Adolescent Endometriosis: Why It's Underdiagnosed and How You Can Advocate for Timely Diagnosis
Leah Hird • June 12, 2025

The earliest signs of endometriosis often present much earlier than adulthood.

Perhaps the most easily overlooked demographic of women affected by endometriosis is adolescent women. Painful periods are far too easily dismissed as a normal part of growing up, invariably leading to the mistaken and damaging belief that this terrible disease only affects adult women. However, research confirms the earliest signs of endometriosis often appear during adolescence. [1] 


Early detection efforts in young women have posed significant challenges though, largely due to a lack of education and limitations in Tier 1 diagnostic testing. Historically, medical providers have had to rely on laparoscopic surgery, a high-risk, invasive procedure that most are understandably reluctant to perform on young patients. 


The good news is that advancements in noninvasive technology have shifted this entire paradigm. Providers now have a Tier 1 diagnostic test that detects endometriosis at its earliest stages. This offers both adolescent women and their parents hope for a future no longer crippled by undiagnosed pain. 


Knowing how to identify the warning signs of endometriosis and how to advocate for a timely diagnosis can help you and your teen access the personalized care they deserve. 



Why Is Endometriosis Underdiagnosed in Adolescent Women? 


Endometriosis is underdiagnosed in adolescent women for a few key reasons. 


Lack of Education 


Many medical providers are unaware of how prevalent the disease is among this age group, believing it primarily affects adult women. Research shows this is not the case. For instance, a 2023 study examining the prevalence of adolescent endometriosis revealed symptoms were “notably high” in younger women: [1] 


  • Nearly two-thirds of adult women reported initial onset of symptoms before age 20. 
  • Twenty-one percent had significant pain before age 15. 
  • Surgically confirmed endometriosis was found in 62% of adolescents with pain, 75% with chronic pelvic pain resistant to treatment, and 70% with dysmenorrhea. 


This data is compelling evidence that the earliest signs of endometriosis often present much earlier than adulthood. However, unless medical providers are educated about adolescent prevalence, diagnostic delays will persist. 


Diagnostic Limitations 


Another reason why adolescent endometriosis is underdiagnosed is due to a historical lack of Tier 1 (low cost, easy to use, highly accurate, and noninvasive) rapid diagnostic tests for endometriosis. 


Prior to advancements in noninvasive technology, medical providers could only rely on laparoscopic surgery with histological confirmation to definitively diagnose endometriosis. Due to its invasive nature and high cost though, most medical providers understandably hesitated to perform this procedure on young patients. 


Furthermore, laparoscopic surgery is not without its limitations. Endometrial lesions can be difficult to identify even for the most experienced surgeon, especially if they are obscured, hidden deep within the anatomy, or outside the pelvic cavity. [4, 5] 


Alternative diagnostic methods such as a gynecological examination and transvaginal ultrasound can help providers make a clinical diagnosis, but these Tier 2 methods are often not appropriate for adolescents who are not yet sexually active, posing an additional barrier to early detection in young patients. [2] 


Marginalized, Ignored, and Silenced 


Adolescence is a significant developmental period, often characterized in society by high hormone levels and intense emotions. This can sometimes create an environment where adolescents feel unheard, dismissed, or ignored due to stigmas associated with their age group. In turn, they can feel helpless to advocate for themselves about legitimate health concerns, especially regarding the irrefutable symptoms they are experiencing.


As one study noted: 


“[A] social context that stigmatizes and dismisses menstrual health, inequitable gender norms, and a lack of endometriosis knowledge really affect adolescents' perception of symptoms and ability of asking for help.” [3] 


Adolescents may feel they must suffer in silence. The unfortunate reality is that the longer the delay, the more time the disease has to advance, significantly diminishing their quality of life. That is why it is important to raise awareness about the prevalence of endometriosis in this age group. 



Know the Warning Signs of Adolescent Endometriosis 


One way to raise awareness about adolescent endometriosis is by learning to recognize its well-documented warning signs. We covered common endometriosis symptoms in depth in our blog post, Understanding Endometriosis: A Detailed Look at Common Symptoms


Here is a quick summary: 


  • Pelvic pain (with or without periods) 
  • Painful periods (dysmenorrhea) 
  • Pain during sexual intercourse (dyspareunia) 
  • Heavy or irregular menstrual bleeding 
  • Painful urination during periods (dysuria) 
  • Painful bowel movements during periods (dyschezia) 
  • Lower back, buttock, or thigh pain 
  • Pain during ovulation 
  • General abdominal pain, bloating, and bowel habit changes 
  • Rectal bleeding 
  • Excessive fatigue 
  • Disruption of normal daily function and activities 


Additionally, a recent study noted: 


“Endometriosis may also debut with atypical symptoms such as genitourinary symptoms, nausea, dyschezia, painful bowel movements, constipation or diarrhea, pain during exercise, depression, anxiety, sleep disturbances during menses, migraines, or severe headache. These symptoms manifest earlier in life among adolescents with endometriosis and can debilitate, leading to school absenteeism, negatively affecting social relationships and significantly impairing their quality of life.” [2]

 

Knowing what to look for can help parents better advocate for adolescents and consult early with a medical professional. 



