I am not friends with my lady parts, so fair warning that this post may be a bit on the crass side. I’ve been diagnosed with Polycyctic Ovarian Syndrome (PCOS) since 2000 and have recently learned it’s a very common comorbid syndrome with EDS. I could write a whole other post on PCOS, and I just might do that in the future. Today, however, I wanted to share one tiny little aspect that I had to overcome called Simple Hyperplasia.
My Uterus Throws Tantrums & Hoards
It has no idea what it is supposed to be doing, or it doesn’t care. It never has. Some of the general symptoms of PCOS are irregular periods. Mine? I’d get one a year, maybe two. When it hit? Oh gods….
I’d sleep with a red bath towel under me and use one of those giant tampons along with a heavy pad. I used to tell my other half that I had a were-uterus because if my period came unexpected you’d swear it snuck out in the middle of the night, caught a rabbit, and slaughtered it in my bed. It was horrifying the first few times, it just got frustrating after that. Isn’t it funny what we can become accustomed to?
Until I was sent to my current gynecologist (who is amazing by the way), all of my struggles were brushed off as “PCOS does that sometimes”. The mass exodus of blood was one thing, I told them, but I’m exhausted, nauseated, the pain is intense, I’m dropping clots the size of turkey gizzards…this can’t be normal! It all changed when I was first put on Metformin for the insulin resistance aspect of things.
The Downward Spiral
My primary care told me that sometimes, period cycle problems clear up with Metformin, so I wasn’t surprised when within a month, I started a cycle. It went as it normally did for about a week. Then it kept going. In the middle of the third week, I got the worst cramps I had ever experienced. They were so extreme, I called the emergency pager for my doctor. I couldn’t stand because my legs would just give out. I was shaking and lightheaded from the pain. They came in waves every minute and I would drop blood immediately after they would start. And I use “drop” because that’s what happened. It was like my uterus was filling up a 1/4 cup and dumping it. I told him I know I had to have lost at least 2 cups minimum in the past hour, and it’s never been like this. I was scared and in unbearable pain. He said to take naproxin, and if it didn’t stop within the hour…go straight to the ER.
Thankfully, it did stop. But I didn’t have answers. When I called the next day to check in with him, he said he already put in for me to see a very specific gynecologist. I didn’t want to see a male gynecologist, but he assured me that he would be the best for me. I’ll be forever grateful that I listened to his advice. It took a while to get in to actually see him, and I had another terrible cycle within that time, but it was worth the wait.
Diagnostic and the Treatment
I had a lovely chat with my new gynecologist before we ever got to any kind of exam. He asked me to explain what I knew about my PCOS and details of what I was going through. He said he wanted to do a blood test to confirm PCOS, but also he wanted to do a endometrial biopsy, because he was pretty sure it was something called simple hyperplasia. Basically, instead of shedding the endometrial lining, my uterus was trying to keep it and what I was actually experiencing was blood loss…not a true period. If the test come back as he expected, he said my best course of action, with everything considering, was an IUD. He gave me information to read up on it at home while I waited for a call back. Within a week, he called to say they came back positive and to schedule an appointment.
There was a small hurdle, when we went to implant the IUD the first time, he pointed to a white mass the size of a softball on the screen and told me that was still a hyperplastic growth, and I needed to do oral progesterone to try and clear it. If that wouldn’t work, he would clean it out with a D&C, let me heal, and put it in shortly after. Lucky for me, they worked and the procedure was simple and easy. My surprise came when he showed me the placement of the IUD on the screen. Now, the IUD was small. It fit in the palm of hand. But it was not microscopic small by any means. When I saw it on the screen? It was a tiny, itty bitty white dot on the screen.
“WHOA! HOLD ON!” I’m pretty sure I yelled at him. Did he change the resolution? Because that mass two weeks ago was the size of a softball! This is so tiny!
He sat me down for a conversation about it. There wasn’t any point in making me worry at the time, so he didn’t make a big deal out of it. But yes, that mass in my uterus of hoarded tissue was quite large. The pain that I was experiencing with my last cycles? That was my uterus having contractions and trying to push it out…I was having labor pains. The blood was from things tearing as it tried to get rid of the overgrowth. The large clots I was passing were clotted blood as my body was trying to stop me from bleeding out. I wasn’t in immediate danger right then, but I was dangerously close.
Several Years Later
I’ve had the Mirena implanted since then and no more issues like that at all. It even helped my migraines and assisted in some other areas as it balanced out my hormone production. Thankfully, the type I had was not considered a cancer risk, so no other treatment aside from the IUD was needed. It’s not an option that works for everyone, and some don’t want to take the risks. It could attach to the uterine wall and create complications that make it impossible to have children. But for me? That was a risk worth taking compared to what my body was trying to do to me.
I’m still angry over it when women groups try and tell me that I need to embrace my feminine side and my sacred womb space…because that bitch tried to kill me. But I’m trying. Having a life where my laundry and bedroom no longer look like someone did a shotty job at cleaning up after a mass homicide…helps a little.
