The upside of Cowden’s Syndrome

Well, to be honest, there isn’t really an upside of Cowden’s Syndrome.  I mean, you can have a brain tumor, or get breast or colon cancer.  But, one of the less “serious” issues of CS are these mouth bumps.  I’m not sure the technical name (you can Internet search it); if you search for “Cowden’s Syndrome tongue” you will get an eyeful.  In fact, now that I am typing this, I’d recommend you don’t do that.  It’s not a pretty picture.

Anyway, I have this huge bump, thing, growth, whatever, on my tongue.  HUGE, to me, is the size of a small mountain.  And, when it’s on your tongue, getting irritated when you eat certain foods, it’s not pleasant.  It bugs me.  It irritates me.  I can feel it all the time.  It rubs on the inside of my lips, etc.  But, in all honesty, it’s 4 mm. 🙂  I don’t care about technicalities, though.  It’s a pain in the butt!  Actually, I have 2 of these bumps on my tongue, and 2 on the inside of my mouth.  So, then there’s that.

I had 1 of these bumps right after diagnosis (Fall 2011), and I know I need to see the ENT doctor to get these taken care of.  So, I called the ENT office last week to schedule the appointment.  Of course they said I had to go back to my Primary to get a referral, etc.  I hate bothering my primary doctor and taking her time, but I guess she wants needs to see what’s going on with me.  And, I hate getting the run around, (or at least feeling like) I’m getting the run around.  See this doctor, then wait.  Then we will call you to schedule.  Then wait some more.  Urg.

You know, if Cowden’s Syndrome was just these mouth bumps, it wouldn’t be such a bear to manage.  🙂

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3 thoughts on “The upside of Cowden’s Syndrome

    • I used to get the run around all the time before diagnosis – and now, while it seems to make sense (with Cowden’s Syndrome and Lhermitte-duclos Disease) the run around CONTINUES. URG. 🙂

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