“Drink more water”
Didn't accuse me of faking it for drugs, but for attention
Many pictures have a lot of text so I have created a document for those using screen readers. Pictures will be linked to the document, but it also can be found here.
I've had lots of strange encounters with doctors over the years; this urologist was a very strange one.
I had issues with the urologist I'd seen for several years and switched to a new one at the end of 2022. His qualifications seemed impressive and I was hopeful that he would be able to help with my current plethora of UTIs and kidney stones.
For simplicity, I'll call him, "Dr. Waters".
Dr. Waters talked excessively during my first visit and focused almost solely on overactive bladder treatments - though I was there for recurring UTIs and kidney stones, which aren't something that overactive bladder causes. I attempted to steer him towards my actual issue, but he continued to rant about overactive bladder and staying well hydrated. It was incredibly difficult to get a few words in and he would interrupt and talk over me and my mother any time we talked.
I had a bad feeling that I found another misogynistic doctor - and I had. He did eventually decide to perform some bloodwork and ordered 24 hour urine tests, so I thought he could still be beneficial to see. He prescribed medication for UTI prevention and said that it was "better than the antibiotics for preventing infection". When I looked at the medication, it was an antibiotic.
I went ahead and took it; it gave me a terrible rash that was only described as a "mild rash" in his spiel. Though it made it nearly impossible to wear pants for a couple of days, that wasn't even the most memorable part of the visit.
Because of the dysphagia, I have a PEG tube in my stomach. I've improved enough to eat all my calories normally, but I can't swallow food and need help supplementing my fluid intake. I take all medications through the tube and have a set amount of water that I put in each day. Because of this, I know the specific minimum amount of water I drink and anything extra is what I drink by mouth. At the time, the minimum daily fluid intake was 3L.
He was told about this.
One of the numerous conversations like this
He insisted that I was lying. Then began his habit of lecturing me to drink more water - "at least 2L" - and insisting that my issues would go away if I drank more water. He ordered a few blood tests; not surprisingly, they showed that I was drinking enough water. He insisted that I altered the blood test that he performed in his office!
We communicated through the online portal a little bit, and each time he lectured me about drinking at least 2L of water. He ordered a 24 hour urine test - one to do as soon as the kit was delivered and the other the week after. I cleared the day for the collection.
I had been peeing extremely often, but not having a lot of volume and started swelling. I felt like I was pregnant with a water balloon and looked it - though he informed me I was getting fat and called it "fluid retention" as "women always say". When I asked him how I was getting fat and eating under 1,000 calories a day, his answer was unsurprisingly, "you're lying".
The 24 hour urine test was extremely abnormal. My output was less than 1L, though I was drinking 3L a day. He told me to just have a larger output and drink more water. "If you drink more water, you'll have a larger output volume, " he said, as if I wasn't a 28 year old adult who went to college for biology. I told him that's what was supposed to happen and if my body was normal, I wouldn't be in his clinic.
My urine was supersaturated with calcium phosphate crystals, had low citrate and magnesium levels, and the pH was high, in addition to the low volume. Still, he ranted about how my issues are from overactive bladder and I should drink more water. I was tired of telling him how much water I drank. He insisted that I hadn't done the test correctly and possibly altered this test too.
I increased my water intake to 4L and repeated the test after a week. My output decreased.
I still wasn't doing well and frequently passed poppy seed sized kidney stones. It was torture and all Dr. Waters talked about was drinking more water and overactive bladder treatments. He gave me some medication after the first test, but he still wasn't focusing on the recurring UTIs and kidney stones.
Calcium phosphate crystals in urine under a microscope
I had a couple of ER visits for UTIs, kidney stones, and severe pain. Dr. Waters wasn't very concerned, but his colleague on call - the lead physician - was concerned and forced him to increase my medication and have the nurse practitioner see me the next day.
She wasn't much better either and parroted Dr. Waters. I burst into tears when she began to lecture me about drinking at least 2L of water. It is eternally frustrating to be practically yelling and screaming for help, but those who are supposed to help you don't listen. I'd nearly died from this and it gave me too many flashbacks to handle right now.
I sent a message to him to put the fluid intake in my chart and that I was tired of explaining it. He was still condescending, but said it would be in my chart - but I really should drink at least 2L of water. I had been pushed past my limits and according to my chart was "highly emotional and agitated" - as if I wasn't provoked.
I started suspecting that it could have been something genetic, like some of the things I'd learned about in college. I found a lab that ran genetic tests and brought it up to him. He agreed to do it and so I sent my sample to the lab and waited for him to sign the necessary paperwork.
A couple of weeks passed without any updates. I checked with the lab and discovered that he never finished the paperwork. I spent a week talking to him about it and eventually, he decided he didn't want to do it anymore.
Three weeks had already been wasted with him, so I got a video consultation with a genetic counselor, who was also suspicious of a genetic condition contributing to my issues. She ordered a test and I waited for a couple of weeks for results.
In the meantime, all communications with Dr. Waters were frustrating and focused on overactive bladder and drinking more water. My third urine test was somewhat better and he congratulated me on "finally" drinking enough water. I hadn't changed the amount of water I drank, and only improved with the medication he prescribed.
Of course, he said I was lying. I was done with this man. I checked that my medication had a lot of refills and sent a message firing him.
Just a few days later, I got my genetic test results back. It was positive for a genetic condition that affects calcium receptors and can cause issues like I've been having. I got a referral for a nephrologist (still waiting due to backlog) and sent a screenshot of the first page of the test results to the clinic's head nurse.
I asked her to ask Dr. Waters how much water I should drink to fix my DNA.
I haven't received any response yet, so I suppose I will have to guess. The bonus? My primary care provider looked at my blood tests and I was drinking too much water and just retaining most of it.
