Last week, Lena Dunham revealed that she has spent most of 2016 struggling with complications from endometriosis, including having three surgeries.
Like myself, Dunham has the misfortune of having aggressive endometriosis that has affected at least one of her ovaries, and has had three surgeries. And like myself, Dunham is a woman struggling to be a fierce, creative, hardworking writer in a fast-paced, demanding career, in a world that doesn’t get why this disease is so problematic.
More: What OB-GYNs want women to know about endometriosis
Endometriosis is more common than breast cancer: It affects legions of U.S. women. For reasons not yet understood, endometrial tissue grows outside of the uterus, in the abdominal or vaginal cavity, on organs and more rarely, even in the lungs. The tissue forms lesions, which bleed and secrete hormones, and when the lesions heal, they form thick scar tissue that can pull on the delicate internal tissues, causing great pain. The secretions from the lesions fill the body with toxins that are difficult to process, often causing pregnancy-mimicking bloating and pain ranging from stabbing to searing to burning to deep aching. And that’s just the basics.
The only currently understood treatment to this disease is excision surgery with an endometriosis specialist. There are other components — nutrition and food intolerances being almost (but not) equally important — but it is this specific type of surgery that gives women their functional, pain-free lives back.
One of Dunham’s surgeries was to treat an endometrioma — a growth full of blood and toxins. Mine, on my left ovary, grew to the size of a grapefruit. I could feel it there, tucked into my pelvic bone. I had lived with it for almost a year.
Teaching preschool, I’d bend over to pick up a child and feel it there, a hard fist of pain. It was similar to when, in the later stages of pregnancy, the baby pushes down on your vagina, and it swells and hurts.
I was also exhausted: bones aching, muscles jellied, brain foggy, eyes swollen and closing of their own accord. The exhaustion part of this disease has various causes, ranging from the anemia many women with endometriosis struggle with to chronically low levels of vital vitamins (such as B-12 or D) to the fatigue of a liver working overtime to process excess estrogen and toxins.
More: 10 things too many people get wrong about endometriosis
When I read in Dunham’s essay that she snapped a cheerful Instagram photo of herself in snazzy sparkle shoes, posing in the sunshine, and then went back to bed, overcome with fatigue, I just nodded. I so, so get it. Sometimes, the only defense I have against the drumbeat of endo is to put on my best face and fucking fake it. Other times, I take off the makeup, slide of my sparkle shoes and unzip my jeans to reveal a bulbous belly.
Part of what is so disorienting about a chronic disease like endometriosis is the feeling that your identity is being taken over by a literal body politic: the realities of pain, nausea, bloating and fatigue are horrible yet mundane, tragic yet boring, all-consuming yet still just such a small part of who we are. I want to be real, to get support, to be seen, but I also want to be much more than a collection of health bulletins.
More: Pregnancy after endometriosis
That’s why the same woman who purposefully fakes a New York moment also writes a blisteringly honest essay about her disease, her physical struggles, and enduring three surgeries in 12 months.
After my third surgery and recovery, I had a long reprieve from my endometriosis symptoms. I was elated to reclaim my body and my identity. No longer did I have to decide whether to tell people the real reason or not when canceling plans or retreating from communicating for weeks. Still, I kept scrolling through the blogs and articles and Facebook groups on endometriosis to give back to others what I had learned and to remind myself not to take a sunny day and a working body for granted.
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