Let's get the hard part out of the way first: I have endometriosis.
Endometriosis is a disease where endometrial tissue grows outside the uterus. It's a debilitating condition that affects one in 10 girls and women in the United States. One in 10! That means you probably know someone who has it, and even if you don't, you now know me.
Having endometriosis is like being the substitute teacher for a class that just. isn't. listening. None of the students are sitting in their assigned seats, they're smoking cigarettes in the back of the room, and beating each other up for no reason. It's total anarchy.
I was diagnosed in 2009 along with ovarian cysts, and ended up in the emergency room a few times a year with excruciating, stabbing pain in my pelvic area. After my diagnosis, my doctor put me on medication to shrink the cysts and assured me the best thing to do for my endometriosis was to “monitor the situation.” So I got used to my new normal, and life continued.
In May 2016, Buzzfeed's Another Round podcast posted an episode titled, "Tin Foil & Rabbit Ears (with Padma Lakshmi)." If you've never listened, hosts Heben Nigatu and Tracy Clayton give a platform to things that aren't discussed enough: how to navigate the world as a person of color, gender issues, and mental health. Plus, Tracy's Animal Corner! And corny jokes!
In the interview, Padma discussed her book Love, Loss, and What We Ate: A Memoir and revealed that she had endometriosis, too:
(Endometriosis) affected my intimacy, how effective I was at work, at school, and with my friendships and my family, because being in chronic pain makes all of your nerves on edge. It doesn't allow you to be in a calm, rational, and stress-free state to make your decisions, whatever they are. You're always dealing with a person who is under duress.
I paused the podcast at this point. I didn't know anyone with endometriosis, so it was hard for my friends and family to relate. But there I was, listening to a fellow South Asian woman, a celebrity, on my favorite podcast, validating my experiences with endometriosis.
Padma went on to explain how she finally found some relief through surgical intervention. Together, she and her surgeon, Dr. Tamer Seckin, created the Endometriosis Foundation of America to facilitate surgical training and fund research.
I reached a turning point with my endometriosis in June of this year when the pain came and never left. It was a constant, agonizing, pushing and pulling feeling that sometimes spread to my back and legs. I no longer slept. I worried about losing my job. I felt guilty about every commitment I dropped and every person I disappointed. After my doctor suggested pain medication and more "monitoring," it finally dawned on me: doctors are only people, and sometimes people are wrong.
I listened to the Another Round interview again:
"I've been thinking a lot about how we don't take women's pain seriously," Heben said.
"Pain is your body's way of telling you something is wrong. It's not your lot in life to suffer just because you're a woman," Padma assured.
My pain was not normal. My doctor was not taking my pain seriously and it was time to advocate for myself. I did my research and made an appointment with Dr. Seckin, who was horrified at my scans.
"I can't believe your doctor let it get this bad," he said "You're about to lose an ovary. Or worse."
The endometriosis had spread and was approaching other organs. I was too scared to ask him what "or worse," meant and immediately scheduled a laparoscopy.
I'm almost two months out of surgery and finally pain-free. Pain had become such a regular part of life that I still wake up some mornings anticipating the feeling — like my mind hasn't caught up to my body — but I know I will get there eventually. If I waited any longer to have the surgery, I could have lost my ovaries, the cysts could have burst, or something even worse. There’s a small possibility that I might need surgery again in the future, but at least I have a doctor who is as aggressive as endometriosis is.
If you’re a person with endometriosis, be suspicious of doctors who only prescribe Band-Aid fixes without at least an attempt at a long-term solution. Managing your current pain is important, but addressing the underlying issue is crucial.
So thank you, Another Round. Thank you for existing and letting me see parts of myself in Padma’s story. I’m reminded how important the #RepresentationMatters and #SupportPOCPods movements are; inclusive media can empower, motivate, and introduce possibility. Now, when I listen to Another Round on my commute, I'm reminded how a podcast very well might have saved my life.