Saturday, March 1, 2014

Endometriosis Awareness Month 2014

March is Endometriosis Awareness Month.

If you know me, then you know at least one person who deals with this chronic who only chased it down after passing out from the pain and after the pain became month-long (myth 1 - endo only hurts when a woman has her period).  It was a pain that took my breath away and eventually, at night when it wore me out, I'd hope for it to get a smidge worse so that my mind would float away (myth 2 - it's just cramps, all she needs is a couple midol).

I was "lucky" docs heard me and although they did a ton of other tests first (myth 3 - you can diagnose endo in an office takes surgery, although there's a possible improvement on the horizon that is being tried by a few very specialized docs), they had endo in their minds earl due to a thorough patient history and were willing to do the laproscopic surgery and get a diagnosis.  It's mostly managed.which is impressive since it is getting through all my back pain meds too (no idea how the endo would be without the constant pain mgmt routine for the back)...but there are still bad, very bad, days (myth 4 - there's a cure).

Endo can be disabling.  It can take away MUCH more than a woman's sex life, though that is often the first area to suffer (and is a big deal itself).  In addition to the patients, it impacts the partners, children (myth 5 - all women with endo are infertile.  truth is that it is a leading cause of infertility but most women with endo can have a child, a fact that does not at all take away from the very intense pain of infertility), families, friends, bosses, colleagues, and the whole society b/c it makes SO many women less than they could be if they were healthy.

(myth 6 - there's one 'endo experience') Every struggle w/ endo is different.  Some involve pain, sometimes debilitating pain.  Some are painless but become a focal point when fertility issues bring it out.  Some women's insides are covered with growths, some have few (myth 7 - the amount of endo is tied to the amount of pain.  truth is you can have insane pain with a small growth if it hits the right nerves).  Endo is individual.

Endo needs AWARENESS.  Endo needs ADVOCATES of both genders.  Endo needs better TREATMENTS.  Endo needs a CURE.

Other posts focused on endo include:

And sending a big hug to Jamee (prior blogging group organizer) who has been battling so many health demons of late.  Take care of yourself, get some answers, and feel better!

1 comment:

Emilie said...

I loved that you mentioned that endo needs advocates of both genders. That seems to be hard to come by, unless they're the significant other of an endo patient. Male ER doctors, even the ones who know something about endo, seem to think it's just "bad cramps" and question why I'm there instead of just taking Advil at home. The research just seems to go down rabbit trails because docs seem to think if it has to do with a woman's reproductive system, there's no real logic or root cause behind it. I've had more than one doc dismiss me saying "women's bodies are complex," only to find out later an irregular cycle that bothered me signaled something like a cyst or an infection. We definitely need more education and sensitivity across the board, and research to back it up!