1 in 10

For any person with a period, you know the feeling. You wake up and feel a tangible shift in the air. In your heart you know, today is the day. I woke up one day in late August, right before my sophomore year of college with that feeling. I’ve had my period since age 12, but I felt whatever was happening today was different than any time before. I could barely crawl out of bed. So I stayed there with a heating pad thinking about how these cramps seemed to suck more than normal. 

I went to see my gynecologist and we decided that I would go on a birth control pill. After a few months, I was feeling pretty good in terms of pain, so I tried going off birth control in December of the same year. Thus began a downhill journey of experimenting with birth controls and experiencing more pain than I ever knew I could handle. Dramatic, right?

The second semester of my sophomore year in college was a blur. Not only was I working on the major cumulative project for my acting training, but also my symptoms came back worse than ever. I would run to the bathroom to dry heave during class or curl up on the floor to cry before a scene. Every time I looked in the mirror, I hated what I saw. I was depressed, in pain, and had no idea what was wrong with me.

After some Googling, I came across the word endometriosis. I had kind of heard about it before because of Lena Dunham, but I didn’t really know much about it. The symptoms most articles include for endometriosis are: painful periods, painful sex, heavy periods, and infertility. Endometriosis is defined by Mayo Clinic as: “an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus, the endometrium, grows outside your uterus.” It usually presents itself as a mass of cells or uterine lining, and it can sometimes lead to uterine cysts which can usually be seen on an ultrasound.

I went to a gynecologist in NYC, a well meaning man. Before my appointment, I filled out a questionnaire of my symptoms including: cramps, headaches, back pains, anxiety, depression, mood swings... the list goes on. He took one look at my symptoms and asked if I was experiencing these symptoms all the time. I explained that they usually started about 10-14 days before my period. He laughed, and said I had what they call PMDD, which means premenstrual dysphoric disorder, or basically PMS times a million. He did a physical exam and an ultrasound and just as he expected, there was nothing abnormal. He put me on a new birth control pill and he sent me on my way. His final words of advice for me before I left to study abroad in London were: “don’t sleep with any French guys because they all have STIs.”

I had mixed feelings trying to process the appointment; part of me felt relieved that it seemed to just be PMDD, something I figured I was dealing with. I was so overjoyed that the word endometriosis didn’t even seem to flicker across his mind. Besides, my exam and ultrasound were clear, so there were no signs of a problem.

But I still felt confused and lost. I had no other guidance, so I began the new birth control, and for about 6 months, I had almost forgotten how bad the last semester had been. I’m forever grateful for those fleeting months abroad because once spring came around, it got worse. Much worse. 

I met with a new gynecologist, a woman this time, and I was sure this was the turning point. As I cried into her arms, she validated my depression and severe pain. She told me that it’s common for ultrasounds and exams to be clean, but endometriosis could still be present. I had been doing more research, and it did start to seem like a real possibility again. No longer was endometriosis the scariest, worst case scenario. It became a beacon of hope, a label to put on something that had been plaguing me for almost two years. 

I started noticing severe bloating around my periods and after eating certain foods, which is often referred to as an “endo belly.” The bloating cycles back into depression. It causes me severe body dysmorphia because I never really know what my body looks like. I wake up in the morning looking one way, and then by bedtime I look like I’m expecting.

Then came the fall of 2019, my last semester of college. The stress of having to graduate and join the real world was catching up to the stress of full time classes, working part time as a server, auditioning, and maintaining a social life. I went to schedule another appointment with this new doctor over the summer, but I was told she left the office, and I couldn’t find where she was practicing. Then one day in October, I suddenly had pain like I had never felt. 

It was so severe, I couldn’t even cry. I was curled up in a ball on my sofa, unable to watch TV, or even grab my phone from the table in front of me. One of my roommates came home after about two hours of this, and she got my phone for me so I could call my mom. We decided that there was no other choice than to go to the ER. I said that my pain felt like a 9 out of 10 on the pain scale.

Usually the pain around my period feels like a sharp stabbing cramp in my lower abdomen or sometimes just a low rumble of achy pain. I felt both of those types of pain, but also it felt as if there were a bunch of tiny elves in my uterus shredding my insides with tiny forks like they were making pulled pork. It also felt like there was one of those endless clown scarves being pulled out of my vagina, but instead of a fun rainbow scarf, it was a scarf made of knives.

My sister met me at the NYU Langone ER. There were no private areas left for me, so I was put on a cot in the middle of the hallway in the pediatric ER, even though I was 21. After hearing an exhausted mom tell her crying young son they had to spend another night at the ER, I couldn’t help but convince myself that my pain wasn’t as significant. 

