stop breathing the gas.

Given my history of pelvic pain syndrome, I was extremely nervous about undergoing a cystoscope. I needn't have been. With that combination of analgesics, the cysto was utterly painless. I honestly couldn't feel the scope go in and advance to my bladder, and the doctor was done with the bladder inspection after only about a minute. The whole thing was over before I knew it. I spent the entire minute staring blissfully at a splotch on the ceiling, while spacing out on nitrous oxide. Ironically, the most unpleasant part of the whole experience was when the nurse squirted the numbing agent up my pee hole. And for about a day or two after the cysto, it's common to feel a burning sensation while urinating. I also got hit with some sporadically painful twinges in my penis even when I wasn't urinating.

Lesson #3. Chronic pelvic pain syndrome is a dastardly ailment, but having now spent some time cruising the bladder-cancer forums, all I can says is, folks, we got the easy one. My heart goes out to what those bladder-cancer folks have to go through—weekly cystos, chemo, radiation, radical surgery, potential death. By comparison, I'm almost thankful I "merely" have chronic pelvic pain syndrome. So if chronic pelvic pain syndrome ever gets you down, count your blessings. Things could be worse. Much, much worse.

Regards!

Admin comment: Good news! Another tip for cystos: deep stomach breathing (breathe with stomach, not chest). Doing this, I was able to undergo a cysto (during a kidney stone episode) without any drugs to help. The uro was amazed!