Daily Archives: May 1, 2009

End to Endo.

Late Thursday night a couple weeks ago, as is my norm, I was reading blogs. Most people sleep late at night, I read blogs. During that particular reading session, I came across a link to a bioscience company who is conducting a study on women who have been surgically diagnosed with the disease of endometriosis.

One of the single things in my life that has impacted me the most, has been that disease. There has been nothing, absolutely nothing, that has left me feeling more helpless and more like a freak show, than endometriosis. It won’t kill me, but the unpredictable pain, hormonal swings and resulting depression, oftentimes made me wish I were dead.

I don’t say that lightly.

It is one of the few causes I support financially every year. I suppose like anyone who suffers from something for which there is no cure, it has become my passion to support companies who research possible cures. For that reason, I registered around midnight that night with that company to be considered as a participant in their study.

I didn’t expect to ever hear from them.

Imagine my surprise when I discovered a voice mail left by a lady from their company late Friday night, less than 24 hours after I’d registered, requesting a return phone call. Imagine my continued surprise when I returned the call Saturday at noon AND SHE ANSWERED HER PHONE. Instead of introducing myself, I said, “My goodness, but you work a lot of hours!” To which she replied, “I guess you’re calling about the study… yes, the response has been absolutely overwhelming. Hundreds of women are coming forward to try and help. It’s not about compensation, we offer none. It’s about helping the younger generations that have this disease.” I told her that’s exactly why I was calling.

She asked several screening questions and then told me that she’d like to send out a packet, which requests my medical records concerning the diagnosis of and surgery for endometriosis. She said they also request some genealogical information, as they have learned that endometriosis can be passed down through the mother or the father. And, lastly, I would need to provide a sample of my saliva for DNA testing — they are looking for a commonality in all the DNA samples they are collecting. Something that they can eventually screen in DNA so that diagnosis of endometriosis can be made through a simple saliva test, rather than invasive surgery.

How cool would that be? A simple saliva test.

My endometriosis affects my intestinal system, so I spent a lot of time seeing gastroenterologists and having tests performed on my bowels. Today, knowing what the problem is, it’s quite apparent that the doctors spent a whole lot of time looking up the wrong hole.

Did you know that endometriosis has been found in little girls who’ve not even had their first period. Did you know that the average period of time, from the first complaint to actual diagnosis of endometriosis, is 10 years? Did you know that what women hear from their doctors until diagnosis is given, are things like, “it’s normal to have difficult periods”, or “that’s normal for some women, it’s just how you’re made,” or “it’s all stress related, you need to learn how to manage stress.”

I sent my packet off today.

The way I’ve got it figured, either I’ll be a tiny, tiny part (1 of 5,000) in helping future generations of girls and women suffer less, or they’ll be creating a clone of me from my DNA.

Probably the latter, because I’m just that cool.



Filed under Health/Endo