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We have lived in our house about 15 years. Shortly after we moved in I suspected a leak behind our shower wall. The floorboard in the bathroom was molded and the drywall above it warped. The tile would be dry, but the grout one tile out would get wet -- so it seemed unlikely the shower door wasn't closed properly. We had a plumber evaluate it but he didn't find anything amiss. I think he thought I was crazy.
Years went by and I still thought there were issues every once in awhile, but irregularly enough that I wasn't concerned to do anything about it. My engineer husband didn't seem too concerned. I think he also assumed we were being careless in the shower and allowing the door to leak.
We had another plumber look at it about 5 years ago when we were updating our bathroom. He confirmed that there is no leak, fixed the drywall, and replaced the floorboard. He bragged that our new caulking shouldn't mold due to a special something they put in it that makes it mold resistant.
I still had my suspicions, but what do I know? I'm not a plumber.
The new floorboard is again moldy. The new caulk seems to get moldy from behind -- I clean the outside very carefully and it only looks discolored from behind. It has started to crack, so I thought maybe the water gets trapped behind and allows it to mold.
Over the summer I was cleaning out my daughter's closet. We decided to remove a bookcase that was there. The carpet underneath was completely moldy. Since her closet abuts our shower, this confirmed my leaky pipe suspicion despite two qualified plumbers saying they are fine. (My daughter had a blast breaking down the bookcase so we could dispose of it!)
Recently I dumped a bucket of water after mopping into the bathtub that never gets used in the same bathroom. (I usually dump mop water into the kitchen sink.) When I moved on to clean the shower, I saw something unusual: there was dirty water seeping from behind the caulking and dripping into the shower. No one had showered yet that day. I brought my husband up to show him. I was convinced that the tub leaked. That would explain the intermittent nature of the problem! He said it's not possible for the water to go uphill and into the shower caulking above the base rim.
It's been 15 years and it can't be a bad leak since the floor hasn't completely rotted out. We only see signs of water leakage intermittently. We know it will be an expensive repair, so we are saving up and waiting... a few more months won't matter, will it? And two plumbers have looked for a leak without success. I'm closely monitoring to see if I find a pattern to help find the leak when we open up the wall.
So. What does this have to do with medicine?
It parallels complex diagnoses. Most people are not informed consumers when it comes to how their body works. I'm not saying patients are not smart. I'm a well educated person, but I know nothing about plumbing. I am an uninformed consumer. My husband is an engineer, so has a little knowledge of how our house is put together, but it's just enough to give him false confidence. He has been in denial of a problem for most of the 15 years we have lived here. Two qualified plumbers failed to see a problem, despite my concerns. I didn't follow through on suspicions based on their expertise and recommendations.
Physicians spend many years learning anatomy, physiology, pharmacology, and more. Years more are spent fine tuning diagnostic processes with actual patients. We continually learn throughout our careers based on new research and experiences. Despite all this training, one physician can't know everything and sometimes must refer to a sub specialist to sort things out. And I know they sometimes don't figure it out. We all can't be the genius doc from House, who seems to figure out every obscure diagnosis in one short hour.
What does that mean for patients?
If you think there is a problem, be as specific as you can with your symptoms. This is really hard when kids are the patient. They often can't describe what they are feeling in significant detail. Write down any possible associations that you can come up with and have your physician review the list with you. If your physician doesn't come up with a source or diagnosis, keep asking questions if you are still worried. (Don't take 15 years to sort things out with a human body!) If you don't find answers despite persistence of symptoms, ask for a second opinion.
Sometimes what worries parents and patients really is nothing to worry about. Maybe it's a common issue that needs no treatment (like a newborn rash or intoeing). Maybe what you're already doing is the best known treatment there is. Depending on the severity and duration of symptoms, more or less might need to be done. I'm not advocating for the multi-million dollar workup for every symptom, but if you think something's wrong, be sure to talk to your doctor about it! Make sure they hear your concerns and if they don't have an explanation for things, ask more questions to find answers.