Ask Me About My Uterus
In July of 2018, I thought I had woken up next to a severed horse head. Dark red stains covered my white sheets, and everything below my torso felt wet, as if I had peed myself. While I was comforted I hadn’t woken up in the 1972 film The Godfather, I almost fainted upon realizing my legs were drenched in blood belonging to me rather than a horse. This was an offer I desperately wanted to refuse.
An hour after cleaning up the murder scene and two calls to my mother, pain seized my midsection and spread to my lower abdomen. Prior to this, I’d always thought I had a high pain tolerance, but I couldn’t stand the feeling in my body and curled up in a fetal position. I called my doctor immediately, and she told me to take some ibuprofen and lie down for a bit. She attributed the pain and bleeding to my recent change of birth control.
Five months passed. I bled every day since that incident. The pain made focusing on schoolwork much harder and my retail job nearly unbearable at times. My doctor told me to take iron pills, and consider switching birth controls. I made an appointment to have an IUD inserted, which she ensured me would stop the bleeding for good.
Instead, I bled for three more months. My midsection became so bloated I had to go up two pant sizes. The advice nurse at my gynecologist’s office told me it was part of the birth control side effects, though I had never heard of birth control making women bleed for over eight months. After my mother told me not to question a health professional, I tried to wait it out.
The paralyzing pain I experienced during the first incident returned with a vengeance. I called out of work and skipped classes because the cramping left me bedridden, privately uncomfortable. The pain my mother told me I was exaggerating led me to vomit and constant nausea. I couldn’t eat as it made the pain worse and brought me to throw up again. It seemed the only thing I consumed anymore was Midol, a pain medication made specifically for cramping. Often I would take four at a time, twice the amount recommended.
After the pain became too much to bear, I scheduled an emergency visit with my gynecologist, where we did both an external and internal ultrasound to test for uterine cysts. The nurse, who had moments before greeted me cheerily in the waiting room, seemed to maliciously take her time in prodding my insides. She didn’t have to use much lubrication, she said, because I was bleeding so much. I tried to read the following silence for clues as to what might be happening within me. Hearing nothing about the results of either ultrasound, I was escorted to another examination room, where the nurse told me to undress again for yet another exam. She exited and the gynecologist entered a few minutes later.
She wasn’t my regular doctor — instead she sported glasses, a pixie cut, and a warm smile. She had a maternal air about her, which comforted me, almost too much when she asked me what was going on. All my frustration, anger, sadness, and pain flew out of my mouth, with tears streaming down my face. I wanted relief, I begged, just to feel normal again. She explained to me that I had a “hostile uterus,” meaning that my uterus didn’t want anything in it. This caused the excessive bleeding and recent pain, as my body tried to expel my IUD. She also found excessive uterine tissue growth, otherwise known as endometriosis, in the ultrasounds. This tissue had the ability to grow anywhere in my body, causing pain, tissue damage and possible infertility. In a professional matter, the gynecologist began to explain the next steps: a surgery to confirm her diagnosis, medications, and potential fertilization methods.
My diagnosis transformed from birth control adjustment to endometriosis and infertility in one appointment. I was sent out of the office with a prescription for my twelfth birth control and an information packet on egg-freezing methods. I was 20.
I sat in the parking lot alone half an hour after the appointment. Tears and frustration filled the first ten minutes, and when those dried, I sat numb in the driver’s seat, unable to think clearly. Questions raced through my head — Did I want to freeze my eggs? Should I get a hysterectomy? If I had been treated earlier, could something else have been done?
Unfortunately, incidents like this happen quite frequently, with women’s pain often dismissed as psychological or false, causing women who experience chronic illnesses to suffer more than men. This rings especially true for people who have uterus-specific illnesses — the organ is one of the least studied in the medical field. And while doctors should be believing their patients’ pain and treating them accordingly, this problem spreads far deeper than that.
Nearly all health journalism and medical studies are conducted only with cis people or people believed to be cis, discounting others affected by uterine diseases. The trans community specifically hurts more, again, due to lack of research.
A survey conducted for this story revealed that between the 98 women who completed it, 42.8 percent experienced doubt or disbelief concerning their pain. 76.5 percent believed that doctors often disbelieve women's pain or medical concerns. Many women explained that in their experience, their doctor had written off their pain as “hormonal,” or explained that “all they needed was rest.” A majority of the women that took the survey, however, admitted feeling invalidated by doctors.
