I have been going through the same thing. Cat scans, surgery to look at the kidney and now a trip to the kidney doctor. I go today so if I get any news I will post it. It is very scary when you have something wrong but they don't know what.
I really need you guys. Last Saturday Iwent to empty my bladder and blood just poured out. My daughter and I went to the ER.and to my surprised I was diagnosed with polycystic kidney disease. The Dr informed me that this is a genetic disorder that is in my family. I was released from the hospital still bleeding when I urinate. There are cysts on my kidneys. I will be following up with a primary doctor. I was told that this disorder is associated with high blood pressure and type 2 diabetes. I will see when my doctor examines me. But hearing you guys story let's me know that I am not alone.
I have been peeing blood for 3 weeks now and have had several tests done and no body can figure out why i am bleeding from my left kidney .....I HURT SO BAD...and all the Dr can say is TAKE MORE pain pills..Am I gonna have to live on pain pills the rest of my life or can someone please tell me why I am bleeding and hurt so bad? Dont know where to go from here
I have been going through the same problems for months now. Ive had all the tests done. And they finally diagnosed me with loin pain humitura syndrome. Its a rare syndrome so not to many doctors and specialists know about it. But from what my doc has told me its on the rise. There is no explanation for why our kidneys bleed for no reason and why it causes pain, since there has been so little reasearch. I hope thus helps you guys you might bring it up to your doctor.
yes i have had this problem. i was in the hospital almost six weeks. it had happened previous but stopped and i was told not to have any more children.almost ten years later ,one week before another son was born,my right began to bleed.the year was 1979,i was 35 years old and the only drug that could stop the bleedin could kill me. the doctors tried other drugs even baking soda tablets. at times i was taking at least 52 pills.the medicine they finally gave me had only been given to one patient and she was almost three times my age.i will have to get my medical records to get the correct diagnosis and treatments.i did have surgery but only because months later i had test and the results were my kidney showing cancer cells.thank GOD when the doctors performed the surgery,they found i had a deformed kidney.i do not remember the correct terminology,but i will get my x-rays and medical records.
Since Dec 2012 I have been admitted.numerous times for septic kidney hematuria, etc, etc. the 1at Urologist dx me with a photocells.and needing my bladder repaired, gyn/ URO says no not the problem. Next dx has kink it structure in ureter. Big problem.with that is the stint was placed below the structure because of concern of tearing thru ureter. After several stint placements and.visits in hospital for blood in my urine that would change.from Kool aid red to vampire black red, never leaving stint in longer than 2 weeks I basically was told to take.an.antibiotic at bedtime and.follow up in 6.months I laughed at the scheduler cuz here we are 7 months in and was feeling like I was.goung septic.so I found a 2.opinion. He s,defiled right away and placed a balloon to open up ureter and place stint where it needed to be to open up stricture. BUT bleeding should have stopped, and again I was in we and then.admitted. But now a pulmonary.embolism.was.spotted on right lower lung so this is adding to my bleed. Now my current.Urologist has one last trick up his sleeve before we remove this kidney that is causing ne so much trouble. I am scheduled tomorrow for a right renal Antiguan with possible embolization this should show where the bleed is coming from where its cancer or what. So I have my fingers crossed. Oh before I forget the symptoms and signs I have led my URO to believe it was structure disease. But when I have a stint in the bleed.should stop. Mine never did. Hope some of this info is useful.
Please advise if you found out what was wrong....
I am having the exact symptoms, and have had the same tests.....
still bleeding.
I am scheduled for more test.
Any info please !
Thanks,
Vicky
Right renal Angiogram showed nothing the radiologist couldn't find the bleed. Went a few days later and had stint removed it took him a little longer than normal because blood was pooling in my bladder. Which he didn't seem concerned and neither did I because now for me it is the norm to look like black dark red everyone I use the restroom. He advised me that we need to remove the kidney because we can't find the bleed and this has been going on almost a year but we can't do surgery until we find out where and how on my last hospital visit when they admitted me for septic kidney they found a pulmonary embolism in my lung and now I am on blood thinners at the age of 42. I went to a hemotologist and she advised no surgeries for 2/3 months due to blood clots on lung she took 16 tubes of blood and I follow up in 3weeks. I am on antibiotics long term to try and help keep me out if the hospital. I asked the doctor what shade if my urine should I come to er. He said with me he had seen it all from tomatoe soup thick red with some cloths to dark vampire blood. So if I pass more than 1cup of clots and or can't get right flank pain under control then that's when I go to Er. So advise to all if the pain is steady flank pain and the pain meds are only taking the edge off u need to go to Er because a septic kidney is nothing to mess with. Better to be safe than sorry. Another thing if they place a stint u will have spasms make sure you ask for spasm medication it helps a ton you will have vaginal spasms as well as pain in your lower back so it gets confusing at times with the flank pain and the pain from stint. The doctors kept telling me it was from the stint but every time I went to er I was admitted I had learned how far I can push it and the difference in pain. So where it stands now I have had about 4 days with unbelievable normal urine. This has happened before only to have it turn from normal to scary. I also advise get a hat for potty and pour into specimen cup so you can monitor colors and any cloths I also take pics with my phone because I have had nurses when admitted either due to shift change or she came on and thought it looked better and I took a picture Doc walks in and asks what color and deciding if to discharge or not nurse says looks better I whip out my phone and say what time and does that look better to you and he says no and I end up staying another day or so. I also have used the photos to show other specialist because when you say blood in your urine they automatically assume it's not so bad and how do you know did they do it in the office but when u show them a hat full of what appears to be all blood they are all shocked. Wish I could post a few.
