Today I had a follow-up appointment with Dr. Hamilton, my primary physician. I have seen Dr. Hamilton for years, and went to him back in January for the abdominal pain. He was the first doctor I saw about this pain. He is the one who got the ball rolling with ordering the gallbladder scans. When the abdominal ultrasound showed an enlarged liver, he ordered labs to check my liver function. When those were normal, his nurse told me that "Well, some people just have an enlarged liver" and that I shouldn't worry about it. I told her I was still having pain, and she called back and said Dr. Hamilton wanted to send me to a GI specialist, which he did (Dr. Spier).
I saw Dr. Hamilton once more throughout this process, back in February, but not for the abdominal pain. I saw him because I was becoming seriously depressed through the entire process. He prescribed me an anti-depressant and told me to keep seeing Dr. L (at the pain management clinic) for the muscular treatment.
Today's appointment was a follow-up for the anti-depressant, not the abdominal pain. He was sure that I was getting the care I needed with Dr. L (that's what he told me last time). When I went today, I took my surgery pictures. Below is basically how the conversation went...pretty much verbatim. I do want to preface this with saying that I have always really liked Dr. Hamilton, and I think he's a competent doctor. But just not in this case.
Dr. H: So, how's it going?
Me: It's going okay.
Dr. H: Not feeling as depressed?
Me: No, I'm feeling better. Remember all the abdominal pain I was having?
Dr. H: Yes. How's it going with Dr. L? Oh, and looks like you saw Dr. Haddad, a surgeon?
Me: Yeah, I did.
Dr. H: So you've sort of been taking your own medical care into your own hands?
Me: Yes, I've sort of had to. I had surgery on Monday. Dr. Jones, from Indy, did it.
Dr. H: Oh, really? Did she find anything?
Me: Yes, she did. (showed him the pictures). There is scar tissue on my liver, and I have what they think is endometriosis as well. These were found right where my pain is.
Dr. H: So how did she know to look inside?
Me: Well, it never made sense that this was muscular. I had told Dr. L that, and also Dr. Haddad, but no one would believe me. I even had my muscles lengthened and got no better. I took a round of antibiotics for a staph infection and noticed I was getting better. So I began to wonder about some kind of infectious disease. I saw an NP who prescribed me antibiotics for a vaginal infection, and I got still better. Then I learned about Fitz-Hugh-Curtis syndrome.
Dr. H: What's that?
Me: (silently) Oh great, he doesn't even know what it IS. Then went on to explain to him what it is.
Dr. H: Hm. Well, it's good you had that done. That scar tissue certainly can be painful. Now do you think you want to change the anti-depressant?
That's it? That's all you have to say? I wasn't finished yet.
Me: This was quite an experience, Dr. Hamilton. I've seen so many doctors--you, a GI specialist, chiropractors, pain management, a surgeon, and an OBGYN. Everyone kept telling me it was muscular when it wasn't. I just knew it wasn't and they kept treating me incorrectly. I had four rounds of coritsone injections that were completely unnecessary.
Dr. H: Well, we never want to do surgery unless it's a last resort.
Me: We were at that point, at the last resort, months ago. All of you were content to diagnose my problem as muscular. You were all finished looking for answers. I had to push to have surgery.
Dr. H: And why did you go to Indianapolis?
Me: I knew that, to get help, I had to get out of this town. Through this journey, I have learned that all of you know each other and will not question one another. I could get nowhere because every doctor knew what the one before him had said, and they all know each other personally. No one was willing to take a different direction.
Dr. H: Hm. Yeah, I can see that. But your CT scans, MRI, ultrasound--they were all normal.
Me: No, not entirely, they weren't. If you recall, I had an enlarged liver on all of those. Hepatomegaly with normal liver function tests is usually indicative of a liver infection, and specifically Fitz-Hugh-Curtis.
Dr. H: But that scar tissue on your liver could be from an infection that occurred years and years ago.
Me: But I've never had symptoms until NOW.
Dr. H: Yeah. So, on the anti-depressant....
And he was done talking about it. No apology. No desire to know how to prevent this from happening to someone else in the future. He didn't ask for the surgical report. He just moved right along to the anti-depressant. The underlying cause of my depression has been the utter incompetence of the physicians I have seen. But most doctors and, pardon my bias, particularly male ones, aren't so interested in looking for root causes. What a shame.
I will, of course, be finding a new doctor. A female one. Not just a primary one, but also a new OBGYN. I have endometriosis which needs treatment, and my OBGYN brushed me off when I even mentioned the possibility. I refuse to let my insurance pay people like that anymore. If I have to have a hysterectomy, it will be done in Indianapolis. I am planning to make an appointment with Dr. L--not for injections, but to show him my pictures. They will be faxed to him, but I want him to have to talk to me about it. I want to see if just one doctor will admit that the case was not handled appropriately. Had Dr. Hamilton been able to do that, he'd still be my doctor. But he just wouldn't.
I do not understand the culture of (male) medicine. It seems they are more interested in espousing each others' opinions--blindly--than in actually practicing medicine...the goal of which is to correctly diagnose and treat disease. Perhaps my experience is unique (I hope so but I doubt it), but for this to have happened to even one person is criminal. And I'm educated (in the health care field no less) and I have good insurance. What about people who don't have those resources? What happens to them?
I'm sure there are no data existing that demonstrate how often people are misdiagnosed and subsequently mistreated. How could that data ever be captured since so many people are never accurately diagnosed or treated? But think about all the wasted resources. We met our deductible--which is $3,000--in February due to all the scans, the colonoscopy, the injections. NONE of that was necessary. Maybe the first few scans, but none of the other stuff--certainly not the injections or the chiropractic treatment. And it led me to have to use anti-depressants. More money that could have been saved.
As a nurse researcher, part of my job is to research things that could save us money. Well, someone needs to research the experiences of people who have been wrongly diagnosed. The trouble would be accessing this population, but I think it could be done. Post-dissertation work!
Oh, I have to add that, right as I was finishing my appointment with Dr. Hamilton, he said "Oh, you've been losing weight. That's been intentional?" "No!" I nearly shouted. "I have been SICK FOR MONTHS." They just don't get it. It's not that they don't care, but they've been socialized in such a dysfunctional way that they cannot actually perform their jobs adequately. Health care in this country is a mess on so many levels. Thank goodness for doctors like Dr. Jones.