Endometriosis: A Guide for Teens

Endometriosis, pronounced, "end-o-me-tree-o-sis" can affect girls of all ages. Most girls experience 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. Only your health care provider can tell for sure. This guide was created to help you understand endometriosis and the available treatments to help you cope with your pain.

What is endometriosis?

Endometriosis is a condition that occurs when tissue similar to the lining of the uterus is found outside its normal location. Common locations of endometrial implants include the ovaries, fallopian tubes, and ligaments that support the uterus and tissue covering the bladder and rectum. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms adolescent and adult women may have.

What are the symptoms of endometriosis?

Endometriosis causes different symptoms in young women. Pelvic pain and/or severe period cramps are definitely 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 the pain may occur at any time during the month. It is often referred to as "chronic" pelvic pain. Some teens may have pain with exercise, sex, and/or after a pelvic exam. Although not as common, some teens 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 who have a small amount of endometriosis have 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 truth is 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 blood vessels. It then reaches various tissues, implants , and then grows, causing pain.

How is endometriosis diagnosed?

The ONLY way to be 100% certain of this diagnosis is to have a procedure called a laparoscopy. There is no blood test or radiology study that can diagnose endometriosis at this time. A laparoscopy is a surgical procedure (performed when you are asleep) that allows your doctor to look inside your belly at your pelvic organs with a special lens to identify the endometriosis (implants). Other tests that MAY be ordered by your health care provider 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 be evaluated by a gynecologist who specializes in taking care of teens with endometriosis.

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

While there is no cure for endometriosis, you can be treated for your symptoms. It is very helpful to use a notebook, calendar or diary to keep track of your pain for a while. Writing down how your feel every day with a number (0-10) will help you to explain your pain to your doctor, where 0=no pain and 10=the worst pain you have ever had. You can also keep track of your pain by writing in a pain diary. Ways to help you describe your pain:

• Type (sharp, dull, burning, aching, crampy)
• Location (where is the pain?)
• Duration (how long does it last?)
• Intensity (scale of 1-10, how "bad" is the pain?)

Next, talk to your gynecologist about your symptoms and bring your pain diary with you for your doctor to review. It's 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 too from the x-ray department of the health care facility where you had your ultrasound or x-ray). Most importantly, make sure you are evaluated by a gynecologist who specializes in taking care of teens with endometriosis. A research study done at Children's Hospital in Boston found that endometriosis was the most common diagnosis after surgery in teens who had chronic pelvic pain.

What kinds of treatment are available?

Talk to your gynecologist about treatment options. When an evaluation by your gynecologist suggests endometriosis, it is likely that you will be scheduled for a diagnostic laparoscopy. Once a definitive diagnosis of endometriosis has been made, treatment falls into the following categories.

• Observation
  After an evaluation and before beginning hormonal therapy, you and your health care team may decide to keep track of your symptoms and try mild pain medicine.
  
  
• Medical suppression
  Hormonal treatment such as birth control pills taken continuously, are felt to relieve symptoms in many patients. Another medication is a GnRH agonist, such as Depot-Lupron, works by shutting off hormones made by the ovaries and temporarily stopping 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 to be used for 6 months at a time. If used for over 6 months, studies have found it can cause changes in bone density. When the GnRH agonist therapy is needed for longer than 6 months, it is used with an "add-back" therapy to avoid harm to bone density.
  
  
• Surgery
  Using a special instrument at the time of the laparoscopy, your doctor destroys the endometriosis that can be seen. It is possible that you have severe pain but only a small amount of endometriosis is seen. After going through this procedure, many teens find relief from symptoms but some teens over time may experience pain again.
  
  
• Lifestyle changes
  Dealing with chronic pelvic pain can be challenging. Exercise often helps to relieve or lessen pelvic pain and menstrual cramps. Eating well and getting enough rest also helps the body to manage pain. Practicing relaxation techniques such as yoga and meditation help to ease pain too.
  
  
• Pain Treatment Services
  Many centers work closely with other health care providers in programs that provide treatment and support for acute and chronic pain. Following an evaluation, services such as biofeedback, physical therapy, TENS (transcutaneous ("through the skin") 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 proven to be safe and effective. Research studies are limited. Before experimenting with any alternative therapy, check with your doctor.

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.
• Endometriosis is NOT an STD (sexually transmitted disease).
• 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 excessively due to pelvic pain or menstrual cramps, consult your health care provider.
• Endometriosis occurs among women of ALL races.
• 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.

Written by the Center for Young Women's Health Staff

Updated 1/4/2006

Related Information:

• Treating Endometriosis: Hormonal Therapy Options
• Impact of Endometriosis on College Planning
• Endometriosis in Teens: A Guide for Parents & Guardians
  
• Chat with Us: Endometriosis and Teens
• Related Links