‘I wasn’t officially diagnosed’: Women with endometriosis are posting about poor medical care online. Will doctors finally start listening?
April Christina knows all too well what it’s like to be dismissed.
After suffering from years of unresolved pain and other chronic symptoms, she was diagnosed with stage 4 endometriosis. It’s a reproductive condition where uterine lining tissue grows outside the uterus and affects nearby organs.
For over a decade, April Christina had to live her day-to-day life in constant pain and suffering from heavy periods.
“I wasn’t officially diagnosed until my late 20s,” she told the Daily Dot in an interview. “I started my menstrual cycle at just nine years old, and from that point forward, I struggled with symptoms that were often dismissed or misunderstood.”
With how progressive endometriosis is, it can go undiagnosed and misdiagnosed for four to 11 years. This is mainly due to doctors dismissing the woman’s pain as “normal” and often prescribing them medications like birth control and ibuprofen.
Endometriosis online
After her second laparoscopic surgery, April Christina decided to dedicate her online platform to bringing awareness to endometriosis. With over 7,000 followers on Instagram and 1,000 followers on Facebook (@imaprilchristina), she documents her stories of isolation and depression, as well as the pain that she endured from the condition.
April Christina advocates for those with the same condition, educates those unfamiliar with it, and forms a community, specifically for women of color. Not only that, but April Christina believes that if more women come out to share their stories online, it’ll inspire the next generation of females to reach out for help regarding their reproductive health.
“Sharing my experiences online became both an outlet and a form of self-therapy, a way to process my feelings while building a sense of community,” April Christina states. “By opening up about my experiences, I hope to inspire confidence in others to seek help, advocate for themselves, and pay closer attention to their bodies.”
And a new report suggests that April Christina’s mission may influence reproductive healthcare at the source.
Can posting about endometriosis online lead to better healthcare?
A 2024 Journal of Minimally Invasive Gynecology study found that physicians studying patients’ social media posts could improve endometriosis healthcare.
Based on an analysis of 34,715 posts and 353,162 comments on Reddit, 49% of online users were seeking information about endometriosis, with the other 29% seeking to learn more about others’ experiences. The endometriosis community consists of women showcasing their journeys online through raw footage of surgery, display of their symptoms, and advocating for patient awareness.
The machine learning analysis of these posts offers proof to healthcare professionals that more empathy is needed in the clinical care of endometriosis.
Despite social media platforms providing a voice for those to share their stories online, many people still suffer for years trying to find a diagnosis for their pain.
Why does endometriosis often get ignored?
Dr. Malgorzata Skaznik-Wikiel, a reproductive endocrinologist, clarified the many reasons why endometriosis tends to be misdiagnosed, ranging from a lack of awareness to the difficulty of pinning down the issue.
“Symptoms overlap with other conditions, such as pelvic inflammatory disease or urinary tract infections. Because of these overlaps, endometriosis is often mistaken for other conditions, leading to misdiagnosis or delays in treatment,” she told the Daily Dot.
Pregnancy, hysterectomies, and severe periods are all used to dismiss patients’ experiences with endometriosis. Telling a woman in unbearable pain that “it’s all in their head” or that the answer is a simple change in diet feeds into the environment of isolation. Those who can address the issue with a hysterectomy can still suffer from symptoms of endometriosis.
Even with the recommended resources, endometriosis is a lifelong battle that shows no sign of slowing down, especially for those who are of menopause age.
Fertility coach Connie Stark has witnessed this frustration numerous times from her patients.
While working at Fertility Out Loud, she guided women on separating themselves from the myths associated with endometriosis by providing them with reliable resources. That way, they can make appropriate decisions regarding their reproductive health.
“While progress in raising awareness and early detection among HCPs is improving, systemic gaps still exist,” Stark told the Daily Dot. “That’s why having open, informed conversations with healthcare providers and advocating for oneself is so important. Women deserve to know that their symptoms are real, valid, and worth taking seriously.”
For endometriosis patients, hope is still on the horizon.
In a world where the condition affects 1 in 10 women, the dire need for research and medical attention is necessary.
”More research is critical to improving diagnosis, expanding treatment options, and uncovering the condition’s root causes,” Stark said. “Advancing research could lead to earlier detection, better treatments, and, ultimately, a cure, which is my vision.”
Until efforts are made, women are using social media to create a safe space. Dr. Skaznik-Wikiel praises social media for increasing visibility on endometriosis and acknowledging that the condition should be given the same attention as other conditions.
“As more women share their personal experiences and educate others on the condition, it can help reduce the stigma and raise awareness about the importance of seeking medical care,” Dr. Skaznik-Wikiel said. “Social media has already played a pivotal role in creating supportive networks where women can find not only information but also emotional validation.”
For April Christina, her goal as a creator was to create a space where everyone would feel comfortable displaying their vulnerability. As she works toward more inclusivity and informative research within the endometriosis community, she’ll keep hitting post.
“Whenever I come across resources or insights, I feel compelled to share them in hopes of helping others navigate their journeys and overcome obstacles,” April Christina said. “Living with endometriosis means embracing the good days while preparing for the possibility of challenges and having access to trusted resources makes all the difference.”
Update 12:55pm ET, May 6: A previous version of this article incorrectly stated that April Christina was one of Stark’s patients.
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