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3 Reasons to Consider Joining a Support Group for Endometriosis

Medically reviewed by Debra Rose Wilson, PhD, MSN, RN, IBCLC, AHN-BC, CHT on January 17, 2018Written by Catherine Lovering on January 17, 2018
support groups

Endometriosis is relatively common. It affects about 11 percent of women in the United States between the ages of 15 and 44, according to the U.S. Department of Health and Human Services, Office on Women’s Health. Despite that high number, the condition is often poorly understood outside of medical circles.

As a result, many women don’t find the support they need. Even those with loving, compassionate friends and family may not have access to someone who shares their experience.

Endometriosis is a specific medical diagnosis. Women must make serious choices about life-changing medical treatment. This can be hard to do alone.

A support group offers a forum for comfort, encouragement, and information exchange. This is where women may get help through challenging times. They may also gain techniques to help them manage the condition.

This vital social connection often improves quality of life and empowers women to make informed choices about their health. Either online or in person, a group is one way to access an important lifeline that improves well-being.

1. Knowing you’re not alone

Endometriosis can bring about challenging experiences. You could feel isolated and alone. But in fact, you may have more in common than you realize with other women who also have endometriosis. Many women with this condition have shared physical, emotional, and social experiences because of the ways endometriosis has affected their lives.

For example, it’s common for women with endometriosis to miss out on fun events or activities because of their symptoms. The pain of endometriosis can be difficult to manage. That may lead some women to make different choices and plans than they would if they didn’t have to cope with pain on a regular basis.

Talking to others with endometriosis can help you realize that your experiences are not only “textbook,” but also real-life challenges that other women share. In addition, hearing their stories may help you to identify symptoms that you may not have recognized.

By engaging with others, you can break that feeling of isolation. Knowing that others feel as you do can make the condition more manageable.

2. Learning new coping techniques

Your doctor prescribes medications. But you live with your body 24 hours a day. Staying up to date about therapy options may help you feel more in control of making yourself feel better.

Others in your support group can give you tips on pain management. They may suggest a new exercise, teach you a new relaxation technique, or recommend a new book. By talking with others, you get new ideas for actions you can take to improve your well-being.

Members of support groups can also help you with administrative, medical, legal, or community information. Often facilitators have lists of women-only health clinics or the names of doctors specializing in endometriosis.

Through a support group, you may get help for other social challenges. For example, you may learn of a legal clinic or government agency that helps people with chronic illness to overcome workplace barriers.

3. Sharing experiences

Many aspects of women’s health aren’t openly discussed. As a result, you may find it difficult to find information about how common it is for your symptoms to impact different areas of your life. For example, many women with endometriosis have severe physical pain. This symptom can lead to other experiences, such as:

  • challenges with physical intimacy
  • difficulty at work
  • difficulty caring for family members

By engaging with a support group, you can talk about barriers you've faced in all areas of your life, from your workplace to your interpersonal relationships. In a support group, people are often able to let go of feelings of inadequacy or shame, which may arise for anyone with a serious medical condition.

Where to find a support group

Your doctor may have a list of local, in-person support groups that you can attend. Use the internet to find groups in your area. You don’t have to attend one right away if you don’t want to. The idea with a support group is that people are there to offer a safe place when you need one.

There are also numerous online support groups where women interact over chat and message boards. Endometriosis.org has a list of online support options, including a Facebook forum. Several national organizations outside the United States, such as Endometriosis UK and Endometriosis Australia, have links for interacting with others online.

The takeaway

If you’re living with a chronic illness, it can be difficult to reach out. Often support groups offer a place not only to speak, but also to listen. Knowing there are others who want to connect with you can be a source of comfort and healing.

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