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How to Share and Talk About an Endometriosis Diagnosis

How to Share and Talk About an Endometriosis Diagnosis

What to consider when discussing an endometriosis diagnosis with friends, family, your partner, or coworkers.

A diagnosis of endometriosis can feel overwhelming, leaving you with lots of questions about who to tell. You may be concerned about how people will react. What will they ask you? Will you know how to answer them? Because endometriosis is different for everyone—and everyone has different communication styles as well as different dynamics with the people in their life—there’s no one way to go about sharing your diagnosis. Here are some basic strategies you can keep in mind to help guide these conversations.

Explaining endometriosis
Even if the person you’re talking to has an idea of what endometriosis is, it may be helpful to provide an overall explanation. Having a list of points in front of you can help you keep your ideas clear if you get nervous and start to lose your train of thought. You can talk about how in a woman’s body, there’s tissue that typically lines the inside of the uterus. But for some women, some of that tissue grows outside the uterus as well. You can say that when this happens, it’s called endometriosis. And this is what you have. 

Explaining your symptoms
After you’ve talked about the basics of endometriosis, a good next step is to discuss the symptoms. You can explain that endometriosis can cause pelvic pain, excessive bleeding, and in some cases, difficulty getting pregnant. This is a good time to explain that the symptoms (and the severity of symptoms) vary from woman to woman. Depending on who you’re having this conversation with, you can decide how much detail you want to go into about your specific symptoms.

Explaining treatment
The person you’re talking to may be eager to know if there’s a cure for endometriosis. You can be straightforward by explaining that while there’s no known cure, there are many treatment options available that may help reduce symptoms, slow disease progression, and prevent complications. You can explain that you’re continuing to work closely with your healthcare team.

Sharing with your partner
Your partner may have been with you on your journey toward diagnosis and be familiar with the symptoms you’ve been experiencing. Or you may just be starting to explain. Either way, it’s important to keep conversations open and honest. Your partner may be eager to know what they can do to help. This is a great opportunity for you to ask for patience and understanding, explaining that some of your symptoms could interrupt your plans from time to time. You can suggest quiet activities to enjoy at home (such as watching a movie or playing a board game) if your symptoms act up. You can also mention that there may be instances when intercourse is painful, that this may be common during certain times of the month, or that it may be unpredictable. Expressing yourself honestly—and also acknowledging your partner’s feelings—is important for you both.

Since endometriosis may make it harder to get pregnant, you’ll want to have a conversation at some point if you plan to start a family. But like with so many things related to endometriosis, your healthcare team can help answer questions you and your partner may have, as well as recommend treatments.

Sharing with your employers
It’s really up to you how much you choose to disclose to your employers. There may be certain times of the month in which you experience pain or excess bleeding—and you may come to know when to expect these days, based on your menstrual cycle. Therefore, you may want to talk with your boss about working out a schedule where you work remotely or stay home during these days. For some women, the onset of symptoms throughout the month may be less predictable. In this case, a conversation right from the start may be explaining that you have a condition called endometriosis—and it can cause painful symptoms at unexpected times. You can direct them to a couple resources if you don’t feel comfortable going into detail (this applies to anyone you’re sharing your diagnosis with), and you can also tell them your healthcare provider can provide further information, if needed.

Medically reviewed in March 2020.

Sources:
UpToDate. "Patient education: Endometriosis (Beyond the Basics)."
Office on Women's Health. "Endometriosis."
Mayo Clinic. "Endometriosis."
Eunice Kennedy Shiver National Institute of Child Health and Human Development. "What are the treatments for endometriosis?"
endometriosis.org. "Painful intercourse."
Brigham Health. "Endometriosis and Fertility."
Endometriosis.net. "Work and Endometriosis."

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