Over the last few years, several high-profile female celebrities have publicly discussed their struggles with a painful and poorly understood condition called endometriosis. And it seems each time a famous figure shares her experience, women around the world become more at ease opening up as well. All of this conversation is shining a much-needed spotlight on the condition, just in time for World Endometriosis Day on March 24.
But what is endometriosis? And what should you do if you think you have it? Kate White, MD, MPH, assistant professor of obstetrics and gynecology at Boston University, breaks it down for you below.
What is Endometriosis?
If a woman is diagnosed with endometriosis, it means the tissue that normally lines the inside of the uterus (also called the endometrium) is growing outside the uterus. Usually when this happens, it affects organs in the pelvic region, including the ovaries, fallopian tubes, and lining of the pelvis.
When uterine tissue grows on other organs, it can cause major problems. This is because the tissue continues to behave as it normally would inside the uterus over the course of a menstrual cycle: thickening, breaking down, and bleeding. While this tissue is typically shed from the uterus during menstruation, when it grows outside the uterus, there’s nowhere for it to go. As a result, it becomes trapped, causing pain, irritating surrounding areas, and eventually causing scar tissue to develop. It can also result in abnormal bands of fibrous tissue called adhesions, which can cause pelvic tissues and organs to stick together.
“Endometriosis is not an easy condition to explain to women—the idea of the uterine lining growing outside the uterus is bizarre,” says White. “But it can be such a relief to learn that your symptoms do have a real cause, that your pain isn’t all in your head (as unsupportive people may have you believe).”
What Are the Symptoms of Endometriosis?
- Painful periods: Pelvic pain (that can also extend into the lower back and abdomen) is the most common symptom of endometriosis, and menstrual periods often intensify it. The pain of endometriosis is far more severe than what many women experience with menstrual cramps, and it can become worse over time. “Initially, the pain is just with your periods,” says White. “As the disease progresses, over time, the pain can be constant, no matter where you are in your cycle.”
- Pain during sex
- Painful urination or bowel movements (most common during menstruation)
- Extra heavy periods
- Bleeding between periods
- Infertility: Sometimes women don’t know they have endometriosis until they have trouble conceiving and seek out treatment.
Some women with endometriosis also experience fatigue or gastrointestinal symptoms like diarrhea, bloating, nausea, and/or constipation. Because the condition shares symptoms with other medical issues, it’s often misdiagnosed as pelvic inflammatory disease (PID), ovarian cysts, or irritable bowel syndrome (IBS). To make matters more confusing, women with endometriosis sometimes have IBS too, so it can be difficult to know which condition is causing which symptoms.
It’s impossible to know how severe a case of endometriosis is based on symptoms alone; some women have intense pain but a mild case, and others have little to no pain but an advanced case. “One of the crazy things about endometriosis is that there doesn’t seem to be a relationship between how much pain a woman experiences and how severe the disease is,” says White.
How Many People Are Affected by Endometriosis?
It’s hard to know exactly how many women have endometriosis, because not all women experience the same symptoms or get properly diagnosed. According to a 2011 study, approximately 11 percent of participants who had not been diagnosed with endometriosis actually had the disorder. The National Institutes of Health estimates that if this finding applies to all the women in the United States, there could be more than five million American women with the condition.
“Endometriosis is by far the most common gynecological cause of chronic pelvic pain in women,” says White. “So if you’re suffering from it, know that you’re not alone.”
Despite the pain it can cause, endometriosis often goes undiagnosed for years—studies have even found it can take an average of 11.7 years in the U.S. after the onset of symptoms for a woman to get the right diagnosis. There are a lot of possible explanations for this long delay (including the fact that many women, and even their doctors, don’t know what’s considered “normal” pain), so it’s important for women to understand their bodies and the potential signs and symptoms of trouble.
What Causes Endometriosis?
Experts still aren’t sure what causes endometriosis, but there are several possible explanations for it, including problems with the immune system or certain hormones. While there’s no single known cause, there are certain factors that may raise the risk of developing it:
- One or more close relatives (mother, aunt, or sister) with the disorder
- Starting menstruation at a young age (usually younger than age 11)
- Short menstrual cycles (less than 27 days)
- Never giving birth
- High estrogen levels
- Excessive alcohol consumption
- Low body mass index (BMI): A measure of body fat that’s calculated by dividing your weight (in kilograms) by the square of your height (in meters). Research has shown that women with a BMI in the low to normal range (18.5 to 22.4 kg/m2) have a higher risk of developing endometriosis.
- Any medical condition that causes uterine abnormalities or prevents menstrual blood from flowing out of the body
How is Endometriosis Diagnosed?
Usually, your doctor will ask you about your symptoms and perform one or more physical tests including a pelvic exam and/or ultrasound. In some cases, doctors refer patients to a surgeon to get a procedure called a laparoscopy, which allows them to view the tissue growing on other organs and/or take a sample, called a biopsy.
What’s the Treatment for Endometriosis?
There’s no single cure for endometriosis, and every case is different, so the treatment plan varies from person to person. Some common treatments include:
- Pain medications like nonsteroidal anti-inflammatory drugs (NSAIDs), including ibuprofen (Advil, Motrin, etc.) and naproxen (Aleve), may help with the pain in some cases.
- Hormonal medications (sometimes including birth control), can stop periods and prevent uterine tissue from growing. “Often, if a woman’s symptoms are very suggestive of endometriosis, doctors will try a course of hormonal suppression, often with either a birth control pill or a hormonal IUD, to see if her symptoms improve,” says White.
- Surgery to remove the tissue in the pelvis (although it’s possible it can grow back)
- Hysterectomy: If the endometriosis is severe, the most effective treatment may be a surgery to remove the uterus and cervix (total hysterectomy) and possibly both ovaries. This is usually considered a last-resort treatment because it’s impossible to become pregnant after a hysterectomy. On top of that, removing the ovaries can cause long-term health risks, including heart disease.
Are There Natural Treatments for Endometriosis?
Some women find pain relief from home remedies and lifestyle modifications, including:
- Warm baths and/or heating pads can help relax the muscles in the pelvis.
- Regular exercise may help some women cope with symptoms, but everybody is different. Researchers have found positive effects associated with everything from high-intensity workouts to yoga, but it’s best to listen to your own body and talk to your doctor about what’s right for you.
When Should You See a Doctor?
It can be difficult to identify endometriosis, but an early diagnosis may help you get a better handle on your symptoms. See your doctor right away if you have symptoms that indicate you may have the condition.
“Your doctor will work with you to treat whatever symptoms you’re having, and help you meet your goals,” says White. “This is true whether your priority is pain control, pregnancy, or preserving your fertility.”
This article is not intended to substitute for informed medical advice. You should not use this information to diagnose or treat a health problem or condition. Always check with your doctor before changing your diet, altering your sleep habits, taking supplements, or starting a new fitness routine.