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Not diagnosed, but worried

3 years 8 months ago #50793 by sara.anne
Hi Carrie and welcome! Hope you don't have to stay a memeber!

Don't feel bad about not recognizing that the urinary blood could mean something. Many doctors just ignore it in a woman! At least your physician recognized that there might be a problem and sent you to a urologist.

The urologist will probably do what is called cystoscopy....where he looks into the bladder with a small (very small) camera to assess what the lining looks like. It is a bit uncomfortable....very like a pelvic!
IF it looks as if there is a problem, he will schedule you for more tests.

One thing to remember....IF it is bladder cancer...this is very treatable when found early.

Please let us know what happens.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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The following user(s) said Thank You: CARRIE3153

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3 years 8 months ago #50792 by CARRIE3153
Hi, I'm Carrie. I'm 35, married for 16 years, with two girls ages, 12 and 10.
First, let me say, I am terribly sorry for those dealing with bladder cancer. I'm glad there are places like this to share and offer support.

My story, I'll be as brief as possible: I am not diagnosed with bladder cancer, but I am worried. I was diagnosed with Medullary Sponge Kidneys about 10 years ago. It's a birth defect where your kidneys aren't formed right and urine pools instead of flowing and you develop lots of kidney stones. I have been extremely lucky, in 10 years I've only had a handful of stones, opposed to others with my condition who literally have hundreds.

Last week, I had a terrible bout of hematuria. 6 days of very heavy bleeding and then it stopped all of a sudden. I went to my nephrologist yesterday and she said it was probably just kidney stones. But the thing is I have very little pain. No pain at all when I'm urinating, just some mild back pain that comes and goes, and a little suprapubic pain, more like bladder cramps. I have never had a kidney stone without extreme pain, ever. She checked my urine, it was fine, no blood and no sign of infection. (I had one more bout of blood last night after my appt and then it stopped again.) She asked me when in the stream does the blood come, "Is it at the beginning, the whole time or at the end?" I told her it's a the very end of the stream and sometimes there's blood clots. She said that was terminal hematuria and usually not from the kidneys, but from the bladder or ureters. And a light bulb went off in my head!! I realized that I have been doing this for probably 18 months and never realized it was urinary blood, I thought it was menstrual related! I will urinate and at the end, the last 4-5 drops will be pink in the toilet and the tissue paper will be pink. This happens very frequently. She asked me if I smoke, I do and have for 15 years. Then she said, I need to see a urologist, I have an appt tomorrow. She said I need to rule out bladder cancer. This has me very worried and of course, I spent the evening googling and found out that smoking is the #1 risk factor for bladder cancer, so my anxiety is very high now.

I feel very stupid for not realizing the difference between urinary and menstrual blood. Can someone share their experience and if it related to mine? Is there anything in particular that I should ask the urologist tomorrow? Thank you in advance for your time. :)

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