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Concerned and confused

10 months 1 week ago #54667 by LisaOpp7
That's great Ellen. I'm sorry for your symptoms though. My Dr asked if I have had a lot of UTI's. She said she saw pale spots on the inside of my bladder and you get them from UTI's. I have had a few.
... interesting.

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10 months 1 week ago #54666 by Elle1356
That is great news Lisa! My Dr. also said that with all of the tests coming back clear, they will just monitor things every few months for awhile. They also are doing some tests to see if there is some kind of bacterial issue, since when my episodes arise, there is burning, urgency and then it goes away after awhile.
I am reminded of a saying, “Worrying about tomorrow takes away the peace of mind today”, so that is my new mantra!!!

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10 months 1 week ago #54664 by LisaOpp7
Update:
I went for a CT and had a urine test with a cytology. Both came back negative for cancer or infections.

Yesterday, I went back to the Dr for a cystoscopy, which by the way was surprisingly painless and quick! She found nothing terribly wrong, except she did see something called a "Hunner's Ulcer". The outer layer of it falling off may have caused the bleeding, which looked like blot clots. No treatment is necessary because I don't have any pain or symptoms.
I hope this may have helped anyone who has had the same symptoms.

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10 months 4 weeks ago #54578 by Elle1356
Thank you Cynthia,

I too have had gross hematuria, CT in December with without contrast, urine analysis and all of the pertinent tests, cystoscopy 2 weeks ago. My husband and I are now out of the country and will not be back till Feb 1. I am 60, non-smoker, but then had one more episode when we got here. Just do not want this to ruin this special trip we planned to celebrate his retirement. Did everything right I thought, had all of the tests done before we left, all was well. He did say I have sensitive bladder syndrome whatever that is. Also, that a certain number, (do not know how many) initially are told all is negative and then later a diagnosis. Always have had an urgency and lately some discomfort. You have certainly been through a lot and are an inspiration. Always thought I was, but just feel sorry for myself, and wondering where the faith I always had went. Just feeling plain old “hang dog”. Thank you for your thoughts and upbeat message, many of us need it.

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10 months 4 weeks ago #54577 by Elle1356
Hi Lisa,
I am in the same boat. Early December i had an episode of gross hematuria, which frankly freaked me out. Marched through the holidays trying to not let my husband and kids know how worried I was. They did a CT scan with/without contrast, cystoscopy, all of the urine tests and all came back negative. Well, here I am now on a wonderful vacation with my husband and episode number 2. Of course, as a non-smoker, although just turned 60, although I hike 4 miles a day, so do not feel that old, know the age risk factor is there. Going to a great, well known urologist, but it grates on your nerves. When we do get home, will call him, he wanted me in every 3 months. Do now know what bunny he will pull out of his hat when I had the cystoscopy 2 weeks ago. Good luck with your issues, it is very stressful. I pray a lot and the take one day at a time is good advice for both of us!

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11 months 1 week ago #54552 by LisaOpp7
Thanks, yes I'm scheduled for that in a couple of weeks. The urologist called this morning. Her labs came back and they were completely negative. She also reviewed the CT. I have a dense cyst on my kidney and a tiny stone, other than that she doesn't see anything else. I have low platelets so if I bleed, I bleed a lot more than most.

Thanks again.

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