Tuesday, February 01, 2005

Let Me Tell You About My Fibrocystic Breasts!!

Why, why, why, why, WHY can’t caregivers spell things out for us laypeople? Is it so hard to share the name of a health condition or explain how symptoms relate to a disease?

A recent example: Roughly a year ago I began having tenderness in my left breast. I watched it for a few months and noticed that though it was always present at some level, it was much improved in the days after my period. I mentioned this to my doctor. He did a breast exam and said he felt nothing to be concerned about, but referred me for a mammogram to be safe.

At the breast clinic they did a thorough manual exam. The woman doing it said she could definitely feel “some nodularity.” My heart rate shot up. “What does that mean?” I asked. “Oh, it could be anything. It’s probably just the way you are. Let’s do the mammogram and the radiologist can tell you for sure.”

[Aside: Malcolm Gladwell, one of my favorite contributors to The New Yorker, wrote a great piece about the fallibility of mammograms that makes me take any imaging report with a grain of salt.]

After the mammogram and the nauseating, awkward minutes sitting in that waiting room with all the other women in matching green hospital tops, some of whom may be there for routine mammograms, others who may be about to get some terrifying news, others who are about to have their day made – but you DON’T KNOW WHO IS WHO and so you stare at your crappy magazine with intense concentration…

…the woman called my name and took me back into the room and said everything looked fine. She handed me a piece of paper that said I should get another mammogram in 5 years and headed for the door. “So, about the pain?” I said. “It’s just you,” she replied.

Um. O.K.

So the symptoms have persisted pretty much the same as they were when I made my enlightening trip to the breast center.

Then last night I’m on-line looking up information about Evening Primrose Oil because I want to blog about its efficacy in cervical ripening. Only in one piece “breast pain” catches my eye and nearby are the words “fibrocystic breasts.” Really?

I surf around. It becomes abundantly clear that fibrocystic breasts explains (at least part of ) what is going on with me. I have fibrocystic breasts. Can I say that again, please? I have fibrocystic breasts. It’s not “just me.” It’s a whole lot of women. It’s very common between 30-50 years of age (I’m 35) and it almost always resolves with menopause.

So why was this label never given to me? It would have allowed me to learn more about this condition. I like to understand what is happening with my body. I think most people do.

A similar thing happened with my hyperemesis. For three years I thought I had just been cursed with uniquely bad morning sickness. I mean, I was cursed with bad morning sickness. But it turns out it is a medical condition. It has diagnostic parameters. Web sites exist to help you try to treat it. You can tell your freaked out family that your state is something known to medicine.

Anyone who works around or has been through pregnancy sees this happen all the time. “The baby is a little tachycardic.” “If you pass a clot bigger than a quarter call us.” “You have ketones in your urine.” What does this mean? Please tell us. We name our babies; why shouldn’t we be able to name our maladies?


Blogger Sage Femme said...

oh, no....then you'll want to take on trying to cure yourself and really, where will all the doctors be then, eh? just stop looking up your symptoms on the internet. everyone knows that the only reliable diagnosis can come from a MD that is spending three minutes with you.

caffeine is a big no-no for fibrocystic breasts. just a fyi. ;)

mammograms. ptooey.

11:47 AM  
Anonymous Anonymous said...

i had the same thing happen but with vaginismus, i went to the gyn, it was very painfull i asked a lot of questions about verious problems i had, she said i was normal and healthy just to tense, then a few weeks later i somehow found a web page all about vaginismus, i ended up emailing my reguler doctor about it, and then she called me on the phone and it was very good, but i will never go back to that gyn again

12:53 PM  
Blogger doulicia said...

Anonymous, Glad you found some answers!

Sage Femme, thanks for the caffeine tip. I'd been "clean" since my last pregnancy 3 years ago, but lately I've slid back into a nip 3-4 times a week. I do love my Mountain Dew...but I can drink caffeine free just as easily.

12:47 PM  

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