They say that endometriosis affects 1 in 10 women, but do you ever feel like when you look around, you’re the only one going through it?
Not only does this chronic disease affect the body, it can be extremely isolating as well.
Yes, friends and family can be great sources of support, but there’s nothing like talking to people who know exactly what you’re going through.
Finding an endometriosis support group is important for:
- Finding validation for your pain and symptoms
- Staying connected and up to date with endometriosis information
- Making friends and forming a community
- Getting tips on coping with the day to day struggles of endometriosis
So how do you find a community that’s just right for you?
Look no further.
I’ve put together this list of endometriosis support groups, ranging across various platforms, so that you can find a community where you feel at home.
(Excludes endometriosis organizations that do not feature a community).
ENDOMETRIOSIS SUPPORT GROUPS
Local Support Groups
If you long to meet your endo-sisters face to face and crave that in-person interaction, a local support group may be the best for you.
Here are a few ways to find endo-warriors like you, near you.
- Meetup.com – Find face to face support by searching this database
- If you’re in the UK, find a list of local support groups here at endometriosis-uk.org
Online Communities For Endometriosis
- The Reddit Community For Endometriosis (available by app)
Reddit hosts discussion forums for many different topics, including endometriosis.
Follow this link for endo-related information, support, stories and research.
With over 11K members to this community, you won’t feel alone anymore.
This community resembles a social media platform. It lets you add friends and post (and read) statuses.
It allows you to ask and answer questions and share your story.
It doesn’t appear to host a large membership right now, but that just may be to your liking.
- MyEndometriosisTeam (also available by app)
Described as a social media support group, myendometriosisteam allows you to add pictures, statuses and engage in conversations with other women with endometriosis. The app also allows you to put together a “team” and find others that are near you.
Facebook Groups For Endometriosis Support
Private Facebook groups that endo-warriors (and/or their loved ones) can join in order to find information and insight.
This group is focused on asking questions and sharing experiences, advice & support.
The conversation is frequent, with about 80 posts a day.
In my opinion, this is the most popular endometriosis support group around.
Nancy is a retired nurse that has spent years learning and curating evidence based research and resources about endometriosis. She upkeeps a resource library via this heavily moderated facebook group and is famous for her list of “Nook Doctors” – doctors who are highly skilled in endometriosis surgery.
I believe this is a must-follow for anyone with endo (just to have access to the information as you won’t get it anywhere else). Just be aware- this group focuses on endometriosis information and it is not for chatting. For more casual support posts, I suggest any one of the other groups.
Focused on sharing endometriosis-related memes and humor.
This group is not centered on advice.
Endometriosis Instagram Accounts
I know that instagram accounts aren’t necessarily support groups but for my endo sisters that love Instagram, it might be nice to scroll through your feed and see some posts that relate to your life with endometriosis.
- @endogram – endometriosis graphics & awareness
- @imaprilchristina – endometriosis advocate; hosts an NYC endo brunch
- @speakupspeakendo – chronicling real life with endo (w/ humor)
- @endogirlsblog – for endometriosis education
- @endostrong – endometriosis supporter; navigating life w/ chronic disease
For endometriosis-related quotes, illustrations & beautifully, curated feeds, check out these accounts:
If you have the resources, you can also consider attending endometriosis-themed live events centered around meeting others and gathering a lot of up-to-date knowledge at once.
A 2-day conference that hosts workshop and interactive discussions amongst endometriosis patients and practitioners.
Endometriosis is hard enough without feeling like the people you know will get sick of how much you talk about it. It’s hard enough without feeling like other people don’t get it. I truly hope you find that community that makes you feel a bit better.
Have you joined any endometriosis support groups or communities? Which one is your favorite? Comment below.
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