Endometriosis affects 1 in 10 women, yet it remains a little-known condition. This condition has a significant impact on the lives of those with it, but it can take an average of 7.5 years to diagnose. EndoWarriors are standing together to change this. They have built a community of EndoSisters to offer each other support and show one another they are not alone.
We’ve witnessed the kindness and love spread through this incredible community and we have had the pleasure to speak to EndoWarrior, Sarah Mac. Here she writes an open letter to her EndoSisters.
Somehow, I feel oddly connected to you all as a community. Since I joined a support network for Women with Endometriosis in January, I feel liberated and comfortable to speak about my issues in a forum with people that understand and can offer genuine and kind support.
I wanted to write an open letter to you all and tell you how strong you are. Whether we have spoken or not, I am so proud of you. I wanted to share my tips on daily management of this debilitating disease. If I can help just one warrior, I’ll be happy.”
“By talking, I’m opening myself up to the possibility of support.”
“Are you a member of a support group? It is so important to open up to people about your issues and not to let things bubble up inside of you. As we all know, stress plays a huge factor in our endo symptoms, and living with the illness can become super overwhelming. By joining a support group and talking about your issues, you will find people that may be going through the exact same thing and you can help each other.”
Being a part of the support group…
“There is a huge sense of a tight-knit community in these support groups and even on Instagram! I’ve even met people in real life and have built solid relationships with these strong women across the world.
When you feel low or lonely, you can talk to anyone on a support network that you can trust and find guidance that you need. It’s an even greater feeling when you help others in the group that need it. You get a fulfilled feeling when you support others and everyone is so incredibly thankful for each other too. There is always someone who will listen to you.”
“A problem shared is a problem halved.”
“If you feel very overwhelmed, you can always seek out professional help. You can self-refer yourself for CBT or counselling sessions to address any issues and find an escape from troubling thoughts. Remember that no one is there to judge you and is only there to help. In the UK we are so lucky to be able to have a service like this through the NHS.”
“Although the world is full of suffering, it is also full of overcoming of it.”
“Sisters, I feel you. You are in pain. I totally get it. What we have to focus on is our wellbeing and overcoming the pain that we suffer. Pain management is critical because how else are we meant to try and live a fulfilling life? We need to make sure we listen to our bodies, push ourselves when we know we can handle it and rest when we need to.”
Putting it into perspective…
“Think of yourself as a phone with four bars of battery. A normal person should be able to go throughout the entire day, then when they get into bed, have hours to recharge. For a spoonie, we might have to recharge mid-morning, then again after lunch and more throughout the day because fighting an invisible illness is so draining. Our bars will deplete more rapidly than someone else that isn’t battling with a chronic disease. Please remember to take the time to recharge your batteries. You can’t live life at 10%.”
“Changing your diet can make a difference.”
“I could tell you all about the fifteen different types of medication I take to manage my pain, but we’d be here for days. So, how about different tactics?
Have you changed your diet due to endometriosis? Since eliminating gluten from my diet and limiting my dairy, soy and egg intake, I have seen an enormous difference in my “endobelly” flares. They are now so much less frequent.”
My top tip…
“Try keeping a food diary for a few weeks to see what foods can cause you to flare. Remember, everybody is different. Someone could be intolerant to cow’s milk, but be fine with butter and cheese. Someone can be intolerant to soy sauce but can eat tofu. It really is trial and error when it comes to diet and endo – do what works best for YOU.
You can find more information on Endometriosis Nutrition through this Instagram account. It has loads of helpful tips and recipes for sufferers.”
“I have made it my mission to try and help women suffering from this awful illness that has flipped my life upside down. I am an ambassador for Women With Endometriosis. This is a fresh, new charity that has already secured an APPG to help bring endometriosis into education. If girls find out about the symptoms earlier and know that extremely painful periods are not normal, we could lower the 7.5 years on average that it takes to get a diagnosis. This charity, network and parliamentary group has all been created in the last year. It is astonishing how much work has gone into making WWEndo.”
What you can do…
“If you want to help others, join a support network for spoonies and help to raise awareness for endo as much as you can! If you’re thinking “Little ol’ me couldn’t make a difference…” well get out of that mindset! We are all in this together and I am here for you.
Donate what you can to WWEndo and support TOTM, who are changing the game when it comes to period products. Their range is certified organic, sustainable and registered with The Vegan Society. (Their accessories are all pretty cute too, don’t ya think?!)
I would also highly recommend menstrual cups which are a sustainable alternative to tampons. When using a cup, I don’t even feel that it’s there and it reduces my cramping pain from an 8 to a 5.”
Where you can find me
“If you want to follow my journey and get more tips and tricks on how to manage life with endo, follow me on Instagram!
Remember to stay true to yourself, look after your mental health, support Women With Endometriosis and be kinder to your vagina.”
I’m #PeriodPowerful, are you?
All my love,
Thanks so much to Sarah for this supportive, empowering blog. Let us know your thoughts in the comments below or tweet us @totmorganic