Inside the endometriosis communities forced to meet online after being dismissed by their doctors

By Hannah Turner

Published Mar 21, 2022 at 03:51 PM

Reading time: 3 minutes

March is Endometriosis Awareness Month, and although those month-long observances can seem redundant—clearly, with people suffering from the condition all year round—it represents a key opportunity for the chronic illness community at large to spread awareness about the lack of knowledge and support surrounding endometriosis.

Endometriosis is a full-body chronic inflammatory condition where tissue similar to (but not the same as) the lining of the womb grows outside of the uterus. It can cause a myriad of symptoms including chronic pain, agony when menstruating, irritable bowel syndrome (IBS)-like symptoms and even infertility. Though it has previously been categorised as a ‘women’s health issue’, it is currently known to affect one in ten people with internal reproductive organs—with the condition disturbing much more than just reproduction. Impacting sufferers who are trans, intersex and non-binary, with rare cases of cis male sufferers too. However, both on and offline, conversations around endometriosis continue to centre fertility as the main reasoning and problem to be solved by doctors—getting no closer to a proven cure or long-term treatment plan for most sufferers.

Making blanket statements about social media is to misunderstand its diversity. There are pockets for just about everything on the internet, and the chronic illness community is no different. TikTok, Instagram and YouTube are home to a wide range of people with endometriosis creating content and connecting with each other over often traumatic incidents with medical professionals—ranging from years-long waiting lists and dismissal of symptoms to medical gaslighting—as well as actual experts in the field taking the time to spread the right information.

Sam, a 22-year-old living with stage four endometriosis, creates content on both Instagram and TikTok to spread information on how she’s managing to live with the chronic illness. She told SCREENSHOT, “I felt incredibly isolated and alone, and since finding the community online, I don’t feel that way anymore.” Sam believes this is what makes the endometriosis community so important. “It gives space for people to come to when they need support and understanding, especially with endo as the severity of the disease and the impact it has on our lives is so hard for people to understand when they don’t have it themselves.”

However, in spite of the rising advocacy sufferers do in such spaces, there are still ill-informed doctors and sometimes other sufferers, perpetuating misinformation that can generate more harm than good. At times, it can even feel impossible to differentiate the right information from the wrong, particularly when you have medical professionals in scrubs (complete with stethoscopes around their necks) telling the TikTok public that endometriosis is exclusively hormonal. News flash: it’s not.

As an information creator, Sam said that it’s often difficult to know what the right thing to do is, given how the pool of posts from other influencers is often conflicting. “I don’t fully blame them, as so much misinformation is out there, even from ‘credible’ sources, and it is so challenging to navigate the internet and decipher correct information as a result,” she explained. “The spread of incorrect information is so dangerous, and holds the community back from progressing.”

There is also a burden placed on creators who make content around the disease they live with. Trauma dumping, online trolling and emotional distress can all be consequences for creators who, despite the billion-dollar influencer economy, are largely not financially compensated for—especially not to the degree of other lifestyle creators.

Some whose day job is to diagnose, operate, and treat patients with illnesses including endometriosis will warn patients away from using ‘doctor Google’, however, there are many who have no choice. Track records for people misdiagnosing themselves are, of course, common but so are the ever-worrying stories surfacing of individuals whose doctors have ignored their complaints to later find themselves in life-threatening danger.

Ciska, 24 and living with endometriosis, explained it took years before her doctors directed her to the condition despite her already suspecting that it was the cause of her symptoms: “Everything I know about endo and the way that I manage it has come from creators online. It meant that I felt empowered when I went to the doctor and recognised when I was being dismissed—I knew exactly what to fight for when it came to treatment and surgery.” 

The current average time it takes to receive an official endometriosis diagnosis in the UK is eight years, with most people developing symptoms during their adolescence and who will often be in their mid-twenties before they hear the word ‘endometriosis’ from a doctor’s mouth.

Alongside doctors not taking your complaints seriously, there is no simple non-invasive test or procedure to diagnose the condition. Ultrasounds and transvaginal scans are often used despite their inaccuracy, often missing tissue in other areas, which again, leads to a dismissal of symptoms from professionals. It is only when a person is cut open for laparoscopic surgery—a surgical procedure that allows a surgeon to access the inside of the abdomen and pelvis—that camera images show exactly where endometrial tissue is growing.

Instead of dismissing patients who use the internet to inform themselves, we have to ask ourselves why that is even necessary in the first place? If people in chronic pain were believed from the moment they came in contact with medical institutions, perhaps they wouldn’t be so reliant on seeking help elsewhere, aka scrolling on TikTok.

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