What It's Like to Have Endometriosis, the Disease That Makes Your Periods Hell
While Lena Dunham recently made headlines for the little-known condition, she's not alone. One in ten people with a uterus will suffer from endometriosis at some point, including me.
The news that Girls star Lena Dunham was recently hospitalized for complications stemming from her endometriosis is one of the first times I've ever seen the condition get coverage in the mainstream media. It's a disease characterized by incredible pain that very few people know about. But 10 percent of people with a uterus will suffer from endometriosis at some point in their life, including me.
I was 19 when I was first diagnosed with endometriosis, a condition that causes the tissue that normally grows inside your uterus to spring up in other places in your body. I knew something was wrong for a long time, right back to the second time I got my period when I was 13 years old. The pain was so intense I couldn't go to school. I would faint if I stood up too quickly, I could barely eat, and I couldn't sleep. I had to take weeks off at a time because the pain was so horrific and my bleeding lasted much longer than we'd been taught a period was supposed to.
I saw my family doctor about it, and he told me pain was normal when you get your period. I had to continue to complain until I was finally referred to a gynecologist. But he told me my pain was normal as well. He did prescribe a contraceptive pill, an attempt to shorten the length of my period. And after a couple of years, it did, but the pain never stopped or even lessened.
Over the next few years, the pain continued to progress. I kept visiting my gynecologist, convinced there was something wrong with my body, but nobody—no specialist, family member, or friend—seemed to believe me.
The pain of endometriosis comes from nowhere—shooting, sharp, and intense. It hits in the lowest point of your stomach, cramping up in waves. I'm told it's not unlike the feeling of labor contractions. Sometimes it'll shoot to your lower back, meaning there's no comfortable position. Then there's the nausea and dizziness, which feels as though it will never end.
So at 19, at yet another appointment, I finally told the OBGYN I was so sick of being in constant pain that I wanted to die. This seemed to shift something—he sat up and asked me questions, and after an internal exam, he came to the conclusion that I had endometriosis. I had no idea what it was but was booked in for a laparoscopy and a hysteroscopy—two procedures where a camera is inserted to examine the pelvis and the lining of the uterus.
This is a pretty common experience for people with endometriosis: It's hard to get a diagnosis. The fact that female pain is often not taken seriously enough by doctors plays a role. My case isn't even the worst I've heard of. For some sufferers, endometriosis is unbearable.
I had surgery to burn out the endometrial tissue, and I was told that I should no longer experience pain once I had healed. This was a lie. It has been over two years since that surgery, and although the internal ultrasounds tell me my uterus is no longer drowning in excess endometrial tissue, the pain hasn't stopped.
But being diagnosed with a disease that has no cure is not the worst part about endometriosis. There are so many misconceptions, and I believed all of them at some point: If you read any article on endometriosis, including the Wikipedia page, you'll see it says that endometriosis undoubtedly leads to infertility. This is not always true. Many people with endometriosis have children. But for ages I thought my diagnosis meant that was it for me, I could never have kids.
And then there is my favorite and most regular experience of endometriosis pain: the flare up. I will be out socializing, or at work, and all of a sudden, for no logical reason, my stomach bloats up to four times its size and pain seizes my body. There is nothing I can do about it, except try to explain to those around me, bosses included, that I did not plan this, I am not making it up, and I need to get myself home.
I keep hoping that one day they will find a cure, but there is so little awareness for an illness that is so debilitating to those who have it. Some days I can be fine, and I'll be on my feet for hours. Other days, I wake up, and I cannot move. The pain cannot be relieved. Lying down, sitting up, bathing: It's still there.
They can perform surgery, give you hormone-based medication, prescribe you strong painkillers, but there is no guarantee that any of these may work. Until awareness is raised for this disease, the government and medical industry will not put further research and education into fighting it and finding a cure.
That's the other thing that makes living with endometriosis difficult: So few people even know what it is, let alone how debilitating the pain can be. So that's what I'm hoping for in writing about my experience—that a couple of people might learn more about what endometriosis means for the people who battle it. We are strong. We can fight this.
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