Thanks for the information . I can't believe after a yr, they can't figure it out for you.
This all started with me about 6 weeks ago. I am a 49 yr old female.
Blood in urine....freaked out....went to ER. Didn't have any pain, so everyone was thinking Bladder cancer.
Urologist did cystoscopy...Bladder good, so where is the blood coming from.
Urologist thinks its a blood vessel within my right kidney.
The blood comes and goes about once a week for about 2-3 days. Bright red, then dark.
Getting ready for another CT scan when the blood turns bright red, I am to go straight and get CT scan,
then we go from there. Just this week , I had my first pain in my right flank area. then the pain stopped when the bleeding stopped.
keep me posted on what you find out and good luck with everything.
Thanks,
Vicky
Look up Loin Pain Hematuria Syndrome. I've had this rare kidney disease for nearly 10 years. It's hard to get a diagnosis, they have to exclude all other possibilities such as stones/gravel, iga nephropathy and thin glomerular membrane disease. Good luck, hope you get an answer!
Have seen a hemotologist due to the blood clots that I got recently during all of my visits to the hospital due to my septic kidney and blood for urine. At least one blood test result back I have tested positive for lupus.
Hi, I had the EXACT same problem about a month ago. I had heavy bleeding with the clots for 10 days straight and it just stopped on it's own one day and I haven't had anything since. I had all the same tests and procedures as you, including a renal ultrasound which showed bleeding in a small part of the right kidney (when I was still having symptoms). I was checked for stones (negative) and infections as well (also negative). Now I am at the "let's just wait and see if it happens again" stage. I also have a bleeding disorder so I lost a lot of blod over those 10 days and became very anemic. I hope you have been checked for anemia since it's so long term for you. I had a cystoscopy/uretoscopy at NY Presbyterian Weill Cornell Medical Center by a very respected Urologic Specialist so I feel confident that I am not in any immediate danger. Since the bleeding had stopped he was able to see into the kidney and was stumped when he didn't find anything. I had also visited a kidney doctor who didn't have too many answers either. Both doctors suggested if it happens again that I see an Interventional Radiologist who can perform an arteriogram and check the kidney for what they suspect could be an arterio malformation. Which is exactly what I will do if it occurs again. Maybe that's something you could look into? Good luck....I hope you can find a solution. I can imagine how frustrated you are!!
Hello, I have had gross hematuria on 3 separate occasions. The first two times lasted for about 6 months and then went away on its own. I had multiple tests run for all the main concerns with nothing. The 2nd episode happened 13 years after the first and I decided to go to the Mayo Clinic in AZ to get a full workup done. The cystoscopy had shown blood coming from right ureter. I then had a Ureteroscopy done to look into the kidney which they found every kidney calyx to have some sort of inflammation. The docs said they have never seen anything like it before except one doc said he had seen it on a couple occasions and that it usually went away after time. They didn't seem too concerned since all my blood work was fine and all other possibilities were ruled out. This is now the third time it happened, started a couple days ago and I am completely baffled at what could be causing this. Is there anyone else with any kind of similar symptoms? Has anyone else had a ureteroscopy performed to look into the kidney? Any info would be greatly appreciated.
Does anyone take any strange medicines? I am on an Orencia infusion for Rheumatoid Arthritis and am having the exact same problem. Gross Hematuria (without clots) started in December 2012 on and off...urologist did 3 separate cystoscopies and was frustrated at the result of finding nothing so he passed me off to a nephrologist. I have had ct scans, ultra sound dopplers, you name it. My Nephrologist is kind of perplexed about what this is and so I am doing a 24 hour urine which will be completed tomorrow as he found trace protein. I have mild rear flank pain that I have had for about 20 years but I always thought it was my back. My bloodwork is almost perfect except for the rheumatology part. When I checked some of my drugs, I came to find that they cause hematuria, but I actually can't prove it. So many of your ideas have been really terrific and I will give the website to my nephrologist. I think he might be interested and will have him look up the loin pain, etc., flexible tubes etc. Just a note to the yoga person...I do exercise and I do yoga also. In December 2012 when this all started, I noticed that "doing a jump" in aerobics, I felt something drop in my uterus. Seems it was a ureteral caruncle. Look it up, it is how to spell it. Since then the bleeding began and my urologist, at the time, believed it was from the caruncle so he gave me some mild estrogen cream, which seemed to work a bit but I stopped it due to headaches and then the bleeding began again. I do have stones, so I have eliminated some of the calcium I used to take to be healthy in order to try to eliminate them. The stones...they have become smaller but are still there. The gross hematuria is almost a part of my life and will not quit until I am rid of it. I actually forgot what it was like to pee "yellow". Keep the thoughts coming.
Hello for two years now I have had extreme blood in my urine to the point clots have blocked off my right kidney from draining. I have had stints placed in my kidney to my bladder to drain the blood but doctors don't know why this is happening..I'm in a lot of pain in my right side and in my bladder but no stones and no infection. It is a scary thing. I'm right there with you. Today I'm currently pregnant , and I have surgery every six weeks to have the stint removed and replaced. I'm still seeing blood in my urine every day and passing clots. Find a better doctor because it's not normal to bleed. I would love just being part of your journey. God bless you.
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