I went to my primary doc yesterday as URO would not see me for UTI symptoms. Turns out I do not have a UTI. Not sure what is going on. Could this be irritation from the last cysto? Seems funny that I would have this 3 or 4 weeks after the procedure. What I am experiencing is burning like symptoms in the urethra area from the outside and up to what seems like the bladder opening. Does anyone know what may be going on? Today it seems better. This is an on again off again (3 x's since last cysto) problem. Have been debating whether I should call the URO or not. I am past menopause and wondering if dryness could cause this. I really don't want to miss any symptoms that could be critical down the road by not being proactive. Primary doctor a few months ago said to use estrogen cream around the area and it should help. She recommended 2-3 times a week for a couple of weeks then once a week thereafter. I didn't do as she said as I would forget at bedtime to use it. Has anyone had anything like this happen to them?
Sara Anne...Thank you so much for this information....your experience is very similar to mine. Next UTI symptoms I am definitely not going to self treat, I will call and get in to see my primary doctor. My uro will not see me for UTI symptoms...said I have to go to primary first. Seems strange as that is why I went in to see him in the first place (I asked my primary to refer me to a URO after the constant UTI's).
Have been gone for two weeks, so am late entering the thread. But I want to share my experience with you (at the risk of boring the old-timers) since there are some similarities. I had "UTI's" for a period of about two years. Self treated with antibiotics....they would go away, then come back. At my gyn exam last August, the nurse practitioner told me that if you have two or more UTI's in a year you head to a urologist. I did. Was assymptomatic at the time of my first visit; he gave me an antibiotic prescription and told me to take them ONLY after taking a specimen to be delivered to his office. I did, and found that I did NOT have a UTI.
The urologist had me in his office that afternoon for cytoscopy. He saw an "ulcer" which he said needed a biopsy. The first TURB showed papillary transitional cell carcinoma, and large areas of "inflammed" tissue, with no real diagnosis. Back into the OR in two weeks for a second TURB and the result of MULTIPLE samples was CIS. The urologist says that CIS could have caused all the UTI symptoms.
I finished six weeks of BCG in May with minimal discomfort and ALL MY HORRIBLE UTI SYMPTOMS HAVE DISAPPEARED!! Feel better physically than I have in over a year (and mentally, thanks to this list.) Will have maintenance BCG starting next month.
What I am trying to share with you, with this long monologue, is that the inflammed areas seen in your case sort of bother me, and I would like to see you have them thoroughly biopsied. It is very possible that you do NOT have a UTI. I agree with others that you need to be VERY proactive and politely demanding...it is YOUR health and YOUR life.
Best of luck to you, and please keep us informed!! We care!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
The answer you are getting is that no one here can tell you what is going on with you. But we can tell you that you should see a Urologist to know for sure. A second opinion is a very important thing when dealing with blc as understaging is not unusual. Also we know from statistics that outcomes are much better when you deal with a Urologist that handles a high volume of blc. If you let us know where you are in a general way we would be happy to give you names of Uro that we know of and you could check and see if they except your insurance. We can also tell you how to get your records sent for the second opinion if you need help.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Momof4....Thank you so much for the kaiser info. It will help me a bunch.
Rosemary...I did not get the last 2 UTI's cultured. I just take macrodatoin when I get one...I have had so many the last two years they all have the same signs so just assume that is what I have. In the past when I went to the doc they were always UTI's. I never ever have had blood in my urine. It was because of so many UTI's that I request my Primary Doc to refer me to a URO. On the first cysto they found a small PNLMP which was removed via TURB in hospital followed by Mitomycin. I guess I worry if the UTI means I may have something going on inside my bladder again.