Anne had never had problems with her periods the way some of her friends did. But over time her periods started getting so painful that she dreaded their arrival. Every month for a few days she would curl up on the couch with a heating pad and take a pain reliever. The cramps eventually became so bad that she was missing school a couple of days a month, and the pain even started happening between periods.
Her doctor thought Anne might have endometriosis.
What Is Endometriosis?
When a woman has endometriosis, tissue that looks and acts like the lining of the uterus starts growing in places other than the inside of the uterus. The most common locations for these growths — called endometrial implants — are the outside surface of the uterus, the ovaries, the fallopian tubes, the ligaments that support the uterus, the intestines, the bladder, the internal area between the vagina and rectum, and the lining of the pelvic cavity.
It is not known exactly how many women have endometriosis, but it is believed that more than 5 million American women, including teen girls, are affected. It's not always diagnosed right away in teens because at first they or their doctors assume that their painful periods are a normal part of menstruating, or that their abdominal pain is due to another problem. But continuing, excessive pain that limits activity isn't normal and should always be taken seriously. Because severe endometriosis can make it harder for a girl to have children in the future, it's a good idea to get medical help for endometriosis and not wait too long.
To understand why endometriosis causes problems, it helps to have a basic understanding of how the monthly menstrual cycle works: During the course of each cycle, the lining of a woman's uterus builds up with blood vessels and tissue. This happens because the uterus is getting ready to receive the egg that will be released from one of the ovaries. If the egg isn't fertilized by sperm, the uterus sheds the tissue and blood; this is the menstrual period. This entire process is controlled by the female sex hormones and usually takes about 28 to 30 days.
Because the abnormal growths associated with endometriosis are made up of the same kind of tissue and blood vessels found in the uterine lining, any endometrial implants will act just like the endometrium in the uterus. That means they respond in the same way to the hormonal changes of the menstrual cycle.
However, in the uterus, if the egg isn't fertilized, the extra tissue and blood leave a girl's body in the form of menstrual fluid. With endometriosis, though, there's nowhere for the accumulating blood and tissue to go once the implants start to break down. This causes irritation of the surrounding body parts, which can cause pain. With continued build up and irritation, the symptoms of endometriosis tend to become more painful over time.
What Causes Endometriosis?
Doctors aren't sure what causes endometriosis. They do know that it is slightly more common in teens and women who have a family member who has been diagnosed with endometriosis.
There are several theories about how the endometrial tissue actually gets outside the uterus in the first place. One theory suggests that the menstrual blood flow somehow "backs up" into the fallopian tubes, carrying some tissue from the uterine lining with it. In effect, the tissue gets transplanted and starts growing outside the uterus.
Another theory is that endometrial tissue cells travel out of the uterus through blood or lymph vessels, and then start growing in the new locations where they're deposited. Yet another theory suggests that some girls are born with "misplaced" cells that can turn into endometrial implants later in life. Scientists continue to research the condition to help doctors fully understand and treat it.
What Are the Signs and Symptoms?
The most common sign of endometriosis is severe pelvic (lower abdominal) pain. It may occur occasionally or constantly, and it may be associated with a girl's period. Although slight cramps for a couple of days before or during a menstrual period are normal, lasting or intense pain that disrupts a girl's day is not. With endometriosis, the pain is usually so bad that it causes a girl to miss school, sports, and social activities.
Other possible symptoms include:
- pelvic pain that gets worse after sex or after a pelvic exam
- a very heavy period
- lower back pain
- constipation, diarrhea, or feeling pain or seeing blood when going to the bathroom (endometrial implants can press on some of the organs involved in getting waste out of the body, such as the bladder, intestines, and rectum)
If a girl notices these symptoms, it doesn't necessarily mean that she has endometriosis. Lots of other things — like an infection — may cause similar symptoms. But it's important to see a doctor right away if you notice these symptoms. If you haven't been examined by a gynecologist for the first time yet, this is a good time.
How Is It Diagnosed?
