adenomyosis

“That’s just a word for ‘fibroids’,” my neurologist said at my first appointment with him summer.  He had been reviewing my medical history.

    A bit of an excursionary side note here:  I always feel vaguely guilty when I list my medical conditions and/or recurring symptoms – like I have no valid right to claim to have them, like I am heaping it on, like I am writing out the invitations to a pity party.  Or at least, that I will be seen this way.  Why ever would a patient experience those feelings, one might ask.  I can tell you, they didn’t arise on their own.  These are iatrogenic, at least in large part.
    I used to try to keep it to only things I had a diagnosis for, a name for.  “Endometriosis, GERD, Migraines, IBS-D”  That’s a short list.  Again, because of the response of doctors.  “Who told you have …..” was a response I heard one too many times.  Interestingly, I’ve heard it for two things with confirmation – endometriosis and Lyme Disease.  “Who told you you had Lyme?!” one doctor said in an abrupt tone.  And this is when I thank my lucky stars I had the forethought to take a picture of my lyme rash.  The endo was questioned until I could firmly reply “It was confirmed by laparscopic surgery”.  But until I could say that, it was considered by some doctors a questionable diagnosis.
    So I know from those two test cases that there is a good chance I will be questioned, sometimes rather ham-handedly, about what I put down on that form.

The neurologist was not the first to question “adenomyosis”, a diagnosis I was given in 2007 after my last lap for

illustration of uterus with multiple fibroid tumors

Fibroids, from http://www.nlm.nih.gov

endometriosis.  The first one was a GYN I tried out briefly.  “That diagnosis can only be made after hysterectomy” I was told by the stressfully thin looking impatient young doctor.  I told her that I was just reporting what my last GYN had said, that he had been the one doing the surgery, and that he had made the diagnosis based on imaging and his observations during the lap.  At this, she bristled with contradiction, as if I had personally insulted her.  Really, I greatly dislike this sort of doctor, well to boil it down -I dislike this sort of person but especially so when they are in a person-caring profession.  No one is as smart as me! seems to be their motto.  Needless to say, she did not remain my GYN long.  Moreover, her estimate for recovery time post-hysterectomy was an unqualified “2 weeks”.  No “every patient is different” or “it depends somewhat on what we’ll find and need to do when we’re in there”.  And this, ladies, is why I vowed never to go to another general purpose OB/GYN again.  Any OB/GYNs out there reading this who don’t suck, I apologize for painting you all with a broad, drippy brush but time and again in your offices, I’ve run into various versions of this soul scouring combo of ignorance, arrogance, and dismissiveness.  I’ve had it with the bad apples in your bunch who should just stick to pap smears, breast exams, handing out birth control, and perinatal whatnot.  I’ve had it with being a pinata for someone who decides to engage in a farce of diagnostic gynecology despite having a clear lack of preparation for that sort of thing.  It may come down to a flaw in the general OB/GYN training or it might have to do with a selection bias – too many of a certain kind of person who chooses to go into OB/GYN (babysniffers?).  Whatever the reason, the field is rife with men and women who do more harm than good with it comes to dealing with gynecological pathology in a general practice rather than referring the patient out to someone with more experience.

Illustration of a uterus with intramural endometrial infiltration, adenomyosis

Adenomyosis, from http://www.med.nyu.edu

Back to the neurologist’s comment.  It turns out that no, adenomyosis is NOT just another word for fibroids. They are distinct entities, with some significant implications if one if mistaken for the other.

And as for what I put on my medical history forms now – I still go back and forth.  If I’m feeling like this doctor needs to know everything, I list by name what has been confirmed with objective tests or impressions (and yes, that includes adenomyosis and migraine) and for the others, I write descriptive symptoms, e.g. “chronic joint pain” “chronic fatigue” “nausea”.  And mostly, these days I just try to avoid situations where I would feel uncomfortable doing anything else.

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