Endometriosis in Teens:
A Guide for Parents and Guardians

The following information was created to help you as a parent or guardian, learn about endometriosis. As you become familiar with the symptoms and treatment options that accompany endometriosis, you will be able to help support your daughter as she seeks medical treatment.  

Understanding Your Daughter's Diagnosis

Helping Your Daughter Prepare for an Evaluation

Exploring Treatment Options

Living with Endometriosis

Commonly Asked Questions

Understanding Your Daughter's Diagnosis

The most useful thing you can do to understand your daughter's diagnosis is to learn all you can about endometriosis. There is certainly a lot of information on line; however, if you do an Internet search for endometriosis information, make sure the information comes from a reliable source. For helpful tips for evaluating endometriosis websites, books, and magazine articles check our website guide: Evaluating Health Information. Your daughter's health care provider is also another resource for educational materials. Be sure to maintain a list of questions for your daughter's medical treatment team. The doctors, nurses and social workers will assist you and your daughter in understanding her diagnosis and the treatment options.

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. 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 are the symptoms of endometriosis?

Endometriosis causes different symptoms in young women. Occasional or constant pelvic pain and/or severe period cramps are definitely the most common symptoms. There can be pain before, during, or after a period. The pain may occur at regular times in the menstrual 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, and/or after a pelvic exam. For those who are sexually active, there may be pain associated with intercourse. Painful or frequent urination, diarrhea or constipation may accompany the pelvic pain.

How is endometriosis diagnosed?

If your daughter has unexplained pelvic pain, menstrual cramps that are so bad that she misses school, she could have endometriosis. There could be other reasons for her symptoms too. Only her health care provider can tell for sure. In fact, the ONLY way to be 100% certain of this diagnosis is to have a procedure called a laparoscopy. A laparoscopy allows the doctor to look inside your daughter's pelvic cavity with a special lens to identify the endometriosis (implants). Other tests that may be ordered by her health care provider before a laparoscopy might include blood tests, cultures to check for infection, ultrasound or an MRI (to make sure it's not something else).

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.

Helping Your Daughter Prepare for an Evaluation

If your daughter is having pelvic pain or unexplained period cramps which cause her to be absent from school several days a month, you may want to suggest that she keep a record of her symptoms. She can do this by keeping track of the degree of pain each day (0-10, 10 being the most severe pelvic pain) using a calendar or journal. Your daughter should also try to pay attention to the kind of pain she is having so she will be able to describe what she is feeling to her doctor. For example:

• 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, she should talk to her primary care doctor (PCP) or pediatrician about her symptoms. Her PCP/pediatrician will recommend an evaluation by a gynecologist if he/she feels that your daughter may have endometriosis. Remind her to bring her pain diary with her for her doctor to review.

If your daughter is referred to a gynecologist, it's a good idea to bring copies of any test results including operative notes related to her pelvic pain. If she has had any surgery for pelvic pain and/or other diagnostic tests, you should arrange to get a copy of the operative report and/or radiology films (you can ask for copies of films from the x-ray department of the health care facility where she had her ultrasound, x-ray, Cat scan or MRI).

Exploring Treatment Options

When an evaluation suggests endometriosis, it is likely that your daughter will be scheduled for a diagnostic laparoscopy. When a definitive diagnosis of endometriosis has been made, treatment falls into the following categories.

• Observation
  After a complete evaluation and before beginning therapy, your daughter's gynecologist may decide to have her keep track of her symptoms and try mild pain medicine.
  
  
• Medical suppression
  Hormonal treatment such as birth control pills either taken in cycles or continuously are felt to relieve symptoms in 8 out of 10 patients. Another medication is a GnRH agonist, such as Lupron Depot, works by shutting off hormones made by the ovaries and temporarily stopping your period. The use of GnRH agonist therapy lowers the body's estrogen level. 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 loss of bone density. It is recommended that "add-back" hormone therapy be utilized to decrease this risk.
  
  
• Surgery
  At the time of laparoscopy, a special instrument is used to cauterize the endometriosis. After 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 for many teens. 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 electrical nerve 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.
  

Living with Endometriosis

Adolescence and young adulthood are a challenging time. Adding a diagnosis of endometriosis can certainly add to the normal stresses. Your daughter's treatment team is aware of both the physical and psychological implications of living with endometriosis. Her treatment plan will consider her age, level of maturity, and lifestyle.

It is essential that your daughter have a clear understanding of endometriosis so that she can learn to live with her disease. Reading about endometriosis and asking for resources from her health care provider are good ways to embrace her diagnosis and find ways to effectively cope with pain and potential side effects from medical treatment. Many adolescents and young women are hesitant to discuss issues regarding their bodies with their parents, particularly regarding gynecological issues or concerns. It is important for her to develop a sense of autonomy and responsibility for her body. However, parents often feel "out of the loop" when their daughters do not talk about their feelings and thoughts freely. It is important to clearly communicate your willingness to listen to and discuss the diagnosis of endometriosis with your daughter. Sometimes the most supportive conversations between parents and their adolescents occur in the most casual of settings, such as in the car or on a walk. Regardless, being available and willing to talk when your daughter feels like sharing her concerns is key.

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.

Commonly Asked Questions

How common is endometriosis among teen girls?

It is more common than you think for young women to have endometriosis. If endometriosis runs in the family, a young woman may be more likely to have it than someone else with no family history. A research study done at Children's Hospital Boston found that endometriosis was the most common diagnosis among teens who had a laparoscopy for chronic pelvic pain.

