How social support – both online and online – helps people with endometriosis take ownership of their health

How social support – both online and online – helps people with endometriosis take ownership of their health

Endometriosis affects an estimated 1 in 10 women worldwide, and Olivia Culpo is one of them.

The model and social media personality has spoken openly about how endometriosis, a painful condition characterized by tissue similar to the lining of the uterus that grows outside the uterus, has affected her life. On a recent episode of her TLC reality show, The Culpo Sisters, she reflected on her years-long struggle to diagnose the notoriously overlooked disease. She also recently shared the unlikely source of information that ultimately helped her receive a formal diagnosis: social media.

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Information and resources from Reddit forums, YouTube videos and Instagram posts confirmed Culpo's experience with menstrual pain so severe that she would stay in bed all day, according to one of her recent Instagram posts. That reassurance gave her the push she needed to push for a diagnosis after several doctors dismissed her symptoms (which, according to the Mayo Clinic, for those who suffer from them can include painful periods, excessive bleeding, painful intercourse and infertility).

“I was made to feel like what I was feeling was wrong, which was equal parts discouraging and scary — but I always knew something was really wrong,” Culpo tells Shape. "The internet and social media honestly gave me so much comfort. Not only did I get validation that what I was feeling wasn't normal, but I also had the comfort of finally feeling like I wasn't alone and getting help. I will always be grateful for the community and support I've had from women who are strong enough to share their stories. It's given me the strength to advocate for myself."

Olivia Culpo on finding endometriosis resources online

I will always be grateful for the community and support I have discovered from women who are strong enough to share their stories. This gave me the strength to stand up for myself.

– Olivia Culpo on finding endometriosis resources online

However, medical information from the Internet is not a substitute for an actual medical assessment. Health misinformation spreads easily on social media platforms like TikTok, but Culpo raises an important point. Without the endometriosis community and social content surrounding the disease, she may never have found the tools or courage to continue advocating for her own diagnosis and treatment. And Culpo isn't the only person who has benefited from finding helpful endometriosis information and cultivating online communities.

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Find an endometriosis community

"[My friends] would talk about using two to three tampons per period, which absolutely blew me away because I almost went through an entire box," says Brittany Ferri, 30, an occupational therapist in Rochester, NY, who had symptoms for 15 years before being diagnosed with endometriosis gave me to stand up for myself more.”

Stories like Ferri's are a testament to the value of the endometriosis community - both on social media and IRL - in helping others advocate for themselves.

Take Maggie Tadros, 36, a publicist in New York, NY, who endured 20 years of misdiagnosis before seeing a social media post from a friend who also suffers from endometriosis. “So many of our symptoms were similar, and she had gotten the same answers (or lack thereof) from doctors as I had,” she explains. “‘It’s just bad periods, your scans are clean, it’s a normal part of being a woman.’ Talking to her made me realize that if I didn’t take care of my own health, no one would,” says Tadros, who eventually found a specialist who could diagnose her endometriosis.

“I was pushing for answers because she was posting, so I posted when I was back on my feet,” Tadros adds. "A few weeks later, a friend reached out to talk to her. She now has an [upcoming] appointment with a specialist. Without this network of women fighting for answers and supporting each other online, so many people would still be suffering, including me."

Maggie Tadros on building an endometriosis community online

Without this network of women fighting for answers and supporting each other online, so many people would still be suffering, including me.

– Maggie Tadros on building an endometriosis community online

Of course, not every endometriosis patient has been privy to this type of online discourse in the past. Meghan Maloof Berdellans, 31, a Miami-based real estate agent and associate director at The Endo Co, a nonprofit that aims to raise awareness of endometriosis and increase research funding for the condition, realized through conversations with friends. But because she had never heard of endometriosis, She didn't know where to look for information online. It took Maloof Berdellans 10 years to finally get a diagnosis, and now she's paying it forward by sharing endometriosis content to help others.

“Through my own experience in advocacy through social media, my friends and I have been able to help thousands of patients get the right diagnosis, care and treatment they deserve,” says Maloof Berdellans.

