Living With Endometriosis From an Early Age

Endometriosis occurs when tissue that usually grows inside of the uterus grows outside and around it, putting pressure onto the uterus.

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Getting a period is pretty standard for anyone with a uterus. They can be painful, they can cause a wide range of unusual emotions, and they are a great excuse to eat an extra piece of chocolate. But, these symptoms are all considered “normal” parts of having a period. 

What’s not standard for people with uteri is endometriosis. 

Endometriosis occurs when tissue that usually grows inside of the uterus grows outside and around it, putting pressure onto the uterus. Its only cure is menopause. And, it’s genetic.

My mom had endometriosis, my aunt had endometriosis, and I have endometriosis. I’ve had my period for seven years. If you do the math, I’ve had around 84 periods, each lasting almost two weeks (way longer than average). And during every single one, I was screaming and crying.

At just 11 years old, I had to leave dance class early because of how intense my cramps were. My first memories of my period were of me lying on the floor of the bathroom, crying. I would describe the pain by saying, “you could probably stab me in the uterus while I had cramps, and I wouldn’t be aware of it.” By age 13, I was missing two consecutive days of school a month in order to deal with the first two days of my period, and I was taking four Advil every four hours for ten days straight. By high school, I had a doctor’s note saying I couldn’t play gym when I was on my period. At age 14, I begged my mom every single month to put me on birth control, as I was told that would help with the pain, and after I turned 15, I was put on the pill.

I was told that birth control should help my cramps, as that’s what it does for many others. However, over the course of three years, I’ve been on eight different birth control pills, with none of them alleviating the pain. I felt so helpless that I even asked about getting a hysterectomy. I wanted the source of pain as far away from my body as possible.

Eventually, my gynecologist sent me to a pediatric gynecologist, since they’re the ones trained to look for abnormalities. I told her what my symptoms were, and she immediately diagnosed me with endometriosis, something which my old doctor had only mentioned was a possibility. I began taking continuous birth control, which is essentially the same as regular birth control — except it skips the placebo week, meaning that those who take it don’t get a period. This worked well, but it gave me severe migraines. For a while, I was okay with this, as the cramps were by far the more severe pain. But, my doctor was not happy about the fact that the pain simply moved, and suggested an IUD. 

While types of birth control were being sorted out, another discussion came about. You see, endometriosis doesn’t show up on sonograms, so even though my doctor diagnosed me and began treating me for endometriosis, there was no 100% guarantee that I had it. The only way to know for sure was to do an exploratory laparoscopy, which is doctors sticking a camera through your belly button — and if doctors were to find any endometriosis, they remove it. Sounds easy, right?

I came out of the surgery in generic surgery related pain but otherwise okay. Sure there were cramps, but the cramps were considered a normal side effect (and yes, I realize the irony of how the surgery that was to prevent period cramps caused period cramps).

Right now, I’m hopeful. I went through seven years of unbelievable pain, and I’ve exhausted all possible options to help my endometriosis. Yes, it can grow back, but hopefully, the IUD will stop that from happening. The most important thing to me is spreading awareness about endometriosis, because it is something that 10-20% of people with uteri suffer from silently. It’s considered “taboo” to talk publicly about periods, but because of this taboo, many people don’t know what endometriosis is — and therefore, don’t know if they have it. Celebrities like Halsey and Julianne Hough have spoken openly about their struggles with it, and it’s opened up the conversation for other people.

And hey, if Julianne Hough can film an entire season of Dancing With The Stars while suffering from endometriosis, then at the very least, I can get out of bed in the morning.

 


For more information about endometriosis, visit endometriosis.org

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