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Why These Endometriosis Patients Won’t Stop Spreading Awareness

Why These Endometriosis Patients Won’t Stop Spreading Awareness

It’s estimated that 200 million women worldwide suffer from endometriosis. March marks Endometriosis Awareness Month and a time to bust the myths, misconceptions, and stigma attached to the condition. The Endometriosis Foundation of America announced that this month, along with raising awareness for landmark research and advocating for patients, they wanted to raise money one jog, journaling session, and stretch at a time. The Mind, Body, and Soul Wellness Challenge encouraged the endometriosis community to come together to commit to one healthy activity a day. It not only gave participants the opportunity to raise money and awareness for endometriosis but also start conversations on the condition that’s so often silenced. 

“I was diagnosed two years ago after years of advocating for myself,” says 25-year-old Molly. She joined The Mind, Body, and Soul Wellness Challenge after seeing it on Twitter. The challenge ran for the first two weeks in March, up into the 14th. “Endometriosis can be really lonely. I didn’t know anyone with the condition and I had to see three doctors before I even felt listened to. Finding ways on managing my pain has been key and one part of that is moving,” she said. 

The Mind, Body, and Soul Wellness Challenge was hosted in partnership with Kilter. Completing one healthy activity a day may sound a little daunting, especially during COVID-19, but participants were offered hints and tips to support them through their journey. Yoga, jogging, and workouts counted towards your daily wellness goal. You could attach your Strava, Apple Health, and Fitbit. And if you wanted to take it down a notch, journaling and meditation sessions also counted. 

“I know everyone manages their pain differently but for me gentle daily movement has been so helpful. I was struggling to motivate myself at the beginning of the month so The Mind, Body, and Soul Wellness Challenge came at a great time,” says Molly. “It wasn’t about how hard I’d workout or far I’d run, it’d be space in my day where I could feel empowered over my pain and knew that others were doing the same.” 

Rather than putting pressure on yourself or your body, The Mind, Body, and Soul Wellness Challenge focused on doing one thing a day that made you feel good inside and out. The challenge was Monika’s third time participating in an EndoFound event. She was diagnosed in 2015 during laparoscopic surgery to remove an endometrioma. “I participate in events like this for the Endometriosis Foundation of America, and during Endometriosis Awareness Month, because we need more awareness not only about endometriosis but women’s health,” she says. 

Endometriosis Awareness Month is a great time to promote a better understanding of what the condition is. “A heavy and painful flow is not normal for menstruation. Having ovulation pain is not normal. Yes, we talk about painful menstruation as the key symptom. But endometriosis is so much more than that,” says Monika. “I didn’t know that my constant fatigue and nausea were a symptom of endometriosis. Or even that the pain I would experience during sex was not normal.”

In addition to raising awareness, the challenge also included prizes for the competitive folks inthe endometriosis community. Participants were encouraged to have their friends, family, and loved ones check out their progress and donate money. The top three fundraisers received a body and face gift set from Turmerica. The products, made by the women and endo patient-owned business, contain turmeric which has anti-inflammatory properties. Winners could treat themselves for all of their hard work with a body and hand lotion, face mask, and night balm. And the first 100 people to raise $200 won a dry brush. 

“The prize was a bit of an incentive,” laughs Gina. She tells me that she got her partner involved and two of her friends. “Getting up and doing something that you know is good for you isn’t always easy but we got a little bit of a competition going between us. It also gave me the opportunity to speak to my friends about my endometriosis diagnosis. I realised that we’d never spoken about it before so when I’d canceled dinners with them or days out because I was having a bad pain day, they didn’t really understand it. The challenge gave us the space to talk about what the condition actually is.”

Explaining your endometriosis diagnosis or symptoms can feel tiring. Research collected by the BBC said it takes an estimated seven and a half years to get an endometriosis diagnosis. Molly explained that the challenge was the first time she reflected on her journey. “I’m not the kind of person to look back but during the challenge, I reflected a lot more on the period of time before I was diagnosed,” she said. “It felt particularly important during Endometriosis Awareness Month that I had this space to journal about the years spent in doctors’ offices. Once I started writing I just didn’t stop.” 

The Mind, Body, and Soul Wellness Challenge may have ended on March 14 but EndoFound is by no means taking their foot off the pedal. From March 15-31 they’re asking members of the community to film a video of yourself answering the statement, “tell me you have endometriosis without telling me you have endometriosis.” Share your clip on social media and tag @endofound, #tellmeyouhaveendo, #myendovideo, and #endofound. 

Endometriosis Awareness Month means so many things to so many people but Monika says, “what motivates me to keep going in challenges like this and continuing to be vocal about endometriosis, is purely selfish. I have to. I can’t let go. I will always have this condition. It is not going away. So I am going to talk about it because it is the reason behind everything that I do.”