Living with Endometriosis

In Part 1, we covered what endometriosis is, what the symptoms look like, how it affects fertility, and why it is often so hard to diagnose. But understanding the condition is only the beginning. If you are a teen living with endometriosis, or think you might be, it is just as important to know how to manage it, talk about it, and take care of your mental and physical health along the way.

Endometriosis is a chronic condition. That means you may be living with it for years, possibly even for the rest of your life. But it does not mean your life is over. In fact, learning how to live with endometriosis can make you more resilient, more confident in your body, and more in control of your health than you have ever felt before.

How Does Endometriosis Affect Daily Life?

Living with endometriosis can feel unpredictable. One day you might feel fine, and the next day you are in pain that makes it hard to sit in class, focus on a test, or even walk down the hallway. Some teens describe it as feeling like they are carrying around an invisible illness one that no one else can see, but that impacts everything they do. You might miss school or activities. You might have to cancel plans last minute. You might feel anxious about getting your period every month, wondering how bad the pain will be this time. Over time, this can lead to frustration, sadness, and isolation, especially if people around you do not understand what you are going through. It is not just the physical symptoms that make endometriosis challenging. The emotional toll is real. Constant pain, hormonal changes, and medical appointments can leave you feeling drained. You may even start to doubt yourself or feel guilty for not being able to do everything your friends are doing.

Managing School and Social Life with Endometriosis

If you are a student dealing with endometriosis, school can be one of the hardest places to navigate. But you should not have to choose between your education and your health. Here are a few strategies that can help you stay on top of school while managing your symptoms.

Communicate with your teachers or school counselor. You do not have to share all the details, but letting someone at school know that you are dealing with a medical condition can open the door for support. They can help with extensions, rest breaks, or missed classes.

Track your cycle and symptoms. Use a calendar or app to mark when your period starts, how long it lasts, and what symptoms you have each day. This can help you predict flare-ups and plan ahead for days when you may need extra support.

Build a support system. Talk to friends you trust. Let them know what you are dealing with. You might be surprised how many other girls are going through similar things. Even if they do not fully understand, having someone to listen without judgment can make a huge difference.

Ask about a 504 Plan or medical accommodations. If your symptoms are interfering with your education, you may be eligible for school accommodations through a 504 Plan in the U.S. This could include things like flexible deadlines, access to a nurse, or permission to leave class when needed.

What Happens After Diagnosis?

If you receive a diagnosis of endometriosis, it can be a huge relief to finally have an answer... but it can also bring up new questions. What now? What treatments should you try? How will this affect your future?

The next step is usually building a long-term care plan with a gynecologist or healthcare provider. This might include:

• Choosing a hormonal therapy that works for your body

• Deciding whether to pursue surgery if symptoms are severe

• Exploring physical therapy for pelvic pain or tension

• Working with a nutritionist or mental health professional, if needed

Living with endometriosis means learning to listen to your body. Some days you may need rest. Other days you will feel strong and ready to move forward. Neither is wrong. The key is to develop routines that support your body and mind.

Mental Health and Endometriosis

It is common for people with endometriosis to experience anxiety, depression, or feelings of isolation. Chronic pain affects your brain as much as it does your body. Here are a few ways to protect your mental health while living with endometriosis:

Talk to a therapist. A counselor or therapist who understands chronic illness or reproductive health can help you cope with the emotional weight of endometriosis. Many schools offer free counseling or can connect you to local services.

Practice self-compassion. You are not lazy. You are not faking it. You are dealing with something incredibly real and challenging. Speak to yourself like you would speak to a friend.

Find an outlet. Journaling, art, poetry, music, or any form of creative expression can be a powerful way to release frustration and reconnect with yourself.

Connect with others. There are many online communities and youth support groups for teens living with endometriosis. Sometimes, just knowing someone else understands is enough to make you feel seen.

What About the Future?

Looking toward the future, it’s natural to have questions. Will this get worse? Will it stop me from having kids someday? Will I always be in pain? These are hard questions, and there aren’t always easy answers. Endometriosis affects everyone differently, but one thing is true for almost everyone: the earlier you get support, the better you can manage it. Having endometriosis doesn’t mean your life is on hold. Many people with the condition go on to have successful careers, fulfilling relationships, and healthy pregnancies. What makes the difference is staying informed, working with the right doctors, and continuing to advocate for your needs as you grow older.

Your story with endometriosis may not look like anyone else's — and that’s okay. Some people find relief quickly with hormonal treatment, while others go through a long process of trial and error. Some have surgery, some don’t. Some deal with only a few symptoms, while others face intense challenges. What matters is that you keep showing up for yourself. Keep learning about your body. Keep asking questions. Keep speaking up, even when it’s hard. You deserve to feel well, to be heard, and to be taken seriously. Endometriosis is real, and so is your strength.