How Many Tests Does It Take?

Before this whole experience, I held the very naïve point of view that doctors had all the answers.  I thought the process was: get sick, go to doctor, take pill, get better.  That’s how it works, right?  Doctors are educated, trained, experienced.  They have the answers.  That’s why I’m ok paying them so much!  While I do still believe that doctors are wonderful, talented people, unfortunately I no longer believe they have all the answers.  Sadly, they’re human just like the rest of us. 

I saw a lot of doctors while I was suffering from my nickel allergy.  Some in the Emergency Rooms, some who forwarded me on to specialists when they had no answers, some who were ignorant and should never practice medicine at all, and some who were helpful and supportive through the entire process.  Every doctor had a different take on what could be wrong, with a different set of tests. 

The first procedures I had were in the emergency rooms.  Each ER visit meant a CT Scan to test for appendicitis or an abdominal issue.  Next would be a transvaginal ultrasound.  (I realize that’s a buzzword these days in the news – without getting political here, I can firmly attest that they are NOT PLEASANT!)  I’d get an IV, and they’d take more blood samples and urine samples.  Everything would come back clean.

Next was a trip to the Gastroenterologist, to check out my stomach.  There I was scheduled for an endoscopy.  An endoscopy is a procedure where, while you are sedated, the doctor inserts a tube down your throat into your stomach.  The tube has a little camera on the end, and they take pictures of your insides.  They also take samples for a biopsy.  Results came back clean.  (I ran a fever and was hoarse for days from the scratches the tube left in my throat).

Next was an ultrasound appointment.  Results came back clean.  Along the way, there were a few x-rays, a few more ultrasounds, and so many CT Scans that my chart is now marked to NOT give me any more because I’ve reached my limit of radiation exposure for one lifetime.

Now I’m on to the OBGYN, because no one has any better ideas.  Here I get another internal pelvic ultrasound, and the doc tells me it could be endometriosis, but the only way to know for sure is through surgery.  He proposes an exploratory laparoscopy.  In this procedure, they actually cut into your abdomen, insert a camera or two and look around.  A few weeks pass, and I’m getting much, much worse.  The entry in my pain journal that week, on my birthday, says, “I’ve hit the end of my rope.  Can barely function.”  I call in and agree to the surgery. 

Surgery is not fun, as you can imagine.  It’s minimally invasive, but it still takes a few weeks for me to recover.  The good news is they do find evidence of endometrioses, and the doctor thinks that could be what is causing my illness.  He also removes my appendix – just to be on the safe side!  My husband tells me all this when I first wake up.  Finally, I think, I have something to fight!  My illness has a name, and damnit, that means something!  The bad news, I later learn, is endometriosis has no known cause and no cure. 

I can’t explain the heartbreak that came with that diagnosis.  There was nothing to fight; no way to get better.  I read dozens of books on the subject, scoured the internet, and learned as much as I could, but the only known “cure” is a hysterectomy, and I was much too young to consider that an option.  The remaining option was learn to live with it.  With this diagnosis, it seemed I would be looking at a lifetime pain, with no relief, at least until menopause.  

That ended my round of tests.  With a diagnosis, there was no point in subjecting myself to more pokes and invasions.  I had exhausted my available doctors as well.  Once an answer was provided, I couldn’t get any more referrals through my insurance.  Now my focus would shift to learning how to cope with the illness.   Luckily, this path of coping, surprisingly enough, would lead me to have my braces removed and discover the real diagnosis.  I know now that I was not suffering from endometriosis; it was my braces making me sick.