I am in my sixties. Since my teens, I have had three unusual health conditions, baffling medical professionals. The first, endometriosis, was resolved in my early thirties after a hysterectomy and more than twenty years of pain. The second, which started in my late thirties, is still ongoing, undiagnosed, and unresolved. The third is my ulcerative colitis.
From the beginning of puberty, I was in extreme pain every month for the first few days of my very heavy period. Doctors shrugged. After all, pain with your period was normal! I was told more than once by a doctor to just take over-the-counter pain pills. A few months before I was married, at one of the happiest times of my life when everything was wonderful and in sync, while discussing my monthly pain symptoms, the doctor asked if I would like a referral to a psychiatrist.
Years later after two years of trying to conceive a third child, I realized there was more going on than painful, debilitating periods. I went to a gynecologist who ordered a laparoscopy to see what was going on. A year later I had a hysterectomy and spent five blissful years with no pain.
But then symptoms of the second not-yet-diagnosed condition appeared. This involved mild to severe muscle weakness and pain, brain fog to the point it took me almost twenty seconds to tell you what two plus two totaled. With really bad "episodes," I would go almost limp. Several times I had to have friends or neighbors help me to my house. I had a bad episode at a neurologist's office at the end of an appointment and sat listless in the lobby for an hour and a half because I couldn't drive home. The neurologist and his staff (except for one person behind the front desk) ignored me, despite the fact that I had the episode in the exam room in front of the doctor!
I've had more tests than I can count for this, but they all came back normal. Multiple doctors have told me to "come back if symptoms get worse." Oddly, potassium pills seem to help. I finally found a doctor willing to go into the trenches with me on this one when the third medical problem hit, ulcerative colitis.
UC may not be that unusual, but it took fifteen months from my first symptoms to my diagnosis. (Twelve from my first doctor's visit.) In that time I saw a family doctor, general surgeon, and gastroenterologist for a total of eight appointments and one colonoscopy, not counting multiple visits for blood tests and stool samples. For months, despite my insistent repetitions of my constantly worsening symptoms, the general surgeon said I had hemorrhoids. The colonoscopy changed his mind and he sent me to a gastroenterologist.
The gastroenterologist eventually diagnosed me with ulcerative colitis. But even then, at one point he said that my colon looked different than his other UC patients' colons. I could eat more foods. Stress didn't seem to affect my stomach. I was older than when most patients first experienced symptoms. My tests were all normal. The progress of my symptoms was almost a year, while for many patients it was months, sometimes weeks. Although he made an official diagnosis of UC and we are proceeding with treatment as such, there is still a "baffling" factor involved.
I have a great respect for all medical personnel. I greatly admire their years of schooling and interning, hard work and sacrifice to reach where they are in their careers. We would all be far worse without the medical community. And as I have a problem with bodily fluids and other people's pain, I cannot do what they do. Therefore, I admire them all the more.
But a lot of doctors cannot see beyond whatever box their medical world exists in. You've been in pain for years? It's all in your head. Your muscles go so weak you can't move for hours? Well, your tests are normal so you're fine. You have lots of blood and diarrhea coming out of your back end with intense cramping while sitting on the toilet? It's just hemorrhoids.
I realize that doctors are not all-knowing. I know that many are doing the best they can with the resources and time allotted to them, which are often far from adequate. But for decades, I have often felt trapped inside my doctor's box of conclusions, which only includes so much. If my symptoms/problems fall outside the box, and this includes tests that come back normal, I'm out of luck.
Some would say, "Find a new doctor." But again, from my experience, most doctors operate (no pun intended) within a box, so you basically go from one box to another.
Someday our technology may advance to the point that medical professionals will have tools similar to Star Trek's medical tricorders that exactly pinpoint what's wrong within seconds. But until then, I fear many of us will spend a lot of time trapped in our doctors' boxes, no matter what good intentions our good doctors may have.
© Colitis Senioritis 2023
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