Endometriosis Resources for Teenagers

The Endometriosis Association has a number of resources for teens with endometriosis.

In this award-winning production, teens share their experiences living with endometriosis–a chronic, painful hormone and immune-system disease. To request a Teen Outreach kit for making presentations to groups of teens and those who care for them, please contact the Endometriosis Association at support@EndometriosisAssn.org.

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You must believe in yourself. You need to know what is good for you and trust yourself. If you do not think that your care is adequate, you have to tell someone. But remember, it is almost impossible to cope alone.
– Cindy, 17

Talk about it…If somebody is just starting to have pain, they should know it’s not normal and they should see a doctor about it.
– Jennie, 15

There is so much you can do! There are so many people who are still clueless about endo and how it strikes young women at such early ages. I think a first step would be to talk to your friends and educate them about this disease.
– Ashley, first symptoms at 10 years old

Download the teen brochure (English) here. Spanish and Portuguese versions also available in print. Email support@endometriosis.org to request FREE copies.

Have you ever experienced any of the following symptoms with your cycle?

  • cramps
  • heavy or irregular bleeding
  • nausea
  • diarrhea/constipation
  • stomach problems
  • yeast infections
  • allergies
  • asthma

Certainly, not all teenagers are sexually active. But if you are sexually active, is sexual activity a physically painful experience for you?

Endometriosis Resources for Teens, Endometriosis Resources, The Endometriosis AssociationAre You a Teenager? 

Is your period causing problems in your life? Have you ever missed school, work, sporting events, or social activities because of painful menstrual cramps?

These symptoms could be a signal from your body! If you have experienced any or all of the symptoms listed here, you could be suffering from endometriosis.

You are not alone!

In fact, so many women and teens have endometriosis that they formed the Endometriosis Association to help those living with the pain and problems of the disease. The Association serves women and girls around the world.

If you think that you might have endometriosis, you must take action.

There are some important things that YOU can do to protect your health. But first, let’s get some basic questions answered.

Endo-What? How do you pronounce that word?

The correct pronunciation is end-oh-me-tree-oh-sis … but many women and medical professionals simply refer to the disease as “endo.”

What is endometriosis?

  • Endometriosis is a puzzling disease that affects our hormones, our immune system (the system that fights germs and cancer), and the digestive tract (the system involved in the breakdown and absorption of our food).
  • The name comes from the word “endometrium” which is the tissue that lines the inside of the uterus. Each month, or cycle, this tissue builds up and sheds, causing the normal bleeding experienced during the period. With endometriosis, tissue like this is found outside of the uterus in other areas of the body, such as the abdomen, intestines, bladder, and other places. In these other locations, the tissue develops into what is called “growths” or “implants.”
  • Like the lining of the uterus, endo growths usually respond to the hormones of the menstrual cycle. They can build up tissue and shed each cycle causing bleeding.
  • The result of this bleeding and the immune problems that are part of endo are the formation of scar tissue, pain, and other complications.
“If somebody’s going through pain … you shouldn’t let it go … let people know if you’re in pain. Don’t keep it inside.”  – Jennie, 15

Isn’t it normal to have menstrual cramps?

Pain that keeps you from participating in your usual activities is not normal. Some women never experience menstrual cramps. Others have only mild, occasional pain. If your cramps are severe and/or frequent, it is a sign of a problem.

What causes those terrible menstrual cramps?

An imbalance of substances called prostaglandins could be the problem. Prostaglandins regulate the smooth muscles in the uterus, the intestines, and other tissues. An imbalance of prostaglandins in your body can cause the uterus to contract too strongly and cause a lot of pain.

Can I have endometriosis if I am not sexually active?

Endometriosis is NOT a sexually transmitted disease. Many teens and women who are not sexually active have endo.

Can I die from endometriosis?

No. Endometriosis does not seem to be a life-threatening illness. However, if ignored and left untreated, endo can lead to increased pain, possible infertility, and serious disability. That is why it is so important for teenagers to listen to their bodies.

Is there a cure for endometriosis?

Unfortunately, there is no cure yet for endo. But the Endometriosis Association, through its ongoing support of medical research around the world, is leading the way toward a cure and an end to endo suffering.

Are there any treatments for endo?

The good news is that there are treatments for endo. There are even things that you can do on your own, starting today, that may help you feel better. By making some basic lifestyle changes, many teens have learned to better care for their health.

What should I do if I am experiencing the symptoms of endo?

  • Please do not ignore the symptoms!
  • Talk to your mother, father, guardian, school nurse, guidance counselor, or other trusted adult. Tell her or him about the problem with your period and share this brochure.
  • Ask to have an appointment made with a doctor who specializes in endo.
  • The Endometriosis Association can help you find a specialist. Before you see the doctor, download Talking To Your Doctor, the Body Pain Chart, and Symptom Calendar. These resources will help you prepare for your exam given by the doctor.
  • Read the chapter especially for teens and young women in Endometriosis: The Complete Reference for Taking Charge of Your Health. A good book to read is Changing Bodies, Changing Lives by Ruth Bell and other co-authors of Our Bodies, Ourselves.
  • Tell your doctor exactly how you feel before, during, and after your period. You should tell her or him about anything that seems wrong, or even if it doesn’t seem like it should have anything to do with your period. This will help the doctor to diagnose your condition.
“I had to keep a diary for my doctor when I was ten … Just to explain the cramping and the amount of blood.” – Alexandra, 20

A Special Note to Parents and Teens

Dealing with endometriosis as a teenager can be uniquely challenging. There are times when the disease will interfere with almost all areas of your life, including school attendance, your concentration, energy level, social life, physical activities, and self-confidence.

In addition to the coping skills listed above, teens can also find support by discovering people around them who have knowledge and understanding regarding endometriosis. You may find this person through a support group or online, but it may also be someone you already know.

Likewise, when explaining endometriosis to current friends, remember, they may not immediately understand. It is also helpful that you tell your friends and family what you need the most and how they can best support you.

Speak with teachers and administrators about your diagnosis, as well. If you are uncomfortable doing this, ask a parent or doctor to speak to them.

The parents of teens must also offer ongoing support, asking how they can best help their teen, as well. Issues like poor concentration, pain, fatigue, and nausea or surprise bleeding can make learning difficult. Read the chapter, helping teens with endo: background for parents, doctors, and friends in Endometriosis: The Complete Reference for Taking Charge of Your Health.

Research and learn about the disease. Knowledge is important, but always be careful. Don’t believe everything you read. Fact check information from reputable sources like the EA. Ask questions about your care. It is best for you to know all options. As a teenager, you should ask questions about short and long-term side effects when a drug is prescribed for you. Remember, the two books written by Mary Lou Ballweg and the Association are excellent sources of information.

Remember, you are not alone in your fight!

Contact the Endometriosis Association

The Association offers special support to teens with endo, including our teen DVD, and a teen mentor if you wish. You can also order a diagnostic kit from the Association by emailing us at support@endometriosisassn.org.