Learn how to talk about your endometriosis

It’s time to SpeakENDO!

Learn how to talk about your endometriosis

It’s important to speak up about your endometriosis symptoms. This can lead to a better conversation with your gynecologist and more understanding from the people closest to you. 

Building a relationship with your doctor

Building a relationship with your doctor

Watch the video to hear from other women who knew that persistence, extreme honesty, and finding the right doctor were successful strategies to being understood.

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Learn how to SpeakENDO to:

Click open each box to learn how to SpeakENDO to the people in your life

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Woman speaking to her gynecologist about endometriosis

Your gynecologist

It can be hard to describe all of your symptoms at a doctor’s appointment, but your gynecologist might assume you’re not in pain if you don’t speak up. So, whether or not you’re currently on treatment, remember to speak up!

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Unbearable pelvic pain isn’t normal. If you aren’t sure, talk to your doctor about it.

Woman speaking to a friend or family member about endometriosis

It only takes a few minutes to prepare for a productive conversation with your gynecologist. Answer a few questions to create a custom discussion guide to make the most out of your appointment. 

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Before your appointment:

Remember to schedule a specific appointment with your doctor to discuss your pain. When you call, make sure to bring up your symptoms, if they have gotten worse over time, and how they may affect your daily activities.  

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Woman speaking to her employer about endometriosis

Your friends and family

The people closest to you can sometimes be the hardest to talk to. They might assume they know everything about you, but talking about your endometriosis can lead to better understanding and compassion.

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Use this example as a starting point for how to talk to those closest to you about your endometriosis pain

“I’m sure you’ve noticed that I’ve been feeling sick a lot recently. I have a disease called endometriosis. I can explain what it is, but it would also mean a lot to me if you could do some research as well. Basically, there is out-of-place tissue growing on the organs around my pelvic region. Living with endometriosis can cause intense pain that I can’t plan for, and it can affect my daily activities. I’m working with my doctor to find a treatment that may help, but I hope you understand if I cancel plans or would rather stay in some nights.”

Of course, everyone’s situation is different. Depending on how much your friends and family know about the disease, you might want to go into more or less detail. The Inner Workings of Endometriosis video is a good way to help people understand the disease.

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Your employers and teachers

How much is too much information for employers or teachers? It can be hard to know how much to share, but remember that people won’t be able to understand what you’re going through if you don’t explain it to them.

If you do decide to talk with your employer or professor, and depending on how much information you feel comfortable sharing, there are a few ways you can explain endometriosis.

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The bare minimum

If you don’t want to share any more information than necessary, try something like this:

“You might have noticed that I am out sick sometimes. I may look fine one day, and be sick the next, because I have a chronic disease. Sometimes I can work through it, but sometimes, it’s best for my health for me to stay home and rest. If you would like any more information or need a note from my doctor explaining this, please let me know.”

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A happy medium

If you feel comfortable enough using the “e” word—as in, “endometriosis”—this explanation gives a bit more context: 

“I’m not sure if you’ve heard of something called endometriosis, but it’s a chronic disease I have. I hope that by telling you this, I can explain why I missed some work unexpectedly. I’m doing everything I can to manage it, but sometimes the best thing I can do for my health is to stay home. If you would like any more information or need a note from my doctor explaining this, please let me know.”

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The whole 9 yards

For those particularly cool bosses or teachers who you feel comfortable enough to open up to:

“Have you heard of something called endometriosis? It’s a chronic disease I have where the tissue that usually grows on the inside of my uterus, starts growing on the outside. It’s more than just bad periods, and it affects women differently. Sometimes it can even keep me at home, in bed. I wanted to share this with you so that you’re not wondering or worrying about my occasional absences. It’s something that I’ve learned to deal with, and I do my best to not let it affect my activities. But, when I’m having endometriosis pain, sometimes the best thing I can do is stay home and rest.”

A lot of people have heard the word endometriosis, but don’t fully understand the disease. Remember, endometriosis affects about 1 in 10 women of reproductive age, so chances are, the people in your life know more than one woman who has it.