Even though a staggering 176 million women worldwide are affected by endometriosis, it often takes years and years of doctor visits, misdiagnoses and debilitating pain for anything to be done, or for a medical professional to even believe endometriosis is actually behind the symptoms.
To help raise awareness of the common but oft-ignored condition, Lena Dunham has dedicated this week's issue of her Lenny Letter to endometriosis. Not only does the issue shed light on how misunderstood the disease is, it also provides a platform for real women to get candid about their own struggles with endometriosis.
Dedicated to "every woman struggling with her reproductive health," the newsletter is incredibly powerful, and proves just how widespread, misconceived and painful — both physically and mentally — the condition is. Here are some highlights:
Lena Dunham, actress, writer, director; diagnosed at 26
On dealing with doctors who didn't understand her pain: "I tried to talk, to explain what I had been feeling and ways I had felt it before, but they whispered over me, consulting an empty chart. They diagnosed me with colitis and sent me home with a handful of Percocet and an appointment for a colonoscopy."
On feeling betrayed by her own body: "[I was] covering up a fear so profound as to be unspeakable: that my body would betray me, hold me back, and prevent me from pursuing a life of substance. That I had no control.
On the fear that endometriosis would take over her life: "If my pain had no tangible source, that just meant my mind was more powerful than I was and it didn’t want me to be happy, ever. I saw myself divided like a black-and-white cookie into neat halves: one bright and ambitious, the other destined to wind up strapped to a gurney and moaning for pain meds. I had lost all trust in or connection to my own body. I was a floating head.
Padma Lakshmi, writer, TV host, co-founder of the Endometriosis Foundation of America; diagnosed at 36
On the lack of awareness as a young girl: "Nobody had ever said the word endometriosis to any of us. We just thought, Some women have cramps, some women don’t. And when you’re just told that there’s really nothing to be done, that this just happens, you become resigned to it, I guess."
On how endometriosis can affect your sense of self as a woman: "[Endometriosis] develops part and parcel with your womanhood, and so you can’t help but have it skew your relationship with your physical self ... I didn’t feel like I was blossoming ... I was lucky if I could even walk down the street on my own two feet. So, from the start, it mangled my relationship with my body."
On the importance of early diagnosis: "I didn’t get help until I was 36. Think of all that time that I lost: times that I couldn’t go on a second or third date; times when I missed jobs; times when I missed school exams, school dances, volleyball games, being present for my family, being present for my girlfriends, taking an extracurricular activity, being emotionally and physically OK. That’s one week every single month for all those years. That’s 25 percent of my life, and I could never get that time back."
A.N. Devers, writer and editor; underwent a voluntary hysterectomy at 38 due to endometriosis
On the physical and emotional toll the disease takes: "I have severe anemia from the blood loss and need iron infusions because oral supplementation doesn’t help. A few years ago, I gave up 20 years of dedicated vegetarianism for the iron in meat. I often feel depressed by the choices I have to make ... I have slept on brown sheets ever since getting married at 23. I do this so I don't have to be reminded of what I am not in control of [every month when I bleed through my sheets]."
On the severity of her condition: "I went to a friend’s birthday party at a pub, then abruptly had to leave because I felt myself begin to bleed uncontrollably. By the time I walked a few steps to my car, I was covered in blood from the waist down. By the time I drove myself five minutes across my neighborhood and parked, I was sitting in a pool of my own blood."
On what she's had to give up because of endometriosis: "I don’t know what to talk to people about anymore. What can I say? That my time is taken up by two things, mothering and bleeding? Everything else is distant to me: my writing, my work, my ambition, my love of reading, all have been trampled on by this disease ... I’ve given up job opportunities, writing assignments, a book, my website, all to barely manage pain."
Dr. Tamer Seckin, endometriosis expert; co-founder of the Endometriosis Foundation of America
On why it's so hard to diagnose: "It’s a disease of periods, really, and in general there is a lot of societal misconception about periods and menstruation. People still don’t talk about their periods openly."
On what society gets wrong about endometriosis: "It’s cultural misogyny. These women think that having pain of all degrees — to the extent of tortuous pain — is part of being a woman. That suffering and pain is part of their sexuality. But this pain is not normal, and the taboo that surrounds it must not be either."
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