Scared. Gross hematuria, urethral stricture and bladder thickening

@chuck1026 Welcome to Mayo Clinic Connect. Thankfully cystoscopes have come a long way since you were a child, way less gruesome. I had one in 2006. My story is way different than yours but here it is. Had a pancreas transplant in 2005. It had a bladder hook up to monitor pancreas enzymes in the urine to watch for signs of rejection. Pancreas enzymes are similar to what is found in commercial drain cleaner products! My bladder did not like this! It caused cystitis and “gross hematuria” (large clots of blood like menstrual flow but coming from the bladder). Long story short I ended up having another surgery called an enteric conversion. My beloved transplanted pancreas was disconnected from the bladder and reattached somewhere to the colon that was better equipped to deal with the pancreas enzymes. I was later told at Mayo that this is how pancreas transplants should always be done. That bladder hook up is a thing of the past. So the good news for you is that the cystoscopy did not bother me in the slightest. I believe it was done with conscious sedation (like a colonoscopy). My hope and prayer for you is that your cystoscopy will go well with minimal discomfort. That your provider will be able to learn about & correct the things that are bothering you (the stricture, the thickening, the hematuria). Keep us posted?

Hi Cheryl. Yes the attempted cystoscopy was uncomfortable but the outcome lacked any gaining of knowledge. Hopefully the next one will be productive and also help me get past this mess. Oh... Almost forgot. Thanks for replying and yes I'll follow up. I'm hoping for more feedback on here in the meantime. My circumstances are kind of weird. Lots of things happening at once.

I don’t have any insight on this but I sure hope they figure out the problem and resolve it soon. I know it can be very distressing to wonder about causes. I hope you’ll get more feedback.

I appreciate your kind words. I don't know if anyone will chime in with anything to follow up on what I shared.. but I hope so. It's an interesting mix of things. They all are related.

Yes, it sounds like you have a history of issues with the bladder. Have you been in pain all this time?

I recall how upset I got once when a urine test I got at Urgent Care showed blood and something else. I got the results by email with instructions to follow up with my primary. I was terrified because I thought I had advanced kidney failure, which is a huge fear, since I have had type 1 diabetes for over 20 years. I cried and wondered how my life would change…..so, the next day I went to my primary and explained what happened. The PA there on a Sunday, was so compassionate. They took another urine test and it was completely normal. I broke down in tears. Ever since then all my tests are normal. I have no idea why that fluke occurred. I still feel anxious about my urine tests every time I get one now. My kidney blood labs have always been normal. Not sure if I’ll ever know what happened. Maybe, kidney stone….idk.

Not really in pain... The discomfort is more recent. Both my dad and his dad developed kidney stones and BPH mid life so those are no surprise... The stricture is harder to explain but I'm guessing it's been lurking too... Hiding behind the BPH... But the 3 together? I'm just guessing and not a doctor... So gonna find out.

You have quite the story to tell too. Some things aren't textbook and for me... I'm hoping this works out ok.

@chuck1026 Let me add my welcome to Mayo Clinic Connect. It sure can be frustrating as we try to figure out which condition is the most important, which came first, or could have caused one of the others. I will make the observation that "Dr. Google" is not your friend! Too many rabbit holes to go down, and lots of links to unfounded information.

Waiting for your upcoming tests is difficult and you know yourself best. Minimize your stress. Exercise moderately. Eat healthily for your situation. Trust your providers.
Ginger

Thank you Ginger. Dr. Google is certainly not my friend. Meanwhile I have just under a month to wait on the cystoscopy to begin to get some clarity on the situation. I appreciate you taking the time to read and write.

Chuck

@chuck1026 Connect is a very good place to share your worries and concerns. You never know when a bit of shared information might be exactly what you are looking for. I have only had 1 kidney stone, 2 cystoscopies and no problems with that. My husband has had bladder cancer for over 4 years and went through multiple treatments and procedures before finally having his bladder removed and a neobladder created. He has had lots of complications since then but is doing well. The point I want to share is that his initial cystoscopies were mentally and physically challenging, but at this point they are just routine for him. The prep nurse makes a big difference in how well the area is numbed prior to the procedure. The best doctors were those who took their time and didn't rush the procedure. Your stricture may require a smaller scope, but you are on your way to finding a diagnosis and that is what is important. Try to keep a good positive attitude and you will get through this and future procedures better every time. Good luck and keep us posted.

Thank you Sue. Yes I'm not sure what the future holds but something is definitely not right for me. Waiting is tough. With a few things on the list that can all cause The symptoms... I need to let the experts figure it out while I pray.....