Friday, August 31, 2012

The Chance to Do Something Good

Still on the "pause" from the Wedding blogging, because something came up recently that I'm seriously considering.

I have the chance to do something good for women with Endo (like me).

A little minor history - Endometriosis was discovered in 1899. The first classification on it didn't exist until 1917, and the first paper on it wasn't published until 1921.

It's 2012, and we still don't have a cure. In fact, we don't even have a reason for it, or a treatment for it, short of cutting it out (it grows right back in most cases and often times the scar tissue does more damage than the Endo was doing in the first place).

I was diagnosed with Endometriosis as part of my oopherectomy (ovary removal for all you non-medical folks out there) in July of 2010. Due to a severe (genetic) scarring disorder, removing it would compound the problem exponetially.

Now, I wouldn't say my case is "severe". Endometriosis isn't the kind of thing that easily appears on an ultrasound. Usually it has to be surgically diagnosed and after by diagnosis, my doctor and I opted to avoid other surgeries as much as possible.

Often times, the most painful cases are the least severe. (Weird, huh?) Mine is periodically painful. It's the other gastrointestinal symptoms that are more bothersome to me on a daily basis. When it does hurt, the description of "someone wrapped a ball of barbed wire around my organs" is pretty accurate. Ever tried jogging with a ball of barbed wire in your lower abdomen? Not my idea of fun either.

So where am I going with all of this? Yes, it's more than just a basic run down of Endo.

 I recently qualified for an independent study on a drug that is designed to help women with the pain of endometriosis specifically. Usually, Endometriosis patients are religated to the usual list of "pain meds" - Motrin, Tylenol, Ibuprohen, Morphine (in extreme cases), etc. All of which work, sort of, for a while. But usually we end up just grinning and bearing it. (Well, maybe the "grinning" part isn't so true. It's probably more accurate to say we power through it and do our best to keep our cool.)

So that said, I was pretty excited to hear about the study AND that I qualify - even though an endometrial biopsy is required (YOUCH!!!!!).

The study lasts for a year and half, and requires particpants to use 2 kinds of birth control and particpants can't be on the pill. Well, my friend "the pill" and I parted ways a few months ago, so that's okay. My Sailor and I are looking forward to adopting (surprise!) next year (yeah!).  While we're willing to let nature take it's course as well, we know the odds of my body cooperating are very slim. He's yet to be tested, so for all we know, we're just having fun practicing all this baby making stuff. (TMI? Probably - but hey! It is what it is.)

So, while doing this study could really help other women who deal with the same pain, but it could postpone any chance of a bio kid for another year and a half (possibly longer, but that's optional at that point).  I'm sleeping on it at the moment. My Sailor is behind me whatever I choose to do, but I know he'll be disappointed if I opt to do it - not because I'll (hopefully) be in less pain, but because it'll push off/lessen the chance of us getting pregnant. Even afterwards, I'll be older (nearly 34) and that's really kinda pushin' the envelope - an envelope that may not have any sticky left on it as it is.

I can hear all you Endo Sufferers chanting "do it! do it! do it!" at your screens right now. Trust me, it's a serious consideration. And, yes, with Endo that can't be surgically removed (like mine) there is little chance of pregnancy anyway - and we're both big on doing something that really contributes to the world, so it's a thought. The drug they are testing is NOT intended to be a cure and I've been given zero information to make me believe that's what they are aiming for, but if it can provide reliefe, I can't help but think of all the good it can do. (As with any chronic pain, depression is a really common issue. Add to that infertility - and moods tend to get ugly. Taking away the pain won't take away the infertility, but it might help lessen the load. Nothing makes you feel more useless than being in massive pain, grumpy, and infertile - even if you don't want to get pregnant, it still sucks to have options taken away.)

So there you have it.


  1. Congrats on adopting. I'm sure it will be very rewarding.

  2. Wow! That is a big decision. I love that you are planning on adopting!
    I don't think this is an easy decision by any stretch of the imagination! There are pros and cons to both- isn't there always? I have so many friends/family that suffer from Endo. Good luck with whatever you decide. You are going to be an awesome mother regardless :)

  3. OH Jay - I do know lots about endometriosis, having worked in the OB/GYN field my entire life. I believe you will be an awesome mother, whether your child is genetically related to you or related by heart strings.

  4. Heart strings are stronger than science any day. ;)