Case Report #7: A surgeon cuts, but a doctor listens (Case Reports from Kijabe Hospital)

Warning: This post is one of a series that describes a patient (case) that I have taken care of in Kijabe hospital, and it may contain graphic descriptions or photos of medical pathology written primarily for clinicians.  For my non-clinical readers, use discretion before reading, and please excuse the medical jargon. 

 

Here in Kijabe Hospital,  there is a large variety of patients and problems that show up in my clinic.  Many of the cases are routine, like old men with urinary retention and BPH, young women with goiters, and hernias, hernias, hernias.  Sometimes it gets a bit boring, and there is a temptation to emotionally disengage and just work on autopilot.  But just about every week, someone comes into my clinic with a very unusual problem.  A problem that I would never think a general surgeon should be assessing, but there aren’t that many doctors around here so sometimes, people are just seeking your opinion even when the problem does not appear surgical, but is “unsual”.    

Often, the diagnosis is not that difficult to make, it just requires that someone actually listen to the patient.  In Kenya (like America), clinicians often focus on the easily obtainable data: labs, reports, and previous notes, and don’t talk to patients, because of time constraints.  I always do my best to not fall into this trap, and I think I have made a few diagnoses that had been missed by others simply because I took the time to hear what the patient was saying.  GS is an example of a patient with a problem that had been undiagnosed for years despite his complaints, because no one had really listened to him.

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GS is a 16 year old boy who presented to Kijabe hospital complaining of abdominal pain for FOUR years.  According to the chart, he had been seeing doctors most of his life for various vague  complaints.  His past medical history was notable for having bilateral undescended testicles.  The chart also noted that he had a low transverse incision on his abdomen that was thought to have been from an exploratory surgery to find the testes.  The chart said the patient was non-tender, with no nausea, vomiting, or unusual bowel habits, but that he just had low abdominal pain.  He had labs including a complete blood count and liver functions that were normal and an ultrasound showing a normal gall bladder and no hydronephrosis/hydroureter.  After this work-up, someone sent him to me, thinking that I might want to explore him.  But most general surgeons hearing this case would be uninterested.  No signs of obstruction, inflammation, or even focal tenderness rarely adds up to a problem that is correctable with surgery.

Part of me wanted to toss the chart aside, and tell him to follow up with the internists or family medicine doctors, but I decided to be faithful to my training, and take a history myself and examine the patient. 

I asked the patient about his symptoms and he confirmed most of what was in the chart.  He had a normal appetite, no weight loss, no vomiting, no diarrhea, no fevers, no dysuria, or any other complaints besides four years of abdominal pain.  I thought maybe the previous operation had been the source of the trouble, but he had no documentation about the surgery, and could only tell me that it preceded his pain by some years.  Then, I asked him to describe the characteristics of the pain, and suddenly the clinical picture changed.  He said that he had been having pain in his lower abdomen every month for 4 days since he was 12 years old.  He said the pain came and went like clockwork every month.  Should sound familiar, especially to my female readers.

I quickly had him lie on the exam table.  His abdomen was in deed non tender, and soft…totally normal, but when I examined his genitals, I noticed his penis was bit small for a 16 year-old.  I confirmed that he had no testicles as the chart had said, but I took a close look at his scrotum. He really had no scrotum.  Instead at the base of his penis, he had what appeared to be large labia.  He also had a slight hypospadias (a urethral opening on the ventral penile shaft instead of the tip of the glans).  I stepped back to assess the patient again.  He had a soft voice, was short in stature (shorter than his mother), and he had some mild gynecomastia. 

After actually listening to his complaints, his physical findings made perfect sense.  He had been having pain for 4 days every month since he was 12 because he has a UTERUS.   His pain was worsened by the fact that he was not able to pass blood, because his “vagina” has no real entroitus…kind of like having a really thick hymen.  Now the group of disorders that can cause these types of presentations are beyond my general medical knowledge (ambiguous genitalia, pseudohemaphroditism, true hermaphroditism, mosaicism, etc), but fortunately me making the general diagnosis was all that was required.  Kijabe hospital has a group of pediatric surgeons who are much better equipped to counsel this patient on what should be done.  Now if his condition had been diagnosed as a baby, there would have been an option to try to make him into a girl (he essentially has a vagina with a hypertrophic clitoris), but he had been raised as a boy for 16 years, so psychologically, debulking his “penis” may not be a good idea, and I was happy that Dr. Heuric was willing to take this case on for me.  However, I did need to explain the diagnosis to the “boy” before I could refer him, and that was a delicate conversation to say the least.  As I explained to him and his mother, I told the him that he was not “cursed” and that God did not make a mistake…to not let anyone make him feel like he was less than human.  I told him that outside of Kijabe, he would be ridiculed, but the doctors here understand that it is a medical condition that can be treated.  I told him that we were happy to care for him, and excited that we could do something about his pain.  I shook his hand, and made sure he knew that we cared for him, and did not judge him for his condition.

Two weeks later, I popped my head in the operating room to observe his hysterectomy (as that was the plan that the pediatric surgeons and the patient decided was best).   Knowing what to do with the gonads is a little tricky.  Without frozen sections, we cannot be sure if they are testicles or ovaries, so they pediatric surgeons biopsied them and left them in, in case they are testicles.  (One gonad appeared to have an epididymis  associated with it.)   He may need yet more surgery, but I was happy to see that his problem had been taken seriously, and he was being treated to the best of our ability. 

Intra-op photo I took of uterus and gonads

In hindsight, I am very grateful that I was able to participate in his care.  I felt ashamed that I was initially upset about the referral, and reminded that patients are sent to me because they have a problem, and it’s not their fault if the problem does not fit neatly into one of our little specialty boxes.  Each patient encounter is an opportunity to make an impact in someone’s life…sometimes a major impact, and I should never become detached from interviewing and examining patients.  I am not just a surgeon who cuts whatever patient that is brought before me.  I am a doctor, and doctoring requires that I listen to patients, and treat each one as a valuable individual, not another chart in the pile that is keeping me from escaping clinic.  So I thank GS for restoring my perspective.  I did not even do his operation, so I can’t say I was his surgeon…but I listened to him, and I cared for him so I was something much more important…I was his doctor.

 

Yours in relearning compassion,

chad

 

“Difficult as it is really to listen to someone in affliction, it is just as difficult for him to know that compassion is listening to him.”

~Simone Weil