Problematizing Fertility, Normalizing Disease

At the end of November last year, I had my second endometriosis surgery. My first was excision surgery—the “gold standard” in treating endometriosis—with a well-trained surgeon in 2019. Endometriosis has a recurrence rate after excision surgery of anywhere from 6 percent to 67 percent, depending on the study, but my surgeon was confident she’d removed all the disease and it wouldn’t come back for a while, if ever.

My symptoms returned a year later, but I was fortunate enough to be able to get pregnant after my husband and I got married that year. It wasn’t until our daughter was a year and a half old that I started feeling the telltale signs again (symptoms of endometriosis can include severe cramping during periods, heavy bleeding during periods, pelvic pain outside of periods, and gastrointestinal symptoms, among others). I went back to see my surgeon, scheduled another laparoscopic surgery, and sure enough—the disease was back, in all of the same spots. She removed it all . . .  again.

At my post-op appointment, my surgeon told me that of the second-time surgeries she’d performed so far in her career, mine was the worst. There’s no rhyme or reason for it; I was following her recommendations in terms of diet to try to stave off inflammation, but ultimately, researchers still don’t know much about the cause of endometriosis. There is no consensus on its cause or best treatments (other than surgery), and there is no definitive cure (not even hysterectomy, though it sometimes appears to be helpful when accompanied by excision surgery).

In my experience as a woman with endometriosis (as well as polycystic ovary syndrome, or PCOS) and as a mother who’s given birth once and is now pregnant again, I’ve found that the medical establishment over-pathologizes fertility and under-pathologizes actual fertility-related conditions. Neither approach is good for women—or our culture.

When Fertility Becomes a Disease

The birth control pill (and abortion pills) are among the only medications prescribed to stop a healthy process from occurring (though anti-aging scientists have long been working on medications that slow or stop aging).

It’s true that for many women, the pill is prescribed in an attempt to treat symptoms, and I’ll discuss that more in a bit. But it’s become axiomatic in Western culture to say that women “need” the birth control pill in order to (fill in the blank—build a career, have a fulfilling life, become equal to men). It’s not unusual to hear people call the introduction of the birth control pill a “turning point” in women’s integration into the workplace.

The unspoken part of this statement is that women must have bodies like men in order to work in the same professions men do. The inconveniences of the menstrual cycle, pregnancy, childbirth, and postpartum healing must be removed in order for women to have successful careers.

Indeed, our bodies cause great inconvenience. Nothing about menstruation, ovulation, or having children is convenient, after all. But it’s the way we were created, and there are better ways to respond to the sexual asymmetry of men and women, as Erika Bachiochi has written. What are we losing out on if we suppress it?

For one thing, the birth control pill stops ovulation from occurring—but we know that a healthy cycle (consisting of the rise and fall of hormones that trigger ovulation and menstruation) is a sign of health. Just like blood pressure, body temperature, heart rate, and respiratory rate, tracking our cycles can alert us to certain health problems. When we ignore, or, worse, suppress our cycles, we miss important information about our health.

A normal cycle doesn’t just tell us about our health, though—it supports it. By telling women that we need the pill in order to have a fulfilling life, we are pathologizing the healthy female body at a potentially high cost to that body. We’ve also turned pregnancy into a disease (literally, as in this recent Journal of Medical Ethics article) to be feared rather than a natural and rewarding (albeit challenging) process that’s necessary for human survival. The result? A society that is notably antagonistic to parenthood and young children.

When women are told that the creation of the birth control pill was necessary for our entry into the workplace, what we’re really being told is that we need to get rid of our fertility in order to have an equal footing with male colleagues. This lie has enabled employers to avoid paying parental leave, doubt mothers’ ambition and qualifications, penalize mothers for taking career breaks to care for children, and keep truly flexible work options (options that help mothers care for children) off the table. After all, if a woman can simply use birth control (and get an abortion when it fails), why should companies have to accommodate her fertility?

