January of 2010 initiated me into the life of a chronic pain patient. For sixteen months I plunged into a diagnosis journey that brought with it ten misdiagnoses by eleven respected physicians, fifteen procedures and tests, twenty-two medications and crushing pelvic pain.
People have asked me if I am angry about it all; the misdiagnoses, prolonged pain, time spent, needless tests and sometimes painful procedures. Anger is not the presiding feeling, fear is. Fear that doctors are not as skilled with the art of diagnosis as we might think. I do believe that ten out of the eleven physicians I saw tried their best. They were looking for common ailments, not zebras. But by the time I got to the ninth specialist, fear choked my hope for an accurate diagnosis and treatment plan and accelerated the idea that I might have to live with the pain for the rest of my life. A couple of physicians actually suggested that I adjust to the pain and just live with it. I had things to do, a second book to write, a daughter to take care of. I was not going to give up.
In the end I stumbled upon my own diagnosis in a New York Times article, In Women, Hernias May Be Hidden Agony. As I read about a woman with chronic lower abdominal pain exactly like mine, I raced to the phone to find the surgeon and hernia specialist who had cured her. I found that surgeon all right, and luckily for me she was located at a highly respected teaching hospital in my city. She accurately diagnosed me with a thorough exam and high-resolution dynamic MRI and performed three-hour surgery to repair my inguinal hernia with a nerve passing through the hole and a muscle tear with nerve involvement at my C-section site. I’ve been pain free for over two years. I am immensely grateful to her.
What I’m left with is not so much anger at the physicians who got it wrong and prescribed unnecessary medications and performed unnecessary treatments such as bladder installations and steroid injections into my pelvic nerves, but a deep fear that any physician I see might not diagnose me correctly. Every time I go near a doctor’s office, fear cooks my confidence and I wonder if I will be helped or left to find my own diagnosis, again.
Logically, I understand that the physicians I saw were mostly specialists — they were focused on their specialties, whether gynecology, urology, neurology, and others. And hernias are rare in women. But I can’t get past my knowledge that physicians don’t know absolutely everything, that medicine is not a cookbook. It doesn’t help that I’ve interviewed over 400 physicians, nurses, other medical professionals and patients for my books.
In those interviews, I heard directly from doctors about how they felt about their patients, about practicing medicine and healthcare. While frustration wasn’t at the top of everyone’s list, it was certainly up there. During my chronic pain condition I didn’t want to be one of those patients who was dismissed or disliked by doctors so I acted accordingly. I did everything I could to support their efforts to arrive at an accurate diagnosis and treatment plan, including coming prepared to office visits with pertinent medical records, symptom diary, my list of questions, top three medical concerns, list of medications, and more. I was prepared, professional and polite. I was determined not to be seen as a “difficult patient” or allow any of them to think the pain was all in my head.
Whether it was the lack of time in office visits, focus on specialty or simply a lack of knowledge about hernias in women, I came away from that 16 month diagnosis journey profoundly afraid that doctors might not really have a grasp on the art of diagnosis unless the diagnosis is fairly common and they’ve treated it before.
Misdiagnosis is common. According to the Society to Improve Diagnosis in Medicine, diagnostic errors occur in 10 to 15 percent of cases, leading to an estimated 40,000-80,000 deaths annually in the United States.
How do I know if a doctor in my future will get it right? I don’t.
Martine Ehrenclou is a patient advocate and speaker. She is the author of Critical Conditions: The Essential Hospital Guide to Get Your Loved One Out Alive and The Take-Charge Patient.
