I was recently talking online with a cousin of my dad's, who asked if my pituitary gland "thing" was still bothering me. "Thing."
Yes, I still have my brain tumor, I told her. (I think I was in a snarky mood that day. It was the truth, but I guess I was annoyed.)
What???? You have a what??? I could tell she didn't believe me. The conversation became odd after that. I could tell she must have thought I was trying to pull one over on her.
For those of you that don't know, pituitary gland tumors are indeed considered brain tumors. The pituitary gland is attached to the brain, therefore, it's a brain tumor. (Two endocrinologists I've seen have confirmed this.) That's probably why I got so freaked out when I was first diagnosed. Wouldn't anyone diagnosed with a brain tumor?
The pituitary gland is the master center for your hormones, including the thyroid. Anything that goes wrong with it can seriously put your body out of whack. Like facial hair, weight gain, mood issues... The list goes on and on.
I think the problem is that a lot of people simply don't know that a pituitary tumor is considered a brain tumor. You really don't hear about them and we can (relatively) function at a normal level.
Except for the fact that I've been feeling like I'm in menopause this week. Yeah, not fun...
So imagine when someone does need surgery for this what people will say? I've joined online support groups for this and apparently not a lot of folks believe us when we say something is wrong. Someone even told a person who had surgery that they didn't believe them! The patient even said come with me to a doctor's appointment!
I haven't needed surgery yet. So far this has been treated with medication to lower my prolactin level-which has been successful. There's also a possibility that this could be Cushing's Disease. I hit almost every category for this, but every blood and urine test has come back fine. I want to talk to the endocrinologist about this at my next appointment because no doctor has run one other blood test for Cushing's.
I could get surgery if I had Cushing's. This tumor could be removed. I'd kind of like for it to be removed-except for the fact that a neurosurgeon would have to do the surgery-through my nose. Icky.... I guess it's better than a drill through your skull.... Chills just talking about it....
So what reaction do I get when I mention this to a few people? Shock, of course. As my aunt said to me a few years ago right after I got diagnosed, "Um, you look fine." When I begin to explain this to others though, they're glad I got a diagnosis and tell me it makes a lot of sense. It honestly does. And then some simply don't believe me. (Their problem.)
Have you ever heard of a pituitary adenoma? I'd love it if you'd comment and let me know. Let's spread the word!