The Endometriosis Social Influencers You Should Know About
Endometriosis affects 1 in 10 women.
It can be incredibly painful, pose long term issues (like infertility), and sometimes, even requires surgery as part of the treatment plan. (Read Lena Dunham's story here.)
But it’s also created a community of women who support one another through shared experiences, resource assistance, and awareness spreading.
Where do these 1 in 10 women, over 170 million women worldwide, turn when they need help? If you are one of the 1 in 10, find peace in knowing that there is a whole set of women waiting for you, needing your support right back.
RMA of Connecticut sees many endometriosis patients, some to only treat the syndrome itself and others to assist in endometriosis-caused infertility. We have a passion for helping these women and supplying them with every resource we have at our disposal. One of those resources is social media.
We found four women who work tirelessly to supply the endometriosis community with a platform to be heard and a resource for learning. Below, we will take you through the four social media endometriosis influencers who are not “changing the game” of endometriosis conversations, but creating it. Let’s meet these courageous women!
Social Media Influencers for Endometriosis Support, Guidance, and Learning
I reached out to each one of these influencers and had them share their mission with me. Each woman brings a different style to her platform, but all are making big waves in endometriosis awareness. Enjoy their words that were directed straight to YOU and to the broader endo-community.
Mission: “It’s unfortunate that it takes us so long to be diagnosed. Into adulthood, we tend to be stuck in our ways of dieting, our brand loyalty to feminine care products, the amount of exercise we participate in, etc. Because of those habits we’ve already created, I personally feel when you’re first diagnosed, we’re not sure of ways to cope with it. And that’s why it’s so important for me to share every little tip, trick, and hack I know that helps living with Endometriosis easier. That way you can get out of bed and continue on with your everyday responsibilities.
“Although I am mainly a beauty and fashion content creator, I talk about endometriosis on my YouTube channel and Instagram often. It’s important to me to discuss something that I’m currently dealing with because 1-in-10 women have this chronic illness. My content mainly focuses around living with endometriosis and how you can lessen the pain organically. I speak about the chemicals that are in our big brand feminine care products and brands with healthier alternatives. I talk about how tea can soothe your cramps, and I discuss steaming as a way to, if not get rid of completely, shrink your ovarian cysts.
“Most importantly I show my support to the community as a shoulder to cry on and as an ear to listen. I also bring awareness to those who may not know what Endometriosis is. Maybe the symptoms sound familiar to their own experiences or a friend and/or family member’s, and instead of being dismissed by their health care providers, they will feel empowered to demand the proper tests for a diagnosis. I want my audience to know they have a sister, friend, niece, or however they view me, here for them in full support.”
How to Find Casey Hinds
Mission: “I am a social worker and advocate in the endometriosis and infertility communities. Like many others who struggle with the disease, I spent years being misdiagnosed and dismissed, not realizing my infertility, painful periods, stomach issues, chronic fatigue, leg and back pain were all related to having endometriosis.
“I now spend my time educating and empowering patients, while also trying to push for greater awareness and improved standards of care for the medical community. While multidisciplinary care is key to treating endometriosis, many patients do not know that excision surgery, pelvic floor therapy, and even diet can significantly help with endometriosis symptoms and treat the disease. Even when patients are aware of these treatments, they may have trouble accessing quality care based on their finances, insurance or where they live.
“I advocate so that, one day, multidisciplinary care will be available to everyone who needs it. I also want endometriosis to be recognized as not just a reproductive disease, but a disease that impacts many body systems and also has a profound emotional and social impact as well.”
How to Find Casey Berna
Mission: As The Endo Educator, I have taken a horrible disease that had riddled my life into something positive. My cycles were three months at a time, nine months out of the year with a 3 day-month break in between due to birth control treatments. I had continuous pain even when I was not on my cycle, so you can imagine how fatigued I constantly was, but it didn’t stop the grind.
“Not only do I use my platform to educate young ladies by teaching classroom sessions about Endometriosis and general period healthcare, but I am also using my gift of writing to touch those women who are already affected by the disease. I’ve been working diligently to show my fellow Endo warriors that this disease does not have to stop you from living your life.
“Additionally, I advocate for women of color so that we aren’t dismissed by physicians when explaining symptoms. It’s important that we take a stand against the medical community by not being ignored any longer.”
How to Find Samantha Denäe
“I started The Endo Chronic-ills after finally being diagnosed with endometriosis in March of 2019; after a 10-year delay in diagnosis that included misinformation by my own doctor, multiple misdiagnoses, as well as unnecessary treatments and surgery.
“Unfortunately, this part of my story is not unique. We suffer in silence because it is considered a 'taboo' topic since it is focused around Women's Health and reproduction, but endo is so much more than that. It is a whole body disease. My mission is to create a safe space for those suffering to talk openly about their symptoms such as painful periods, bowel issues, fertility, etc. without fear of judgement, to produce more awareness, and to change the stigma surrounding period pain and endometriosis.
“When it comes to endometriosis, especially extra-pelvic endo, the patient often knows more than the physician, therefore we have to arm ourselves with knowledge and learn to be our own advocate. It is not an easy thing to do to stand up to your doctor and push back when you are not being taken seriously and I hope to help others overcome this and feel empowered.”
How to Find Brooklynn Chess
"My name is Shantana Hazel, and I'm the Founder of Sister Girl Foundation, Inc. Our goal is simple: we want to empower women with endometriosis and gynecology cancers. We fulfill this goal by providing education, awareness, advocacy, and support.
"I created this platform on March 4, 2010 to provide a space where women living with endometriosis can come to for support and guidance. With the help of my beautiful team of women, we have been able to provide these services through our luncheons, year-round advocacy, and one-on-one peer support.
"I’ve also written a book called 28 Ways On How To Advocate For Your Healthcare. This was important because I didn’t have these tools to help me navigate through my intense health journey. I wanted to give this guide to others who may feel just as lost as I did. The beauty of this book is it’s beneficial whether you’re sick or healthy. It's important to me to accompany women and their loved ones to doctor’s appointments.
"As well as be a source of support during surgical procedures. We not only provide support for the Endo Sister Girls but for their family and friends. I myself have endured 16 surgeries and countless hospital and emergency room visits. For many years, I suffered in silence due to not fully understanding my illness. Also not wanting to feel like the person who complained all the time, even though I was in pain daily.
"Deciding to start a foundation that I knew in my heart was needed was actually scary at the same time. It meant that I would unveil my mask I’ve worn for many years. People would see a more vulnerable side of me. But I did it anyway and it has been one of the best decisions I’ve ever made.
"Now, we have a bigger network and resources to help more women. Through our growing network of endometriosis support, I’ve met some of the most incredibly amazing women across the world."
How to Find Shantana Hazel
Find Support that Works for You
Hopefully, these women will be helpful to your journey with endometriosis. Whether you find comfort in shared experiences, acceptance through sharing your own voice, or symptom management through lifestyle tips, these women (and many more!) are here to help you!
If you are still seeking information or assistance with your endometriosis or infertility caused by the syndrome, know that RMA of Connecticut is another resource for you. Choosing a clinic is a big deal, so we've provided you with a downloadable, free eBook that will help hold your hand through the process.
Take a hilarious tour of our fertility clinic with another one of our favorite influencers, @HilariouslyInfertile.
About Virginia Hamilton Furnari
Virginia Hamilton Furnari is RMA of Connecticut’s Brand Specialist and has a background in writing, marketing, and content production. In addition to helping mold the RMA of CT brand through blogs, videos, and events, she is also a patient and has undergone many fertility treatments. Given her professional and personal involvement in the fertility community, she has immersed her mind, body, and soul in family-building education.