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Posted 7/13/2007 1:01 PM (GMT 0)
I had to go to the ER Saturday night. I had a very large amount of blood in my urine. Did all kinds of tests, nothing showed. Did CT scan...no stones.....no UTI....no type of infection at all. Has anyone else had this problem???? I am really scared. I have an appt. with a Urologist the 17th. And my Rhuemy said that the Plaquenil would NOT cause this...........SOMEONE PLEASE HELP!!!!!  confused
Posted 7/13/2007 2:31 PM (GMT 0)
deevee, I don't blame you for being scared about this. I have no idea what would be causing this but someone needs to get to the bottom of this. I'm glad you are seeing a urologist. Do you know if the ER ran any bloodwork to check on your kidneys? That would be my other concern. I hope someone else will be along who might know more about this than I do. Hang in there and don't be afraid to see your doc or go back to the ER if the blood in your urine gets worse. Take care and kep us posted on what is going on.
Posted 7/14/2007 2:55 AM (GMT 0)
deevee-
Don't get scared yet. I often get blood in my urine and blood on wiping. Its from benign polyps in my urethra, again, another ai like thing that is a real nuisance. I also have chronic bladder pain from something called trigonitis, where the floor of my bladder is infamed and makes me have to go all the time and feel like I haven't emptied it all the way. The best thing is to see a urologist who can look in your bladder right at your visit and tell you exactly what is wrong. Hopefully, it is just polyps. Also, if he doesn't go ahead and order it, ask for a CT or other scan of the kidneys just to make sure there is no involvement or damage. I was really really hurting, like ready to give up, and once I found out what it is, I'm in remission from it now, it will probably come back again, but there is no real cure in my case, except to avoid artificial sweeteners (splenda seems ok for me) and acidic juices, including cranberry, until things heal up. There is another condition you need them to check for at the same time, Interstitial Cystitis. It is an autoimmune attack of the bladder. My docs don't think I have it but aren't sure, they have to test for it when I have it bad. Cellcept is being investigated as a treatment for IC. I hope this helps put you a little more at ease. I can have quite a bit of blood from those polyps and it is crewwpy and scary and painful. Also, if it is something like this, a bladder condition, ask for a script for Prosed, it is stronger than AZO, doesn't stain as much and works better. Take care and let me know if you have any questions. I hope this is all it is.
Posted 7/17/2007 7:43 PM (GMT 0)
Well, I went to the Urologist today about the blood in my urine. They did another urine tests and I still have some blood in it but NO INFECTION. This just really has me scared. He is gonna to do a procedure called Cystoscopy. Where they go in and take a closer look at the urinary tract. I have no stones, my kidney function is normal, everything else is good.....no other symptoms. If anyone else has ever had this before...please......tell me whats going on. Thanks for listening.
Posted 7/17/2007 8:10 PM (GMT 0)
deevee, I don't blame you for being scared because I always get scared when anything new pops up. I've never had blood in my urine so I can't help with that, but it does sound like you have a good urologist who's not going to sit around and see what else happens. When is your cystoscopy scheduled? Hopefully you won't have to wait too long.

I haven't seen you here before so I must have been gone when you first joined. I want to add my welcome to the forum and hope you find this wonderful family of friends as helpful as I do.

Hang in there and please let us know what you find out from the cystoscopy.
Posted 7/17/2007 8:27 PM (GMT 0)
Hi deevee,
What did the docs say when you asked about the blood? Did they have any ideas where it was coming from? I had the cystoscope twice in three weeks and they dilated my urethra, which amounted to them ripping it open wider! That cystoscope hurts. It wasn't until I changed urologists to these guys with PHDs that I actually got some help. All of them where men and didn't seem to understand the pain I was in. I had no infection, but the second guys did tell me that the floor of my bladder was inflamed, causing the UT infection feeling. I would consider a second opinion, most insurance covers that, and try to either find a female doctor or one that is really "into" his field, like the phD guys I saw and will do more investigation. There are conditions where you can have chronic bladder pain and I know how bad you are suffering. Also, talking with my Primary Care, she understood the pain and that I had some kind of chronic condition and was very helpful with pain management and referrals, knowing how bad it hurts. Sometimes urologists don't bring up stuff like benign polyps or inflammation if the urine is negative. I hope you feel better soon and you may want to check these sites out. They are about interstitial cystitis but cover chronic bladder pain and other syndromes as well. In my case, eliminating diet soda sweetened with nutrasweet and cutting down on acidic juices, even cranberry juice, helped me.
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
http://www.ichelp.org/
Posted 7/20/2007 3:51 AM (GMT 0)
Well ladies, I had blood in my urine again late last night. Called the Urologist today and they had me come in and give another sample. I'm waiting for them to schedule my Cystoscopy. But the blood is gone now, well, to the human eye it is, but in the sample I gave them today. It is just so weird. It comes and goes like that. Well, I'll let you all know when I find out more. Thanks for listening to me ramble. Have a goodnight!!
Posted 7/20/2007 2:22 PM (GMT 0)
deevee,

Thats a relief to hear that its gone, I hope it was just a fluke and doesn't come back again. I sure hope the cystoscopy can give you some answers so you can get better. Your in my thoughts.

