Every organ in the human body has a unique function. Kidney cells filter excess salt, sugar, and water out of the blood. Healthy liver cells remove toxins like alcohol. In women, tissue lining the uterus grows and sheds on a monthly cycle. On rare occasions, tissue that normally lives inside the uterus is found in other parts of the body. This is a condition known as endometriosis. But what is endometriosis, why and where does it happen, and how can it be treated?
Endometriosis occurs when the tissue lining the uterus, known as the endometrium, is found outside the uterus. For reasons not well understood, endometrial tissue can be found anywhere in the body. Wherever it's found, it still responds to the hormones that cause monthly menstruation. So with endometriosis, tissue outside the uterus behaves as though it's still inside the uterus and cycling through growth and bleeding in sync with normal uterine tissue.
Why endometriosis occurs is not currently known. What is known is that, to a certain extent, some people are more likely to have it than others. "It is multi-factorial," said Mona Orady, MD, FACOG, gynecologist and minimally invasive and robotic surgeon at Dignity Health Medical Group - St. Francis/St. Mary's, a service of Dignity Health Medical Foundation. "We do know that it runs in families. We do know that there are certain races that are more likely to have it. We do know that it progresses with time."
Unlike fibroids, which are more often found in women of African-American descent, Caucasian women are more likely than others to have endometriosis. In terms of age, many experts believe that it's a reasonable diagnosis to consider in teens, young adults, and adults with suspicious symptoms. Dr. Orady says it is probably underdiagnosed in young women.
The exact symptoms of endometriosis depend on the tissue's location. The most common places are on the ovaries, on the uterus rather than inside it, on the uterosacral ligaments near the rectum, or on the side walls of the pelvis itself. Endometriosis in these locations causes the most common symptoms: pain and infertility. Endometrial tissue located in the bladder and rectum can rarely cause blood in the urine and stool.
Other common symptoms of endometriosis include intense or worsening menstrual cramps, severe pain right before a period, pain during or after intercourse, and painful urination or bowel movements during menstruation. Importantly, unlike normal periods where pain and bleeding tend to coincide, in endometriosis, pain usually proceeds bleeding and can be so severe that it leads to vomiting or causes a patient to cease normal functioning. Often, if left untreated, the pain can become chronic — not just during periods.
Dr. Orady emphasizes that extreme pain with menses is not normal. "Women are sometimes led to feel that severe menstrual pain is normal, and it's not. It's a general feeling of 'You're supposed to have pain during your period,' but they don't realize that there's a huge discrepancy in the types of pain, and if you actually listen to their stories carefully, you can distinguish which people have endometriosis."
According to Dr. Orady, on average, it takes 7-10 years for a woman to get diagnosed. When women are evaluated for endometriosis, it's often via ultrasound at first. Then a process called laparoscopy can be used to definitively confirm the diagnosis. During laparoscopy, a pocket of air is created in the abdomen, and a camera is inserted to look for signs of endometrial tissue.
Physicians like Dr. Orady, who specialize in microsurgery, use tiny tools to limit the impact of the procedure. "I use 2- to 3-millimeter instruments to look around and remove and biopsy the endometriosis," she said. "That gives them almost a scarless, painless surgery. So a lot of times, people don't want to go through surgery because this used to mean bigger incisions and visible scars. It's becoming easier and easier to get people through surgery with minimal disruption to their lives."
Treatments depend largely on symptoms and desires for childbearing. "It's a very individualized disease to treat because it also depends on where the woman is in her life," says Dr. Orady. "It usually ends up being a combination of surgery and medication." Medication can help relieve symptoms, while surgery can boost fertility for months at a time.
As an advocate for women's health, Dr. Orady would like patients to know that there are many treatment options available. She said many women have come to her after several doctors have told them there was nothing that could help them. The first step, she maintains, is to not give up while searching for answers. "Keep seeking out a doctor that can really help," she said. "Women need to empower themselves and not just accept one opinion."
With assistance from your doctor, endometriosis can be diagnosed and managed, and an improved quality of life can be the result.
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