Our culture’s antipathy toward children doesn’t end at the workplace, though. Airplane passengers complain about crying babies, airport security never seems to know what to do with formula and breastmilk, lactating mothers often have nowhere in public to nurse or pump, and many public places are not only not accommodating to children but explicitly discourage or forbid their presence. I’ve seen several articles recently, for instance, about restaurants that have begun banning children.

There are many factors that contribute to the family-unfriendliness of our culture, but the fact that fertility and pregnancy are now viewed not as challenging gifts but as diseases to be prevented at all costs is high among them.

When Disease Becomes Normal

I first saw a gynecologist when I was seventeen years old. I’d been experiencing debilitating pain and heavy bleeding ever since my first menstrual period. The gynecologist was kind, but after an excruciating pelvic exam, she told me I had “irregular cycles,” prescribed the birth control pill, and sent me on my way. No diagnosis. No explanation of why I was in so much pain. And because I had so many female family members with similar experiences, I assumed my experience was typical—that those who had painless cycles were the lucky few, the exception. 

When I was finally diagnosed with endometriosis and PCOS more than a decade later, I learned the truth: “Common” doesn’t mean “normal.” “Typical” doesn’t mean “healthy.” And severe pain isn’t a natural byproduct of a menstrual cycle. So why do so many women suffer without help? There are several reasons. One possibility is that doctors tend not to take women’s pain as seriously (or treat it as promptly) as they do men’s. Anecdotal evidence from female patients, like me, abounds, but there is also some scientific research that supports this idea.

Additionally, most doctors are not well trained in gynecological problems. Standard medical training does not typically include training on fertility awareness methods or effective alternatives to birth control, for example. Many doctors are well-intentioned and believe that birth control is a woman’s best option to prevent pregnancy or treat conditions like endometriosis.

Endometriosis in particular is a tricky illness. It’s almost always invisible on any kind of imaging and, therefore, is typically only diagnosable through laparoscopic surgery. Even then, excision surgery is difficult, and only well-trained surgeons can perform it effectively. Most gynecologists do not have this specialized training, and it’s not realistic to expect them to. Unfortunately, however, most also do not know that this training is necessary to effectively treat endometriosis, which means that they don’t refer their patients with endometriosis symptoms to specialists who can help.

To add to the problem, doctors are under a lot of pressure to diagnose and treat patients as quickly as possible. As one cardiology fellow wrote in the Washington Post:

Taking the time to attend to multiple patients’ concerns before rounds means not finishing discharge paperwork in time and being labeled as inefficient. Calling back my primary care patients to answer questions about their test results means sacrificing three hours on my day off and upsetting my loved ones, who already feel low-priority during my training.

Doctors are often incentivized and penalized based on how many patients they see and treat quickly—not how thoroughly they search for root causes of their symptoms. As a result, many patients, especially those with difficult-to-diagnose and difficult-to-treat conditions like endometriosis, wind up with something that helps manage symptoms rather than something that treats disease.

We live in a society that values the quick fix. We want the five-step, 800-word article that will solve all of our problems. We want the doctor who can quickly tell us what’s wrong and give us a pill to make it right. When it comes to the messy, complicated reality of fertility and family, there is no quick fix. There is no 100 percent foolproof way to make sure you don’t get pregnant (at least as long as you’re having sex). There is no 100 percent foolproof way to make sure you do get pregnant. There’s no decision tree that can tell you when the exact right time is to have a child. And, at least for now, there are no clear answers about many, many gynecological diseases. (I trust my surgeon more because she acknowledges her inability to give me satisfying answers to many of my endometriosis questions than if she told me exactly why I got it, why it came back, and that any form of treatment would be a permanent solution.)

A woman’s fertility and the existence of her children are a reminder that ultimately, we are not in control—that life is inconvenient and difficult. For anyone courageous enough to accept that reality, however, they’re also an invitation to trust, surrender, and peace—no matter what life throws at us.

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