Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Blood in urine

hi everyone, new to the group. I'm 30 years old and have known I had PKD for a long time. In the past five years I've had a kidney infection, multiple UTIs and one cyst infection that required hospitalization.


about 7 days ago I had severe pain in my kidney and stomach regions that went away after two days. Then starting Sunday I noticed that my urine had blood in it. The color is a really light brown. I thought it was a UTI at first so I was prescribed antibiotics but now I think it's actually a cyst rupture. No pain or fever right now but just seeing blood in urine.


how long will this last for? I hate seeing my urine like that and it gives me so much anxiety. Is it normal to see blood in urine for several days straight? I just want it to go away.

Replies

enigmaticloner
enigmaticloner

Hey, I've had blood in my urine before as well. First time it happened I was extremely concerned and scared. It was weird because I was at the local lab getting my blood taken and urine, so it happened when I was going in the cup. The urine came out dark red and I gave it to the person and they didn't say anything about it so was a bit confused about that. I talked to my doctor afterwards and he said it was probably a cyst rupture, like you it wasn't actually painful or anything, strangely enough though the day leading up to that incident I had a lot of pain in my side which might have been the cause I suppose.

The occasions it has happened to me it's only been for about 24 hours or so, never been longer than that from what I remember.
nyc10
nyc10

Thanks for your reply! Mines not super red just a tint but it's been about two days. From what I read on other posts it seems it's fairly common and a few days up to a week is standard to see the blood in urine. Just so scary seeing it and want it to go away!
Chewitt
Chewitt

I had a lot of blood in my urine a few years ago. It looked like red wine! I had bleeding into liver and kidney cysts, presumably with ruptures, following an episode of snow shovelling. I was in agony for weeks, but the blood in the urine lasted for about a week. I think the advice is usually to see a doctor if it persists much beyond that.
ILikeBacon
ILikeBacon

Hey nyc10. I've had blood in my urine maybe 15 times (with the normal duration of two or three days, and the longest being maybe just under five days.

I have had it both with and without pain. Once the pain was terrible - barely able to walk/sit correctly. Maybe three or four times with pretty decent but tolerable pain, and the rest of the time basically pain-free.

It often starts with my urine switching from normal to "dark tan", then pretty much the next time being very red. I've seen it all the way to bright, shocking red that is rather unsettling. I've also seen it more of a darker wine color. I've actually even passed "leafy" material which kind of looks like leaf tobacco if you know what that looks like. Clearly that was a cyst rupture.

I think I remember hearing that the bigger pain happens when a cyst ruptures outside the 'plumbing system', and sort of goes into your paritoneal cavity. Cysts rupturing "inside", going through the bladder - while alarming looking, are a bit less painful.

I definitely watch the public urination during these times. If you know the old "troughs" that men used at sporting events in the past --- yeah, not wanting to put on a freaky show for others.

I'll have lingering sessions if I'm trying to do too much physical work with bending/reaching.

Good luck - basically, I think you will get used to it. Hopefully you'll have the non-pain kind if it happens. Do let you Neph know if it's happening frequently or for lengthy periods of time.

Steve
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