Bleeding from urethra…not bladder or ... - Advanced Prostate...

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Bleeding from urethra…not bladder or kidney

greatjohn profile image

Has anyone had an issue with the scar tissue or whatever the issue is inside my urethra starting to bleed? Everything has been fine with my urinary tract for over two years when I had a little blockage from one of the scar tissues. Now this past week I started bleeding a little spurts of blood they become clear after I start paying well so I figured it was in the urethra not deeper. The problem I had last Wednesday was some of the blood call coagulated in my urethra and I couldn’t P. So I had to go to the emergency room and they catheterized me. They kept me overnight after doing bloodwork I said my platelets and hemoglobin were low. So I got transfusion for those. The Urine going through my body into the bag was all clear. They determined my bleeding was in the urethra. After 24 hours with it in they took it out I Peed a little and a little bit of blood popped out and then it went clear and everything was fine and I left the hospital I was doing OK. It started back again. Now the clots seem even larger, but I’m able to pay them through but with a push and then there’s blood and it’s clear again. Has anyone had this kind of experience? I’m waiting trying to get a hold of my urologist for an emergency appointment but he is not responding to my doctor who’s trying to get this done. I may be end up Back in the emergency room again tomorrow. No photo because I wasn’t sure if it was OK to post a picture of the blood that came out in my toilet. John

59 Replies

No experience just hoping this passes soon you've suffered enough.

It sounds like "radiation cystitis." My husband has had it now going on 2 yrs. Couple ER visits, cystoscopy, something else, then increase size of catheter & had to be in 24/7 catheter for 3 months. Some incontinence, Depends, now with Kegels getting under bladder under control. But he self catheterizes 1-2 times/day. Yes, it is scar tissue from the radiation that can start sloughing off years after the RT. See you uro ASAP.

greatjohn profile image
greatjohn in reply to Lyubov

THANKS....I'm going to start screaming tomorrow if he doesn't get me scheduled!

greatjohn profile image
greatjohn in reply to greatjohn

but a question....I'm almost 8 years out from my Radiation? doesn't that seem like a long time for this to suddenly start?John

appx how long after radiation did your husband's issues start?

Lyubov profile image
Lyubov in reply to greatjohn

RT was 2-3/2016. It was quite gradual; just bit of pink in urine. Cystoscopy & some other surgical procedure (don't remember the name) found the scarred tissue, removed some of it. But things worsened. Apparently the radiation cystistis can occur anytime; many years after the RT, even. So sorry this has befallen you! All best wishes to get it resolved quickly!

greatjohn profile image
greatjohn in reply to Lyubov

From what I have been able to see, perhaps I am lucky and it is all in my urethra. When I’m catheterized my urine is completely clear. Thanks so much for your help figuring out what this is called. Another day on the journey. This one’s been a tough one, but hoping for clear skies an easy paths tomorrow. All the best,John

Lyubov profile image
Lyubov in reply to greatjohn

Sounds promising!

dagreer profile image
dagreer in reply to greatjohn

I have had that from the urethra entrance to the bladder and inside the bladder. Have you been eating anything different? Lifting weights? Constipated? Mine would kick off when eating baby aspirin or advil with a lot of fish oil and other blood thinning herbs and then lift weights or push a lot when constipated. The urologist cauterized the trouble spots. You want to limit catheters as much as realistically possible - eventually that will cause incontinence.

Lulu700 profile image
Lulu700 in reply to greatjohn

IMO , maybe the recent treatment did something ?

WSOPeddie profile image
WSOPeddie in reply to Lyubov

I'm sorry that your husband has to deal with this. I was directed towards radiation treatments but chose a different option. I hope radiation isn't in my future.

As if you haven't had enough problems... Best of luck with this Great John.

I have had off and on issues with blood in urine. After a few tests it was determined that it was cysts bursting in the kidney. Told not serious. Yours sounds different though

greatjohn profile image
greatjohn in reply to mrscruffy

when I was catheterized...the urine was crystal clear from bladder...so the blood is apparently coming from the urethra only.

WSOPeddie profile image
WSOPeddie in reply to greatjohn

They push the catheter into your bladder. Could the bleeding be coming from your prostate? You mentioned radiation treatment so can I assume that you still have your prostate? I hope you get treated soon and get a resolution.