Diagnosing endometriosis isn't always easy. Lots of things can cause pelvic pain, so even if a girl's symptoms point to endometriosis, a doctor may want to rule out other possibilities.
In addition to doing a physical exam, the doctor will take your medical history by asking you about any concerns and symptoms you have, your past health, your family's health, any medications you're taking, any allergies you may have, and other issues. The doctor may ask about your periods and whether you have had sex. It's important to answer all of these questions honestly so your doctor can figure out what's going on.
Depending on your symptoms, the doctor might ask you to keep a pain diary, which may involve recording this information every time you experience pain:
- type of pain (is it sharp? dull? aching? crampy?)
- location (where is it?)
- duration (how long does it last?)
- timing (is the pain related to your period? going to the bathroom?)
- intensity (on a scale of 1 to 10, how bad is the pain?)
- treatment (did you try anything to make the pain go away? did it help? did anything make the pain worse?)
The severity of the pain isn't always an indication of how severe the endometriosis might be. A girl may have many growths and just a little pain or a few growths and a great deal of pain. Every girl's situation is a little bit different.
The only way to know for certain whether a girl has endometriosis is to perform a minor surgical procedure called laparoscopy (pronounced: la-puh-ras-kuh-pee). This allows the doctor to know for certain whether a girl has endometrial implants and, if so, how extensive they are.
While a girl is under anesthesia, the doctor makes a small cut near her belly button and inserts a thin, lighted tube (known as a laparoscope) that acts as a tiny video camera so that the doctor can view the pelvic organs. During the procedure, the abdomen is filled with a gas to help the doctor see the organs better. The doctor may also do a biopsy, which means removing small pieces of the growths for examination under a microscope. If endometrial implants are seen, the doctor might be able to remove them.
Even if symptoms point to endometriosis, the doctor might not want to perform a laparoscopy right away, and instead may order scanning tests that can create images of the pelvic region, such as ultrasound or magnetic resonance imaging (MRI). This helps to rule out other possible causes of the symptoms. Doctors also may start by telling a girl to take ibuprofen. Oftentimes, doctors will prescribe birth control pills, not as a method of contraception but because they reduce painful periods, especially those associated with endometriosis.
If these approaches don't work for a girl with endometriosis, then the doctor will probably order the laparoscopy.
What Do Doctors Do?
Endometriosis can't be cured, but its symptoms usually can be controlled.
Doctors often prescribe birth control pills because they use hormones to prevent ovulation (the monthly release of an egg from an ovary). If a girl doesn't ovulate, then the endometrial implants won't build up as much, and this can make endometriosis less painful.
Other medications used to treat endometriosis work in a similar way as birth control pills to modify the hormone-driven buildup and breakdown of endometrial tissue. Doctors often don't recommend these treatments for teens until well after puberty is completed, though.
Surgery is often helpful if medications don't work. A doctor can remove endometrial growths with the help of a laparoscope. After this treatment, many girls find relief from their symptoms, but some may experience pain again if the growths return over time. Laparoscopy is the usual surgical treatment for endometriosis, although in rare cases more extensive surgery may be needed.
Doctors often suggest lifestyle changes for teens who have endometriosis, too. A healthy diet, moderate exercise, and relaxation techniques such as yoga and meditation can sometimes help.
What's It Like to Have Endometriosis?
Apart from the pain, other things can make living with endometriosis a challenge. Some girls find it difficult explaining to friends and teachers why they miss school, sports, or other activities, for example. If you feel embarrassed, ask your doctor to write a note you can give to teachers and coaches so you don't have to explain yourself. You can then work with them to be sure you don't miss out on key assignments — or fun.
You don't have to go into detail about your condition to friends or classmates unless you want to. If you think someone won't understand, just tell that person you're not feeling well. You have no obligation to provide them with a detailed explanation.
These days, doctors are more likely to recognize endometriosis. Once they're diagnosed, many girls find that medication limits the extent of their endometriosis. It also controls pain so they can take part in the activities they enjoy.
Reviewed by: Larissa Hirsch, MD
Date reviewed: August 2010