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need help with cystoscopy reading

1 year 10 months ago #56640 by tunnellight
Hi Cynthia,

Thank you for replying and your advice.

Unfortunately, we currently live in Uzbekistan. I was thinking about getting a second opinion from the clinics in the US that offer paid one-time online consultations, but it costs a lot of money. I'm ready to pay, but I'm not sure if they will review everything thoroughly and we will get an in-depth second opinion. We have a lot of information (a detailed timeline of symptoms, tests, taken drugs by day, cystoscopy videos, CT, MRI scans). I guess I will just need to call them and ask.


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1 year 10 months ago #56639 by Cynthia
My suggestion would be to seek a second opinion. Find a urologist that is connected to a University hospital. If you let us know what state you are in we might be able to help. Blood in the urine can be caused by at least a 1000 different reasons and some people never get an answer as for why. But having said that for you and your wife’s peace of mind a second opinion at a center of excellence would be a good idea.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 year 10 months ago #56638 by tunnellight
I'm not sure if this is the right place to post this request, but I'm kind of desperate. My wife has been having recurring cystitis, hematuria, dysuria, nocturia, frequent urination, urgency, on and off for about 7 months now. Although she has been taking antibiotic drugs, the doctors still don't know exactly why she is having the symptoms again and again, or where the blood is coming from. 2 months prior to the first hematuria experience, she had a laparoscopy to remove the left ovarian endometrial cyst. The surgeon told us she had stage IV endometriosis. We have done 3 cystoscopies since the first hematuria. We have done a CT urography scan as well, and other relevant tests. So, I'm looking for someone who could look at her cystoscopies at least. Do you guys know anyone who can help us or where to seek help? Any advice is highly appreciated.

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