Sorry no info from me. Just thanking you for not posting pics. After you go out for a hot fudge sundae, post that pic. Hope this resolves quickly.

TomTom1111 profile image
TomTom1111 in reply to GoBucks

GO PENN STATE!!!!

GoBucks profile image
GoBucks in reply to TomTom1111

LOL.

Definitely SCREAM if needed. He should see you ASAP! Very best wishes!

greatjohn profile image
greatjohn in reply to Lyubov

Using some of the information I got above I have found out what I have is called radiation urethritis(90% )sure. After researching it, it seems a lot can be done by just drinking lots of fluids avoiding coffee and tea and alcohol and spicy foods. There are also some medications to help. It’s not as bad as radiation cystitis Which often affects the bladder or kidneys. I’m feeling better already!

bean1008 profile image
bean1008 in reply to greatjohn

I self diagnose all the time! 😉 I’m sure you’re right but I know you’ll talk to your doctor. ❤️

greatjohn profile image
greatjohn in reply to bean1008

For sure 🥳

treedown profile image
treedown in reply to greatjohn

No coffee, tea, alcohol or spicy foods? Cutting those out of my day would be tough. Hope you get this resolved quick. Like Shooter said, as if you haven't had enough lately.

Lyubov profile image
Lyubov in reply to greatjohn

Wonderful! So happy for you. The radiation cystitis is far worse. I would think your issue would definitely be more manageable.!!

🥰

I'm so sorry! That's SO frustrating when your doctor doesn't respond. I hope that someone can get to the bottom of this!

Oh shit brother! Dam , I’m wincing all the way . I Hate to see my own blood. Thanks for NOT posting “that” pic . Many of of us have seen this already . The doc has to fix this . ASAP .. Hang in there ! ❤️

Oh no. Hope they can get this stopped for you.

John, I had blood in my urine three years ago - two years after radiation to the pelvis - a couple of small blood vessels just inside the bladder neck had come to the surface and would periodically release a small amount of blood. It was complicated by radiation damage to the urethra that resulted in a stricture, or narrowing of the tube. Urology offered urethroplasty in interventional radiology as a solution. My solution for both was pushing lots of clear liquids and peeing frequently (not an easy task, I admit). I don't want to jinx myself, but the blood stopped appearing in my urine after a couple months and I never had an obstruction that required catheterization.

-Tony

greatjohn profile image
greatjohn in reply to TonyS58

Thanks Tony. After finding out what this is and that it’s somewhat common after radiation even after almost 8 years, I feel pretty good about doing lots of liquids and cutting out the caffeine and praying for a solution to come. Thanks.

I had same similar situation. IMRT radiation fall winter 2005. Then urethral stricture started occuring big time in 2015-2016. Yeh 10+ yrs after Rad. Plus i gave to self cath since 2005 anyway. Combine self cath ++ stricture = blood in urine.Had to have a urethoplasty surgery March 2017. Successful yes. No more blood nor more pain.

Ask me about more info on Urethroplasty procedure message me. Be glad to help you!

Doug

greatjohn profile image
greatjohn in reply to depotdoug

Thanks so much for your input. Since mine is just in the urethra, I’m going to pray that lots of fluids does the trick. But I will be seeing the doctor to confirm with him. And possibly to have them go up there with a camera And make sure there’s nothing else that’s a problem.

depotdoug profile image
depotdoug in reply to greatjohn

Mine urethra stricture, too was in my Urethra. Like mid/lower portion. One or more of my IMRT zaps did the burning then scar tissue some 10yrs later. Necessary Urehtraplasty surgery yeh.

I’ve been blood and UTI free ever since March 17,2017. Yeh surgery on St Patricks day @ IU Methodist hospital Indianapolis.

And i still have to self-cath 5-6 times per day. Self cath and PCa are not even related.

I’ve got a neurogenic bladder too. Not fun but self cath works.

