05 March 2010

Endometriosis Awareness

I have an email in my inbox reminding me that it's Endometriosis Awareness Month, and when I stopped to think about it, I realized that I've been living with Endo for 10 years now.

When I was first diagnosed, I honestly thought that it was a terrible blow.   I had a chronic disease (that hurt like hell) and it was never going to go away.  I felt sorry for myself, but at the same time I did everything I could to make my life better.  In 5 years, I had 3 laparoscopies, Started and ran a mostly unsuccessful support group, did more research than you can shake a stick at, and the end result was that I spent a lot of time taking pain medication, and I still hurt.

Then - I gave up.

Or more honestly, I stopped thinking that anything would change, and I accepted the way things were.  I continued to take pain medication as needed, but I mostly ignored the whole problem.  I went through several birth control options, as well as no hormonal control at all, and finally found something that worked for pain when I went back onto birth control when I met my husband.  It made me extremely PMSy, but I suddenly I was living in a world of light, short periods.  A world where I could get through with only Advil.  A world where I didn't have to dread the coming of my period because it was miserable, but instead only because I had to abstain for a few days.  Wow.

Then - we decided to try and have a baby.

It's amazing how quickly we forget unpleasant things - like how bad having a period was before we found a birth control pill that worked.  I slowly fell back into the monthly cycle of dread, except that it was mollified by hopeful anticipation that maybe I would be pregnant, combined with the new dread that I wouldn't be, and an increasing feeling that our inability to conceive was due to my endo.  When we first started trying I was able to get my hormones checked, and I had a HSG to make sure that I still had good tubes (and one of them was, the other one was inconclusive).  Until only a month ago, I was still looking at how to time another Lap to increase our chances (and not incidentally - grant me some pain relief for a while).  I felt responsible, every month when Jakobe apologized for not getting me pregnant, for wanting a baby and my body failing.  Endo sucks - it makes you doubt your ability to do one of the more basic things in life, and it makes you feel physically poor at the same time.

In the larger picture - Endo certainly wasn't the end of the world.  I learned to cope and I am a generally happy  person despite it.  But - it's something it would be nice to be able to put behind me.  A cure - or at least an effective, long term, conservative treatment that doesn't further interfere with fertility (or even, just maybe restores some of it) is a dream I can get behind.

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