Millions of people take birth control to treat endometriosis — but it doesn’t work

At 14, after nearly three years of haunting the local urgent care clinic because of my intense menstrual periods, a doctor wrote a script that would alter the course of my life.

It was for the birth control pill.

Like millions of Americans, I was prescribed birth control to treat what would eventually be diagnosed as endometriosis. There’s just one problem: Hormonal contraceptives don’t actually treat the disease. Instead, they mask symptoms — most notably, extreme pain and excessive menstrual bleeding — until the patient decides to stop taking the pill. Once they do, their symptoms almost always come roaring back.

The American College of Obstetricians and Gynecologists (ACOG) has admitted as much in its practice bulletins and other communications. Its 2010 bulletin on endometriosis says plain as day, “There are no data to support use of medical treatment to prevent progression of the disease.” Jeff Arrington, a specialist endometriosis surgeon in Utah, has ruffled feathers by calling all hormonal and pain interventions for endometriosis “palliative.” So why are likely millions of people with endometriosis still on the pill?

I stayed on birth control for 12 years. At 26, I switched to a new pill, Yaz, after experiencing breakthrough bleeding and pain on my previous brand. But Yaz was far worse than the other pill I had been on. Yaz — which was recalled shortly thereafter, and which has been the subject of various lawsuits — quickly thrust me into a state of mind that I can only describe as manic. My emotions became a rickety roller coaster, an unpredictable series of loops, climbs, and precipitous drops that saw me veer on a dime from pleasant contentment to tear-soaked suicidality.

I felt trapped. The pill, plus 500 mg of the NSAID naproxen, were the only solutions I’d ever been offered in a dozen years of doctors’ visits. After more than a decade, I couldn’t take it anymore, so I tossed the blister pack in the trash. Soon, a veil gradually lifted. The filter through which I had understood life changed. I felt steadier, more resilient, clearer-headed. I knew I’d done the right thing.

And then the pain and the bleeding hit me with the force of an 18-wheeler.

For my new book, BLEED: Destroying Myths and Misogyny in Endometriosis Care, I spoke with about four dozen people who have endometriosis, an excruciating condition that affects one in 10 people assigned female at birth, or 5% of the global population. Nearly all of the people I interviewed had been prescribed the pill at some point, most of them in their teens. I’ve heard about hundreds of other stories since I began promoting the book.

Endometriosis is a chronic inflammatory condition characterized by the growth of endometrial-like tissue outside the uterus. The lesions it produces can attach to any and all organs inside the human body, most commonly the bowel and ovaries; some people even have endometriosis in their brains and skin. Most people with the condition experience long, heavy, and extremely painful menstrual periods. Many also experience infertility.

In the U.S., the first-line treatment for endometriosis has been the same since 1957: the birth control pill. Doctors believed — and still believe — that if they can control the reproductive cycle with synthetic hormones, then they can also control the disease. The same logic has led to the increasingly widespread use of GnRH agonists and antagonists like Lupron and Orilissa in the treatment of endometriosis — two medications with very serious side effects (including bone loss) that the American College of Obstetricians and Gynecologists also admits do not stop progression of the disease.

You may be thinking, “What’s the harm of taking an oral contraceptive?” But many people who take hormonal birth control report headaches, depression, diminished libido, weight gain, nausea and acne. They also face a small increased risk for breast cancer.

Those side effects might be bearable if the pill were actually effective at treating or even just mitigating the symptoms of endometriosis. But studies on people with severe pelvic pain, such as those with endometriosis, have remarked on the ineffectiveness of the pill on curbing extreme pain. Additionally, endometriosis patients who want to try to get pregnant obviously can’t take the pill.

A systematic review and meta-analysis from 2011, meanwhile, remarked that “the hypothesis of recommending [oral contraceptives] for primary prevention of endometriosis does not seem sufficiently substantiated” after noting that hormonal contraceptives might even encourage the implantation and growth of endometriosis. A 2017 medical paper further elaborated, noting that oral contraceptives are “not completely effective in the treatment of endometriosis. Furthermore,” the study continues, “switching from one [oral contraceptive pill] to another because of ineffectiveness of pain relief may lead to a delay in the diagnosis of endometriosis.”

That same paper also mentioned that, as of 2017, “only one randomized, placebo-controlled clinical trial has ever been published to investigate the effectiveness of [contraceptives] for pelvic pain and dysmenorrhea in patients with endometriosis.” (That paper said pain relief was moderate, if a trial participant had any relief at all.)

Yet doctors remain stuck in the 1950s. In 1957, the Food and Drug Administration approved the first pill, Enovid, for the treatment of endometriosis based on the research of doctors such as Robert Kistner, who concluded that Enovid — and later, Depo-Provera — induced states of “pseudopregnancy” that suspended ovulation, resulting in the lessening of menstrual pain symptoms.

He came to this conclusion by giving his patients dangerously high dosages of the drugs. In journal articles he wrote about his research, Kistner explained how he gave his endometriosis patients between 40 and 120 milligrams of Enovid a day — well beyond the dosages that produced thrombosis and death in early contraceptive pill users. In 1970, Senate testimony (the transcripts of which can be found online), Kistner admitted to being paid for consulting “practically all of the [drug] companies” making contraceptives.

There is something that appears to treat endometriosis: surgery.

Endometriosis advocates have been pushing the American College of Obstetricians and Gynecologists — without much success — to recognize minimally invasive excision surgery as the gold standard in endometriosis care. These surgeries are typically performed laparoscopically with the help of the da Vinci robotic device, and people who undergo them often experience significant pain relief. Typically, the more complete the excision work, the lower the chance those lesions will recur.

Expert excision of endometriosis lesions can minimize disease recurrence. A 2021 paper on radical excision and shaving of bowel endometriosis in 703 patients showed promising numbers. At 14 months post-op, recurrence rested at just 6.5% — a very low recurrence rate. However, long-term success of surgery depends greatly on the surgeon’s skills, the location of lesions, and the patient’s genes. Studies on endometriosis don’t typically do a great job of accounting for those variables. Indeed, many endometriosis surgeries are done by generalist OB-GYNs who do not have extensive training in this kind of surgery. This reality sees many patients going under the knife multiple times over years, with only fleeting relief — if they get any at all.

I had to take the long way to get relief myself. Hysterectomies do not cure endometriosis. However, in my case, in addition to endometriosis I also had adenomyosis, another painful condition in which the lining of the uterus grows into the muscle wall. Hysterectomies are a cure for adenomyosis — and that’s why, at 35, I had one.

I went into immediate menopause, itself a condition the medical system has a poor track record of treating. But I don’t have periods anymore, and my pain has been greatly reduced.

In a system in which I cannot win, I’ve had to accept that this is good enough.

Tracey Lindeman is a longtime journalist and the author of the new book BLEED: Destroying Myths and Misogyny in Endometriosis Care.