My bladder problems (Recap of Lost Posts, Topic Created by SF73 on Nov 20, 2018)
This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.
Nov 20, 2018 - 12:56 pm
Sorry, this post is a bit long.
For the last month I have been going to the bathroom very frequently. First I saw my PCP, she ordered a urine sample which revealed some WBC. She concluded that it must be UTI even though I never have UTIs. She started me on some antibiotics. My symptoms did not get any better. Later she called and said the urine culture test was negative and it probably was not an UTI afterall.
Two weeks ago I saw the RN from UCSF for my 9th month check. She manually examined me and found everything to be normal (I don't know what exactly they are looking for. When I had a 6 cm tumor on my right ovary, the previous gyn oncologist examined me and found nothing at all). During the exam, speculum really hurt me. I hate that device so much! Right after the exam, she wanted me to give another urine sample since the one from my PCP did not have any of info she was looking for. The bathroom was dark but my urine's color looked off to me. This time apparently there was no WBC but a lot of red blood cells. She said even though I have no pain maybe this is being caused by my kidneys. One reason why she suspected that was in my last CT the radiologist noted that I had a nonobstructing left renal stone. I don't have anyone in my family who had kidney stones. I am wondering if the high dose Vitamin D or chemo itself caused this. Did anyone else end up having kidney stones after their treatment?
So she asked me to get an ultrasound of my bladder and kidneys. It occurred to me on the way home that the blood in my urine may be caused by the irritation of the already sensitive vagina walls during the manual exam. I emailed my idea to the RN and she thought it was plausible. Last Friday I took another urine exam to make sure RBC is not a red herring. I also had the ultrasound of my bladder but somehow they did not see the order of ultrasound of my kidneys so that was not done. I immediately heard from the RN (which I really really appreciate) that the ultrasound looked OK and my urine sample is fine. But when I checked the urine test on the patient portal, I noticed that it suggests "RBC 3 to 10 /HPF and Calcium oxalate crystals are present" RBC level is much lower (3-10 / HPF) than it was a week ago (it was 21-50 /HPF level then) So clearly the speculum played a role. When I mentioned that I did not get the kidney ultrasound and that I am concerned about the urine test I got the following answer:
"You can forgo the kidney ultrasound if you wish given the recent urine analysis."
Hmmm What?? Why? Like DerMaus's mother I felt like "we didn't get to the bottom of it" Why is she not concerned about the RBC? How about my symptoms? In the office she recommended some pelvic floor exercises. If that was the case would the symptoms come on so suddenly a year after the surgery? I wonder if my issue is vaginal atrophy. If you were diagnosed with vaginal atrophy what has worked?
My symptoms are more sporadic now. I don't have that strong urge even on the days that I go to the bathroom often. I would love to hear your experiences.
Nov 20, 2018 - 2:02 pm
If I were you, I would schedule a consultation with a urologist. It doesn't appear from your post that anyone has addressed the issue of your kidney stone. That may or may not be causing intermittent bleeding. I would not be comfortable with a PCP and RN treating issues such as you've described. Every so often I have blood in my urine and urinary frequency. I'm under the care of a urologist and I know that my symptoms are due to radiation cystitis. I know you did not have radiation, so that is not your problem, but I agree with you that you need more answers and a more thorough workup than your current medical team appears able to provide you.
Good luck at getting to the bottom of things!
Nov 20, 2018 - 2:54 pm
Thank you, MoeKay for your thoughtful response. I have scheduled a consultation with a gyno urologist for Nov 27th and kidney ultrasound is scheduled for Nov 29th. Not ideal. I would have liked the urologist to have access to that data but I am glad that I at least got the ball rolling. You are absolutely right. I just wrote about falling into false sense of security because one health professional was not feeling alarmed by my situation when responding to the question about timeline. And I am doing it again. So despreate to hear that nothing is wrong, I quit investigating with them. This time I will push to find an answer. Thanks again.
Nov 27, 2018 - 10:29 am
Please make an appointment with a nephrologist and a urologist. I had pElvis radiation 9 years ago for CC and recently had a collapsed urerter caused by radiation. They inserted a stent and I am scheduled for Boari Flap surgery next month to avoid having the stent replaced every three months. Not certain if you had radiation or not but your symptoms sound similar to mine. Glad you were able to schedule an appointment for the 29th.
Nov 27, 2018 - 11:11 am
is your stent really painful? Can I ask where you are having your surgery. I’m on my 4th stent and have had a lot of problems.
Jan 25, 2019 - 9:32 pm
I thought I would give an update on my bladder issues.
Soon after my last post all my symptoms were gone but since I made the appointments and promised myself to get to the bottom of this I had the ultrasounds and saw the urologist. Ultrasound did not reveal anything interesting. 3 mm kidney stone and some etching of the kidney. Maybe caused by chronic dehydration. I should drink more water. Urologist did a cystoscopy and noticed a small red spot. She said that it may be caused by the infection i may have had in October or by passing of little pieces of the kidney stone I have. But given my cancer history she wanted me to repeat the cystoscopy and if the spot is still there, she wanted it to be biopsied. The earliest appointment I could find was someone who had a terrible yelp rating. When the day of the exam came I got scared and didn’t go and instead made an appointment with UCSF for mid January. After many weeks of reading about bladder cancer and scaring myself to death, I finally got the follow up cystoscopy last week. The urology oncologist did not see anything wrong with my bladder. The cytology (testing of the urine for cancer) also came back negative. The curious thing is I still have microscopic blood in my urine. The new doctor would like me to get a ct scan (a special kind that urologists find meaningful) but my last ct scan was in August and I don’t want to expose myself to unnecessary radiation.
As cancer survivors, we are at risk of being over treated. Even though I was very nervous for a few weeks I am so glad that I gave my body some time to recover and fix that little inflammation by itself. If I had seen the other doctor in december I may have had a biopsy. I didn’t get to the bottom of things but at least I didn’t hurt myself needlessly.
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