Hours crept by as I was scheduled for an ultrasound and a CT scan to rule out appendicitis or a twisted fallopian tube. The woman giving me my ultrasound moved quickly around the outside of my stomach as well as internally, causing me to wince when she sharply pressed on certain parts. At one point she said “It can’t hurt that much. Does it really?” I nodded, scared that if I opened my mouth, the tears would start flowing. The ultrasound looked normal, again. The images from the CT came back clear as well, so my sister and I finally left the ER at 3 AM. 6 hours later and not a single answer. Only many more questions.

I made an appointment with an endometriosis specialist at NYU Langone just a couple of weeks later. She looked at my chart and told me that maybe I had endometriosis, but that my suffering didn’t seem severe enough to warrant surgery. I left her office with yet another birth control prescription and an overwhelming wave of defeat. I continued to tough it out for the rest of the semester and managed to pass all my classes and earn my degree (with honors!)  

Once 2020 began, I felt hopeful. I thought maybe the stress of college and the intensity of my schedule was making my pain worse, which was true. By February, I settled into my new post-grad life. I was waiting tables at a high end restaurant in Tribeca by day and rehearsing for my first post grad play by night. My pain wasn’t gone by any means, but I was managing.

Then, well, we all know what happened next. It was the second week of March and the world shut down. Naturally, my stress skyrocketed. I stayed in NYC and began living with my sister. I didn’t know when I would see my parents or my friends again. Both industries I worked in were screwed. Everything felt hopeless. 

As the days turned to weeks turned to months, I was beginning to settle into this weird lifestyle more. But the periods were hellish. My sister saw firsthand the way my quality of life was being destroyed and confirmed that the bloating was out of control. I had spent the last three years not really telling people the extent of my pain because I thought I was overreacting.

In May, my sister told me that her amazing gynecologist who had been out of the office for the past few years was back! At my appointment, she was ready to create a plan of attack. She told me that the only way to diagnose endometriosis is through a surgery to remove tissue to perform a biopsy.

I took steps to reduce my own pain and inflammation. I cut out gluten and dairy completely and tried to reduce my caffeine, soy, and sugar intake. I began intensive pelvic floor physical therapy twice a week. My pain management specialist suggested acupuncture, muscle relaxers, prescription ibuprofen, and medical cannabis, all of which have helped me tremendously.

I spoke to my doctor after the MRI results came back, and she said there was nothing major, but the scan picked up something on my left ovary that was most likely endometriosis. She told me that there is a 95% chance that it was the disease taking over my life. My surgery is scheduled for October 27th, and I will finally have some clarity.  

Every day I think about my upcoming surgery and panic that they won’t find anything. Does it mean the pain was all in my head? Maybe those other doctors were right. However, 1 in 10 people with uteruses are suspected to have endometriosis and it's considered one of the 20 most painful chronic illnesses in the world, according to a study from the NHS. I learned that the average diagnosis takes seven years. As horrible as some of the medical gaslighting I’ve experienced were, I’ve realized that my experience is not only common, but actually not so bad comparatively. 

I learned that Black people with uteruses were falsely considered “immune” to endometriosis until within the past 35 or so years. When Black people went to their doctors with clear signs of endometriosis, they would automatically be brushed off with a diagnosis of pelvic inflammatory disorder, a disease that is often linked to “sexual promiscuity.”

I am lucky. I’m lucky to be on an insurance plan that covers my appointments. I’m lucky to be white. I’m lucky to be cisgender. Non-binary people and trans men experience endometriosis at the exact same rate as cis women, but they are almost always left out of the discussion. 

I would be nothing without the women, particularly the women of color on my pain management team, including my primary gynecologist. As I write this, heating pad on my belly, I have to stay hopeful that I can live my life to the fullest while battling a chronic illness. 

Only you can understand the amount of pain you are in. Painful periods and painful sex are not normal. Learning to advocate for yourself medically is scary, but nothing is scarier than being in uncontrollable pain. It can feel so isolating to live with a chronic pain disorder. I have to cancel plans, plan around my days of ovulation and menstruation, and struggle with deep intimacy issues rooted in fear avoidance. There may be no cure, but that can’t stop me from fighting to have the best quality of life I can. If you can relate to any part of this, I urge you to take matters into your own hands. You do not have to suffer in silence. You are not alone.

Resources That Have Helped Me:

• Nancy’s Nook (facebook group with lots of information and doctors, but not the end all be all!!)

• Lara Parker (writer for buzzfeed and endometriosis/cannabis activist)

• “Beating Endo” by Dr. Iris Orbach and Amy Stein, PT

• @endo_black, @endounites, @fitendolife, @endohealthhub on Instagram