Endometriosis:

A Guide for Teens

 

Endometriosis Guide for Teens	Managing Pain, Activities, & Friendships
Endometriosis FAQ's	Pain & Symptom Tracker
Hormonal Therapy Options	Pain Mapping Worksheet
Continuous Hormone Pills	Endo, Nutrition, and Exercise
Continuous Hormone Pill FAQ's	Endometriosis and College Planning
Coping with Endo Pain	Glossary of Endo Terms
Managing Pain at School	Additional Endo Resources

Endometriosis, pronounced, "end–o–me–tree–o–sis" can affect girls of all ages. Most girls have mild cramps or pelvic pain during their menstrual cycle, but if you have unexplained pelvic pain, or menstrual cramps that are so bad that you miss school, you may have endometriosis. There could be other reasons for your symptoms too, but only your health care provider can tell for sure. This guide was created to help you understand endometriosis and available treatments.

 

What is endometriosis?

Endometriosis is a condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location. Endometrial implants can be found on the ovaries, fallopian tubes, and ligaments that support the uterus and tissue covering the bladder and rectum. The most common locations of endometrial implants in teens are in the cul–de–sac area (behind the uterus), and near the bladder. (See illustration below.)

 

What are the symptoms of endometriosis?

Endometriosis can cause different symptoms. Pelvic pain and/or severe period cramps are the most common symptoms. There can be pain before, during, or after your period. The pain may occur at regular times in your cycle, or it may occur at any time during the month. It's often referred to as "chronic" pelvic pain. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms teens may have. Some teens may have pain with exercise, sex, and/or after a pelvic exam. Although not as common, some young women may have painful or frequent urination, diarrhea, or constipation with pelvic pain. It's important to remember that some teens have a lot of endometriosis and have very little pain, while others may have a small amount of endometriosis and severe pain.

 

What causes endometriosis?

Although we know that some young women may be slightly more likely to develop endometriosis because female relatives have it, the fact is that we do not know the cause of this disease.

 

The three most accepted theories are:

• Sampson’s Theory: This theory explains that the flow of menstrual blood gets "backed up" causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus.
• Meyer’s Theory: This theory proposes that specific cells called "metaplastic cells" change into endometrial cells and are actually present at birth.
• Vascular Theory: This theory suggests that the endometrial tissue "travels" through the body via the blood vessels. It then implants in the abdomen and grows, resulting in pain.

How is endometriosis diagnosed?

The ONLY way to be 100% sure of this diagnosis is to have a procedure called a laparoscopy. There is no blood test, x–ray, ultrasound, or MRI that can diagnose endometriosis at this time. A laparoscopy allows your doctor to look inside your abdomen (belly) at your pelvic organs with a special lens to identify the endometriosis (implants). Other tests that may be ordered before a laparoscopy might include blood tests, vaginal cultures to check for infection, ultrasound, or an MRI (to make sure it's not something else). If you think you could have endometriosis, you will want to be evaluated by a gynecologist who specializes in taking care of teens and young women with endometriosis.

 

What can I do if I think I might have endometriosis?

If you think you might have endometriosis, it is very helpful to keep track of your pain for a while. You can find a Pain and Symptom Tracker here, and a Pain Mapping worksheet here. These tools will help you explain your pain to your medical team.

 

Bring your completed Pain and Symptom Tracker and Pain Mapping worksheets to your appointment, and talk with your gynecologist about your symptoms. It's also a good idea to bring copies of test results, operative notes (a summary by your doctor if you have had surgery) and/or radiology reports. (You can ask for copies of these from the x-ray department of the health care facility where you had your ultrasound or x-ray.)

 

Is there a cure for endometriosis?

While there is no cure for endometriosis, you can be treated with surgery and medicine to keep the endometriosis from getting worse and harming your future fertility.

 

What kinds of treatment are available?

Once a diagnosis of endometriosis has been made, treatment falls into the following categories:

• Observation: After an evaluation and before beginning hormonal therapy, you and your gynecology (GYN) team may decide to keep track of your symptoms and try mild pain medicine. This is usually the first step for girls with premenarcheal endometriosis (who are too young to have had their first period).
• Medical Suppression: Hormonal treatment such as birth control pills containing estrogen and progesterone taken continuously (to stop periods) relieves symptoms in many patients. A second treatment is progesterone medicine alone. This comes as a progestin–only birth control pill in a pill pack, or as a regular pill that comes in a bottle (Norethindrone acetate).

   

  Another type of medication is a GnRH agonist, such as Leuprolide acetate. This medicine works by shutting off hormones made by the ovaries and temporarily stops your period. The use of GnRH agonist therapy lowers your body's estrogen level (one of the hormones that cause your body to have periods). This medicine has been approved by the Food and Drug Administration (FDA) to be used for 6 months at a time. If used for over 6 months, studies have found that it can cause changes in bone density. When GnRH agonist therapy is needed for longer than 6 months, it is used with “add-back” therapy to protect your bones.
• Surgery: At the time of your laparoscopy, your surgeon will likely destroy any endometriosis tissue that can be seen. After this procedure, many young women find relief from symptoms. Most say that their pain is better, but not completely gone. Remember, there is no known cure for endometriosis. Many young women may experience pain again.
• Lifestyle Changes: Dealing with chronic pelvic pain can be challenging. Exercising often helps to relieve or lessen pelvic pain and menstrual cramps. Eating a balanced diet and getting enough rest also helps your body manage pain. Practicing relaxation techniques such as yoga and meditation help to ease pain too.
• Pain Treatment Services: Many centers work closely with other healthcare providers in programs that provide treatment and support for acute and chronic pain. Following an evaluation, services such as biofeedback, physical therapy, TENS (transcutaneous electrical stimulation), and exercise programs may be offered.
• Complementary Medicine: Acupuncture, herbal remedies, homeopathy, and healing touch are among popular "alternative approaches" to medical treatment. Many of these therapies can be helpful; however, not every alternative approach has been scientifically proven to be safe and effective. Research studies are limited. Before experimenting with any alternative therapy, make sure that you are working with a licensed provider that has been referred to you.

Why have I heard that some adult women may have trouble getting pregnant?

If endometriosis is not found and treated, it can grow and damage the fallopian tubes and ovaries. This can make it more difficult to get pregnant. Studies done at Boston Children's Hospital have shown that if endometriosis is found in young women and treated early, it usually doesn't get worse.

 

What else do I need to know about endometriosis?

• Young women CAN suffer from symptoms of endometriosis. Medical studies have found this disease in teenagers and young children.
• Chronic pelvic pain is not normal. Most young women have none or mild to moderate menstrual cramps one or two days a month. If you are absent from school because of pelvic pain or menstrual cramps, talk with your health care provider.
• Endometriosis occurs among women of ALL races.
• Endometriosis is NOT an STD (sexually transmitted infection).
• Getting pregnant does NOT cure this disease, but may improve symptoms for some women. Some women with endometriosis who have had children continue to have pain.
• If your pain makes you feel at all disadvantaged compared to other young women, this is not normal. Don’t "normalize" your symptoms. If you don’t feel like you are equally capable as other young women your age (because of pelvic pain), you need to seek medical attention.

The goal of the treatment for endometriosis is aimed at relieving pain, controlling the progression of the endometriosis, and preserving fertility for future childbearing. Treatment can make a big difference in improving the quality of your life.

 

Next: Endometriosis FAQ's

 

Written and reviewed by the CYWH Staff at Boston Children's Hospital

 

Updated: 7/10/2012