Doug

Hello There many reasons for bleeding the best way to check up with a specialist to see the problem as soon as possible.

greatjohn profile image
greatjohn in reply to NOCanceros

I am trying my best to see a urologist

CAMPSOUPS profile image
CAMPSOUPS in reply to greatjohn

That's what's been on my mind. I hope you get in soon. Am I correct...no pain? I hope not as it might make this a little easier to bear as you wait to be seen.

greatjohn profile image
greatjohn in reply to CAMPSOUPS

No pain..and the bleeding has actually cleared up this morning....been clear all day. My incredibly low platelets are not making this issue resolve fast...I'm sure. They were at 16,000 last week before a couple of bags of platelet transfusion. I'm trying to see him this week (the urologist)

CAMPSOUPS profile image
CAMPSOUPS in reply to greatjohn

Cool. Well you know what I mean. Glad its better today.

The stuff ROs don't mention in the appointments prior to treatments.

Your having a tough year..hopefully this issue gets resolve and you chemo treatments knock the pca back down.

Best Wishes.

greatjohn profile image
greatjohn in reply to TomTom1111

Thanks Tom! The path has been a little rough right now, but I’m looking for a wonderful open space with lots of vistas of waterfalls to be forthcoming.(on the journey)

Hopefully this gets resolved soon, keeping you in my thoughts and yes SCREAM if you need to, to get the attention that achieves the resolution you require.

No one’s ever died from being screamed at, but they often learn to get their ass in gear more quickly than they used to 🤣

Hugh

greatjohn profile image
greatjohn in reply to Aodh

Thanks Hugh…All the best to you as well! I feel better just knowing what some of the people above have written , and that I’m not alone.

So sorry you are enduring this. You will need a cysto/urethroscopy to see where this is coming from.

greatjohn profile image
greatjohn in reply to dadzone43

Yes, I’m trying to get a urologist to get me in. Thank you so much. All the best.

That's a tough issue to confront. I've dealt with blood in urine for a bit while recovering from HIFU surgery. It is scary. I hope you find relief soon.

Best way to get the doctor's office personnel's attention is to ask to see a pee pee doctor...........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 09/21/202` 6:33 PM DST

I had one episode exactly like you mention. In addition I have burning when I pee and this has been going on for 6-7 months. I have been taking some alkalyser and it seems to reduce the burning. I think it is the side effect of RT.

greatjohn profile image
greatjohn in reply to binati

Yes indeed 🥰

Iam 7 years out from radiation and still have occasional blockages peeing of clots of congeled blood and possibly tissue and some time gross blood. No rhyme or reason that i can determine.

Currently I can not pee at night and since my bladder is so thick walled my capacity is bout 250 ml I have to get up three times a night and usually have to self cath.

For a while i was not able to get the cath past my bladder neck, could get it pst the external sphincter but it stopped at the bladder neck. I applied hot packs of castor oil externally for about a week and have since been able to pass the bladder neck quite easily.

The current situation is odd like all of them have been. I can pee fairly normally during the day (but have urgency at the 250 ml fill) but at night it is almost impossible. I have tried anti inflammatory pills and patches and it seems to help a little. Iwas getting frequent UTIs but am now on methenamine hippurate which is a sort of prophylactic "antibiotic" Have not had serious UTIs since but pee is rearely clear and dip test shows both RBC and leucocytes as well other indicators of a UTI although i do not seem to have them. Catheterizing can cause these indicators to ride.

I can now get even straight and fairly large caths in with little resistance but for a while the ony ones that would work were tieman tipped types.

I live very remotely and the local hospital can not be trusted to insert a catheter, long story. So it is great that I can reliably get a cath in but i certainly would prefer to not have to get up three times a night.

I am going to have my balls hacked off very soon and maybe the urologist can make soem sense out of this. Might ask for a cystoscopy when I am out having the ball hacked off.

greatjohn profile image
greatjohn in reply to spencoid2

Spence? This sounds like a bit of a nightmare to go through every evening. I had my balls removed and I’ll just let you know that was not a problem at all. I haven’t missed him at all I have been a lot easier than going in for shots. Good luck with the blockages and I hope the cystoscopy will help. That is what I was hoping to get from my urologist. The last two days have suddenly just cleared upAnd I’ve had no problem at all. My blood issues might be because my platelets are so low right now. They just were checked and are 13k. I’m thinking if they can get back up a little higher that will fix my bleeding problem. All the best! John

