When It Comes to Endometriosis, “Doing Your Own Research” Might Actually Be Necessary

When It Comes to Endometriosis, “Doing Your Own Research” Might Actually Be Necessary

When It Comes to Endometriosis, “Doing Your Own Research” Might Actually Be Necessary

The health care system often neglects women and people with uteruses. For those who suffer from invisible diseases, informing oneself can be life-saving work.


The phrase “do your own research” or “DYOR” has long been a fixture in conspiracy theory circles. During the height of the pandemic, you might have seen Halloween gravestone decorations engraved with “I did my own research” or photos of a scientist in a lab juxtaposed against some guy looking at his phone. The phrase has been coopted by anti-vaxxers and talking heads like Alex Jones, who have evangelized taking means into your own hands rather than following the advice of trained and certified scientific experts.

This is a tack we should reject and fear in the context of infectious disease. Alex Jones has spread dangerous lies about immunology, 9/11, and the Sandy Hook shooting. For his false claims about the last of these, he now owes upwards of a billion dollars to those whose lives he’s damaged. We should, of course, rely on medical authorities when it comes to a highly contagious and sometimes lethal virus whose spread depends on how the public chooses to behave. But the phrase “doing one’s own research” can strike a different chord in the context of women’s health care, as I have learned through my own experiences with endometriosis: a painful condition in which uterine tissues grow outside the uterus, swell and bleed, and often lead to the formation of cysts, scar tissue, or lesions. These and other chronic diseases affecting women and those with uteruses are under-researched and typically poorly understood by doctors, leaving patients little choice but to pursue independent research. This is far from ideal; DIY health care can circulate ineffective or even dangerous practices, and we all have that friend whose WebMD habit is the source of more anxiety than enlightenment. But in the absence of adequate health care, patient dialogue on forums such as Reddit can be empowering and useful. Anecdotes may not count for much to scientists, but for people in pain, they can be vital breadcrumbs on the path to relief.

Though difficult to prove, it would come as no surprise to me if women were doing independent research at higher rates than men. Scientists and doctors often fail to consider the particularities of women’s bodies when studying everything from heart disease to car accidents, missing symptomatic warning signs and failing to anticipate the adverse effects of treatment. Research on health issues primarily affecting women is also underfunded, and doctors still underestimate women’s pain. In her 2018 book Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, endometriosis survivor Abby Norman writes, “A 1990 study found that after operations, women are more likely to be given sedatives, whereas men are more likely to be given pain medication.” Women, it seems, are thought to be more dramatic than affected.

It would take me nearly two decades of pain before I would be diagnosed with endometriosis and adenomyosis, a related condition in which endometrial tissue grows into the muscle wall of the uterus, making it inaccessible for laparoscopic removal. When I was 15, I was diagnosed with “bad cramps”—as my pediatrician understood it, there were simply a large range of menstrual experiences, and I was among the unlucky. I don’t really blame her for her ignorance back then; I’ve reserved my anger for the doctors who inferred that my problem was “low pain tolerance.” This is not atypical. Most endometriosis patients tell of suffering for years or even decades before receiving a diagnosis.

Through my teens and 20s, I got by on a cocktail of high-dose combination birth control (which caused emotional problems), and handfuls of over-the-counter painkillers like ibuprofen, acetaminophen, and naproxen. But by my late 20s, the pain became unmanageable. It began to spread throughout my abdomen, until it felt like too-tight fishing line had tangled itself around my bowels. (Endometrial tissue can invade the ovaries and fallopian tubes, but also other organs such as the bladder, colon, intestines, and kidneys, sometimes interfering with their functions.) Because I did not then understand the nature of endometriosis, I hypothesized that the bowel pain was somehow related to my flagrant abuse of ibuprofen, so I quit it cold turkey, muscling through the agony with no more than a hot bath as palliative. Now that I’ve birthed a child, I can confidently say the pelvic pain during my periods at this time was comparable to unmedicated active labor—only without the reprieve between contractions.

Around the time I quit pain relievers, I also developed debilitating migraines, which lasted as long as three days at a time. This state of affairs grew progressively worse over the course of five years, until I averaged about one migraine per week. Between the head and abdominal pain, I struggled to get out of bed. Nothing could alleviate the migraines; painkillers only seemed to make them angrier. I developed crushing anxiety and panic attacks. And worst of all, I could feel that some of the people in my life had begun to doubt the coincidence of so many torturous afflictions, and I could understand why: How could all of these ailments befall one person and all at once? I sensed on friends’ faces the same doubts I’d encountered from doctors. Had I just given up on life? Was I manufacturing excuses to stay in bed? At a certain point, I began to wonder if maybe I did have a low pain-tolerance. Maybe I was crazy.

Endometriosis patients commonly complain of not being believed, and instead having scrutiny turned on them. Why can’t they tolerate what menstruating people throughout history have borne with minimal complaint? The experience of seeking treatment often parallels the other ways that institutions consistently fail to see women as authorities over their own bodies: governments that criminalize abortion care, hospitals that fail to respect patients’ birthing preferences, and justice systems that distrust victims of sexual assault, for example.

What perhaps is most egregious, but little discussed, is the exaggerated disregard that endometriosis sufferers who do not wish to become pregnant receive from doctors. Endometriosis can interfere with fertility if it spreads to the ovaries or fallopian tubes, and in these cases, doctors are quick to recommend precise laparoscopic surgery in an effort to salvage the organs’ functions. In cases where the primary concern is pain, however, sometimes the most effective approach involves more aggressive surgical excision or organ removal that can leave the patient infertile, but mercifully relieved of some of their symptoms. But despite some patients’ insistence that they wish to remain child-free, paternalistic doctors can be loath to pursue this course of action. In her book, Norman writes:

During my first operation, my doctor discovered a blood-filled endometrioma, or cyst, that was at risk of rupturing. She chose not to remove the cyst because it was attached to one of my fallopian tubes and she was afraid surgery would cause damage… I didn’t want to have children, so damage to my fallopian tube didn’t concern me. The costs that did concern me—the pain, the nausea, the loss of activities I loved (eating, dance, sex)—didn’t seem to concern my doctor.

