Hi all. I've had significant blood in my urine (along with occasional bits of bloody tissue) for the last two weeks. Of course, I assume my APS is involved--but I realize not every malady is APS related. Checked INR first thing: 3.9. Kidney/bladder ultrasound--normal. Seeing a urologist, but wondering if anyone in the APS community has any experience with this I might share with the urologist.
Many thanks,
Michael
You must go to you Dr and see a Urologist for tests. I had this 3 times on Warfarin and it was found to be ruptures to the fine network of blood vessels in the bladder wall.
Dave
Thanks, Dave! I do have a urologist and I have an appointment for him to do an inspection of the inside of my bladder. But, I'm guessing that he doesn't have loads of patients with APS so it's really helpful that I can also share the experience of other APS sufferers when I see him. Thanks very much!
I agree with the advice from Dave, please let us know how you get on. MaryF
Thank you! Will do so.
Hi there,
When this first happened to me it was rather scary because if you google it, it always comes up with the worst case scenario.
I get checked every visit to my Rheumatologist and more than two/three times it has shown blood in my urine. Further tests asked for a scan etc and everything was fine.
I think, consider what medication you are on, discuss the effects of those on your kidneys with your specialists and they will help you by either putting your mind at ease or asking for follow up tests that will at some stage put your mind at ease.
In terms of the APS link, in my experience, it is more about what medication you take to manage it But I'm sure you'll have more experienced APS replied soon.
Hope this is helpful!
Very helpful. Love you guys and this chat room. My internet search also gave the range of: benign to fatal. Yikes!
But, becoming more comfortable by the minute by hearing of others experiences. I'll finish the course of testing, which NOW I'm thinking will be fine. Just all part of the fun, right?
Thank you, APsnotFab. Those have been ruled out by testing, although I have to admit, given what seemed to be dire alternatives early on, I was hoping for one of those--at least treatable! Thanks for the reply!
Many times I've had blood in urine on visit to rheumatologist and said would send away for check.didnt hear back so assume ok.mine was only minuscule thou and am ok in that department.Dont think APS was to do with it as had before too.As others said its best to get anything sorted when unusual.My best
I appreciate the response. Thanks very much.
I have a small amount blood in the urine for the last 20 years (aps was detected 4 years ago). I suppose it is not linked to APS, since I am factor XI deficient.
Thank you, David. More experiences (data points) helps put things in context for me.
Hi Michael.
When you talk to your Dr, report all of your symptoms such as pain, discomfort, chills ... if the pain stays in one place or "runs" / irradiates to other places ...
When that happened to me, my rheumatologist said that blood could come from bladder/urinary tract or from kidneys, and ordered another simple urine test to check this, it is called "erythrocyte morphology in urine". Basically, they put my urine sample under the microscope and see the red cells shape, if they are normal or round then the blood could come from bladder or somewhere below the road, but abnormally shaped blood cells usually come from the kidney (which is my case)... it doesn't mean the kidney is bleeding or hurt, only that it has some inflammation/swelling and is allowing the blood to pass into urine. So, I was referred to a nephrologist instead of an urologist for treatment. Ok, bad story, don't panic please 
I really hope this is not your case, just mention the urine test and see if it helps to your diagnosis. And yes, not everything is due to APS. Good luck!
Samantha
Thank you so much for your informative and timely message. My appointment is this coming Wednesday and I'll bring your message (and those of the other kind responders) for him to review. I appreciate not only your taking the time to respond, but the detailed response. As APS sufferers, we may not have much control of our circumstances, but we can strive not to be ignorant about what is happening to us. Thank you!
Did you get any answers? My husband who has APS just started having blood in his urine a few days ago. Dr says it's not a urinary tract infection.
Hi.
Here's what I found out. Blood in urine is not all that uncommon and most of the time is of no concern. HOWEVER, the urologist said they always run tests when there is blood because the rare times it is trouble, it's serious trouble. For me, the tests were: 1) an ultrasound of the kidneys and bladder, 2) a scope looking inside the bladder and 3) a cytology of my urine. Delighted to report that all tests were negative.😀 You and your husband should stay calm, but see a urologist and have the various tests run for complete peace of mind.
Thank you to all the outstanding people on this site who provided insight and perspective while I was wondering what was happening to me. I am deeply in your debt.
Michael
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