The Endometriosis Symptom No One Talks About
Endometriosis sucks — there’s no getting around it. Knowing you’re not alone, though, can make all the difference.
I was diagnosed with endometriosis when I was sixteen. For almost as long as I’ve been having periods, my body has been busy growing endometrial tissue in places outside my uterus. They cut some of this stray tissue out back then, but despite years of birth control and appointments with specialists, it has since grown back. It likes to get angry, twisting around inside me like a knife to the cervix.
“Have a baby,” the doctors tell me, forgetting they also cautioned that my body would be hard pressed to conceive after age 25. “Pregnancy is your one chance of kicking this thing.”
“Sure,” I say, nodding absently, dangerously close to once again comparing my own seemingly mutinous body with my friends’ childbearing ones. “Someday.”
The physical pain is sharp, and so is the loneliness of being the only one who has to wrestle with it.
Endometriosis can be tough to talk about. Hell, it’s tough to pronounce. I’m not usually in the habit of discussing my reproductive system with coworkers and professors, so when they ask why I’ve been missing class or why I haven’t been in the office, it’s hard to know how to answer. “My endometriosis is acting up,” I offer, praying the asker will nod sympathetically and move on. More often than not, though, their chins jut out and their eyes narrow in confusion.
“Endo — what?”
A scientific description of endometriosis doesn’t even begin to cover it, though (as I’m sure is the case with many other chronic illnesses). Sure, I can tell you that the lining of my uterus, the thing you shed during your period, has a habit of growing wherever it wants in my pelvic region. I can tell you it hurts, that there’s no cure, and that it sometimes calls for surgery. I can tell you that I’ve been relatively lucky, having only had surgery for it once. What I can’t do is describe to you the blinding stabs of pain that wake me up in the night, that suddenly seize me as I’m walking to the bus stop. They’re like lightning bolts. Endometriosis is a cold metal ice cream scoop, carefully scraping out my insides. You’ll never understand it unless you’ve felt it, and I don’t wish that on anyone.
Those of us with endometriosis know there’s not an answer. There are treatments, there are ways of perhaps reducing the pain, and there is surgery, which will keep the tissue at bay for at least a little while. After years of doctors shrugging their shoulders and giving us sad, pitying smiles, we’ve learned that there’s nothing left to do but endure. Each time a dear and truly well-meaning friend suggests I see a doctor, I feel the loneliness compounding — if only they knew. Each time another friend gets pregnant and I am forced to remember that something so natural will most likely be an incredible feat for me, the loneliness rises higher. It isn’t that I blame them; on the contrary, seeing photos of my friends’ kids or baby bumps on social media usually makes me happy. It’s just that somewhere, deep down, the loneliness of being the “only one” echos mournfully.
I’m not the only one, though. For starters, if you’re reading this and you, too, suffer from endometriosis — well, that makes two of us. Beyond that, friends and acquaintances will sometimes offer the odd, “Oh, my cousin has that,” or, “A lady I worked with had that.” They’re out there! We are out there. We may not have a cure for our illness, and there may be no surefire way of treating the pain, but one thing we can count on is that community will help ease the loneliness, if we only know where to look for it.
So, how do you find other women who are living with endometriosis? Most of the time, we don’t broadcast it on social media or go through life with signs hanging from our necks. It’s not that we’re ashamed; it’s just not something you blurt out for no reason. It could be that a friend in class asks you for ibuprofen and confides that she’s been having ungodly period cramps and just found out she’s got endometriosis, or maybe your mom’s friend’s sister was diagnosed in her twenties and has been through the whole ordeal, even managing to get pregnant. These are the places to start, and these are the women to talk to. My non-endometriosis-suffering friends are great listeners, but there’s something about sharing in fellowship with other women who know what it’s like to worry about fertility and try to discern if the stabs of pain are really worth getting someone to drive you to the emergency room. I’ve got a feeling our PCOS-suffering sisters can relate, too!
“That’s great, Emily,” you say. “But I don’t know anyone like that.” Alright, fair enough. As an estimated 1 in 10 women (176 million worldwide) are reported to have endometriosis, I’d be willing to bet that you do know someone, but you may not know it yet. Or maybe you’re just not ready to talk about your illness with people you know — that’s okay, too. The internet, then, can be a fantastic resource for finding online support chats, forums, and social media groups where women can gather to encourage each other, share treatments that worked for them, suggest doctors and clinics, have a grumbling session, or crack jokes. I’m even a part of a Facebook group dedicated solely to sharing memes as ammunition against the members’ endometriosis attacks. After all, why not try to take your mind off your pelvic pain by laughing so hard your stomach hurts instead?
Wherever you want to find it, community is out there. Even on the days you’re feeling the most discouraged, on the days you couldn’t make it to work because you couldn’t stand up straight, or the days you’re home recovering from surgery, remember that you’re not the only one, and we get it. Susan Sarandon, Whoopi Goldberg, Cyndi Lauper, Lena Dunham (the list goes on) — they get it, too. Endometriosis doesn’t have to stop you from living life, and you don’t have to be a celebrity to give it the finger and keep going after the things you want. Sure, your endometriosis might make some things more difficult and you’re allowed to have as many bad days as you need, but we’ve got your back — all 176 million of us.