Take Care
Posted 7/20/2007 3:09 PM (GMT 0)
Deevee,

I hope your cystoscopy is scheduled soon so you don't have to keep waiting to find out what's going on. Like Des, I also hope it doesn't come back, but I do know you're worried about it. I'll be thinking about you.

Pat
Posted 7/23/2007 3:12 AM (GMT 0)

Hi...first visit to this site. I have sle ....also lupus nephritis (proliferative glomuero..something..something!!!) I have suffer off and on with large amounts of blood and spilling protien in urine. Mine is due to extensive kidney damage from lupus.

I've had several biopsies and have to do 24 hour urines every so often to calculate the amounts of blood and protien.

I've also had several joint replacements due to damage from prednisone use. Anyone else had to go through several replacements? I've had 8 hips and 5 wrist and so far have not anyone who has had to go through so many and am wondering .....what the heck happened with me and the prednisone!!!

I am now 48 and got my confirmed diagnosis at age 15.

thanks for reading this and any info would be good!!! eyes yeah

Posted 7/23/2007 9:09 AM (GMT 0)
Wow, gypsygal, how much prednisone do you take, and for how long. I can't believe the problems you've had with your joints. Makes me feel ashamed for complaining about my joints hurting. That's nothing compared to what you've gone through.

Welcome to the forum! I'm glad you're here and think you'll find this a great place to join a group of friends who understand your disease and what you're going through. We're here for you so come often and let us know how you're doing.

Take care
Posted 7/23/2007 2:50 PM (GMT 0)
Hey gypsygal, I'm new here too, but welcome. Yes, I hate complaining now that I heard what you had to say. Seems like my pains arent nothing. Sorry to hear about all your aches and stuff. I had a signi***ant(sp) about of blood in my urine. You couldnt even see through it thats how dark it was. Still dont know whats causing it yet. Have to have a cystoscopy done. Hope everything goes well for you and again welcome.

Posted 7/23/2007 9:15 PM (GMT 0)
Hi ladies....thanks for reading my post!!!  Right now I'm on a low 5 mg a day. I always  have to stay on between 5 and 10 mg. a day cause I tend to flare with anything less.

When I was first diagnosed, I was put on 80mg a day. Had to stay on that for awhile then gradually decrease.

Also was given plaquenel (had to come off after 6 mo.) and imuran. When I flare..they usually have to jack it up to 60 to 80 mg. all over again till it quiets down.So I've been on high doses off and on over the years.

 

The lupus tore my kidneys up bad from the get go!!! And by the time I was 17, I developed aseptic necrosis of both hips. So , that was the beginning of hip after hip plus the carpel lunate in wrist fell apart!!!

In my early 30's my doc weened me off steroids because of all this bone damage and I was in a good remission.I did ok for about 18 mo. but then here it came...big time flare.

So in short, we have come to realize I will always have to take at least low dose prednisone in spite of what its done to my bones..because I flare if the dose is too low.

Last urine I had I was spilling 4+ grams of protien and blood in urine. I go back to doc on 30th.

 

Anyway...my joints and kidneys have given me the most problems and  the pain I have daily in joints can grate on my nerves!!! nono devil

I've always wondered what happened with me and having to have all these joint replacements???

Buy hey...it could be worse!!! :-) redface tongue   Thanks all for your caring words and kindness!!!!

Posted 2/21/2008 3:41 AM (GMT 0)
Hi deevee67,
I have just joined this forum but notice that there have been no postings from you since June 2007. I was hoping that I found an answer to my own problems. I would really like to hear from you if you are still on the forum.
I have very much the same symptoms. I have had ultrasounds done of my kidney and bladder but they did not show anything. Every time I get blood in my urine I also have acute pain in the urethra and bladder area. The doctors put me on antibiotics for 12 months with no effect except that they stop the blood for a while, while I'm on them. They thought I was just having UTI's until I made them see that I have constant pain all the time. It just becomes acute when I start bleeding and I go into shock. Even though I told them, they kept thinking I was just having the burning sensation when passing urine. Why don't doctors listen!!! I tell them one thing and they hear something completely different. Probably because its easier for them to just say it is UTI and send me home with antibiotics.
Anyway, I am getting to the stage where I am desperate for answers. I have considered Trigonitis from what I have researched on the internet. It seems to be one where antibiotics don't work. And they definitely are not working.
Would love to hear how you went with the urologist,
Angelina.
Posted 11/17/2011 2:20 AM (GMT 0)
Hi DeeVee67...wondering how things turned out for you with the blood in the urine...I am having a similar concern
SIS
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