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Still in the testing process

I almost feel guilty posting here as I am still in the testing process. I found my way to this page because of one of the stories I read from a member during my research of bladder cancer. During the summer of 2018 I went to my PCP because I was having all kinds of weird symptoms that at the time didn't make any sense to me but my body was telling me that something was wrong. In Oct 2018 during one of the urinalysis test it was found that I had moderate blood in my urine (unseen). So my PCP referred me to a urologist for the blood as well as symptoms of urgency and frequency. I had a kidney ultrasound done that was fine. The Urodynamic test showed my bladder was absolutely crazy. During this testing process I was still undergoing testing for my original symptoms and just before meeting with the urologist I was diagnosed with a brain disorder. Some of the symptoms with this disorder can cause neurological disorders with my bladder but still wouldn't explain why the blood in my urine every single time they tested me. In May 2019 the urologist just wanted to do Botox treatments on me. I was scheduled for brain surgery the end of June and I told him I wasn't doing any such treatments until I get through the surgery and see if anything changes with my bladder issues. Had the brain surgery in June and things seemed better. Thought maybe we had found the culprit for the weird bladder. In Sept 2019 before emergency surgery to put a brain shunt in my urine came back with an extremely high number for blood. Still unseen. In October I addressed it with my PCP and she said we would discuss it when I met with her in December. Mid October I started getting pain in my pelvis and side. First thought was a UTI. But the pain would come and go and I never got sick. My appt for Dec was rescheduled until Feb when I finally got to meet with the PCP. Told her the pain was frequent and was either in my side, pelvis or sometimes the side of my back. Did another urine test since the one she had me do right before my visit with her and as normal - positive for blood. She sent this one in as well - no infection. So she referred me to a urologist (this time I asked for a new one) since I didn't like the attitude of the last one. By now the pain is occurring daily and several times a day. Walking, sleeping or sitting didn't matter - pain would come and then go away. Did a test in the office with the urologist and it was positive for blood. She sent it out - negative for infection. Had a CT scan that said no abnormal signs with my bladder - but noted I have bi-lateral renal cysts of the kidney. Was scheduled for the cystoscopy but the Covid 19 put that on hold for now until the 17th of April (for now). I was ready to call and cancel it since the CT scan came back fine until I read the story by one of the members that said all of her initial testing before the cystoscopy came back normal. Every day I consider cancelling thinking there must not be anything until the need to run to the bathroom and the everyday pain that reminds me that their is something not right. If I had not listened to my body back in 2018 they would never have found my brain disorder. I just keep reminding myself that I need to listen to my body and something isn't right. Luckily I have the pain to remind me as well so I don't cancel the appointment. I was just curious if anyone else has had the same issues as this and what their prognosis was. Thankfully reading the one story on here from I believe DebbieS - it tells me to keep pushing on for an answer. Then the doubting part of my brain kicks in. 🙁

