XLH symptoms ... or not

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine businessperson and a writer, with aspirations to become a novelist. 

When living with a chronic illness like XLH, we’re often tempted to associate additional symptoms or conditions with our primary diagnosed complaint. Sometimes, though, it's the doctor who doesn’t fully understand XLH who tries to find a way to tie in the additional symptom.

Back in 2010, I was watching a TV show with a focus on men’s urinary and prostate health. It dealt with things like how to examine one’s own testicles for suspicious lumps, the symptoms of urinary problems and the indicators of a potential prostate complaint. About a month later, I started having occasional pain whilst going to the bathroom, and a week after that, I noticed some blood in my urine. Given this technological age we live in, I went online to the website for the show I had seen. My symptoms seemed to indicate a potential urinary infection or could also possibly indicate a problem with my prostate gland. Being only 34 at the time, I thought I was too young to have a prostate problem.

I checked a little further and found a reliable medical site that seemed bent on trying to convince me I had prostate cancer! Both information sources suggested that it was far more unusual for a man to have a urinary infection, which are more commonly seen among pregnant women. The online advice was that I should immediately increase my intake of water and see a doctor at my earliest chance. I couldn’t get to the doctor until the following Monday, and my symptoms progressed until I was nearly doubled over with pain in the one anatomical element that a man never wants to have pain in!

I made the mistake of going to a health insurance clinic, as my doctor had retired. When I finally got to see a consultant, I was poked, prodded, examined and questioned. He was convinced that my symptoms were linked to the XLH, and that I was potentially looking at the early stages of kidney disease. He seemed puzzled that I didn’t have pain other than when urinating and wondered if I didn’t have kidney stones. I’m no doctor, but I knew for a fact I didn’t. Next came more tests, blood work, urine test, and even an ultrasound of my kidneys.

Since I didn’t have insurance, I had to ask him to stop the testing and just write a prescription for the antibiotics, which cleared up the infection. Even so, my bill was a staggering €550 euro or about $700US. 

I learned quite a few things that day. First, you need to find a doctor well versed in XLH, or at least someone willing to research and listen. Second, online diagnosis tools can’t be your only source of information on medical conditions. Finally, and most importantly, I learned that my kidneys weren’t pregnant!