The World According to Angela

When I was first diagnosed with Endometriosis, I was also being plagued by another incurable condition: PCOS.  I was prepared to hear PCOS, but was shocked to hear Endo, even though I should have suspected it given my history of unbearable monthly cycles.  After surgery to burn off the Endo and drill my ovaries for the PCOS, I felt better than I had in a long time.  Slowly but surely, and especially after the birth of my last child, the Endo has been rearing its ugly head once again.  It's finally gotten to the point of unbearable once more.

There is a certain about of sanity you start to lose when you are in continual pain.  For more of the month than not, I will have some degree of cramping or discomfort.  When it's really bad, it's better described as my insides being on fire.  I suppose there isn't much normal about bleeding internally, which is basically what happens with the Endo, and it's really hard to live with; especially hard when you have a household and four young children.  It's next to impossible to convey how it feels to be in pain for so much of your time.  It's not something people can see from the outside.  When the pain is so severe it has me reduced to tears, I can't point to something visible and say: "look, here is what is hurting so badly."  There is a certain amount of visual evidence I could produce, but that borders on the line between embarrassment and humility.  When I just feel completely wiped out and drained, no doubt from being on the anemic side, there isn't any accurate way I can convey how difficult it is to even function or form a thought.  Sometimes I feel like I'm trapped in my own little hell.  I mean, I look normal enough, how can I feel that crappy so much of the time?  I really can't make anyone understand, and it makes me feel so weak to have such a problem.

Treatments for Endo are mostly geared towards the hormonal side.  Take one of the forms of hormonal birth control methods, which will regulate your monthly cycle and usually make things bearable.  This worked for me when they put me on the pill as a young girl.  I wasn't diagnosed back then, but since the pill helped make my symptoms more bearable, that was that.  I tried going back on the same exact pill that worked for 7 years, but my system had changed.  We tried every different hormone combination, but none of them were tolerable.  In short, they made me crazy.  Seriously affected my brain.  That was not a better solution.

I lost my doctor who specialized in Endometriosis due to insurance changes.  I've been trying to find a replacement, somebody who can help me.  My regular OB is out of options, and he wants to move to Lupron therapy which is riddled with side effects.  This isn't a good idea to me.  Endometriosis is still somewhat of an unknown; there still is no cure since they do not know what causes it.  Thankfully, with yet another insurance change, the old doctor is once more in the plan.  I have my appointment one week from today, and it can't come soon enough.  I cannot continue down this path any longer.  I am scared because I feel I've hit a wall, but relieved that I am seeing a doctor whom I trust, and one who specializes in this area.  At this point, if it means surgery number nine, I don't even care; I just need to feel human again.

When I first received word of this diagnosis, my biggest fear was being unable to have children.  Luckily for me, I have four healthy kids.  My family building efforts are complete.  Now my biggest fear is living the rest of my life in pain.  If you don't mind, please keep me in your thoughts next Monday afternoon.