Teenagers Living with Endometriosis
Reviewed by: HU Medical Review Board | Last reviewed: June 2018 | Last updated: November 2020
It is possible to be diagnosed with endometriosis as a teen, and many women diagnosed in adulthood report that their symptoms began much earlier in life.1,2 Being a teenager can bring its own set of challenges, however, being a teenager with a chronic condition may be especially difficult. If you or a teenaged loved one think you may have endometriosis or have been recently diagnosed with endometriosis, life may feel like it has been turned upside-down. The good news is, that although there isn't a cure for endometriosis at this time, the earlier the condition is found, the greater the chance that the damage it may cause can be slowed or prevented.1 Finding endometriosis early on, although life-changing, may be beneficial later on. Several important ideas to consider that are important for teens who think they have endometriosis or who have been diagnosed with endometriosis are outlined below.
It's okay to speak up
If you are experiencing pain during your period, it is okay to speak up about it. When you're younger or have had fewer periods, it may be easy to think that the pain you're experiencing is normal. When you tell older friends or family members that you're having bad period cramps, they may tell you it's a part of life and that you'll get through it. However, you know your body the best. If your pain is bad enough that it's preventing you from completing your daily activities or causes you to miss school, it's okay to advocate for yourself and speak up about what you are going through. Even if you can make it to school, if your pain is preventing you from focusing in class or getting school work done, it's time to seek help. Tell your parents or your healthcare provider if you're in pain and don't be afraid to advocate for yourself and for answers.
This is not your fault
If you are diagnosed with endometriosis, you may experience overwhelming feelings of confusion, anger, shame, or guilt. These are all normal reactions to receiving a diagnosis of a chronic condition, and it's okay for you to be upset. However, it's important to remember that your endometriosis is not your fault. The exact cause of endometriosis is unknown and is thought to be the result of a variety of factors, the majority of which you have no control over. You did not do one specific action or make a bad decision that led to your condition.
You control who needs to know
As mentioned, it may feel shameful or embarrassing to be living with a chronic condition, especially one that affects the female reproductive system. Although these feelings are normal, you still may not want others to know about your condition. Especially when you're still learning about it yourself. It's important to remember that just because you have received a diagnosis, it doesn't change anything about you in the eyes of your friends, teachers, coaches, and peers. No one has to know about your endometriosis unless you want to tell them yourself.
If you are uncomfortable talking about it with those around you, your endometriosis can remain between you, your healthcare provider, and your parents, if that's what you want. However, it can be overwhelming handling new changes, medications, and feelings without the support of those around you. If you do not want to confide in your friends or other family members, it may be a good idea to see a counselor or therapist to make sure that you're expressing the feelings you need to and handling your emotions in a healthy manner.
Everything isn't over
Although receiving a diagnosis of a chronic condition without a cure may feel like your whole life has changed, this is not the end of everything you used to do or know. There are treatment options available to manage symptoms, and as mentioned, treating symptoms early may prevent further damage later on. Performing an internet search on endometriosis may lead to overwhelming and scary information about things that could happen. Although these things happen to some individuals with endometriosis, they do not happen to everyone. If you are concerned about a specific treatment outcome, symptom, or issue later in life, talk with your healthcare provider to determine if it is a possibility in your situation, and what steps you may be able to do to prevent it.