John, two years after RP, out of no where, started peeing blood and even some tissue. Very scary. Uro did a Cystoscopy and found some scar tissue where urethra connects to bladder...seems they sometimes have to make an incision there during RP. Anyway, told it should clear up and it did for about a month. Came back even worse. Another Cystoscopy revealed a tumor in that same location. Couple of weeks later did another Cystoscopy (asleep this time) and he surgically removed the tumor followed by 33 rounds of radiation. Have been blood in urine free for about a year. But it was so traumatic I can hardly look when I pee anymore!

greatjohn profile image
greatjohn in reply to Ron53

So many people have come forward with similar stories. It sounds like radiation is just a wonderful thing to have! Not! If I had known what I know today I would’ve had surgery for removal. It’s a shame we can’t see the future. My bleeding has stopped and I just got my most recent platelet counts and I’m down to 13,000. Quite a bit lower than 150 to 250,000… I’m assuming my bleeding is being sponsored by these low platelets. For the last two days however I have again been paying completely clear with no clotting or blood. I am drinking lots of fluids to keep it flushing, but every time I go to the bathroom I have a panic attack! Not an easy journey. Best of luck to you. John

spencoid2 profile image
spencoid2 in reply to greatjohn

since i was Gleason 9 radiation was the only reasonable alternative. i am pretty sure that the difficulty getting a cath in was due to scar tissue at bladder neck because that is exactly where the cath stopped. now after my miracle castor oil cure i can get a cath in any time which is a great relief living so far from competent medical care. i staarted being able to pee at night which is much better than cathing three times in the night. just started working again last night hope it continues.

greatjohn profile image
greatjohn in reply to spencoid2

Explain the Castro oil thing when you have a chance. I’m very curious. It sounds like something my mother would’ve used as an old southern remedy 🥰

spencoid2 profile image
spencoid2 in reply to greatjohn

i had a stricture at my bladder neck probably scar tissue from radiation. i eventually found a catheter that with difficulty could get through but it was difficult and some times impossible. castor oil is known for its ability to soften scar tissue but the magic property of being able to go through the skin and find the tissue that needed fixing sounded like BS to me. however it was recommended twice and the second time i decided to try it knowing that it could not work. the procedure is to saturate a flannel pad with castor oil and apply it to the skin near where the problem is. keep it warm for a half hour or hour if you can stand it. cover the flannel with plastic wrap then a towel to moderate the heat from the heating pad and then the heating pad. i did it for a week and gradually it became easier and easier to insert the catheter. now i can even use the catheters (with ease) that would absolutely not go in before. of course it could all be placebo and my relaxing more but i was sure it would not work and just did it so i could say i did. a friend has been applying castor oil to some old and very intense scars from a motorcycle accident. it has softened them considerably.

so listen to your mother.

greatjohn profile image
greatjohn in reply to spencoid2

I have found she was wiser than most about many things. Her other cure all was Epson salts.🥰

spencoid2 profile image
spencoid2 in reply to greatjohn

another amazing cure. Epsom baths can draw all sorts of toxins from your body, relieve muscle aches and probably a million other things all of which are unproven and which are largely attributed to placebo effect.

You may want the urology nurse to set you up to have a straight cath and instruction in use (no balloon and not left in) to relieve any blockage from clots if and when needed. Save trips to the ER. Oh the indignities you endure. 💕

greatjohn profile image
greatjohn in reply to MateoBeach

this is EXACTLY what I want them to do! Thanks & Hugs! ! ! as I say "it ain't easy being pretty"....LOL

Checking in to see how you are...🕊️🙏❤️🕯️

greatjohn profile image
greatjohn in reply to siouxbee19

Since starting drinking lots of grape and cranberry juice, I have gotten rid of the blood and the clots. I am also doing a compress along my penis and lower stomach with castor oil (recommended by someone on here)…. It feels good to pee freely and to not have blood. I do have an appointment with the urologist for a cystoscopy on Friday. On a kind of downer note my platelets were down to 6000 yesterday and I had two bags of flightless transfused. I have a zoom meeting with my oncologist today. I think she is planning for me to do more chemo in spite of what it’s doing to my blood, so we are going to have a heated discussion. I can’t see myself doing it with my blood level so bad. My hemoglobin was down to a little under eight.

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