Blood in Urine after treatment for "UTI" with Negative Culture
Posted , 5 users are following.
I know there are several posts similar to mine, but they all seem to be over a year old. I wanted to share my experience to help calm my anxiety and hopefully relieve someone else's frustrations.
I am a 33 year old active female with healthy weight/ blood sugar/blood pressure. I am a former social smoker and have 2-3 beers a week Other than UTIs, I have had zero health issues in my three decades on this planet.
My first UTI occured at 17 after I became sexually active. Between the ages of 17 and 30, I have probably had 10 UTIs that responded very quickly to antibiotics. None of these UTIs occurred in close proximity to one another. I also don't think anything was cultured.
When I was 28, I had visible blood in my urine with zero pain. I went to an urgent care thinking a UTI was coming and by some miracle I was getting an advanced notice. No such luck. I was quickly referred to a urologist who did a CT with contrast, Cystoscopy, blood tests and urine tests. All came back clear. The multiple appointments and tests happened over a month or so and the bleeding stopped . It never happened again until 2018, but I'll get to that soon. As a side note, I can't tell you how many times someone asked if I was sure it was coming from that hole!
Fast forward to October 2015 when I started dating my now husband and I wake up with that all too familiar UTI feeling. I went to urgent care, had high leukocytes and small microscopic hematuria; no culture was done. I was given antibiotics and symptoms cleared in 24 hours . From October 2015 to 2018, I had five more "UTIs." Only three were cultured. One was negative, one was positive for E. Coli (25K CFU)and one was positive for Streptococcis Viridans group (100K CFU). Strep is considered normal microflora and therefore the test was deemed contaminated. I am a pro at clean catch, but I guess I was off my game.
For the strep one (late May 2018), I was treated with Macrobid and was given enough pills for the standard 100mg 2x/day for 5 days and a post-coital prophalaxis dose. After 5 days, my symptoms were gone. I was reluctant to start taking a daily antibiotic but I gave in after a new symptom developed.
A little less relevant information is that I do all the basic hygiene spiel I've heard 25+ times. I eat cleaner than 95% of Americans. I take d-mannose daily. I take a Urinary Tract specific probiotic. I drink a gallon of water a day (no exaggeration). I am negative for every STD known to man. I know what Interstital Cystitis is and I would hardly classify my "UTIs" as debilitating as the stories I've read. After my last UTI, I started taking d-mannose, apple cider vinegar (diluted in 1/2 cup water) and a garlic supplement right before I go to bed so it sits in my bladder all night.
On May 30th, 2018, I began having asymptomatic blood in my urine... AGAIN. I'm not sure if this is related to the frequent UTIs that have plagued me for the last 2.5 years especially the one I had finished treating 5 days prior to bleeding onset. I noticed a bit of blood on the toilet paper and paid extra attention to my stream of my next pee. Sure enough, my stream was clear until the end and I got a few drops of bright red blood. This continued May 31st, June 1st and June 2nd. I am happy to report that on June 3rd and 4th, I only peed a bit of blood first thing in the morning and today, June 5th, I'm all clear. I'm hoping it was the d-mannose/acv/garlic cocktail sitting in my just healed bladder.
I have an appointment with a urologist Friday, June 8th, 2018 and to say I'm scared is an understatement. I will keep everyone updated. I know it's unlikely I'll get a definitive answer, but at least I'll get cancer/not cancer distinction.
My husband and I quit our job in July 2017 and are traveling for one year. We are 11 months in and just starting to search for jobs and a place to settle. Needless to say, the timing could not be worse. Our healthcare coverage is catastrophic coverage only, so that has added an irrelevant but concerning element to the situation.
Apologies that my thoughts are jumbled, but the past few days have been an emotional rollercoaster! I'd love to hear your thoughts and experiences on my predicament .
0 likes, 7 replies
marilee43089 danielle801
Posted
First I would like to commend you on a beautifully written post. It's good that you are on top of everything and answered the questions that repliers are likely to ask.
Your situation is a bit baffling in that you had the visable blood 5 years ago and had various negative tests. Now, the blood is back.
I would guess the urologist is going to want to do another cysto and probably biopsy. They could start with the simple FISH test to see if there are any cancer cells in your urine. It doesn't rule out cancer, but it's a start.
I'm sorry I have nothing worthwhile to add except to say that I understand your fear. I'm much much older than you and I suffer from health phobia/anxiety.
danielle801 marilee43089
Posted
Thank for your your kind words. I just finished my appointment which consisted of a cystoscopy, urinalysis and ultrasound. All clear of cancer or abnormalities! I did not get a CT this go around, but after a careful risk/benefit analysis, I am ok with that for now.
The doctor was not the most thorough person, and he seemed to dismiss my concern in the first minute of our conversation. He also asked if I was sure it wasn't menstrual blood. I get why they always ask that, but this ain't my first rodeo! He didn't offer any definitive answers but suggested it might be a small defect in the vascular system of my kidneys that might not ever show up in imaging. He told me to be vigilant and come back in if it happens again.
Since my husband and I are both out of work and have minimal health coverage, I have made the decision to put off any further testing until we settle in one spot which should be in a month or two.
Panda1kun danielle801
Posted
Beautifuly written and I can say that I know exactly what your going through and I have yet to hear an answer myself. I have not bled but I do get UTI's 3 times a month and sometimes even after I still feel uncomfortable downstairs. I see a urologist and I have all good results and I notice if I wipe after sex drink loads of water a day and stay clean I'm ok. As soon as I slip up a little I get one. I see you do this and more so just have faith you will find something out and their will be a stop to this. I wish you all the luck.
danielle801 Panda1kun
Posted
Three times a month?! My heart goes out to you! I was getting them every three months or so and I managed to go nine months without one. I attribute that to daily use of d-mannose and a really good probiotic! I also use a sanitizing wipe after I go #2 and before/after I have sex to ensure it's as close to sterile down there as possible. In the last month, I've also given in to taking a prophylactic antibiotic to give my bladder a chance to heal. I'll let you know if I get another one during this treatment or as soon as I stop.
The main goal of the visit today was for the visible blood in my urine. Considering this was my second round of visible blood, I needed reassurance that the UTI symptoms weren't something else. I didn't get alot of answers or new advice, but I feel alot better!
marilee43089 danielle801
Posted
What's a 'sanitizing wipe'? I'm home all day, so I wash with soap after #2.
bianca56907 danielle801
Posted
Micklemus danielle801
Posted
There must be thousands of patients who are treated on what is none other than a hit and miss basis........
I would ask all and sundry re doctors.......... is the course of antibiotics long enough to completely eradicate the bacteria that is causing a nuisance?
Further more if a person has had tuberculosis at any time in their life but is resistant to that bacteria it has been researched that tuberculosis bacteria can re emerge anywhere in the human body. Coupled to that fact that
most doctors after my experience do not consult or have not consulted ancient or otherwise medical history. That is an appalling fact but it is true. The doctors I have discussed my health issues obviously did not look at my medical history and that is confirmed by letters and also our health center manager who says it's not easy to see paper medical history which is a blatant idiotic excuse for complacency. There must be thousands of patients where mistakes have been made caused directly by the fact that their medical history was not perused.