Monday, March 5, 2012

Endo Awareness Month: Physical Side

I confess...I'm not really feeling up for writing these days.  Which says a lot.  I've been having intense lower back pain and am really upset by it.  I'd stopped all pain medication and it became immediately clear that my pain was managed but not truly fixed.  I'm waiting on a referral to a pain management doctor and spending much of my day in bed.  I didn't even do that in the immediate post-op period so it says a lot that I'm skipping workouts and spending most of my time lying down.

But that's not what I'm coming to talk about.  As part of Endometriosis Awareness Month, I'm participating in a group effort to educate the blogosphere about the condition.  Each week will have a topic and I'm going to try to post on Mondays.  I apologize that this post is not better deserves more energy than I have to give right now.

This week's topic is the physical impact of endometriosis.  From the time they started, my periods were always very heavy.  At first, there was minimal pain but it seemed to creep upwards each month.  I began to find myself with severe pelvic pain each month but I simply assumed it was "normal" and something I had to live with.  The pain got severe and eventually became all month-long but I still didn't speak up.  And then it got bad enough that I passed out in my office.  I was put in a cab and taken to the doctor.  Endo was suspected from the start and I simply knew it was the culprit but we ran countless other tests first since endo can only be diagnosed via surgery.  I remember coming out of surgery and feeling a mixture of relief and fear when the endo was confirmed.  I wasn't crazy and I had a name (a huge mental comfort), but it was an incurable condition and one I'd be facing for many years to come.

Endo can be managed, but not yet cured.  I've been on continuous birth control for years.  I don't take the week of placebo pills and thus don't get a monthly period.  For a while, I did take the break week once every four months but I'd end up bed-ridden for at least a couple days.  Finally, my doctor said to just abandon it.  I've had three surgeries which have provided some relief in the short-term but it seems determined to come back. The pills do help control things but the pain still breaks through sometimes.  I can't really predict when it'll happen but I usually have pain at least once a week.  If I miss a pill for any reason, I know the pain will follow.  Even when I take the active pills daily, the pain can rise to an eight on a scale of one to ten.  I've described it as a giant hand reaching inside me and squeezing and twisting everything below my belly button.  At times, it gets bad enough that I essentially pass out....sometimes I actually start hoping for that last notch of pain so I can "go away."  It isn't quite fainting and isn't quite sleep, it is just my mind giving in and escaping my body.   

I can't fully explain chronic pain to anyone who hasn't loved with it.  I can put on a "people face" and look normal when I have to but it takes a lot of energy.  Living with the menace of pain is exhausting and hard.  It helps to know I'm not alone and that I have many other women fighting by my side.  We tend to look perfectly normal but we're coping with a lot.  I hope for all of our sake that we can one day find a cure rather than simply managing the symptoms. 


Jamee @ A New Kind of Normal said...

With each of my surgeries, I have in some ways breathed a sigh of relief when the doctor told me what she found. Every time I get worried thinking that they will open me up and nothing is wrong. At this point, I know its just a defense mechanism but I totally get what you are saying. To have a name to go with the pain does bring affirmation that we are totally crazy :)

EndoJoanna said...

With each surgery I kept hope that I would have longer periods of relief, alas, it always came back! Thanks so much for doing this, I really think it will help us and others!