Reducing the stigma surrounding endometriosis

For too long, women's health issues, particularly those related to menstrual health, have been shrouded in shame. There is an unfortunate history of lack of access to and prioritization of education regarding menstruation and women's reproductive health due to social taboos and gender stereotypes, the United Nations points out.

When it comes to endometriosis specifically, researchers are only scratching the surface of how it impacts patients' mental health due to the stigma surrounding the condition. But if stories from Culpo and other women living with endometriosis are any indication, eliminating the stigma surrounding the disease is crucial to helping others understand their symptoms and advocate for a correct diagnosis.

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Danielle Payton, 32, a Miami-based publicist, first started experiencing symptoms when she got her period at age 8 (and wasn't diagnosed with endometriosis until 20 years later). She often shares endometriosis content on social media - although friends and family call her content TMI.

Payton says hearing celebrities like Culpo speak out about the disease is of great value to endometriosis sufferers. “I didn’t even know [endometriosis] was a thing until I was 28,” she says. “Fortunately, this life-changing disease is now receiving more and more attention.” Although there is no cure, there is a growing community of women coming together to deal with the disease. she remarks. "It's not made up, they/we aren't being dramatic. It's not in our heads," she says, nodding to the ignorance of her extreme menstrual pain and persistent bleeding from family members and medical professionals alike.

Finally a diagnosis

Endometriosis symptoms often begin around the time of puberty, but it takes years before they are recognized in the form of an official diagnosis, reports show. Black women have a particularly difficult time being diagnosed with endometriosis — not because they are less likely to develop endometriosis, but because social factors like implicit bias and institutional racism play a role, Shape previously reported.

"It's not uncommon for women to wait nearly a decade for a correct endometriosis diagnosis," says primary care physician Tracey Haas, DO, MPH, executive director of the Endometriosis Foundation of America. “There are many reasons for this,” including the normalization of painful periods as just one example, she says.

Another factor is that a patient does not realize that certain symptoms are cyclical and occur every month before or during a period and therefore does not report this to their doctor, thereby both missing the connection. For example, nausea, diarrhea, and constipation can be referred to as irritable bowel syndrome. Back pain and sciatica can be considered musculoskeletal problems.

Eventually, some people are told they have ovarian cysts and are put on birth control to prevent ovulation, adds Dr. Haas added. Ovarian cysts can occur in patients with endometriosis, but treating the cysts will not eliminate the underlying problem. “While this often helps with endo symptoms, it can also delay diagnosis.”

Tracey Hass, DO, MPH

It's not uncommon for women to wait nearly a decade for a correct endometriosis diagnosis.

— Tracey Hass, DO, MPH

Sharing stories and experiences about endometriosis has, according to Dr. Haas has real value. "When women talk openly about their pain, sadness, or embarrassing symptoms, [it] helps others see that they are not alone and it helps destigmatize the whole experience," she says. "It's powerful when women connect and realize together that severe pain is not normal. So many have been told that their symptoms are a normal part of being a woman, but endo pain is unique and not normal."

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Finding the best way to report these symptoms to a doctor will also increase your chances of receiving an accurate diagnosis and effective treatment. "If you're seeing a doctor about painful periods, it's important to bring a calendar that shows when in your menstrual cycle different symptoms occur," suggests Dr. hate before. These include back pain, nausea and diarrhea. "Make sure you include the severity of the pain and any measures that helped relieve the pain - from NSAIDs [non-steroidal anti-inflammatory drugs] to exercise," she says.

Ultimately, it's important to remember that only a doctor can determine whether someone has endometriosis. Social media alone (or, frankly, any authoritative online resource) cannot diagnose this or any other condition.

However, when advocates like Culpo, who is an ambassador for the Endometriosis Foundation of America, use their platform to help others better understand the physical and emotional impact of the disease, it can help more people overcome barriers to proper diagnosis and treatment. Culpo enjoys playing this role.

“I am so grateful to be able to share my experiences with endometriosis on my platform,” says Culpo. “Every message, comment, DM or text I receive from the middle of it all reminds me of where I once was.