  1. I'm actually going through pretty much the same thing right now! I'm a 57 yr. old woman and I don't smoke or drink. I work part-time at Kohl's dept. store as a sales associate/softlines merchandiser/jewelry dept. for 7-1/2 yrs. now. Started out suddenly with sharp pain in my left ovary area and chills all night March 8th, 2020. Next 2 days fever, up to 102.6 and still having pain. Made an appt. with my GP for the next day and he sent me right away after appt. for a UA at Quest diagnostics. He sent over a script to the pharmacy in the meantime, for 7 days of Ciprofloxacin 500 mg twice a day. Didn't help. Then that friday the pain moved over to my right kidney area. My UA came back that friday with 10-20 rbc's in it and no uti or infection. Saw my GP the following week and he sent me back to my Urologist to have this checked. I had a similar issue 3 yrs ago in 2017. Had 10-20 rbc's (microscopic) in my UA then as well. My Urologist did a bunch of tests at that time and the last one was a Cystoscopy. He said he saw 3 red spots on my bladder and that I needed to come back in 3 months for another Cystoscopy and he would do a biopsy on those red spots. The Cystoscopy was sooo painful for me, I told my husband I'm definitely not going back for another Cystoscopy with a biopsy! I canceled the appt. a few days later and haven't seen the Urologist since then. When my GP read my report from the Urologist from 2017...he got pretty upset with me and said "how could you let it go for 3 yrs.!!!" I told him
    the reason why and he said "they can put you to sleep to do the Cystoscopy if it hurts!" So fast forward to April 7th, 2nd appt. for test results. My Urologist said I still have the microscopic blood in my UA, so he had me do a 3-day cytology, which came back negative. Oh I also have a weird pressure feeling going on like I need to pee, 5 minutes after peeing also. Anyways, then he sent me for an IVP with contrast. We were thinking it might be a kidney stone! 3rd appt. and he said the IVP came back with no kidney stone seen or blockage. I'm still having he same pain, mostly in my right lower kidney area. Some days it's sharp pain and then calms down in between. But it's there everyday. He said I need to have another Cystoscopy with possible biopsy, but with anesthesia at outpatient surgery center. My UA on April 7th now has 80 rbc's (microscopic) in it and no bacteria or UTI! But because of Covid-19, no elective surgeries are allowed right now according to the government. So the earliest he can do the Cystoscopy is May 20th. Not sure what is causing the pain! He said it may be a tumor or there may be something else going on in my bladder! I've been in pain since March 8th! At times I even have the pain on my right lower kidney area as well. I'm worried but trying to stay positive! I wonder if anyone else has ever had the same symptoms? Sorry for the long post! 😔🙄

    1. SkeetMama-

      First of all, I am so very sorry for all that you have been going through. That is a lot and it is entirely understandable why you feel stressed. And please do not feel guilty for posting here because you are still going through testing. That's what we're here for! I certainly hope that you don't have bladder cancer and end up not needing us but I am so glad you reached out here as you're trying to figure it out. I agree with all of your instincts regarding listening to you body and pressing on until you get an answer. And I agree that it sounds like the cystoscopy is what you need - but you already know that. The CT scan can show large, very visible problems in the bladder - like a large tumor. So it is good news that that came back normal. But with the cystoscopy, the urologist is actually seeing directly with the camera in the bladder. With that, he or she can see any smaller tumors or significant irritation that could be causing pain.

      The blood in the urine (even if not detectable to the eye) is a classic bladder cancer symptom but it can also indicate a number of other things, too. Your pain sounds like it is seriously impacting your life so I hope that you are able to get the scope soon. I'm so sorry you're caught in the COVID-19 challenge as well. You have been through enough with the brain surgery. Try to breathe and relax. You can't do anything other than that in the moment. And press for your test if they haven't scheduled you. Do emphasize how much pain you are in....don't downplay it. Please let us know what you find out. I hope you find relief from your pain very soon.

      Take good care, keep us posted, and come back anytime. Many folks are here who understand all kinds of bladder-related challenges. You are not alone. -Best, Renata (moderator,

    2. Sparkles4ever-

      I am so sorry for what you are going through. You are definitely not alone in dealing with painful and mysterious symptoms. I hope you are able to have the cystoscopy soon. Some places are restarting some elective procedures if they can safely balance them with the COVID risk. You might ask if it's possible to have local numbing for the cystoscopy. Your fear from the last one may cause you to feel you want to be put under but I am wondering if it might be possible to get the test sooner if you don't have to go through the surgery center. Just a thought.

      It's so tough to know what might be going on until you get that cystoscopy. Bladder cancer typically can cause the blood in the urine. But the fever and chills are generally not common symptoms and certainly sound more like an infection.

      Hang in there and keep pressing on until you get an answer. I hope you can find some pain relief in the meantime. Please keep us posted on how things go as you are able and inspired to. You are not alone. -Take good care, Renata (moderator,

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