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After scouring Google for answers, Caroline Koller texted her sister, Laurie Beth, that she thought she had cervical cancer.

Five days later and 45 minutes into her next gynecologist appointment — after going to nine different doctors over six months for answers about her chronic bleeding and lower back pain — the doctor found the tumor in her cervix.

“I was doing tons of self-research, going down like Reddit rabbit holes and on page four of Google reading someone’s random blog, just to try to find someone who had maybe experienced what I was going through,” Caroline said. “I was in so much pain and so confused, like, ‘What the heck is going on?’”

After the Syracuse University alumna’s diagnosis in October 2019, she went through a six-week treatment plan right away. And in December, she received her one-year cancer-free PET scan – a positron emission tomography imagery test.

But instead of leaving her experience in the past, Caroline chose to create femUNITY, a platform for women to crowdsource their health issues, in July. The site now has over 600 contributors, who can post in 11 different forums categorized by topics such as mental health, gynecologic health and general symptoms.

Caroline was diagnosed with cervical cancer in October 2019 and December 2020 marked one year cancer free. Courtesy of Laurie Beth Koller

The platform is not backed by medical professionals, but rather, it’s a place for women to get information from other women about symptoms and health issues so they can go into their doctors’ appointments better equipped to self-advocate.

“To see her go from surgery to surgery and then create this platform that is going to help so many women, I struggle with the words,” Laurie Beth said. “The only word that comes to mind is that Caroline has shown such grace through it all.”

Creating a space for women to discuss health issues had been on Caroline’s mind since before her diagnosis, but it wasn’t as much of a priority during her treatment. Not even six months after her treatment ended, Caroline, Caroline’s boyfriend, Laurie Beth and her mother jotted down ideas for a platform that would eventually become femUNITY.

Besides managing the company’s partnerships and promoting the name femUNITY to brands, Caroline’s sister is also a contributor to the site. The 2018 SU graduate has endometriosis, a condition that is common among women but on average takes seven and a half years to diagnose.

After sharing her experience with her second endometriosis surgery on femUNITY, Laurie Beth heard from a woman across the country who was also struggling with the same disease. The woman said she couldn’t find anything about that specific surgery until Laurie Beth’s post.

“I firmly believe that femUNITY is there to make women feel less alone,” Laurie Beth said.

Madeline Oleszkiewicz, a friend of Caroline’s and a 2016 SU alumna, was a beta tester for the femUNITY website. She turned to femUNITY to share her story with polycystic ovary syndrome, something she’s struggled with since high school, and the frustration that comes with doctors telling her there’s nothing she can do about it.

Not even six months after her treatment ended, Caroline (right) and Laurie Beth, along with Caroline’s boyfriend and the Kollers’ mom, began making plans for femUNITY. Courtesy of Laurie Beth Koller

While there’s no common treatment for the disorder, it has been nice to relate to other women and what they’re going through, she said.

“Knowing that you’re not alone is just such a huge benefit, and just being able to be like, ‘Hey, yeah, that’s happening to me, too,’” Oleszkiewicz said. “It’s really just a comforting feeling to know that there’s others going through the same thing that you are.”

Caroline hopes to take the information that women are sharing on femUNITY to push further initiatives and enact policy changes related to women’s health.

Megan Schofield, the digital director of the platform, never had a space where she could have conversations with other women about their health experiences. Through femUNITY, she can connect to real people going through similar issues and not just comb through articles that only scare her.

Schofield met Caroline in Virginia Beach last summer, and they spent hours sharing their health experiences. After hearing Caroline talk about femUNITY, she was instantly connected to the idea. She knew how lonely going through her own 10-year battle with endometriosis had been, and she wanted to put her graphic design skills to use to help Caroline build the company.

In her current role at femUNITY, Schofield creates graphics for the company’s social media and worked closely with Caroline to give the website a “calming, beachy” feeling. The branding for femUNITY is focused on water because it “ebbs and flows” like life, Caroline said.

“The energy that we get from women sharing their experiences and wanting to connect with other women is such a huge force for us to stay moving and to stay on top of things,” Schofield said. “So it’s a really awesome source of energy for us to keep going and want to get that information out there for them.”

Published on March 7, 2021 at 9:39 pm

Contact Sydney: sabergan@syr.edu