On a scale of zero to 10, with zero being no pain at all and 10 being the worst pain imaginable, how is your pain? Because pain is impossible to diagnose objectively, doctors often refer to a chart of emoticons to understand how their patient is feeling. At the bottom of the chart is the frowniest of frowny faces: pure, unadulterated agony. At the top is a carefree and happy smiley face: no pain at all. It’s called the pain scale, and it is tragically flawed. I would know: I suffer from endometriosis, so I am well acquainted with all the various ways doctors try to get you to measure suffering. As I discovered while researching my book, this self-reporting tool is otherwise known as the Numeric Rating Scale, which dates back to the origins of the opioid epidemic, when OxyContin was first approved in the mid-1990s and the American Pain Society developed the Pain as the Fifth Vital Sign initiative. Because the pain scale failed to improve pain outcomes and helped drive the opioid epidemic, a movement has been born in the US to abandon the scale altogether. But it is just that: a movement – not policy. The pain scale is still widely used across medicine. The less commonly used visual analogue scale is an older pain-rating tool. It’s mostly used to measure pain associated with chronic conditions such as endometriosis. It consists of a straight horizontal line; both ends are capped with a short vertical line to mark the extremes of pain. Then the patient is instructed to mark an X to approximate how much they are suffering. Whichever scale a doctor uses, the use of a scale at all brings up an important question: how does your doctor know what your 10 feels like? If I had to describe my period pain to someone who didn’t have endometriosis, I’d say that the heights of my pain felt like a dull knife being dragged across the lowest part of my abdomen, sawing back and forth to slice me open. Sometimes, sitting down on the toilet felt like a dagger being twisted inside my colon, cutting into my perineum. When that happened, the blood would drain from my face, my forehead growing damp with cold sweat, bile rising in my esophagus. I would gasp, trying not to vomit or faint, digging my fingernails into my thighs. And then, after the moment passed, I usually just went back to work. Trying to explain any of this to a person who doesn’t know it first-hand feels useless. Has a doctor or partner ever really experienced a pain like having their testicles pushed into their rectum, then stapled into their intestines – not just once but several times a month, every month, for most of their lives? Has your BFF ever been stabbed directly in the butthole with a serrated bread knife? Has a teacher or employer ever missed a day because their vaginas were full of red-hot shrapnel? All this isn’t good news for sufferers of endometriosis, an incurable disease that many people rate as worse than unmedicated labor. At least, Lara Wellman would certainly say so. In an interview, she described how one period landed her in the ER. “I had my period and I wasn’t feeling well. The best way I could describe it is, it was like a charley horse in my uterus that lasted, like, half an hour. I’ve had three babies. I’ve had a tooth infection. I’ve had pain, right? And I was just brought to tears by it,” says Wellman, who is a white 45-year-old cis woman. After three of these charley horses on one summer’s day, she dragged herself to the ER. “I remember thinking, ‘It would be stupid if I died.’” Until her early 40s, Wellman hadn’t ever considered the possibility that her pain was somehow bigger than other people’s pain, nor that her intense periods were abnormal. It wasn’t until after that first ER visit that she discovered she had endometriosis – a diagnosis she only discovered because she took the initiative to read her file on her health network’s e-records app. It was confirmed in a follow-up with an obstetrician. After a couple more ER visits that summer, Wellman got the full picture: her uterus was adhered to her bladder and intestines. She also had one endometrioma on each of her ovaries, one measuring 8cm and the other 10cm. Her lesions ate her appendix, and her organs were so inflamed the doctor called them “unrecognizable”. She had a total hysterectomy in late 2019, with the surgeon emerging later to tell her: “In case you need reassurance, it was bad in there.” It’s stunning to me that Wellman didn’t seek out care sooner for her pain, but I suppose it’s further testament to the idea that women are socialized to believe pain is part of life. I’m curious, though – was her endometriosis pain really worse than her birthing labors? “A hundred per cent,” she answers without a moment’s hesitation. “I remember one friend who had a baby saying to me, ‘You didn’t scream at all?’ No, I didn’t scream. It was never more painful than a bad period cramp. I think to people who don’t have period cramps like that, labor might be very shocking. But if you’ve had that your whole life, you’re like, ‘Yeah, yeah.’ It hurt, but lots of things hurt. I was never in tears in labor. But there were times, like the second time I went to the ER, where I just spent the whole time crying.” Because there are endless flavors of pain, your doctor can only really compare your pain to their own personal experiences. And if they compare you to other patients, exactly who are they comparing you with? Is it other people with your problem, or other people in general? Are they comparing you predominantly with people of your own gender, or to a mix of genders? If you’re trans or non-binary, how do you get categorized or compared? How can they know the difference between my worst pain and your worst pain? Suddenly the pain scale becomes a tug of war, a battle of who suffers most convincingly. If the doctor’s 10 is the guy who caught on fire during a multi-car pileup on an icy highway, where does my puny little endometriosis pain fall on the scale? The subjectivity of experiencing and judging pain is nowhere near an exact science, and that leaves a lot of room for bias to bloom – especially because most of the world’s chronic pain patients are women. Dr Jeffrey Mogil is a neuroscientist at McGill University who has studied sex differences in pain for 30 years. When we speak, he’s also the Canada research chair in the genetics of pain and the EP Taylor chair in pain studies. He says women make up the majority of chronic pain patients due to a confluence of factors: one, that women are more sensitive to pain; two, that women are more susceptible than men to painful diseases; and three, that women are more likely to go to the doctor, which transforms them from chronic pain sufferers into chronic pain patients. To throw another wrench into all this, Mogil says different genders may not even be operating with the same pain scale. “When you’re talking about sex differences, the problem is, well, what if women have a bigger range than men do? What if they can imagine more pain? And why would they be able to imagine more pain? “Well, if they’ve given birth, they’ve been in more pain than most men ever have. I mean, unless the man in question had a particularly bad injury, or some sort of gunshot wound, or a kidney stone, the woman’s probably been in more pain. So maybe her scale is bigger,” says Mogil. “If she gives you a five and the man gives a five, it looks like they’re giving the same pain rating, but actually the woman’s five is bigger than the man’s five.” Of course, the opposite is usually how that information is interpreted: women’s pain is considered less intense or serious than that of men. If I say my pain is a 10, and a doctor understands that to be a five, maybe I’ll go home with antidepressants instead of pain meds. Endometriosis is a disease that turns star athletes into pill-poppers, straight-A students into high school dropouts, people with rich social lives into recluses. We don’t lose our quality of life. The pain robs us of it through a system that refuses to understand, believe and treat us. All pharmaceutical treatments currently available are palliative, meaning they do not reduce or cure the disease but rather work to make the patient more comfortable. For many people, prescription drugs have little effect. The most helpful intervention is excision surgery, as it physically removes diseased tissue from the body. Unfortunately, surgery is typically reserved for exceptional cases, which means patients are left to take ineffective drugs until their disease becomes exceptional. Meanwhile, new research suggests the average age at diagnosis in the US is 29 for white people, 31 for Black people and 33 for Hispanic people. I was diagnosed at 35, after waiting 24 years. Being robbed of that time is probably the greatest injustice of my life. Routinely encountering these kinds of pain changes our relationships, our goals in life, our bodies and our brains. It compromises our ability to love being alive, to enjoy sex, to make and keep friends, to live up to our fullest potential. We try to make the best of things, only to have our resilience held against us by the people around us. If things are as bad as you say they are, then how can you possibly work, go to school, travel, make art? But when we complain, we are dramatic attention-seekers or self-absorbed narcissists. For so many people, chronic pain becomes a part of how we are perceived by others – and even how we perceive ourselves. It took two decades of agony and a long needle in the back for Denise’s endometriosis to be diagnosed. As a Black Canadian woman, she’d routinely had her pain written off as little more than an exaggeration – until she reported a bleeding nodule of tissue protruding from her belly button. It appeared to be attached to a much larger mass in her abdomen, and X-rays revealed tissue and fluid in her lung. With these cancer red flags, her family doctor pulled out all the stops, ordering a barrage of tests. After the biopsy, she returned to her doctor’s office to get the results. “It’s not cancer,” he told her flatly. “It’s endometriosis.” With that, she was on her own again. When I ask Denise how she feels about the ways she’s been treated, she takes a deep breath and sighs. She considers herself a positive, upbeat person, and she shows up to most of her doctors’ appointments put together in professional work attire and a full face of makeup. She wonders if the way she looks and talks conveys to them that she isn’t suffering – that if she isn’t crying and wearing stained jogging pants, that she is somehow in less pain than she says she is. And so she feels she needs to communicate more assertively to her doctors, but she’s still figuring out how to do it without stepping out of sick-role bounds. When we first speak, she tells me she’s thinking of writing her doctor a letter to ask why she won’t prescribe more naproxen. What she really wants to do, though, is ask her point-blank: “How do you see me? What is it about me that portrays a person who is not ill?” When we touch base a year later, she still hasn’t sent the letter. She’s just been so distracted by and overwhelmed with managing her day-to-day health problems that it’s been tough thinking about the bigger picture. She still plans to write it. Excerpted and adapted from BLEED: Destroying Myths and Misogyny in Endometriosis Care, by Tracey Lindeman. Published by ECW Press Ltd.