Endometriosis is a painful condition that happens when tissue that typically lines the uterus grows outside of the uterus. It affects about 10 percent of women of childbearing age around the world, according to the
Physical symptoms of endometriosis include pelvic and back pain, heavy periods, and fertility challenges. Hormone therapy, pain relievers, and even surgery can help manage these symptoms.
But living with endometriosis can have an emotional impact on you as well. Connecting with others who understand what life with endometriosis is like can be a vital source of support.
Here’s how to get involved in the endometriosis community.
When you’re living with endometriosis, family and friends might empathize with your pain and offer support. However, they might not understand the emotional toll it can take.
An essential source of support comes from others living with the condition. Getting involved in the endometriosis community provides a way to connect with people who understand what you’re going through firsthand.
Here’s a look at the specific benefits of connecting with others who have endometriosis.
Getting involved in the endometriosis community can increase your knowledge and understanding of the condition.
Joining online forums, meetups, or support groups can provide a valuable source of tips and information. Occasionally, a doctor or specialist might visit a group to answer questions and provide suggestions related to home remedies and self-care.
You can also seek information from reputable organizations such as:
People living with endometriosis understand the everyday challenges associated with this condition. They experience similar worries, feelings, and symptoms. And having a shared experience with someone — even a stranger — can help you feel less alone or isolated.
Plus, talking with others in the endometriosis community gives you an opportunity to express your thoughts and concerns without feeling judged or misunderstood. This can relieve some of the emotional impact of living with endometriosis.
Learn coping techniques
People who have been living with endometriosis for years can likely share many strategies that have helped them cope with the condition. If you’ve recently received an endometriosis diagnosis, getting involved in the endometriosis community might open your eyes to new (or different) coping mechanisms.
For example, you might learn practical tips for managing stress and fatigue. Someone might suggest coping strategies you haven’t considered before, like meditating or journaling.
For people who have been living with the condition for longer, connecting with others provides an opportunity to share management strategies that work for you.
Provide a sense of hope
Depending on the severity of your symptoms, endometriosis can be debilitating and interfere with your quality of life. Even though there’s no cure, it’s possible to find symptom relief and slow disease progression.
As you become involved in the community, you will likely meet others who have seen their symptoms improve. This can give you a sense of hope. And the ability to imagine a better future can boost optimism and mood.
Give back to the endometriosis community
Getting involved is also a way to give back to the endometriosis community. In the same way that others may have given you a safe space to cope, ask questions, and express yourself, you can extend support to another person living with endometriosis.
You can achieve this by:
- hosting events
- advocating for endometriosis awareness
- starting a blog to share your personal experiences
Here are several ways to connect with and get involved in the endometriosis community.
Local support groups
Support groups can provide emotional support whether you’ve recently received a diagnosis or been living with endometriosis for years.
Talking openly about your feelings can be empowering. It can help you feel less isolated and anxious. You’ll also hear positive stories from others, which can boost optimism and improve your outlook.
Ask your doctor or gynecologist for information on joining a local support group.
Online support groups
If a local support group isn’t available in your area, consider joining an online community or online support group. They provide similar benefits as in-person groups.
Some online groups to get involved with include the Endometriosis Association Online Community and MyEndometriosisTeam.
You can also look for volunteer opportunities in the endometriosis community. Complete the volunteer interest form provided by the Endometriosis Foundation of America to learn about upcoming opportunities.
These might include:
- organizing or hosting an endometriosis event or meetup
- sharing content on social media
- educating students about endometriosis
Make a donation
If you don’t have time to volunteer, consider making a donation to support your favorite endometriosis organization’s mission. Donated funds can further endometriosis research and education, as well as promote disease awareness.
A few endometriosis organizations that accept donations include:
You can also get the word out on social media. Consider sharing a tip, interesting fact, or statistic about endometriosis using #endometriosis, #endo, or #EndometriosisAwarenessMonth during the month of March.
Endometriosis is a chronic, sometimes debilitating condition. Living with endometriosis can take a physical and emotional toll. But it’s possible to manage symptoms and remain optimistic.
Getting involved with the endometriosis community can provide a much-needed source of support, as well as an opportunity to give back and help others living with this condition.