Until recently, it was not uncommon for doctors to suggest that endometriosis patients become pregnant if possible, as this was erroneously believed to be a cure for the disease. I have often wondered how this myth survived for as long as it did: It seems that all you’d need to do to dismiss it would be to find a few women in their post-birthing and pre-menopausal years and ask, “Are you still in pain?” Hardly a difficult study. Endometriosis in its more extreme manifestations is a disability, but the Social Security Administration does not officially classify it as such. Because it concerns menstruation, which is taboo to discuss in the workplace, male bosses and coworkers are unlikely to have heard of it, too, which likely dissuades those who suffer from it from saying so. Instead, women suffer in silence.

When I was in pain, I tried everything: prescriptions, acupuncture, meditation, elimination diets, fish oil, vitamins you have probably heard of, and herbs you probably haven’t. Nothing worked. By this point, I was seeing a doctor who had diagnosed me with “presumptive endometriosis;” she did not believe it possible to officially diagnose the disease by any other method than laparoscopy. This did not, however, explain the migraines or the anxiety. Then one day, an acupuncturist suggested I might have my estrogen levels checked. I asked two doctors for labs to measure my hormones; both refused on account of not seeing the point. Unyielded, I ordered an at-home spit test for female sex hormones, which I then mailed into a lab: When the results came back, they indicated a significant hormone imbalance, a so-called estrogen dominance: a term that has only recently been accepted by medical professionals as legitimate. By reading peer-reviewed studies online, I learned that endometriosis sufferers are twice as likely to experience migraines, that estrogen stimulates endometrial tissue growth, that estrogen fluctuations often result in migraine, and that endometrial tissues themselves produce estrogen. I’m no scientist, but I sensed a pattern.

Since no doctor had offered me this information about the disease, I began self-managing it. On forums for “endo warriors,” I found robust conversations among people suffering, some in worse situations than I was in: People who had experienced ruptured cysts or who passed out or couldn’t keep any food down while on their periods. Some had lost jobs and relationships. Logging back online now, years later, I see the same frustration from patients who feel doctors are gaslighting them. “Dependent-Ad-2332” writes on Reddit: “What if they open me up and everything’s fine?”

Many users of these forums are not just conversant in endometriosis, but extremely well-informed. They might have had several laparoscopic surgeries already, and now they’re popping by to ask if anyone has experience with having parts of their intestines removed, and what they might expect if they too pursue this route. Indeed, it was on the forums that I first heard mention of a supplement called Diindolylmethane (DIM): a metabolite of a compound found in cruciferous vegetables, which was meant to help the body break down and dispose of excess estrogen, and has in the last decade or so been proven to modulate estrogen. For some, it had proved life-changing, so I entrusted myself to the lived experience of anonymous women, and ordered the supplement. I burned in my bed with bad symptoms for just under a week, and then one day, I woke up different: It’s been four years and I haven’t had a migraine since. At the suggestion of women on the forums, I got a prescription for progestin-only oral birth control, which made me feel even better. Years later, after I had a baby, I would receive the Mirena IUD, which is thought to not only manage pain but also to halt the spread of endometriosis growth.

While I am glad to be free of pain, my frustration about how this condition and others like it are handled remains. The doctor who first provided the “presumptive endometriosis” diagnosis told me those years ago that my only option was surgery, and that even then, I should expect no more than six months of relief before the lesions grew back and the symptoms returned. She said I should not even bother with an MRI, as it was unlikely to show evidence of the disease. While it’s true that MRIs do not always catch endometrial tissues, sometimes they do, and they are considered by many doctors to be a helpful diagnostic tool. I have never felt so devastated as I did the day I left that doctor’s office. To adopt such a defeatist attitude felt inhumane—but at least she believed that my pain was real. If only she’d spoken to my fellow sufferers online, she might have also believed it was treatable.

After a few pain-free years had passed, during which time my child was born, I decided I needed some firmer answers: Endometriosis is progressive, becoming more painful and more difficult to treat as the years go on, and I worried my new regimen would not protect me forever. At long last, I managed to find a doctor who took the disease seriously, and who even listened when I told her about DIM, responding that she was eager to look into it herself. From my MRI results, she made the obvious and yet much-delayed diagnosis, and I nearly sobbed at the confirmation of what for so long had only been suspected, or even rejected. The doctor encouraged me to monitor the progress of the disease through annual MRIs before I make any major decisions like a hysterectomy, which could have side effects that outweigh its limited ability to control the endometriosis.

If the typical institutional isolation of endometriosis is similar to navigating abortion care or reporting rape, then perhaps forums for endometriosis sufferers might be discussed alongside underground abortion networks or midwifery communities still circulating knowledge that is not usually available through medical establishments. There are many other populations out there—people seeking gender-affirming care, for example, or people navigating antidepressant withdrawal—who benefit from direct access to others’ stories of struggle and success at least as much as they do from a five-minute meeting with a doctor, who may or may not be familiar with the condition the patient is suffering from. Again, doctors should always be consulted first. But it’s not surprising that some people resort to the Internet for medical advice. Health care in this country isn’t just prohibitively expensive; it ignores and dismisses many of us. As it turns out, patients—particularly patients in pain—have more to teach us than institutions would like to acknowledge.

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