For about 30-40% of all people, menstrual cramps are a fact of life.
But periods that are painful enough to interfere with daily life, or pelvic pain that occurs regardless of the time of the month, could suggest the presence of a health condition called endometriosis. Endometriosis may affect as many as people assigned female at birth. Apart from its effects on daily quality of life, endometriosis can come with an increased risk of a few other serious health conditions.
While endometriosis doesn’t have a cure, its symptoms are usually treatable. Some of these treatments may lower the risk of the health conditions associated with endometriosis. But they may also increase the risk for other health issues. That’s why it’s important to understand what endometriosis is so you can find the right treatment for you.
What is endometriosis?
Endometriosis is a condition where the kind of tissue that lines the inside of the uterus also starts growing in other places in the body.
In most cases of endometriosis, this tissue, called the endometrium, starts growing on the membranes that surround the uterus and ovaries. This kind of endometriosis is called “superficial” endometriosis.
Endometriosis can also involve growth of the uterine lining on other organs in the pelvic region, like the bladder and large intestine. This is called “deep” endometriosis. Spots of uterine lining tissue within the ovaries themselves are called endometriomas, a subtype of deep endometriosis.
The location of endometriosis in the body may impact symptoms, according to research by associate professor of family and preventive medicine in the Spencer Fox Eccles School of Medicine at the University of Utah.
“Deep infiltrating endometriosis and endometriomas have been shown to be associated with higher risk of infertility and pain compared to superficial,” Schliep explains, although superficial endometriosis can cause these symptoms as well.
What are the symptoms of endometriosis?
The most common symptom of endometriosis is pelvic pain during periods. The endometrial tissue outside the uterus sheds and bleeds during periods, just like the tissue inside the uterus, which can cause inflammation and pain.
Endometriosis can cause scars to form in affected areas, which can make adjacent internal organs stick together. This can lead to pelvic pain that happens all the time, not just during periods.
People with endometriosis may also experience pain when they have sex or go to the bathroom, depending on whether their bladder, colon, or the outside of their uterus is affected. Fatigue and depression can also be symptoms.
Some people with endometriosis don’t have any symptoms and may only realize they have it if they have an abdominal surgery for other reasons.
What risks come with endometriosis?
People with endometriosis are more likely to have difficulty getting pregnant. The inflammation caused by endometriosis, as well as anatomical changes that can happen in advanced stages of the condition, can reduce the chances of getting pregnant.
Endometriosis can also increase the risk of ovarian cancer. Recent research led by Schliep has found that including deep endometriosis of the ovaries themselves.
I think I might have endometriosis. What’s next?
If you’re experiencing pelvic pain—either cyclically or all the time—that impacts your day-to-day life, talk with your doctor to determine next steps. While there is no cure for endometriosis, a number of treatments can help with symptoms.
Hormone-based medications, including oral birth control, are some of the most effective treatments for endometriosis-related pain relief. The birth control pill can reduce pain by slowing the growth of endometrial tissue and preventing bleeding. Your doctor may also prescribe other hormone-based medications or pain medication like NSAIDs.
The conclusive test for endometriosis is a laparoscopy, where a camera is inserted through a small cut in the abdomen to look for spots of endometrial tissue. While this is a minimally invasive surgery, it’s not recommended unless your symptoms don’t get better with medication.
What if I still have symptoms despite medication?
Spots of endometrial tissue can be removed surgically through a small incision. In rare cases, severe endometriosis is treated by surgically removing the entire uterus and/or ovaries. This removes the source of endometrial tissue and prevents new spots of endometrial tissue from forming elsewhere. This can reduce pain, although pain often returns within a few years. For people whose endometriosis puts them at especially high risk of ovarian cancer, surgery to remove the ovaries will reduce that risk, although the surgery increases the risk of heart conditions later in life.
Compared to other common chronic health conditions, research into endometriosis has been very limited, and much remains unknown. But federal funding for endometriosis research is powering research like Schliep’s that has the potential to improve care for the millions of people in the U.S. with endometriosis.
Given the complexity of endometriosis symptoms and treatment, Schliep says it’s important for patients and doctors to understand their risk factors and options. “Every individual has their own risk profile, and you have to take that into account when you're weighing the benefits and drawbacks of any kind of treatment.”
