How Social Support — Both Online and IRL — Helps Those with Endometriosis Advocate for Their Health

Women, including celebrities such as Olivia Culpo, are speaking up about the importance of sharing their stories with often ignored symptoms.

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

The model and social media personality has been candid about how endometriosis, a painful condition characterized by tissue similar to the lining of the uterus growing 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 fight to be diagnosed with the notoriously missed condition. 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 validated Culpo's experience with period pain that was so severe it would keep her in bed all day, according to one of her recent Instagram posts. This affirmation gave her the push she needed to advocate for a diagnosis after multiple doctors dismissed her symptoms (which, for those who suffer, can include excruciating periods, excessive bleeding, pain with intercourse, and infertility, according to the Mayo Clinic).

"I was made to feel like what I was feeling was false, which was equal parts disheartening 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 verification that what I was feeling was not normal, but I also had the comfort of finally feeling like I wasn't alone and that I could get help. I'll always be thankful for the community and support I discovered through women strong enough to share their stories. It gave me the strength to advocate for myself."

I'll always be thankful for the community and support I discovered through women strong enough to share their stories. It gave me the strength to advocate for myself.

However, medical information sourced online is no replacement for an actual doctor's assessment. Health misinformation easily spreads on social media platforms, such as 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 benefitted from finding helpful endometriosis information and nurturing communities online.

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Finding an Endometriosis Community

"[My friends] would talk about using two to three tampons per period, which absolutely floored me since I was going through nearly an entire box," says Brittany Ferri, 30, an occupational therapist in Rochester, NY, who had symptoms for 15 years before getting an endometriosis diagnosis. "[That] prompted me to get online more and read about endo [and] what others with the condition were experiencing. Personal conversations led to online conversations that gave me the strength to advocate more for myself."

Stories like Ferri's are a testament to the value of the endometriosis community — both on social media and IRL — in helping other 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 has endometriosis. "So many of our symptoms were similar, and she had gotten the same answers (or lack thereof) from doctors that I had," she explains. "'It's just bad periods, your scans are clean, that's a normal part of being a woman.' I realized from talking to her that if I wasn't going to advocate for my own health, no one would," says Tadros, who eventually found a specialist who was able to diagnose her endometriosis.

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

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

Of course, not every endometriosis patient has historically been clued into this type of online discourse. Meghan Maloof Berdellans, 31, a Miami-based real estate broker and associate director at The Endo Co, a non-profit that aims to raise awareness for endometriosis and increase research funding for the condition, recognized something was off with her health through conversations with friends. But because she'd never even 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 in a bid to help others.

"Through my own experience in advocacy through social media, my friends and I have been able to help thousands of patients receive the proper diagnosis, care, and treatment that they deserve," says Maloof Berdellans.

Reducing the Stigma Surrounding Endometriosis

For too long, women's health issues, especially those that deal with menstrual health, have been shrouded in shame. There is an unfortunate history of a lack of access to and prioritization of education as it relates to menstruation and women's reproductive health due to social taboos and gender stereotypes, points out the United Nations.

When it comes to endometriosis specifically, researchers are only beginning to scratch 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, removing the stigma around the disease is crucial to helping others make sense of their symptoms and advocate for proper diagnosis.

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Danielle Payton, 32, a Miami-based publicist began experiencing symptoms when she started her period at age 8 (and wasn't diagnosed with endometriosis until 20 years later). She frequently shares endometriosis content on social media — despite friends and family members dubbing her content TMI.

There's huge value for endometriosis sufferers when celebrities such as Culpo speak out about the disease, according to Payton. "I didn't even know [endometriosis] was a thing until I was 28," she says. "Now, thankfully, this life-altering disease is getting more and more attention." While there's no cure, there is a growing community of women coming together to cope with the disease, she notes. "It is not made up, they/we are not being dramatic. It's not in our heads," she says, nodding to ignorance of her extreme menstrual pain and prolonged bleeding from family members and medical professionals alike.

Finally Getting a Diagnosis

Endometriosis symptoms often begin around the time of puberty but take years to be recognized in the form of an official diagnosis, show reports. Black women have an especially difficult time being diagnosed with endometriosis — not because they are less likely to get it, but because there are social factors, such as implicit bias and institutional racism at play, Shape previously reported.

"It's not uncommon for women to wait almost a decade for a correct diagnosis of endometriosis," says family physician Tracey Haas, D.O., M.P.H., 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 a patient not recognizing certain symptoms are cyclical, occurring before or during a period each month, and therefore not communicating this to their doctor, causing both to miss the connection. For instance, nausea, diarrhea, and constipation may be labeled as irritable bowel syndrome. Back pain and sciatica could be seen as musculoskeletal issues.

Finally, some people are told they have ovarian cysts and are placed on birth control to prevent ovulation, adds Dr. Haas. Ovarian cysts may occur in patients with endometriosis, but treating the cysts won't get rid of the real issue. "While this often helps with endo symptoms, it can also delay the diagnosis."

It is not uncommon for women to wait almost a decade for a correct diagnosis of endometriosis.

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

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Nailing down the best way to communicate these symptoms to a physician also boosts your odds of receiving an accurate diagnosis and effective treatment. "When seeing a doctor for painful periods, it is important to bring a calendar to show when in your menstrual cycle various symptoms are happening," suggests Dr. Hass. That includes back pain, nausea, and diarrhea. "Be sure to include the severity of pain and any measures taken that helped to alleviate pain — from NSAIDS [non-steroidal anti-inflammatory drugs] to exercise," she says.

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

Still, when advocates such as Culpo, who is an ambassador for the Endometriosis Foundation of America, use their platform to help others better understand the physical and emotional effects of the disease, it can help more people push through barriers to proper diagnosis and management. This a role Culpo is happy to play.

"I'm so grateful to be able to share my experience with endometriosis on my platform," says Culpo. "Every message, comment, DM, or text that I receive from people in the thick of it reminds me of where I once was. It's a privilege to pay forward the support I got when I needed answers the most."