Laura Kiesel, a Boston-based health journalist, has done extensive research on women’s health alongside Harvard Medical School. Through her studies, she found that women were less likely to be prescribed painkillers after surgery, and that women are seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack. What was most interesting about her findings, however, was the cause behind these disparities.
The medical concepts of most diseases are based on understandings of male physiology. Women have altogether different symptoms than men, and treating them the same way as the opposite sex can lead to misdiagnosis, further pain, and even death. Additionally, 80% of pain studies are conducted on male mice or human men, even though 70% of the people most impacted by chronic pain are women. Kiesel, 40, suffers herself from the organ-specific disease endometriosis, which causes chronic pain, bloating, bleeding and can lead to infertility.
“Since most studies on pain have focused on men, broadly applying their findings to everyone can be dangerous, and reinforces the same gender disparities from which they arise,” says Kiesel. “The result of that would inevitably be that many more women stand to die or suffer in silence, without accessing the treatments they require and deserve in order to find adequate relief.” Applying those same findings from cis subjects to trans patients could also result in further pain and suffering.
Anna is all too familiar with gender disparities within the medical community. Anna, 28, currently works as a nurse practitioner in Massachusetts.
Arriving home from a long shift, she races into another room, returning with a baby bouncing on her hip. “Hi Jack,” she coos. The baby’s big blue eyes look just like his mother’s, though he boasts his dad’s blond hair rather than his mother’s brown. Carefully, Anna positions him onto her lap as she takes a seat on a worn leather chair. She lets him chew on her finger as she kicks off her black sneakers, part of her nursing uniform.
Though her specialty is family practice, Anna says that she works with many trauma patients, whom she handles more delicately than she would a normal patient. “Many of these patients have had horrific experiences with other doctors and medical professionals,” she says, her brow furrowing. “Our practice has guidelines for these trauma patients, and everything in their physical is optional.” Anna also gained experience with trauma patients through her nursing program at the University of Massachusetts, Worcester.
While she studied there, Anna didn’t notice whether she learned more about the male or female body and coinciding medical treatments. She does believe, however, that her studies would have focused more on male treatment had she been studying to be a doctor.
“Nurses focus more on the patient and their symptoms, which can vary,” she says. “Doctors focus more on actual treatment of the patient, and most of those studies focus on the male body.” Anna notes that sadly, Kiesel’s findings weren’t the only ones to boast such results, and that most general treatments are based off of male subjects and their bodies.
The only exceptions to this, however, are uterus-specific diseases, like endometriosis and polycystic ovarian syndrome (PCOS). Anna herself suffers from PCOS, and believes that had she not studied it and been able to self-diagnose, her diagnosis would have been delayed.
“I hadn’t realized anything was wrong until my husband and I started trying for a child,” she says, holding Jack closer to her chest. “Then, when all the hormone shots and pills weren’t working, I figured something was wrong.” It was only when she herself brought up PCOS to her doctor that she was tested and diagnosed with it. “I think I’ve had a good experience because I am a medical professional,” she says. “I know what questions to ask.”
As PCOS can cause multiple reproductive problems, it took a round of in vitro fertilization (IVF) for Anna to conceive, and she says she was lucky with her experience. “I know women who have had to do multiple rounds,” she says, “with doctors who wouldn’t listen to what they wanted or what they were feeling.” Her lips purse as she holds back tears — it’s not clear whether they’re those of weariness or happiness.
Jack was born almost two years ago after a successful IVF treatment, Anna explains. She grins as she points to his shirt that reads “Big Brother.” Out of four eggs she had frozen earlier, Anna was able to conceive again, and learned the day prior that she was pregnant for the second time. “I hope it’s a girl,” she says, grinning.
“I wish I wasn’t a girl,” says Becca Powell, 21. The Northeastern student is clutching her stomach in a way you can tell she’s in pain, while a worn heating pad lies on her abdomen. Her dark brown hair frames her face, which grimaces. Powell was diagnosed at 14 with PCOS, and endometriosis at 16. She believes her diagnoses, however, were delayed.
