Blood in Urine....What Next?: Today went to... - CLL Support

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Blood in Urine....What Next?

ladyprescott profile image
17 Replies

Today went to gynecologist for check on a Pap smear that came back abnormal and they did a urine test and found through dip stick that I have quite a lot of blood in my urine. Not visible, so they are sending to lab for testing. With all the things I've had since going on Imbruvica, has anyone had this happen to them. I am not in a panic (well maybe), but I am getting really tired of one thing after another. It's like What's Next! At the office they said I will also be referred to a urologist, but in the morning I will be on the phone getting an appointment with one. Any input would be appreciated. Thanks all. Carole

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17 Replies
Lola69 profile image
Lola69

It’s called microscopic hématurie blood that can’t be seen by us. I’ve had this even before starting imbruvica it’s just my body that’s like that. I’ve had ultrasounds and they found nothing. How long have u been on imbruvica?

ladyprescott profile image
ladyprescott in reply to Lola69

Hi Lola. Thanks for your reply. I've been full time on Imbruvica since June.

Lola69 profile image
Lola69 in reply to ladyprescott

Hi Carole! Sorry u are going through all this stress. If it’s any consolation sometimes Pap tests are false!! Hang in there!

ladyprescott profile image
ladyprescott in reply to Lola69

Thank you.

HeatherS-UK profile image
HeatherS-UK

I have had no treatment as yet and I have constant microscopic haematuria .... I have lots of urine infections and have had a cystoscope which showed something called cystitis cystica, on medication, helped at first then symptoms came back worse, got to have more tests now and trying different medications

Peggy4 profile image
Peggy4

I had this last year. Frightened me to death. To be fair my Dr referred me immediately to a consultant. I was seen within 2 weeks and after a small procedure for investigation and a lot of worry was told that all was well. Hope it will be the same for you.

Peggy 😀

If all tests come back clear try eliminating sugar from your diet for a while...

lucyjack profile image
lucyjack

Try not to worry too much. About 18 months before i started treatment, blood was discovered, same as yrs; in urine. I had an ultrasound and saw a consultant. I then had a cystoscopy ( this was totally painless procedure). I was told by the consultant urologist that there was nothing to worry about. He said a large percentage of adults worldwide can have blood in their urine, with no apparent cause.

I hope this helps x

MrMidnight profile image
MrMidnight

Haematuria is common on Ibrutinib. I've had visible blood (gross haematuria) in my urine off and on since I was put on Zanubrutinib. (I saw recently that 20 per cent of patients on Z experience it.) A urologist will want to check nothing else is going on but it's well known that Ibrutinib can interfere with platelets so that is the likely cause. Like you, I have often thought "What next?" but I now try not to catastrophise (which I have done many times since being diagnosed in 2013!) when some new problem comes up. It's not easy to calm yourself, but it's worth trying not to panic until you have good reason to. I don't know about Pap smears as a man but the blood could easily be a result of taking Ibrutinib.

ladyprescott profile image
ladyprescott in reply to MrMidnight

Thank you for your kind reply. I am wondering the same that Imbruvica is the problem.

suz02 profile image
suz02

My platelets are normal, but recently microscopic urinary bleeding was discovered through repeated lab tests. I've been on Ibrutinib for almost a year, and wondering if its likely related. But most Dr.'s say no, since my platelets are good.

Does anyone have insight to this?

Doremefasol profile image
Doremefasol in reply to suz02

Same is happening to me. Just last Friday I went for a routine gynaecology appointment, and there was a large amounts of blood in my urine discovered via dipstick and then confirmed with urinalysis . My oncologist is away till Monday, but I am worried and tired of having something going on all the time.i have been on Ibrutinib since September.

suz02 profile image
suz02

i've been asked to see a gastrointestinal md, and a urologist; UGH! hate to keep running around to all these dr.'s.

Keep me posted.

AussieNeil profile image
AussieNeilAdministrator

Amandababy520, You have answered a reply from 9 months ago.

HeatherS, what's happened in the last 9 months?

With respect to cystitis cystica, from:

pathologyoutlines.com/topic...

Treatment

Removal of source of irritation; also longterm antibiotic therapy for chronic urinary tract infections or transurethral resection of cystitis glandularis tissue

Surgical options reserved for patients who do not respond to conservative therapies

LovecuresCLL profile image
LovecuresCLL

Can they do HPV (human papilloma virus) testing on that Pap fluid . You also need gynecologist to do an endometrial and endocervocal biopsy if blood coming from uterus and not bladder . And they need to look inside bladder with a scope to make sure bladder smooth and no blood coming from there. They can also do molecular tests on your urine to make sure it’s not positive.

A kidney stone can cause blood in urine too. Urologists look for all these things, and so do gynecologists in women. I would followup with the gynecologist too.

Many benign things like uterine polyps can cause bleeding so do NOT worry at all just take it one step at a time and get the tests and find out why you are bleeding from your genitourinary tract.

No reason to worry again just do what they are asking you to do. Many benign things can cause bleeding. Too many things to list.

Newdawn profile image
NewdawnAdministrator in reply to LovecuresCLL

Hi LCCLL,

It’s not clear who you are responding to there but the latest post is 5 months old and the original 9 months old so hopefully the issues may have been resolved now.

Newdawn

ladyprescott profile image
ladyprescott in reply to Newdawn

The issue is resolved. Yes; this post is 9 months old and I just in the last month got clearance from my urologist after three different tests that all is well and he has released me. Carole

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