Managing your endometriosis can be overwhelming. And stressful.
But here’s the thing—Everyday women have endo. Celebrities have endo.
The truth is that 1 in 10 women have endometriosis. Which means that you are not alone in this.
In this article, we share how to find endometriosis support groups in-person and online, and how finding endometriosis support is easier than you might think.
When You Need Endometriosis Support
You’re going to have to reschedule your date night … again.
You need to cancel on movie night with your girlfriends … again.
Maybe you’ve used up all your vacation days stuck in bed instead of on a beach somewhere.
Endometriosis can really mess with your:
Whether you’ve just found out you have endometriosis and are looking for somewhere to turn, or you’ve had endo for a long time without anyone to talk to about it, you are not alone.
You’re part of an endometriosis community here, and we’re happy to have you with us.
The Benefits of Endometriosis Support Groups
A study of online support groups published by the University of Nottingham in 2016 showed the top four benefits of a support group:
- Connection with others; feeling part of a group or community
- Exploration of information; learning about what has/hasn’t worked for others
- Narration of experiences; sharing a hearing others’ stories
- Self-presentation; the ability to choose how one presents oneself
Chronic disease management and general well-being can also improve with the help of peer support groups.
According to some studies, people who attend peer support groups have better medical outcomes than those who do not.
The Mayo Clinic says that peer support groups do best at providing emotional support when medical professionals and families are unable to do so.
Friends and family members might not understand treatments or the severity of the disease.
You deserve support from people who understand what you’re experiencing.
Finding someone with endo to confide in and learn from could transform your experience.
Additionally, you might even find someone you connect with who you can be a cheerleader for.
Endometriosis Community: Where To Find In-Person Support
Women with endometriosis commonly feel socially isolated and alone because of the disease.
Well, I’m here to tell you that that ends today.
You may find yourself searching “endometriosis support group near me” online to see what comes up.
Truth be told, that isn’t a bad approach.
But, I recommend also trying out these other options to find groups in your area:
- Ask your doctor if they know of any local groups
- Ask for resources at a nearby hospital or clinic
- Look to endometriosis nonprofit groups in your area
Where To Find Endometriosis Support Online
If you don’t feel comfortable confiding in an in-person support group or talking to someone who doesn’t have endo themselves, don’t worry.
And definitely don’t give up! The internet is here to help.
Several social media platforms offer support through:
- Chat rooms
- Conversation threads
Facebook and Reddit provide platforms for the endometriosis community to connect and share their experiences.
1. Endometriosis Facebook Groups
Facebook Groups offer many options.
I’m sure you’ll be able to find one matching what you’re looking for.
Here are some of the group categories you’ll find:
- Endometriosis support groups
- Endometriosis advice groups
- Endometriosis diet groups
- Endometriosis conceiving groups
- DIE groups
- Endometriosis support for women and partners
- And location-specific groups
2. Endometriosis Chat Rooms
Internet chat rooms aren’t just for weirdos anymore.
Chat rooms are usually anonymous and open to anyone affected by endometriosis.
These are great if you’re looking for a smaller group setting or to get online support on a regularly-scheduled basis.
Some are moderated by a medical professional who can answer general questions and provide support to anyone impacted by endometriosis.
Loved ones are welcome too!
3. Endometriosis Support Reddit Forum
Depending on how you feel about Reddit, the Endometriosis Support Reddit Forum may or may not be the best place on the internet.
The support forum is overflowing with conversations with women asking questions and providing honest answers; pictures of endo-themed art women have created, and support surrounding women at every stage of diagnosis and treatment.
If you’ve never tried Reddit, I’d definitely suggest starting here.
4. Endometriosis App
Several apps geared towards endometriosis support are completely free to download and use.
These are great if you’re looking to have everything in one place.
You can track your own symptoms as well as talk to other women with endometriosis.
Flutter Health helps you:
- Track your symptoms
- Track your period
- Connect with supportive peers
MyEndometriosisTeam is dedicated to helping you connect with the endometriosis community and specialists near you.
How to Support Someone With Endometriosis
So you’ve found a support group and decided to join in.
You may feel like you’ll say the wrong thing and make the situation worse.
But it’s true that sometimes the worst thing you can say is nothing at all.
My advice for being supportive in these groups is generally the same as my advice for a loved one of someone with endometriosis.
Some of the best ways you can help support someone with endometriosis are:
- Ask if you can do anything to help
- Let them know you’re learning about endo and are open to talking to them about their experiences
- Offer to help them find endometriosis advice online, or an endometriosis community
- Let them know you don’t mind if they have to cancel plans
- Share if you have had similar experiences with relevant tips
- And always remind them that you’re in their corner!
Help Beyond Support Groups
With endometriosis, we’re all in it for the long haul.
Luckily, you can come at your symptoms from all sides.
One step to keeping endometriosis a manageable part of your life is to cultivate a healthy sex life.
Also, women diagnosed with endometriosis commonly find that making lifestyle changes with diet and exercise can help manage their symptoms.
Here are some tips on how to do just that.
After having two surgeries to treat my Stage 4 endometriosis, I was devastated to learn that my endo had returned to the point my doctor recommended I have a third surgery to relieve my symptoms.
I realized that I didn’t want to continue down the path of continuous surgery, and did research into what I could do to manage my symptoms without it for the immediate future.
I found that changing my diet and doing regular exercise would help me.
Now I can’t promise that the endometriosis diet will work for you.
You are your own individual, fabulous person.
But you may find that eliminating inflammation-causing foods (like sugar) reduces your endometriosis symptoms.
And that’s what we all want.
Combining diet with regular exercise can really help in reducing your monthly discomfort.
And I’m not talking about anything over-the-top. I’m suggesting:
- Light cardio
- Some stretching
We should all exercise regularly anyways, but people with chronic conditions like endometriosis can use it to help manage their symptoms.
- You need it to help reduce your stress.
- You need it to decrease your estrogen production.
- You need it to increase blood flow to all your organs.
- And you need it to release endorphins (our best friend, the “feel-good” chemicals).
So when you can and where you can, go move that fabulous body.