Geez, what a terrible year it’s been so far. I really didn’t mean to let things get this out of hand.
I plan on doing a proper catch-up post in the next month or two. I’m actually waiting on some more doctor shit so I know what my life is going to be like. Since I don’t have much time for anything these days, I’m going to do a quick cliff notes for you right now and then I’ll be properly bitchy and whiny and get into the whole wretched ordeal another time.
So here’s my 2023 thus far:
January:
Go to my GYN for a second opinion on some ovarian cysts that aren’t going away. They’d been there over a year. Mention I want to have kids but no such luck for years and my periods are really wonky and irregular. Buncha tests done and BAM. I find out I have stage 4 Endometriosis (which I wasn’t really surprised by) and a non-cancerous brain tumor on my pituitary gland, which I VERY MUCH WAS SURPRISED BY.
February through July:
Ass tons of tests. My new endocrinologist wanted to be sure I didn’t have Cushing’s Disease. It’s really hard to get a definitive reading from that. I had to take time sensitive blood tests, midnight saliva tests that kept coming back incorrect, plus some other weird test that required me to take a whacky medication (at 11 pm), plus get my blood drawn at a certain time the next day. It was ridiculous. I had to drive a very stressful place in a big city for testing MULTIPLE times, stay up late and get up early MULTIPLE times because of the sensitive nature of the tests, and stay off all kinds of meds, vitamins, supplements, and even fucking face creams so I wouldn’t throw off my test results. It was annoying, it was repetitive, it was time consuming, it was frustrating. All of this so I could FINALLY start treatment. My doctor is amazing but she’s very flakey because she’s sooooo busy so all of this took months longer than it should have.
Meanwhile, I can’t be treated for my extremely painful endometriosis because the birth control I need to be on would interfere with my test results too. So I get to suck it up and wait.
Also, over the last year or so, my already thin hair (see my previous blog post on it) got even MORE thin! We’re talking Bruce Willis thin in those 90s movies before he accepted his fate and shaved his head. Shit.
My tumor is on my pituitary gland so my hormones are out of control. Bye-bye more hair that I can’t afford to lose. So I recently butched it suuuuuper short and now I wear piratical-like head scarves that very much don’t mesh with my dumpy sweatpants attire. I look in the mirror and constantly want to cry. I look haggard, old, deathly pale, and half bald.
I guess since I’m rambling on, I should tell you a little more about my tumor.
It’s called a prolactinoma. It’s like a boulder on your pituitary gland, even though my tumor is pretty small, or at least it was back in January. Who the hell knows how big it is now. Anyway, it makes your periods irregular, which probably saved my endometriosis from being even more painful, and it gives you mondo headaches too. Here, let’s do this bitch in list form. Side effects for ME from my tumor:
Infertility
Chronic insomnia
Frequent migraines
Fatigue
Difficulty losing weight
Hair loss
Major brain fog
Amped up anxiety from the hormones
Peripheral vision loss because it can affect your optic nerves since it’s by your eyes
At risk for early onset osteoporosis
At risk for a buncha other stuff I’m too lazy to list
Endometriosis for me looks like:
Infertility (yes, it’s on here twice)
Major pelvic and ovarian pain before and during menses
Pelvic floor pain and dysfunction
My internal organs are literally stuck together with adhesions. My doctor said she was too afraid to do surgery because it would probably end up in organ damage so I’m going to eventually take birth control and hope I can make it til menopause
Fatigue
July and onward:
So, I FINALLY got cleared to not have Cushings, and I was so grateful. That meant I could start treatment, which is a medication called Cabergoline. That mofo has a reputation for side effects that range from dizziness and nausea, to having Schizophrenics symptoms, which is thankfully rare. Still, yikes. It’s very effective at shrinking the tumor though and it is something I’d have to be on and off again my whole life. So anyway, I’ve been waiting to go on this bitch for six goddamn months. Finally start it. Within two days my eyesight is affected. There’s a big black shadow on the edges of my vision and things are blurry. Apparently it’s a rare side effect but it freaked out my doctor so much that within a week she took me off again. Admittedly I was freaked too, convinced I was going to go blind.
Now I’m back to square one, not medicated and feeling like I’m going crazy. I have an ophthalmologist appointment in a month and then I will discuss future plans with my doctor. She may put me on Cabergoline again or she may try bromocriptine, which has an even worse reputation for side effects.
If I can’t handle either medication they’ll probably have to do brain surgery where they go through my nose, break the barrier between the bridge of your nose and your brain, and try to get the tumor out without making me blind or nicking important arteries. Luckily there’s a good rate of success for experienced surgeons but the very idea is fucking terrifying. Oh, and by the way, it’s not uncommon for these brain tumors to fucking GROW BACK. So even if I DO have to get surgery and it’s a success, I may have to do it again and again.
So here I sit. Because of my reaction to my meds and the effect birth control would have on my prolactin levels, I’m not allowed to start my endometriosis birth control yet, so since it’s that time of the month again, I’m writing this with a hot pad down my pants, as one does.
Oh, also? My mom is kinda sorta dying. I don’t know, it’s a whole thing. She got diagnosed with diabetes and ever since her health has tanked. We’ll see what happens. She basically sits at home, only eating the bare minimum for a human not to starve to death and too weak to open a granola bar wrapper. I’m not happy with her either, but that’s a post for another day.
Phew! Geez, well consider yourself caught up after all. I didn’t mean for this to turn into a bitch-fest. It just kind of happened. Sorry if I’m a negative Nancy, in reality there really is a great chance things could all work out well in the end. It’s just, I started out 2023 asking my doctor my options for having a baby and instead I pretty much got, “Nope! No babies for you-ever. How about a life altering brain tumor and endometriosis instead? Also, say goodbye to your hair you ugly fuck.”
Mildly Miffed 