This post is all about support groups for endometriosis.
They say that endometriosis affects 1 in 10 women, but do you ever feel like when you look around, you’re the only one that has it?
Not only does this chronic disease affect the body, it can be extremely isolating as well.
Friends and family can be great sources of support sometimes, 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, 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
Endo-warriors (and/or their loved ones) can join the following support groups in order to find information and insight about this condition.
The list is organized into the following categories:
- Local Support Groups
- Phone App Communities
- Facebook Groups
- Instagram Accounts
- Live Events
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
There aren’t very many in-person meet-up groups (especially these days) so another strategy is to join a facebook group from below and find endo-sisters who live near you to meet up with.
Phone App Communities For Endometriosis
Looking for a group of endo-warriors that you can carry around with you on your phone (that’s not Facebook or Instagram)? If so, this list of endometriosis phone app communities is right up your alley.
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 are my support groups of choice. They are easy to join and I can engage when I choose and mute them if I’m ever overwhelmed. I am a member of almost all of the ones listed below.
Check them out!
This group is focused on asking questions and sharing experiences, advice & support.
The conversation is frequent, with at least 6 new 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 all 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 of the other groups.
As the name implies, this group is focused on endometriosis-related memes and humor.
It is not centered on advice.
Per it’s about section, this group is to provide a non-judgmental place for anyone affected by endometriosis to share their thoughts, feelings and questions.
This would be a great group for you if you are looking for a wide variety of endo-related concerns and shenanigans. There are over 100 new posts a day.
Endometriosis Support has a large number of members and a diverse array of topics and questions, for you to engage in.
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.
- @speakupspeakendo – chronicling real life with endo (w/ humor)
- @imaprilchristina – endometriosis advocate; hosts an NYC endo brunch
- @endogirlsblog – for endometriosis education
- @endostrong – endometriosis supporter; navigating life w/ chronic disease, post hysterectomy
- @theendoproject – endometriosis + adenomyosis support
- @endobabee – living with endometriosis + adenomyosis
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.