Hugh Taylor has long studied the endometrium, or lining of the uterus. But it was his patients who got him interested in better understanding endometriosis specifically.
Endometriosis is a disease in which tissue similar to the endometrium grows outside the uterus, which can cause severe pain, infertility, and other complications. And while it affects about one in 10 women of reproductive age in the United States, there remain many questions about the disease - including what causes it.
"Being a reproductive endocrinologist, I often see women with endometriosis either because of their pain or because of their infertility issues," said Taylor, the Anita O'Keeffe Young Professor and Chair, Department of Obstetrics Gynecology and Reproductive Sciences at Yale School of Medicine. "It was very frustrating to me seeing many of these women having suffered with this disease for a long time before it was accurately diagnosed."
He added: "I recognized that this is a very common disease that was poorly understood. That didn't sit right with me."
Today, Taylor is an internationally known expert in endometriosis. He is also professor of molecular, cellular, and developmental biology in Yale's Faculty of Arts and Sciences and chief of obstetrics and gynecology at Yale New Haven Hospital.
In an interview, Taylor explains why endometriosis remains so misunderstood despite its prevalence, how it affects the body, and what someone should do if they think they have it.
The interview has been edited for length and clarity.
Why is endometriosis so misunderstood?
Hugh Taylor: Until recently, it was often uncomfortable for people to talk about menses and to talk about pain with menses. It was traditionally something people kept to themself. That reticence included the patients themselves, as well as family members, and even some physicians. Pain with bowel movements can occur with endometriosis; that can also be awkward to talk about. Pain with intercourse can be very personal and is often the hardest conversation. I believe society is opening up to such conversations, so thankfully we're much freer to talk about some of these things than we were in the past. But still, it's a difficult conversation for many, and I think that has prevented the open conversations that might have driven the field forward.
Menstrual cramps are the only type of pain that we as human beings accept as a normal phenomenon. That makes them far too easy to dismiss. When a woman with endometriosis talks to her friends about the pain, the typical first response is, 'I have menstrual cramps too. Just take a Motrin, and don't be a baby.' Endometriosis pain is much more severe and is a progressive pain that gets worse over time. It can be quite debilitating. Pain itself is hard to quantify and somewhat subjective. How can you tell if your pain is inappropriately severe?
Endometriosis is far too often dismissed, uncomfortable to talk about, and, quite frankly, we don't have a full understanding of the disease or great ways to diagnose or treat it.
Many people with endometriosis suffer for years undiagnosed. Why does it take so long to diagnose the disease?
Taylor: It can take five to 10 years, even up to 12, for somebody with clear symptoms of endometriosis to get a real diagnosis. First, it's almost always dismissed initially. Almost all my patients tell me that is what happened to them. Second, the old convention was you couldn't diagnose it without a surgery. That barrier of needing a surgery to make the diagnosis was a huge bottleneck, preventing early diagnosis and treatment. You had to be in a lot of pain before you would undergo a surgery. In reality, today, we can diagnose this clinically, by taking good patient history, an exam, and ruling-out a few other things. We now almost always start treatment for endometriosis without a surgery.
How does endometriosis affect the body? What is it like to live with this disease?
Taylor: This is where a lot of my research has focused on over the last decade. We've proven that endometriosis is a systemic, whole-body disease that affects multiple organ systems. We see increased depression and anxiety in women with endometriosis. Women with endometriosis also tend to be thinner, experience infertility, and have increased sensitivity to pain. Intestinal irritation is also common with endometriosis. The whole abdomen is inflamed. Women can also experience bladder pain. We also see that women with endometriosis have other conditions that worsen with aging. For example, they have an increased risk of atherosclerosis and heart disease later in life.
What treatments exist for people living with endometriosis today? Is newer research opening the door to new treatments?
Taylor: Most of the treatments involve hormones. This is a disease that depends on female reproductive hormones. It is driven by estrogen; it first occurs around the time of the first period, when estrogen levels first rise in women, and it goes away at menopause, when estrogen levels drop. Progesterone, another female hormone, slows endometriosis down. So the mainstays of treatment are hormonal. Today, we often will use a progesterone - or an artificial version of progesterone known as progestin - as the first line treatment. That is most commonly a progestin contained in a birth control.
Another class of drugs that have been used for a long time are agents that lower estrogen, called gonadotropin releasing hormone [GnRH] receptor agonists. They essentially turn the ovaries off. There is now a milder, gentler version of that called GnRH antagonists. These newer drugs slow the ovary down rather than completely turn it off. I was the first author of the study [published in the New England Journal of Medicine] that led to the approval of the first oral GnRH antagonist in the United States in 2017. That led to the use of these medications for endometriosis and now for other conditions such as fibroids.
Our lab is also doing research on other novel treatments for endometriosis. We've identified a few immune therapies, including one that holds tremendous promise. Endometriosis patients are essentially getting internal bleeding every month that inflames the abdomen and the entire body. Refocusing the immune system on clearing that abnormal endometrium is another potential opportunity here.
What advice would you give someone who thinks they might have endometriosis?
Taylor: If somebody thinks they might have endometriosis, nine times out of 10, they probably do. Talk to your gynecologist. Most gynecologists are familiar with the disease. But if your gynecologist isn't, seek out an endometriosis expert. There are people who really specialize in endometriosis, who can diagnose this disease clinically and provide a wide range of individualized treatment options.
