How Common is Endometriosis in Teens?

While determining the prevalence of endometriosis in teens is difficult, research indicates it’s far more common than previously believed.   A study published in the Journal of Pediatric and Adolescent Gynecology focusing specifically on teens with chronic pelvic pain or severe menstrual cramps (endometriosis symptoms) determined 64% who had a laparoscopy were ultimately diagnosed with endometriosis.  An additional finding was that 13% of those diagnosed with endometriosis were at the most severe stage 4, which can mean deep lesions and scar tissue extending beyond the reproductive organs and affecting the bladder, bowel, and rectum causing significant pain during urination and bowel movements.

However not all teens with endometriosis will have severe symptoms or undergo laparoscopy and thus the disease often goes undiagnosed making the true prevalence difficult to establish. As many as 90% of teenagers and young adults experiencing intense menstrual discomfort often receiving pain medication prescriptions, while only a minority are directed to specialists.  With respect to all teens in the U.S., experts estimate that more than 11% of teens aged 15+ have endometriosis.

While young girls under the age of 15 and as young as 8 years old are afflicted, there simply is insufficient research on the true numbers. While the extent of endometriosis prevalence among teenagers remains unclear, it’s evident that early diagnosis could significantly improve outcomes and alter the course for adolescents grappling with chronic pain. 

While the growing accessibility of MRI and ultrasound scans proves beneficial in eliminating other potential causes of pelvic pain, it’s important to recognize that these imaging techniques often fail to detect endometriosis lesions, potentially leading to further delays in diagnosis.

Premenarchal Endometriosis in Teens: (girls endometriosis before menstruation)

Premenarchal endometriosis is a rare condition where endometrial-like tissue is found on outside the uterus in the pelvic cavity, in a young girl who hasn’t yet begun menstruating (menarche). Premenarchal endometriosis is theorized to be embryonic in its development, right along with the early embryo stage formation of the fallopian tubes, uterus, and cervix. 

Some girls may have a genetic predisposition for endometriosis to be triggered entirely independent of menstruation.  This would be consistent with the genetic theory of endometriosis that suggests that certain genetic variations or mutations might increase a woman’s susceptibility to developing the condition. The theory proposes that some women inherit genes that could influence how the body responds to hormones, regulates cell growth, or manages the immune system, all of which might play a role in endometriosis development. Research has demonstrated a seven-fold increased risk of endometriosis in mothers and sisters of patients with endometriosis. In a 2019 review, over twenty genes were identified in various studies as potentially linked to endometriosis; nevertheless, no specific gene responsible for causing the disease has been isolated.

Diagnosing premenarchal endometriosis is difficult because symptoms in premenstrual girls can be vague and easily confused with other conditions, such as constipation, urinary tract infections, or appendicitis. Laparoscopy (a minimally invasive surgery) is the gold standard for diagnosis but is rarely performed on very young girls unless there’s strong suspicion.  While rare, it’s important to be aware of premenarchal endometriosis. If a young girl experiences persistent pelvic pain or other concerning symptoms, even before her first period, endometriosis should be considered as a potential cause. 

Risk Factors for Endometriosis in Teens 

There are factors that can put certain teens at higher risk of developing endometriosis and knowing these factors, along with the signs or  symptoms of endometriosis, can help in determining if  a teen should be diagnosed sooner so that effective treatment can begin. 

“There is an association between endometriosis in adolescent and young women and risk factors including early menarche (the first occurrence of menstruation), early onset of dysmenorrhea (period pain), history of asthma, previous surgical procedures, obstructive genital anomalies, and family history of endometriosis. – Journal of Pediatric and Adolescent Gynecology

Though medical science is still not clear on why endometriosis happens, there is evidence that it runs in families. Research has indicated a seven-fold increased risk of endometriosis in mothers and sisters of patients with endometriosis and it is therefore assumed that daughters of patients with endometriosis have a similar risk of developing the disease.  Also, and as noted earlier a  2019 scientific review  listed dozens of genes linked to endometriosis – but not conclusively causing endometriosis.  

However, if a teenager’s mother, aunt, or sister has endometriosis, her likelihood of developing the condition is also increased. There’s also research that has determined teens who started their periods very early in age, who have a low body mass index, or who have an autoimmune disease are at higher risk of having endometriosis.  The prevailing belief is that lower weight and body mass index could potentially exacerbate genetic predisposition, leading to the onset of endometriosis. It’s also worth noting there’s data on female reproductive traits suggesting genetic variants that predispose to a more frequent exposure to menstruation (due to the first occurrence of menstruation at an earlier age and shorter menstrual cycles) might also increase the risk of triggering endometriosis. – Source.  Lastly there is also a study noting that with a healthy immune system, immune cells would normally identify and clear (destroy) endometrial-like tissue growing outside the uterus. However in cases of endometriosis, this clearance mechanism seems to not be working properly thereby allowing the endometrial-like tissue to survive and thrive.

Endometriosis in Teens: Missed & Delayed Diagnosis

Endometriosis is a notoriously missed and delayed diagnosis and women who first learned of their having the disease in their 20s and 30s may have developed the disease as teens where it was initially misdiagnosed. Be it due to incomplete medical history, symptom overlap, lack of familiarity, or a combination of all three, endometriosis is commonly popularly considered to be a missed or “invisible disease.”

