Test Subject 521-002

Endometriosis and I have been together for a long time. I was diagnosed at 16. I'm 34, almost 35, so I have now lived longer with it than I have without it. I honestly can't remember what it feels like to feel "normal" or even "good." I emphasize those terms because they take on different meanings when you have a chronic illness that causes almost constant pain on some level. BUT, that's not what this blog is about. I'm not here to complain. Not here to ask for your sympathy. I'm just here to tell you about my experiences and hope that I can bring comfort to you, give you someone to relate to, or even, hopefully, just give someone some hope. Because I know endo can make you feel hopeless. I know it very well. And that's how this whole journey begins.

A few months ago, I was contacted about being part of a study to test a new drug designed to help reduce endo pain, and the timing couldn't have been better. That call came in October, after we (my husband, who is a saint for being so amazing through all of this, and I) had reached a point where we felt that the doctor wasn't listening to my complaints anymore, wasn't making a genuine effort to treat me, wasn't taking my pain level seriously, wasn't listening when I said, "I know these are also symptoms of other things--can we please just run some tests to rule them out and ease my mind?" So, we spent the summer researching endo specialists and clinics. It was a bit overwhelming. Then, a friend in a support group referred me to the Center for Endometriosis Care (CEC) in Atlanta because they would perform a free medical record review for me. I contacted them, and they approved the review, so I submitted my medical records. I felt hopeful for the first time in a long time--hopeful that I could feel somewhat normal (whatever that means) again, hopeful that I could be intimate with my husband without pain or the constant fear of pain, just hopeful that relief was possible. AND THEN, I got a phone call from a doctor at CEC and we had a conversation and he listened to me and he said he could treat me. I was over the moon. I saw not only relief but an end in sight. AND THEN, a CEC surgeon called me, and we had a conversation in which he outlined exactly what could be done. I felt so confident that this was it; this was the end of this curse they call "endometriosis." AND THEN. AND THEN. AND THEN. The financial office called me. They explained how the CEC is an out-of-network provider for all insurance companies. They explained the reasons why, and I get it. I do. But they also explained that in order to begin treatment, in order to go ahead with the surgery, I would need to pay $8,000 up front for self-pay or $10,000 (my out-of-network deductible at the time) up front if I decided to file it on my insurance. And that's not including any fees from the hospital. Conveniently, I was soaking in the bathtub when I got that call. I hung up the phone, dunked my head under the water, and seriously considered never coming up. There was just no way we could come up with that kind of money. Not to mention the other costs associated with traveling to have the surgery and the hubs taking so much time off work. I'm a realist. I knew that. I honestly dunked my head and never wanted to come up. I only did because I thought of the other people in my life, and then I called my husband and he talked me all the way down, convinced me we would find another way. I didn't think we would, but his hope gave me hope. Then, about two months later, out of the blue, I got the call about the study.

I went to the first appointment, during which they described the drug and the trial to me in detail. I would have to go through a pre-screening process of 45 days. During those 45 days, I would undergo bloodwork and an array of tests to ensure that nothing else was going on--something I had asked my doctor to do to no avail--and that fact alone made me want to participate even more. I would also have to log my daily experiences in an e-diary every night (turns out the hardest part of pre-screening is remembering to do this...). If I successfully made it through the pre-screening, I would be approved for the trial. However, IF you pass the pre-screening and IF you are approved for the trial, there is a small chance that you will receive a placebo instead of the actual drug, at least for the first year (it's a two-year trial). But all "test subjects" (for real, though, maybe just call us "patients"?) receive the actual drug during the second year of the trial. So, I figured, What the hell? Even if I receive the placebo for the first year, what's one more year dealing with endo? I've been dealing with it for 19 years now. Seriously, what's one more year? Especially if I'm guaranteed to get it the second year. So, I went for my last pre-screen appointment today, and guess what?? I'm approved. Apparently, I 'm also the first person from this test site to make it this far in the trial. I got the first dose of the drug this morning, and they sent me home with my first month's supply. Even if it is a placebo, I actually feel truly hopeful right now. Just hopeful that there may be some light at the end of this long, god-forsaken, sexless tunnel. Maybe I'm wrong. Hopefully I'm not. But I'm starting this blog to document my experiences in the trial, my experiences with endo, and maybe just my experiences with life along the way. Join me.

Yours,

Test Subject 521-002