How often will the medical team see my daughter?

Many factors influence how often your daughter will be followed by her medical team which include: what type of medication she is prescribed, if she is responding to her treatment, and whether or not she has other gynecological issues. Typically, if your daughter is on Lupron Depot, she will need to return for her shot either once a month or every three months depending on the prescribed dose. If your daughter is being treated for her pain with birth control pills she will probably need to return about 3 months after she starts the pill or earlier if she is experiencing side effects. Ultimately it is up to your daughter's health care provider to determine when she should return for follow-up care. At the very least, she will need to have an annual check-up

How do I help my daughter to comply with her treatment plan?

Your daughter's compliance with her treatment plan relies on a good balance between your daughter assuming responsibility for her treatment, your support and sometimes management of the practical parts of her treatment plan. Asking adolescents to assume increasing amounts of responsibility can be complicated. However, the more open and honest you and your daughter are about her responsibilities, the easier it will be for her to be compliant with her medical treatment.

If my daughter goes on birth control pills for her endometriosis, am I giving her permission to have sex?

The short answer to this question is "NO." However, this is a complex question that deserves conversation between you, your daughter, and her medical treatment team. If your daughter is offered birth control pills (also called "hormone pills") as a treatment for her endometriosis, her medical treatment team will explain in clear terms what she should know about "the pill" and how it might be help her symptoms, as well as any potential side effects.

This is a time when many adolescents are focusing on their changing bodies and learning about sexuality through a variety of sources, particularly from their peers. Many girls may be aware of various methods of birth control already. It is essential that you try to maintain an open line of communication between you and your daughter. It is just as important for you to share your own concerns and expectations as it is for her to share her feelings, when considering taking birth control pills. Her medical treatment team can be very helpful in guiding you through these conversations.

How can I help my daughter live with endometriosis without it interfering with school and social activities?

One of the primary goals of your daughter's treatment is to successfully manage her pain. A treatment plan will be initiated that is specifically aimed at reducing the symptoms that interfere with her education, activities, and social life. The combination of traditional and complementary medical treatments as well as healthy life-style choices will help your daughter regain a sense of control over her endometriosis.

When should I let my daughter stay home from school (because of endo pain)?

There may be times when, despite the best of treatment plans and efforts, your daughter feels that the pain from her endometriosis is intolerable and requires her to stay home. It would be most helpful if the criteria for staying out of school or other activities were established BEFORE the situation arises. For example; if your expectations are clear about her going to school, and keeping up with her class work, it will be easier for her to take responsibility for her school attendance. If you feel your daughter is falling behind in her classes and/or homework due to frequent absences or pain that interferes with her ability to complete assignments, you should make an appointment with her school counselor or advisor. Her medical treatment team may be able to help by advocating for necessary support services so that your daughter can have a successful school year.

How can I help my daughter maintain consistent school attendance?

Some young women with endometriosis experience an unusually high number of school absences due to chronic pelvic pain. Pain management is key when treating endometriosis so that your daughter can attend school and participate in social activities. If her pain is particularly bad in the morning, you may choose to give her the option of going to school a little bit late rather than being absent for the entire day. In rare cases when school absences are high, it may be necessary to work with the school system to arrange for a home tutor. It is important to communicate extended school absences with your daughter's medical team.

Are there any alternative or complimentary treatments that will help my daughter?

Complementary and alternative medicine or "CAM" therapies have become mainstream in the last decade. Although there are limited data that supports the effectiveness of herbs, acupuncture, and other forms of CAM therapy in the treatment of endometriosis, new research studies are underway to determine if in fact these therapies are helpful. Pain treatment centers in major hospitals will evaluate young women with endometriosis and often recommend CAM therapies that can be sought along with traditional medical treatment. If you choose to explore options on your own, make sure that the CAM provider or acupuncturist is a licensed professional.

How will the endometriosis affect my daughter's fertility in the future?

Early treatment is important in the relief of pain but also in the prevention of the natural progression of endometriosis that in some cases may cause infertility. Infertility commonly results when endometriosis causes changes in the pelvic organs and/or the fallopian tubes. Since endometriosis is considered to be an chronic disease, it is important for your daughter to have early treatment by a gynecologist who specializes in treating young women with endometriosis. Your daughter should be followed for her endometriosis through her childbearing years.

How will the endometriosis affect my daughter's sexuality?

Every gynecological condition by definition focuses on the reproductive system. The attention on this part of the body often makes young women uncomfortable. It is also natural for young women at this age to begin to think about their sexuality. Because of all the medical attention to this part of her body, young women with endometriosis may have more complex questions and feelings about their sexuality. As a parent, you can use this opportunity to have honest discussions with your daughter about sex and the choices she will make. For example, if your daughter is taking birth control pills for management of her endometriosis, it is timely to have a discussion about being sexually responsible (see above question "If my daughter goes on birth control pills".). It is essential that the lines of communication remain open not only between your daughter and her treatment team but between you and she as well.

Written by the Center for Young Women's Health Staff

Updated 1/4/2006

Related Information:

• Endometriosis: A Guide for Teens
• Continuous Hormonal Pills for the Treatment of Endometriosis: A Guide for Teens
• Hormonal Therapy Options: Treating Endometriosis
• Impact of Endometriosis on College Planning
• Medical Uses of Oral Contraceptive Pills
• Related Links