Strictures

Woke up with a lot of blood my first urination. I'm upset and scared because I've been searching the internet and came upon cystitis or bleeding cystitis and it can be quite bad.
Doctor said he can fit me in on the 17th at a branch hospital in Westchester. I said I'd prefer NYC because my wife might not be able to come get me but now I'm sure she can. I'm hoping he will see me then.
I just pray that I stay open until then. I don't want to have a ER doctor mess things up if I get retention.
I'm hoping my bladder is not the cause. If it is I'm hoping it's a milder cystitis.

Glen

This incontinence is new. I've had dribbling before but this was a lot of urine. Weird thing is I didn't feel it coming out.
I'm in the dumps again and feeling sorry for myself.
The not knowing what is going to happen is the bad part.
Surgery may fix this even if it's only for a while. Of course I'm hoping for a long term outcome.
My fear remains retention and of course I don't want to be incontinent.
All I can do is drink water and hope.

Glen

Hi Swan, it may not be as bad as you imagined.
Here is part of my report when I was bleeding everyday for like 10 days in a row before the Cysto with pediatric systoscope.

We identified a narrow white fibrotic stricture that spanned approximately 5 to 10 mm in length. It did easily accommodate our 7 French scope. Along the prostatic urethra we identified numerous telangiectasias and small calcifications as well as texture changes consistent with radiation.

It was those tiny blood vessels in the prostate that tried to regrow itself after my HDRBT and IMRT that caused the bleeding.
I hope your urologist can use pediatric to examine your condition and give you a peace of mind. My condition has stopped and I hope yours as well in the near future.

Akai

Akai did they treat the stricture?
The specialist is going to use the balloon dilation and possibly the new Optilume system. My stricture is occluding the urethra by possibly 50 percent so it has to be treated.
Because of my symptoms the specialist thinks it's severe.
Well I have to hold on another couple of weeks. I'm guessing that there will be at least some improvement.

Glen

Mine has not been treated yet, it’s been 4 years since DVIU. I explored Optilume but my reconstructive urologist has not done any, as I mentioned previously, I did exchange an email with a urologist in Austin, TX but no decision has been made.
I am in California and hoping to have the procedure done here, unfortunately, the two urologists that I deal with have had no experience in this.

I am trying to get my urologist to do another cystoscopy to assess my stricture (instead of other procedures) but so far no luck, he is too busy with other patients.

Good luck with yours and please keep us posted.
But the way, Optilume is not for long strictures, make sure yours is not longer than 2cm (I think.)

Akai I'm reading your post for a second time. I'm really really hoping that this blood is coming from the prostate, blood vessels etc. Why? Because my worrying mind is thinking about it's maybe hemorrhagic cystitis and other worse case issues.
Can't wait until the scope and dilation or whatever it is he will do. I imagine he'll just dilate but he did mention Optilume and maybe he'll decide to cut. I'll talk to him first of course.
Yep maybe it's gonna be okay.

Glen

Hi Swan, I think your urologist needs to know the condition of your stricture(s) before he will recommend what procedure should be taken.
There were two other tests that I went through when I was considering urethroplasty, one I had to pay out of pocket as the famous reconstructive urologist at UC Irvine did not take medicare, the whole procedure was about $1,500. This would show the location, the length, and also tested for how like incontinent would occur after the surgery. The other was covered by medicare.
Dilating is the least effective (according to what I read) and very short term, repeating it could cause more damage.
Of your stricture is longer than 2cm then Optilume is not recommend, per the manufacturer.
I am a bit surprised that the blood has not stopped, I hope the urologist will preform cystoscopy with the pediatric scope so he can see your bladder.
Keep us posted.

I'd add that because of the severity of the bleeding, the doctor wants to do something even if it's a temporary fix.
So naturally I'm worried because I don't know what he's going to find. Worst case it can be bladder cancer or hemmaraghic cystitis.
Spelling error I'm sure.
So it's no wonder I'm concerned and upset.

Glen

I'm traveling upstate now and took a naproxen pill. I figured it might lower inflammation.
I don't take them often which is a shame because they help my chronic pain. I'm on Xaralto so it's not a good idea due to bleeding issues.
Drinking water as usual and some blood and small clots but flow is good.
Because I sit to void I don't always know how strong the flow is so I'll stand from time to time.

Glen

Glen, please take a deep breath. I totally understand your concerns and you being in a place where your "hair is on fire" (thats how they described me when i first arrived here at HW in 2014.).

All the worry and stress is not going to help you.i believe It causes inflammation which just makes you sicker.. You are probably right you are probably spending too much time surfing the internet. I know thats hard to control also, but you should try.
You are being as proactive as possible. You cant do more. Try some breathing exercises or learn mindfulness. There are some good apps, including "Calm"

I'm sure you've heard the "Serenity Prayer"
"God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference"

Think about it. If you dont believe in God, then substitute "Glen"

I wish you peace, man. Put yourself in the hands of the doctors you trust. Things will work out.

Glen, get off the computer and keep yourself busy during the day. Today I built a bird house for our mourning doves that have picked our house to have their babies. There was no time to think about PC or the SEs of ADT.
I know you have physical ailments, but your mind is still working. Do some fiction reading. If you can draw or paint go to it. You may offer up a masterpiece. Walk as much as you can. Get your mind off your symptoms and stop counting down days until your next treatment. The time will go faster. Keep up whatever works the best to help with your urinary issues. Most important, start thinking positive that the doctor will do what is right to alleviate your issues. I feel your pain and we all here hope for the best for you.
Just trying to help and best wishes.
Jack

I am not familiar with online fishing in NY, how does that work?