November 3, 2007 § 3 Comments
Yesterday we went for my appointment with my Endo specialist. We talked about the latest ‘episode’ and well, it turns out he has had a few patients complain that their 3 month injection of Lupron didn’t last more than a few weeks recently. What did we have in common? Our injections were manufactured in a Southern EU country. Lupron is horrifically expensive and pharmacies are free to purchase supplies from anywhere in the Union- and this particular country is cheaper. Doctors are helpless to do anything about it so we will have to find a pharmacy that carries Lupron only produced and packaged in the Netherlands. Nice. I will be drafting a letter to the pharmacy and hopefully they will understand the repercussions of their actions and consider quality over saving money. It was good to know that my body wasn’t suddenly resistant to the drug but at the same time incredibly frustrating that my treatment was disrupted like this and I spent a week on painkillers.
As far as further treatment goes, there are not a lot of options left. Let me rephrase that: there are no options left. It’s strange. I’ve known for a number of years that because my Endo has been so aggressive, and I’ve had so much surgery, that the chances of there being a miracle way of taking care of it for good were slim. So why did it still hurt when my doctor basically said there’s nothing more we can do? We discussed the option of removing my only remaining ovary, but he is not encouraging it. The result of the surgery would be the same as how I feel on Lupron, except once my ovary is gone there’s no turning back. There is such a small possibility that it will change the course of the effects of the disease that he doesn’t want to do it. He said that as much as he understands why I want to consider it, he is more concerned with the emotional ramifications. It was hard enough to lose one I can’t imagine having none. On the other hand I hate this drug. I hate taking something so strong and I hate having to depend on it. I’ve been a slave to it for the past few years as it’s the only thing that controls the pain, but I just can’t stand it. I also can’t continue taking it without breaks anymore, nor do I want to, but that confirms the fact that I will not ever go more than a few months without an episode. So the plan for now is: ride out this last 3 month injection (which unfortunately was from That Other Country- I took it before speaking with my doctor), go back in January for another appointment to discuss what’s going on, take a few months off of injections, and continue talking about the pros and cons of more surgery and managing the pain when it happens.
So what I need to do is get a bit more zen about these episodes when they occur. I have such a habit of fighting it but now I’ve had enough. I’m actually tired of my own stubborness, I have exhausted myself! I can’t feel guilty about missing work or other appointments and I have to do my best just to go with it. That’s easier said than done of course. This appointment was like dominos and a trip down memory lane: the damage that has been done, being told what I suspected, miscarriage, infertility, all of the surgery, my complaints being ignored for years.
As always, just when I think there’s nothing more to say about Endometriosis it seems like there’s too much. I wish I were a better writer. I never feel like what I say about it adequate enough. I could just say ‘It Sucks’, but I’d like to be a bit classier than that (but it does).
So while that’s all one big buzzkill, here’s what was positive about the day:
I love my doctor and I feel incredibly blessed to be treated by one of the best specialists in the country. His compassion and concern for my well being has made the last few years much easier. When I left the US I was so afraid I wouldn’t find a specialist like the one I had, but thankfully I did.
My husband. Seriously. I am the luckiest girl in the world.
Things could always be worse.