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It can start with a sharp, stabbing pain in the abdomen — the kind that sends a teenager doubling over or missing school for days.
Friends, teachers and sometimes even doctors may dismiss it as normal period pain.
But for millions of women, those symptoms can signal endometriosis, a chronic disease affecting about one in 10 women worldwide that often goes undiagnosed for years.
A Portola Valley teenager is trying to change that.
Quincy Harding, 17, began talking about endometriosis on TikTok and Instagram, connecting with girls her age and young women. She said one of her goals is to translate complex medical information into language that teenagers can easily understand.
“A lot of the information, when you just Google it, is really difficult to digest because it can be very advanced medical terminology and frankly can be quite intimidating,” she said, adding that her message has reached more than 100,000 people across the Bay Area and beyond.
March is Endometriosis Awareness Month, highlighting a disease that occurs when tissue similar to the uterine lining grows outside the uterus, causing inflammation, scarring and severe pain.
Dr. Camran Nezhat, a Redwood City–based endometriosis specialist and pioneer in minimally invasive surgery, said the condition can be difficult to diagnose because its symptoms often mimic other illnesses.
“Endometriosis is a chronic and often painful disease in which tissue similar to the lining of the uterus grows outside the uterus,” Nezhat said. “Its symptoms can mimic many other conditions and vary widely from patient to patient.”
Because the disease can affect multiple organs, including the ovaries, bowel and bladder, patients are sometimes misdiagnosed with gastrointestinal, urinary or musculoskeletal conditions before the underlying cause is recognized.
Nezhat often refers to endometriosis as “the great masquerader.”
As a result, many patients wait years before receiving an accurate diagnosis.
“Symptoms such as painful periods are often normalized or dismissed, particularly in young women and adolescents,” he said. “Patients are often referred between different specialists before the underlying cause is recognized.”
The World Health Organization estimates that endometriosis is one of the most common gynecological conditions, affecting millions of women and girls worldwide.
Advocacy groups estimate that patients often spend seven to 11 years seeking answers before the disease is identified.
Specialists say part of the delay stems from the way symptoms are often dismissed, particularly among adolescents whose pain is frequently attributed to normal menstrual cycles.
Harding said that lack of awareness, particularly among teenagers, is one of the biggest barriers to diagnosis.
“There’s so much stigma around menstruation and periods, and specifically period pain,” Harding said. “Women are often deemed to have lower pain tolerances, so there can be hesitation to speak up about symptoms.”
Through her social media accounts, called Endo with Quincy, Harding posts short videos explaining symptoms, reproductive health conditions and how young women can advocate for themselves when seeking medical care.
“In order to raise awareness, I need to be meeting teenagers where they’re at,” Harding said. “When a girl my age is scrolling on her ‘For You’ page and sees one of my videos, she might think, ‘Wow, I’m having symptoms like that.’”
Harding’s advocacy grew out of her own experience navigating the disease. After years of debilitating symptoms, she was eventually diagnosed with Stage 4 endometriosis, one of the most severe forms of the condition.
She later connected with Nezhat, whose work in minimally invasive gynecologic surgery helped establish modern laparoscopic techniques for diagnosing and treating the disease.
Today, Harding works with Nezhat’s team and has contributed to clinical research examining diagnostic tools and surgical findings related to endometriosis.
She is listed as a co-author on two studies published in the Journal of Clinical Medicine that focus on improving early disease identification.
Later this month, Harding will present her research and advocacy work at the American and Global Conference of Endometriosis Surgeons in Las Vegas, where physicians and researchers gather to discuss advances in treatment.
Nezhat said early recognition and treatment are extremely important because endometriosis is often a progressive disease.
If left untreated, it can lead to worsening pain, infertility, organ damage, and significant impacts on quality of life, he said.
Harding said she hopes her work will help increase awareness, especially among young women, and help others avoid years of uncertainty.
Referencing what Nezhat told her when she told him about her symptoms, Quincy said, “‘Your pain is not in your head.’”
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