In the spring of 2014, I was 23 and finishing my first year of grad school for my MFA in poetry at the University of North Carolina in Wilmington. I had begun to notice painful symptoms after having sex: a feverish feeling, an inability to walk or sit comfortably for hours afterward, and swelling in my left labia. The swelling was minor at first—a small lump that seemed to shrink within a few hours.
When I searched online for what might be going on, I discovered a wide array of reasons for swelling after sex including an allergic reaction to latex, not enough lubrication, or even a UTI. None of these potential culprits seemed serious enough for major concern. After each subsequent sexual experience, however, the swelling and pain only got more intense, and it took longer and longer for it to subside.
At the time, I was casually and exclusively dating a man 12 years my senior. A few months after I first noticed the swelling, the pain became intense enough that I cried and expressed my concerns to him. Perhaps he was frustrated that he couldn’t be of help, or doubted me because I’d never shared these symptoms with him before. Either way, I distinctly remember him growing exasperated and asking me, “Why can’t you just let your body heal itself?”
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Deflated, angry, and embarrassed, I rolled over and feigned sleep. It was strange to me that he perceived this to be my fault in some way, that I just had to “let” my body heal. I didn’t mention it again.
By September 2014, the swelling had become so extreme that my left labia would expand to four or five times its normal size after sex.
That’s when I became worried enough to schedule a visit with an ob-gyn. After I shared my symptoms with her, she told me the cause could be ovarian cysts. She gave me an examination and an STI test, both of which revealed no problems. Since the swelling would always dissipate, there was nothing for her to diagnose. After I sat back up on the examination table, she said, “Emily, there’s nothing there.”
I knew she had to be wrong. I wondered how long until the next time the swelling would be bad enough that I could reschedule an appointment to convince her I was telling the truth. I wondered if the pain level would be intolerable by that point. She recommended various lubricants to use and sexual positions to avoid, but that was the extent of the advice.
As time went on, my symptoms persisted and the swelling grew worse. It took months for me to seek out a second opinion, and I’m still not sure why. I suppose it had to do with the fact that both my doctor and my partner so authoritatively dismissed my concerns, not to mention the societal shame around talking about vaginal health issues.
I told myself that as long as my blood work came back normal during regular physicals, there probably wasn’t a malignant underlying cause that would result in serious health complications.
So, in order to cope, I limited my sexual activity. When I did have sex, I just braced myself for the pain afterwards and dealt with it quietly. As a young woman who had grown up in a conservative, rural North Carolina town, I’d spent a lot of my early adulthood dismantling the idea that women shouldn’t derive pleasure from sex. Yet here I was, years later, resorting back to that idea because I was tired and embarrassed of sharing my symptoms with people who either didn’t believe me or couldn’t verify them.
Over a year after my symptoms first emerged, they became impossible to ignore.
During the summer of 2015, I was staying with my best friend after her first pregnancy. At this point, the swelling prevented me from walking too far or sitting in one place for too long. When my best friend saw how limited my mobility was, she called her sister who was a medical school student at the time.
Over the phone, her sister asked me to imagine my vagina was a clock. If the clitoris was 12 o’clock, then did the swelling happen near the 9 o’clock spot on my labia? “Yes,” I told her. Was the swelling soft or hard? “Soft at first, but lately it had grown stretched and taut,” I said.
She told me she thought I had a cyst on my Bartholin’s gland and that it had probably become infected, and may need to be drained as soon as possible. Though I didn’t look forward to that procedure, I was now equipped with specific language to describe my condition, and that filled me with immense relief and confidence.
The next day, I drove the four hours from my friend’s home to mine in extreme pain and immediately scheduled an appointment with a new ob-gyn.
Later that week, the doctor confirmed the cyst on my left Bartholin’s gland and told me it had indeed become severely infected. She ruptured and drained it immediately.
The doctor wasn’t sure what specifically caused my cyst. But as I learned, each side of the labia has a Bartholin’s gland, which helps lubricate the vagina. When one of those glands becomes clogged (a common occurrence), fluid can build up inside and form a cyst which can then become infected.
My cysts continued to return and become infected, so we removed my left gland surgically in December 2015. My new boyfriend (bless his heart) met my parents for the first time in the hospital waiting room. One week after I finished paying off the hospital bills for that procedure, cysts formed on my right gland. That gland was removed surgically in April 2018.
The experience left me with severe health anxiety.
Because my previous health concerns had gone unheeded, I became hypervigilant in scanning my body for possible illnesses and then scheduling doctor’s visits to share my concerns.
It became hard to trust doctors when they told me nothing was wrong. A knot in my thigh that I knew was just scarred cartilage suddenly needed two more medical opinions because what if I was wrong? What if it was a tumor?
My fixation on my teeth was the worst. Any small discomfort in my gums would send me into a panic about potential root canals for days. I scheduled nine dentist appointments within 12 months, only to have patient nurses examine me, find no signs of decay, and say, “Better safe than sorry, honey,” as they sent me home with a new toothbrush.
I could no longer control the toxic thought spirals. I would convince myself something was wrong with my body at all times, and that the sooner I found a doctor who agreed, the sooner I could heal myself.
In July of 2017, I realized just how bad my anxiety had gotten. On a vacation with my boyfriend’s family in Chicago, I noticed for the first time a floater in my vision as we took a boat tour of the Chicago River. I put on sunglasses so no one could see my cry. This experience was supposed to be a nice family outing, and there I was ruining it for myself because I was convinced I would go blind.
When we returned home, I sought out therapy. That, along with meditation and jogging, helps me keep my toxic thought spirals and health anxiety to a minimum. My therapist told me to imagine my toxic thoughts as an entity outside of myself—someone I could thank for trying to keep me safe and then politely dismiss.
This advice became the catalyst for a writing project that allowed me to both explore and deconstruct the power my health anxiety had over me by following an imaginary goddess named Hypochondria. Ultimately, this culminated in my second poetry chapbook, Hypochondria, Least Powerful of the Greek Gods, which is soon to be released with Glass Poetry Press.
While this experience has been challenging, I am grateful my cysts were neither chronic nor life-threatening.
I also benefited from having both health insurance and white privilege. Women’s pain in general is often overlooked in the medical profession, but this is especially true for the pain of Black and trans women. Donating to nonprofits like the Black Women’s Health Imperative and The Trevor Project is a great way to be an advocate for equity.
This experience has also reminded me how important it is to fight stigma and shame when discussing sexual and mental health. My younger sister is now the age I was when my first symptoms occurred. I ask if she gets regular check-ups, if she has protection, and if her partners treat her with respect—probably to the point of pestering her. Now that many of my closest friends are becoming first-time mothers, I also make sure to be a resource to them as they navigate the physical after-effects and the emotional landscape of labor and early motherhood. There is not a symptom or story of theirs I dismiss.
When I visit a doctor’s office now, I advocate for myself. I share any concerns up front and candidly. I ask follow-up questions. I ask a second set of follow-up questions, if necessary. And then I promise myself not to fixate on false toxic thoughts. My body is no longer my most important poetry prompt, even though it helped me write a pretty good book.