“Endometriosis represents a rich example of the active production of ignorance due to its long-standing invisibility in biomedical, political and social contexts.” – NIH / Reproductive Biomedicine Online

Regrettably, it’s a frequent occurrence for teenagers experiencing severe period cramps or pelvic pain to have their symptoms disregarded as “typical,” resulting in widespread underdiagnosis of endometriosis. Many adult patients were unaware they had endometriosis until they tried to get pregnant and ran into fertility issues. Yet it’s common for these same women to report that their symptoms started when they were teens. Since teens aren’t typically trying to get pregnant and their cycles are still relatively new to them, it can be difficult for them to know if they’re coping with something beyond normal period pains. Thus, if a teen is experiencing significant period pain that prevents her from going to school or engaging in her usual activities and has any of the aforementioned risk factors, endometriosis must be considered. Endometriosis appears to be a relatively common problem with teens, especially among those with chronic pelvic pain or severe menstrual cramps.  Recognizing this fosters a proactive mindset when a teenager encounters these symptoms, facilitating earlier diagnosis, intervention, and potentially mitigating long-term complications.

Signs & Symptoms of Endometriosis in Teens

Endometriosis can be particularly difficult to diagnose in teens because symptoms are often “normalized” and dismissed as routine period problems, leading to a delay in seeking treatment. Early education and awareness are important since endometriosis commonly starts manifesting in girls younger than 15.  The data is sparse but there is research from over 25 years ago indicating 38% of women with endometriosis experienced their first symptoms of pelvic pain before age 15.

Teenagers should understand that symptoms could be notably more intense than regular menstrual discomfort, and if their period pain feels overwhelming to them, it warrants attention. Teens might experience heavy periods, intense and persistent cramping (that’s unresponsive to over-the-counter pain medication) or pain during urination and bowel movements, especially during their periods. Early identification of symptoms is the first step in medical intervention, thereby preventing progression and alleviating the severity of the painful symptoms.

Some of the most common symptoms of endometriosis in teens are:

• Painful periods (dysmenorrhea): This is the most common symptom.  Cramping and pain may be significantly worse than typical period discomfort (or in comparison to their peers) and might not improve with over-the-counter pain relievers. Pain can start a few days before the period and continue throughout it. 
• Pelvic pain: Pain in the lower abdomen, pelvis, and back is common, even when the teen is not on her period. 
• Pain with bowel movements and/or urination: Endometriosis can cause pain during bowel movements, as well as frequent or painful urination, particularly during periods.
• Gastrointestinal issues:  Teens with endometriosis might experience bloating, constipation, diarrhea, nausea and vomiting, especially around their period. They may be diagnosed with Irritable Bowel Syndrome, even if symptoms mainly occur with their menstrual cycle
• Pain during sex (dyspareunia):  If a teen is sexually active, they may experience pain during or after intercourse.
• Fatigue: Chronic pain and inflammation associated with endometriosis can lead to overall fatigue and low energy levels.

Early Endometriosis Diagnosis for Teens 

It is important to be cognizant that the longer endometriosis remains undiagnosed and untreated, the greater the negative impact to the teenagers’ quality of life, and even future fertility. For this reason it is prudent to err on the side of caution if a teen has a number of symptoms of endometriosis.

Diagnosing endometriosis in teens is fraught with challenges as symptoms are nonspecific and overlap with numerous gynecologic, urologic, and gastrointestinal issues resulting in long diagnostic delays. Advocating for oneself or one’s child is crucial, and seeking a second opinion from a healthcare provider familiar with endometriosis, especially with teens, can be a critical step towards getting the right treatment. There is a delay of 4-11 years from first onset of endometriosis symptoms to surgical diagnosis.  While healthcare providers in general have traditionally fallen short in addressing endometriosis, reasons for delays can also be attributed to patient-related factors such as uncertainty about distinguishing normal from abnormal symptoms, feelings of embarrassment, stigma, and a tendency to tolerate discomfort.

Managing Endometriosis Symptoms as a Teen

It is crucial to give weight to teens’ symptoms and remember that there isn’t a straightforward or “simple” test for diagnosing endometriosis, as the gold standard does require a surgery (laparoscopy).  However, management of endometriosis symptoms can often bring significant improvement in quality-of-life and may require a multidisciplinary approach including pain and stress management strategies, hormonal options, diet modifications, and lifestyle modifications. The Endometriosis Association  offers invaluable emotional and educational support groups and resources specifically tailored for teens coping with endometriosis.

Another good starting point for many teenagers is learning to keep track of their menstrual cycle: Learn How To Track Your Menstrual Cycle Without and App (Planned Parenthood).  This can be helpful with not only tracking regularity of cycles, but also other symptoms associated with their periods. Since teens are active with their phones, here are 2 articles on popular apps helpful to teens in tracking their periods. 

• The Best Period Tracking Apps for Young Girls 
• Top 5 Best Period Trackers for Teenager Girl

If a teenager’s period is interfering with the ability to carry on with the normal life (eg, missing school, cancelling social events, etc), this is a red flag that should be shared with a healthcare provider.  Diagnosing and treating endometriosis can pose significant challenges, particularly in teens. However, by adopting methods such as period and symptom tracking, teens displaying symptoms of endometriosis may attain an earlier diagnosis, offering hope for complete recovery and preserved fertility in the future.

If you know of a teenager whose quality of life is suffering due to painful periods, please contact Dr. Liu for a consultation. Dr. Liu has operated on many teenagers (ranging from 14 to 18 years old), all of whom had failed conservative management. Dr. Liu regards operating on teens with the utmost seriousness and care. Every single teenager that has been operated on by Dr. Liu for suspected endometriosis, has had pathology-proven endometriosis.

Dr. Liu is a high-volume laparoscopic endometriosis excision surgeon, performing 15-20 surgeries a month. Please refer to a case study of a 15 year old patient, who underwent surgery with Dr. Liu.