One Teen's Journey to Relief after Endometriosis Diagnosis 


The value of early detection of endometriosis can have a tremendous impact on the quality of life of young women. One 16-year-old in the United Kingdom shared with us how early detection restored her hope and quality of life. (We intentionally withheld her name to protect her privacy.) 


The young woman had been suffering from increasing pain and heavy bleeding during, and sometimes between, her periods. Previous treatments were ineffective, causing her to miss school and activities because her pain was so severe. Because her mother had been diagnosed with endometriosis (suggesting a family history of this condition), they sought out an endometriosis specialist, who recommended the ENDOSURE TEST


Here’s what the young woman had to say: 


“The gynecologist gave me some options, including laparoscopic surgery, but he didn’t advise it because I’m only 16-years-old. He also gave me the option of taking the 30-minute, painless ENDOSURE TEST. Because it was noninvasive, my mom and I were eager to try it, and I’m so glad I did. The test confirmed I have endometriosis. 


I’m grateful that I found out early because it means that now I am in control of my life. I was prescribed a new pill called Ryeqo, which has been life changing. Now, I only have moderate pain when I ovulate – nothing like it used to be." 


"I can play sports again, and I’m not missing school because of terrible pain and heavy periods.” 


Thanks to a positive ENDOSURE TEST result, this young woman’s doctor was able to prescribe a targeted treatment to which she positively responded, ending a long uncertain journey of ineffective treatments. 


A New Era of Diagnostic Testing 


Noninvasive testing such as the ENDOSURE TEST overcomes many of the limitations of traditional diagnostic approaches, like laparoscopic surgery. As the only truly Tier 1 diagnostic test, it empowers medical providers to detect the presence of endometriosis in patients of any age, at any disease stage, in any anatomical location without the need for surgery, and at a fraction of the cost.


This noninvasive tool enables adolescents to access timely and accurate diagnosis, effectively breaking the cycle of symptom normalization and dismissal. It provides a pathway for them to access the personalized treatments they deserve. 



How to Advocate for Timely Diagnosis 


Because adolescent endometriosis is still largely underrecognized, it is important to know how to advocate for timely diagnosis. 


For parents: trust your instincts. If your teenager is experiencing severe period pain, consult with a medical provider. Don't accept the inappropriate “normal period pain” answer if symptoms are debilitating; debilitating pain is not a normal part of growing up. Educate yourself and insist upon a Tier 1 test like the ENDOSURE TEST. Seek out a second opinion if you must, ideally from an endometriosis specialist. 


For teens: it's not “in your head” and you are not being dramatic. It's never normal to have severe period pain. Don't be afraid to speak up and talk openly with your parents or a trusted adult about the pain you are experiencing. 



Conclusion 


Adolescent endometriosis is highly prevalent. Increased awareness about its prevalence and knowing the signs to look for can empower parents and adolescents to advocate for a timely diagnosis and early intervention. 


Furthermore, advancements in technology – and now with the availability of a Tier 1 test to detect endometriosis noninvasively – have overcome traditional barriers to diagnosis and collaborative, targeted treatment so that no adolescent woman must continue suffering for years without knowing what is wrong. 


If you suspect your teenager has endometriosis, contact your medical provider and request the ENDOSURE TEST. They do not have to continue suffering. 


 

References: 


  1. Shim JY, Laufer MR, King CR, Lee TTM, Einarsson JI, Tyson N. Evaluation and Management of Endometriosis in the Adolescent. Obstet Gynecol. 2024 Jan 1;143(1):44-51. DOI: 10.1097/AOG.0000000000005448. Accessed June 9, 2025.  https://pubmed.ncbi.nlm.nih.gov/37944153/.

  2. Viscardi MF, Piacenti I, Musella A, Cacciamani L, Piccioni MG, Manganaro L, Muzii L, Porpora MG. Endometriosis in Adolescents: A Closer Look at the Pain Characteristics and Atypical Symptoms: A Prospective Cohort Study. J Clin Med. 2025 Feb 19;14(4):1392. DOI: 10.3390/jcm14041392. PMID: 40004922; PMCID: PMC11856142. Accessed June 9, 2025. ttps://pubmed.ncbi.nlm.nih.gov/40004922/.

  3. Lazzeri L, et al. How to Manage Endometriosis in Adolescence: The Endometriosis Treatment Italian Club Approach. Journal of Minimally Invasive Gynecology. 2023;30(8):616-626. Accessed June 9, 2025. https://www.jmig.org/article/S1553-4650(23)00117-6/fulltext.

  4. Pascoal E, Wessels JM, Aas-Eng MK, et al. Strengths and limitations of diagnostic tools for endometriosis and relevance in diagnostic test accuracy research. Ultrasound Obstet Gynecol. 2022;60(3):309-327. DOI:10.1002/uog.24892. Accessed June 9, 2025. https://pubmed.ncbi.nlm.nih.gov/35229963/.

  5. Simko S, Wright KN. The future of diagnostic laparoscopy - Cons. Reprod Fertil. 2022;3(2): R91-R95. Published 2022 Apr 20. DOI:10.1530/RAF-22-0007. Accessed June 9, 2025. https://pubmed.ncbi.nlm.nih.gov/35706581/.  

 


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