Pain Thresholds

An Endometriosis Story

Every day it feels like another dig into our shared humanity. For instance, I was struck by the recent headline that Musk wants to save Western civilization from empathy. The lack of visibility and transparency of what DOGE is doing to the institutions that (albeit not perfect) are essential to making our society run is unnerving. With every cumulative insult, it feels like we are becoming numb to the reality of the unraveling all around us.

I can’t stop thinking about how our numbness to multiple insults – everything everywhere all at once – is a common experience of people who experience marginalization from a complex chronic health condition, minoritized identity, or financial insecurity. In fact, the numbness to the multiple insults that’s emerged feels differently to everyone. That doesn’t make the causes of the pain, or the manifestation of its aggression, any less real.

Photo by Žygimantas Dukauskas on Unsplash

Let me explain with a story of endometriosis – a condition for which many women described to me how their pain was so extraordinary that their pain thresholds were off the charts.

Cora’s Endo Story

Cora Salkovskis had her period for the first time when she was twelve. It felt like there was a lot of blood and it was uncomfortable but she assumed it was normal. The second time was so painful, her mother called her primary care doctor and urgent care. She filled up pads and full tampons in ten minutes. She lost so much blood. It was even more unnerving for her, at twelve, because they were traveling out of the country. The bleeding and pain she experienced, however, remain crystal clear. She was scared but the doctors said there was nothing wrong with her. For the next several years, she would buy enough pain medication and pads to get her through each month. The pain became so immobilizing that she’d often have to spend a day at home, curled up in a ball as the pain seared through her body. Still, the scans said she was perfectly normal.

Cora is a white woman who grew up in the United Kingdom, with middle income roots. We met over coffee near campus when she was a visiting fellow with our medical humanities program at Georgetown University. I was curious about her work on 18^th Century asylums, but it was her personal story that gripped me. It took fourteen years for a physician to tell her that she believed that she was in pain, that the pain was real, and they would get to the bottom of it. However, Cora’s symptoms are typical of endometriosis, a condition that has been recognized since the beginning of the medical record. For centuries, endometriosis was referred to as a wandering uterus, suffocating womb, ovaritis, pelvic insanity, menstrual madness, and hysteria itself.

It wasn’t until the late 1880s, when endometriosis was recognized and studied as a distinct disease, and in the 1920s, when real biological causes were behind the abdominal and obstetric pain and menstrual bleeding. In 1927, a gynecologist at Albany Hospital named John Sampson examined biopsies of endometrial tissue growing cysts on and surrounding his patients’ ovaries through a microscope. Sampson coined the term “endometriosis” based on 293 cases he’d examined over a period of five years, theorizing that menstrual blood carried with it sloughs of tissue that flowed through the fallopian tubes and implanted onto the ovaries or perineum, causing extraordinary pain.[ii] While this was a very clear explanation of what happens, the question remains: why? To this day, gynecologists call it “a riddle of etiology.”

Yet, endometriosis is extraordinarily common. It’s estimated that one in ten women around the world experience endometriosis, and that it takes between six and ten years from one’s first symptoms to be correctly diagnosed. Endometriosis is particularly hard to diagnose because its characteristically hidden: it’s a disease where tissues like the lining of the uterus grow outside the uterus, causing extraordinary pain in the pelvis that prevents some people from getting pregnant. It can start with the first menstrual period, which was most likely the case for Cora, and continue until menopause. This leads to inflammation and scar tissues that form in the pelvic region and (infrequently) beyond. What’s troubling for people like Cora, and many people I interviewed, is that their pain thresholds are extraordinary. “I tend not to be an alarmist,” Cora told me. “So if I keep going (like for a walk, which helps), then I can delay the pain.” At age eighteen she was invited to participate in a pain study; however, her pain threshold was so high that they wouldn’t enroll her.

It’s not only pain, however. Cora has extraordinary bloating, which at the worst points can make her look several months pregnant. For those whose lining grows to encapsulate the ovaries and the fallopian tubes, the condition is commonly caught in an ultrasound, CT scan, or MRI. The only way to diagnose endo officially is to have laparoscopy, where the surgeon goes through the bellybutton with a camera scope to take a closer look at your organs. However, Cora’s ultrasound resulted in nothing; this is because, they would discover later, Cora’s endometriosis was outside the uterus and could only be fixed with a painful surgery (and the tissues would grow back). They continued with pain management—which the doctors thought this was positive because she could still have children (something Cora deeply desired).

Photo by Klara Kulikova on Unsplash

Cora’s path for a diagnosis was painful. “You go through this weird defamiliarization process,” Cora said. “You don’t know what’s going on with your body.” Cora was 26 years old when the first doctor believed that her symptoms were real. This was amid the first year of the COVID pandemic, after she passed out alone in a second floor flat in London holding a kitchen knife. She’d given up on medical care years after being dismissed so many times for having heavy periods. When she sought care this time (in the midst of personal crisis), the young doctor said to her: “Any level of pain is unacceptable to us and it requires an investigation.”

Cora’s tests suggested she was anemic and vitamin deficient, which could not explain her pain. The doctor asked her about her family history of reproductive health problems and Cora realized that no one had ever asked her about family history. She mentioned that her aunt had endometriosis but the situation was unclear. Cora wasn’t sure if the reason she was asked about her family history and taken seriously by this doctor was because the doctor was a woman, around her age, or something else—but Cora finally felt seen.

The doctor ordered an ultrasound but the exam didn’t go well. The ultrasound tech (who was conceivably stressed out and cold) pulled out a tool and shoved it into Cora without any warning. “It felt like assault,” she said. This type of “medical ablism” is not uncommon where clinicians perceive people with disabilities to have a lower quality of life and therefore offer less information during medical care and procedures. Although her parents were both employed by the NHS, and believe in public service, together with her parents Cora decided to seek out a private consultation for Cora after this event that was so violating.

Soon after, Cora’s new gynecologist looked her in the eye and said, “I have clinically diagnosed you with endometriosis based on the clinical signs and symptoms.” But still it was difficult to disentangle where the tissues had grown—like many people with endometriosis, it can blend in with other tissues surrounding the uterus and, despite the extraordinary pain, not be clearly visible. The specialist helped Cora get a hormone coil, or an intrauterine device, inserted that helped manage her symptoms. This was the first time she felt some of the pain subside. Cora told me, however, that perhaps the recognition of her pain by the medical community, and having the endometriosis diagnosis for the first time, was a part of that relief, too.