I have to preface this by saying — this isn’t like any of my usual posts. It’s not about exploration, nor in any way related to travel other than the fact that it has, on multiple occasions, disrupted it. It’s not about fashion either, but it has, in many ways, limited my wardrobe to cozy sweatpants and baggy t-shirts. This is something I’ve never talked about publicly, but it’s endometriosis awareness month, and it just feels like the right time. If not now, then when? Because as I’ve come to learn over the course of many, many years, “never” really shouldn’t be an option.
Endometriosis is a disorder in which tissue that normally lines the uterus (or what’s called the “endometrium”) grows outside of it. I have it. And countless other women — one in 10, to be more specific — do, too. A lot of us are too embarrassed to talk about it. But given just how loudly painful this disease is, being silent about it is absolutely ridiculous. In severe cases like mine, it involves throbbing, sharp and stabbing pains that really robs you of your breath — and countless everyday activities you typically enjoy. Sometimes, I can’t even sit upright for days.
Endometriosis has no cure, just ways to manage it and keep the pain at bay. There’s surgery, too, but that’s a short-term solution. Endo typically resurfaces three to four years later, and it’s back to square one. Doctors may (and often do) politely tell you to suck it up. Other times, they won’t even diagnose you correctly. I’m not sure which one’s worse. In the first situation, you’re left alone in your struggle, and that struggle itself is made trivial. In the latter, you’re left wondering what’s wrong with you.
If you read my blog, you might already know that my life has a strange trajectory. I was born in Tbilisi, the Republic of Georgia, but grew up in Cairo, Egypt before moving to the United States in 2011. I remember my first visit with an OBGYN. After years of struggling with crippling pain through my teens — pain that often prevented me from attending class at school and friend gatherings, and avoiding any social obligations that “fell on those days,” I decided to pour my heart out. This wasn’t easy, of course. I was a terribly shy kid. But I so badly wanted a solution, anything really, that I complained to my physician with boldness and urgency. As I talked, I could see the edges of his lips curling upward. “Well, you’re a woman now, and women often have to deal with pains throughout the month,” he said, and I could almost hear the smile in his voice.
When I lived in Egypt, open conversations on women’s health were still taboo. Bring up the topic of “girl flu,” and you’d be met with gasps, averted gaze and sometimes straight up anger. In many parts of the country, menstruation is still stigmatized, and misinformation about a woman’s biological functions often leads to widespread myths that often depict a woman as unclean and untouchable. In a 2018 opinion piece for Egyptian Streets, Nour Eltigani wrote, “This lack of education on the matter automatically leads to instilled shame. If nobody is talking about it, then it must be wrong. As dictated by society, this is just one of the many ‘shameful’ things in the female body.”
So you can see why girls don’t often talk about their periods with their families, let alone doctors. And when they do share their symptoms with a physician, they’re often given the same answer that was hurled at me. (I’d be remiss not to say, however, that since I left Egypt, public discourse on women’s health has increased, primarily led by a younger generation of Egyptians with the help of social media. A digital marketing agency in Cairo, for example, recently granted women paid time off during their menstrual cycles.) In reality, lack of education and being told that “it’s all in your head” is prevalent in so many other countries.
Throughout my late teens and 20s, I continued living with the same idea ingrained in my brain — this is normal. It’s just the way it is. Some women have it easy. Others, like me, will always have to slog through that time of the month, and there isn’t much I can do about it. Life’s unfair, yada, yada, yada. I kept reminding myself, “Hey, it could be a lot worse.” This type of thinking didn’t really change until a few years ago, when a close friend told me she had endometriosis. “What’s endometriosis?” I asked. My jaw loosened as I listened to her describe her battles as though they were my own. Shortly after, I asked my doctor for a referral to an OBGYN.
After an exam and a series of questions, my doctor confirmed my suspicions. “You have endometriosis,” he said flatly. I’d have to go on birth control immediately, he told me. Birth control? I told him I was wary of the many side effects — from weight gain to depression to mood swings. My friend who first opened my eyes to the diseases told me how she had struggled with its numerous side effects. “Why are you worried?” he said. “Many models take it.” Models? I furrowed my brows but kept quiet. I took the oral contraceptive samples the receptionist gave me, and I walked out of the office.
Over the year (and a few months) that followed, I struggled with the very same side effects I expressed concerns about. Two to three weeks out of the month, I experienced chronic nausea — to the point where it got difficult for me to sit upright at my desk. All of my favorite dishes (and I really am quite the foodie) were off the table. The only things I had an appetite for were French fries and potato chips, and though I only gained five pounds that year, I couldn’t imagine this kind of dependence on fried food was good for me in the long run. I remember taking my mom out for dinner and sitting in front of a delicious plate of cracked pepper bucatini with manila clams, pancetta, parmesan and smoked cured egg yolk — and not wanting any of it. In fact, I felt so nauseated that my mind blocked out everything from that day. All I wanted to do was go home, crawl under my duvet and sleep off the queasiness. Not to mention, on top of a terrible diet, I still struggled with random, mind-numbing abdominal pains throughout the month and severe headaches.
I’d explain my symptoms to my gynecologist, and he’d just tell me to stick with the plan. Once or twice, he changed my pill brand without letting me know, and I had to adjust to new side effects all over again. Unfortunately, this wasn’t the first time my pain and frustration was dismissed by a physician. It wasn’t the first time I asked for help and didn’t get it. “According to a 2017 study, doctors are significantly more likely to dismiss the pain symptoms of young female patients than those of male ones,” science writer Laurie Edwards wrote in the NY Times. “This can cause lasting damage to the relationships between doctors and their patients.” Women are also more likely to be told that their pain is psychosomatic or “all in their head.” They’re also more likely to wait for longer periods of time in an emergency room, and get prescribed less pain medication than males. And this is an even bigger reality for women of color in America.
What was wrong with me now had a name, and my years of pain had validation. But there was still no relief. It felt like a familiar moment. It is what it is — I found myself pulled into a dangerous mindset, and it was easy to get used to something rather than deal with the recurring disappointment of trying to change it. But one thing you need to know? This is a progressive disease. Meaning, it only gets worse. Left untreated, it can cause infertility, certain cancers, increased risk of miscarriage and a slew of other health problems. That’s not saying anything about the toll it takes on your mental health.
All to say, for those of you who have endo, I hear you. Don’t give up on the quest to find a doctor who hears you, not just sits there pretending to listen. There are good folks out there who care about your journey and recovery. Over the last two months, I changed my insurance and primary care physician. So far, he’s been responsive, and we’ve worked together to change my treatment plan. I took a lot of research on my part, and a bit on his, but I’m even about to try my hand at physical therapy (which most doctors won’t even tell you exists for endometriosis patients.) The important lesson to learn here is to never be complacent and to always be an advocate for your health. Endometriosis is relentless in its assault on your body — and you should be relentless in your quest to fight it.
For those of you who don’t have endo, be kind to your acquaintances who do. Try to understand their day-to-day struggles. That coworker sitting across from you at work? She could be putting on a strong face, willing herself not to double over in pain. (I know I’ve been there.) One of the few positive things that I came out of the pandemic was a newfound appreciation for remote work. I hope that flexible schedules continue post-Covid-19, and that it can give women who struggle with endometriosis a bit of relief. I hope we can continue to open our eyes, hearts and minds to truly understanding women and their pain.