What took me so long?

As I mentioned in a recent blog post, I have seen 10 doctors about my abdominal pain.  Some have been much more helpful than others, but I've found that none of them can seem to look outside their specialties.  The pain doctor thinks it must be muscular, because that's what he deals with, etc.  Another thing that I've re-learned (and I say re-learned because I've been a nurse for 8 years and have had my fair share of physician interactions) is that one doctor will not question another doctor provided they work in the same community.  At every doctor's appointment, I have been open and honest about which doctors I've seen, what they've said, etc.  I've found that, once a doctor hears what another one says, he (because I have not seen any female doctors) always agrees with the other doctors right there.  I have heard things like, "Well, if Dr. X thinks it's muscular, it must be."

Physicians play a vital role in this society.  We need them, and they provide great services.  However, there are some aspects of illness (which is different than disease) that physicians, in general, are horrendous at treating.  I was thinking about this yesterday, and something which was said to me by a very prominent and successful nurse researcher kept popping into my head.  This researcher was asked once, as she sat on a committee at the National Institutes of Health, "Nurses do research?"  "Yes," she replied.  "All that stuff that happens between diagnosis and death?  We're kind of all over that."  And "all that stuff" is messy.  It's not clear and delineated.  It's rough.  And it's what patients care most about--quality of life.  I've been part of research studies with patients with a variety of chronic diseases.  They don't care about their lab values.  They care about being able to do their daily activities, whether that be playing with their grandchildren or going to church.  For me, it's running.  The goal of my profession is to get people to a place where they are as well as possible, with well meaning that they function at or near their perceived capability level (Brenda Lyon, 1990).

With all that in mind, I went to see a nurse.  An advanced practice nurse, a nurse practitioner, named Michele.  She is a gyn NP.  I've seen her before, but not for this issue.  Every time I've seen her, I've been impressed with her thoroughness.  She not only talks to me, but she listens.  She welcomes ideas from ME.  So I saw her this morning.  I told her the whole story, and she took notes.  I showed her articles that I've found online that I think could potentially explain my pain.  She read them and made copies of them. When I told her "They say it's muscular but it doesn't hurt me to do crunches or to pick up my son, it only hurts worse when I'm walking a lot or running."  She said "Well, that can't be just muscular.  Something has to be pulling."  She asked me the simple question of "What makes the pain worse, and what makes it better?"  We are taught to assess pain in this manner in the very early semesters of nursing school.  This is the first time, throughout this entire process, that I have been asked those questions.

She came to the conclusion (the same one I've had) that the key aggravating factor is gravity.  Not use of my abdominal muscles.  Gravity.  She asked me if I had seen a surgeon, and I told her my experience.  She told me she didn't know what it was, but that she 1) believed me that the pain could get severe; 2) understood how this is affecting my overall quality of life; 3) thoroughly believes IT'S NOT MUSCULAR; and 4) is going to try to figure it out.  Now, doctors have told me number 4 as well.  But they're not like nurses.  When we say we're going to investigate something?  Look out.  Well, I'm a case in point.  I've done hours of research about this.  A physician will generally only look in his/her area of expertise.  And this is not a fault on their part--it is how they are trained.  Nurses, however, think holistically.  And they consider everything.  So I'm feeling better with a nurse on my side.


She did a pelvic exam, which revealed some uterine tenderness.  She also drew some labs (no one else has done that).  I have some symptoms/evidence of pelvic inflammatory disease, which is usually caused by STDs. Well, I'm happy to report I have none of those--nor have I ever.  She explained, though, that PID can be caused by other bacteria that normally exists.  Sometimes, the infection of PID can spread upward, and usually lands on the liver and diaphragm.  So, she is treating me with antibiotics.  I will also have a pelvic ultrasound scheduled.

It was a worthwhile visit.  It's given me some mental piece.  Finally, someone with some authority agrees with me that it's not muscular.  I'm sure she'll be discussing the issue with the physician with whom she works as well.  All I need is for a doctor (or APN) to acknowledge that I've been misdiagnosed.  I think I'm going to get that.

On my way home, reveling in how wonderful nurses are, I got a phone call.  Three weeks ago, I made an appointment with Dr. Steiner at Orthopedics of Southern Indiana.  He's a very good sports medicine doctor and very hard to get into.  I actually had considered canceling the appointment or rescheduling for after Eugene.  Turns out I didn't need to. 

When I answered the phone, it was the secretary from Dr. Steiner's office.  She was calling to let me know that Dr. Steiner wouldn't be seeing me because he doesn't deal with the abdomen.  Ummm...okay.  So I said "Do you realize the pain is much exacerbated when I'm running."  "Yeah, but he just doesn't deal with the abdomen.  And his nurse said he wouldn't want to see you, okay?  I'm sorry, have a good--"  I cut her off.  "Okay, so to whom is he referring me, then?"  I couldn't believe what was happening.  She was calling me, two days before my scheduled appointment, which was made 3 WEEKS AGO, to tell me that the doctor has decided not to see me.  On top of that, he had no suggestions as far as what I should do.

She told me to hold on a minute.  As I listened to the stupid hold music, I became infuriated.  I am so sick of being treated like this, and I am so angry that it happens to other people far more vulnerable than I am.  She came back on the phone and said, "No, his nurse said there are no referrals to make.  It sounds like you've seen every doctor in town anyway."  At that point, I said "Okay.  I just want to repeat what is happening here to verify that you agree.  You are calling me two days before my scheduled appointment to tell me that the doctor will not see me.  You are telling me that, though he is board certified in sports medicine, and my condition is extremely aggravated by running, he will not see me.  You are telling me he has no suggestions as far as what kind of doctor I should see.  You are telling me that, basically, my situation is hopeless."  She was silent, and then said "Yes."

I proceeded to thank her, and went on to tell her that, as a very serious runner, I know all the runners in town.  In addition, I've been injured a lot and runners come to me often asking for doctor recommendations.  I ended by saying "Guess who's on my black list now?" and I hung up.  I was incredibly angry.  This is not the way people should be treated.  I guarantee you--were I a male elite or sub-elite athlete--I would have been seen, no questions asked.  But they've labeled me--a woman with vague pain who is doctor shopping.  Well, that's a can of worms they shouldn't open.

Next, I called back and left a voicemail for his nurse.  I will continue calling her every day until she answers or calls me back.  I cannot believe how the staff at Orthopedics of Southern Indiana treated me.  I can totally understand him saying, during my appointment, "I just don't know if I can help you."  But I don't understand contacting me two days before my appointment.  An appointment made almost a month ago and which precluded me from making an appointment with any other sports medicine physicians....who actually treat sports-related pain.  I will be writing a letter to the medical director of the clinic (whom I sort of know).  And I will be using their actions as an exemplar to my nursing students of how NOT to treat patients.

Oh, and I ran 7 miles today.  Pretty good run.