What is endometriosis?

I have been reading Ross Gay’s The Book of Delights, enjoying the energetic weaving path of his mind. How he sees the world and translates that on the page invigorates my love of the short essay. So does another book I loved in 2018, The Baltimore Book of the Dead by Marion Winik. The essayettes read like poems, therefore I was not surprised (rather, delighted) when I learned that Winik started the project as poems. Our boundaries are not as tight as we think.

In the spirit of boundary-less writing, I have been writing flash essays (paragraphs?) about endometriosis, meant to distill the daily struggles. Reading a symptom list has never been enough to explain living with a chronic illness. For a medical definition, read conflicting explanations of endometriosis online (because there is no cure and the cause is unknown). I’m here to share a piece of what it’s like to live with endometriosis.

So what is endometriosis? It is a disease that can be treated with watchful waiting. It is endometrial tissue ignoring boundaries and doctors unable to explain the migration. I am being a poet over here. This is a current definition from one of the top surgeons in the United States. The problem is, very little is known because there has been little listening and study. You’re told symptoms will go away with menopause. You’re told take the pill to pause your symptoms. You’re told try Lupron to shut down your hormones. You’re told take an antidepressant to shut up.

Endometriosis is rethinking simple pleasures. No conferring with friends until 2a.m., eating pumpkin muffins, going to a restaurant without meticulously studying the menu and looking up ingredients without fear of bodily revolt.

Endometriosis is taking four Advil before work telling yourself this is fine. You’ve been prescribed 800 milligrams of Motrin to survive these days in the past.

Endometriosis is pulling over sobbing in the middle of a 12 hour car ride because your worst period day fell during planned travel. It was already three days delayed from travel stress. You need to change your tampon every hour and a half and you’re in so much pain radiating from your pelvis through your legs that you can’t concentrate. Every bathroom in North Carolina has been filthy, lacked toilet paper to clean up the bloody mess, and you feel like you failed your partner because you cannot contribute to the driving.

Endometriosis is journaling as much as possible because on many days you’re in too much pain to think past clichés. You’re afraid the energy you trying to smile through small talk will take away from your ability to remember.

Endometriosis is taking up circus arts. The callouses on your hands, bruises in your elbows, and hardened bumps on the top of your feet are leading to something. That physical pain means you’ll do something dazzling, like hang upside down from the tops of your feet with a serene smile. As Zadie Smith says in Swing Time, “But elegance attracted me. I liked the way it hid pain.”

Endometriosis is wondering why there is so little research unrelated to fertility. How can you think about fertility when you can barely make it through the day? Why do women’s bodies only matter if the concern is about children? Cut to every horror movie where a woman finds her strength because she is pregnant. What about the rest of us? Watch I Spit On Your Grave (1978) and A Girl Walks Home Alone at Night (2014) again.

Endometriosis is trying anti-inflammatory diets, then eating dairy and gluten for a week because it’s the holidays. You have the worst pain since before excision surgery and decide to recommit to following the diet. You add weekly acupuncture, hip stretches, and syncing your running cycle with your pain cycle because despite all this exhaustion, you are still an intensely competitive athlete looking for a thrill.

Endometriosis is longing for quiet time in the morning. Let me rephrase. It is longing to not have to think about rationing time throughout the day. Karen Lord wrote an incredible long essay about the day to day pain, stress, and impact as someone working in the health & fitness field. She digs into the frustration, “I’m lucky that after all the tests are run in the ER they tell me I’m the healthiest person they’ve ever seen. I mean except for this, right? Right.” Like the endometrial tissue, your symptoms continue to color every moment.

I hope this gives you some insight into the day-to-day of living with endometriosis. Stay sweaty and glittery.