A new study has uncovered the prevalence of undiagnosed endometriosis in young girls and its devastating impact.
Endometriosis is a chronic disease where tissue that is similar to the lining of the uterus grows outside of the organ. Symptoms are extensive and can be debilitating, including painful menstrual cycles that can last for weeks.
According to the World Health Organization, endometriosis affects nearly 10% of reproductive-age women and girls globally.
But the study, authored by researchers at Arizona State University, found that many young women — some as young as 8 years old — suffer for years before they are properly diagnosed and treated.
Because of their younger age, their symptoms are often dismissed — delaying treatment and compounding physical and emotional suffering.
“They (participants in the study) often referred to … how hard it was to navigate endometriosis not knowing what to do and not having a formal diagnosis to explain why they were feeling the way they felt,” said Ana Karenina Paredes, a former ASU graduate student who was a co-author on the study.
Paredes struggled with endometriosis as a young girl and advocated for a better understanding of the disease in Brazil before coming to ASU. Her efforts led to the creation of the National Day for Endometriosis Awareness back home.
Perla Vargas, associate professor of psychology in the School of Social and Behavioral Sciences at ASU’s New College of Interdisciplinary Arts and Sciences, was the senior author of the study.
“(The participants) told us of their struggle with … the lack of support and empathy while coping with this ‘invisible’ disease,” Vargas said. “Their young age at the time of symptom onset and the cultural taboos around female sexual health negatively impacted their lives and clinical experience.”
ASU News spoke with Paredes about the study’s findings and her ongoing advocacy to raise awareness of the physical and psychological consequences that delayed endometriosis can have on young people.
Editor’s note: The following interview has been edited for length and/or clarity.
Question: The study is titled “I Wish I Had Known.” What is that referencing?
Answer: Our study explored the lived experience of people that started having endometriosis symptoms at an early age. They talked about the struggles of managing the disease as teenagers and young adults, and the impact it had on their daily lives.
Our interview questions prompted them to reflect on what they would have liked to know at the time their symptoms started that would make their life easier and symptoms more manageable. They told us many stories of things they wish they had known, the barriers they face when trying to get diagnosis and treatment, and the challenge of getting reliable information on the disease.
Q: What findings came out of your research?
A: Several themes emerged from the study.
One was related to the challenging journey they go through when seeking help for their symptoms. They described their search for a “champion” — someone that would listen to their pain and believe them. Someone that could explain what was happening and find ways to treat them.
They reported seeing multiple doctors before finding the champion. They stated the challenge of being believed specifically because of their age. Some of them are still searching for a doctor that will listen.
Another theme was related to taboos and body politics. Because of their lack of formal knowledge about their bodies at a young age and not understanding what is considered normal or abnormal in menstruation they could not be on the lookout for possible symptoms. They discussed how menstrual pain was portrayed as part of “being a woman” and a topic you shouldn’t be talking about … and the struggles of advocating for themselves at a young age and having to convince parents, school staff and doctors that they were really struggling.
The third theme was the impact of endometriosis on well-being. They described missing teenage years and life experiences. They discussed feeling isolated, misunderstood and disbelieved by family and friends.
The last theme emerged from the discussion on empowerment, education and support needed. Participants discussed what would have helped them to navigate endometriosis at the age their symptoms started: education, opening spaces to talk about menstrual health and symptoms, accommodations and improvements on health care that would make diagnosis and treatment more accessible.
Q: You used the term “gaslighting” in the study. How does that word apply to the experience of young girls?
A: The term “gaslighting” was used by some participants to describe their experiences with the health care system, school and work environment. Many felt that no one believed their pain at such a young age. It would take them many years to understand that what they were feeling was not normal. Some were sent to the psychiatrist or psychologist as if their symptoms were psychosomatic.
Q: Why were the young girls’ expressions of pain dismissed?
A: The reasons for them being dismissed are multifaceted. Endometriosis etiology is still unknown. As of right now, endometriosis is mostly understood as a reproductive disease even though it can affect multiple organs in the body. Many doctors struggle to comprehend how someone at the beginning of reproductive years could be dealing with such intense symptoms. They try to find other explanations for their pain and other symptoms. It is very common for younger girls to be misdiagnosed.
Additionally, the only way to have a final diagnosis is through surgery and biopsy, which creates another barrier for teenagers. Standard imaging tests like ultrasound rarely detect endometriosis, a limitation that is not widely understood among health care providers. Thus, many providers overlook or minimize patients’ pain when nothing is detected by the scan.
Furthermore … some providers don’t feel comfortable discussing menstruation or reproductive issues with teenagers. We also see that happening in school and in some families.
Q: How can the study keep young girls from suffering unnecessarily because of a delayed diagnosis of endometriosis?
A: Even though this is just a preliminary study and has its limitations, I hope it helps bring attention to the silent suffering that so many young girls with endometriosis go through — and how much it can affect their lives later if they don’t get help early.
If health care providers reading this can start by listening to the younger patients, taking their pain seriously, looking deeper into the causes and referring them to a specialist when answers aren’t clear, that alone could make a big difference in reducing the suffering and delays they face today.