“I remember being 13 and missing so much school because of the pain,” she says. “I spent most of my time in a fetal position.” Powell adds that her doctor was skeptical of her pain, blaming it on stomach issues and indigestion. It wasn’t until an ovarian cyst ruptured that her doctor believed her pain and referred her to a gynecologist.
“I think part of it was my age,” Powell adds. “I was so young, and I think my doctor thought I was exaggerating.” She also blames her age for her delayed endometriosis diagnosis.
Because there is little research on the uterus-specific illness, surgery is often needed to diagnose it. Powell’s gynecologist pushed back against Powell having the surgery, insisting that she try a new birth control or medication. Powell was sure, however, and after a year of discussing it with her doctor, she was allowed the diagnostic surgery.
“Since then, it’s pretty much been experimenting with what medications and lifestyle choices work for me,” she sighs. Powell has tried sedatives, hormone shots, holistic remedies, and different exercises. “I hate being reliant on them, though,” she says of her painkillers. “I’m unproductive when I take them, and if I don’t take them, I’m in so much pain I can’t move.” She gestures towards her current position.
A few months ago, Powell visited a specialty doctor at the Boston Center for Endometriosis, in hopes of finding another treatment plan. She ended up leaving in a worse condition than when she arrived.
Powell saw her specialty doctor once a month, where he reviewed her charts in front of her but never saw her in a medical facility. Powell says that he also never looked at the pictorial results of her past surgeries, to her knowledge. Adding to her list of concerns, Powell also says her doctor had to ask for her name every time they met.
Under this doctor’s care, Powell started to take two hormonal supplements, to help with the hormonal imbalance caused by her PCOS and endometriosis. Instead of helping, however, the treatments made Powell feel worse, leaving her anxious, depressed, and in more pain. When she informed her doctor about how she felt, he simply upped the dose of both treatments. Over the course of five months, he upped her dose three times from the original prescription.
Additionally, Powell says her doctor would not sign papers from Northeastern’s disability center. These papers would have allowed Powell to take a lighter course load. He refused to sign them because he “didn’t believe endometriosis was a disability,” she says, her voice trembling with frustration.
Today, Powell exclusively relies on her original gynecologist, and is off the hormonal supplements her previous doctor prescribed. “I don’t believe the treatment was bad because he was a male doctor dealing with a female issue,” she says. “I think it was because he genuinely didn’t listen to my pain.”
Marc Laufer, founder and director of the Boston Center for Endometriosis, declined to comment on the issue.
Mia, 49, began treatment in the late ‘90s for endometriosis. Though she had come to the U.S. in 1991 after leaving her home country of India, she had been unsure of what was causing her pain and hesitated to get treated, especially in a new country.
She recalls this while sitting in her living room, wringing her hands. A couch pillow is wedged between her lower back and the chair she is sitting on, and she adjusts herself so she is comfortable. Upon pushing her short black hair out of her face, she reveals that in the end, she decided she had to relieve her pain.
“At the time, there were many more reproductive diagnoses in the U.S. than India,” she says. “I felt that getting treated in the U.S. would give me a clearer definition of what was wrong and how it could be treated.”
Despite this, Mia traveled back to India in 2000 to have a hysterectomy. “At that point, it wasn’t a matter of who knew more about what,” she says. “My uncle performed the surgery and I knew he would take care of me.” She adds that the surgery was cheaper to have in India.
Disc degenerative disorder, however, forced her back into surgery in 2012. The disorder, separate from her hysterectomy, causes discs between the vertebrae to disintegrate, leading to chronic back pain and restricted movement. Mia had the surgery in the U.S. to relieve her chronic back pain, but says that she wasn’t as taken care of as when she had her hysterectomy. “The U.S. doctors didn’t believe how bad my pain was until the actual surgery,” she says with underlying anger. “It was frustrating, and I felt the doctors believed me even less because I was an Indian woman.” She believes that women are often doubted by their doctors, but fears more for women of color. “They judge you before you tell them what’s wrong,” she says.
What I’ve learned in experiencing that feeling — shared between these four women and countless others — is to be confident in my pain. I will not suffer silently. Instead, I will continue to share my story and fight for reproductive justice. I will listen to my body when it speaks. I will be strong.