Endometriosis in Adolescents: Early Signs and Treatment Options

Endometriosis is a condition that can significantly impact a young girl's quality of life, causing significant pain and affecting her physical and emotional well-being. Endometriosis has been reported to affect school, work, daily activities, exercise, and sleep.¹ As parents, it’s important to be aware of the signs and symptoms of endometriosis, especially as symptoms can develop before the first menstruation. A survey from the Endometriosis Association in 2003 reported that 66% of patients experienced symptoms starting before age 20 and 21% before age 15.²

This condition occurs when tissue similar to the lining inside the uterus (the endometrium) grows outside of it, often leading to severe pelvic pain and other distressing symptoms. While endometriosis is more commonly diagnosed in adult women, it’s increasingly recognized that puberty is when the inflammatory changes associated with endometriosis begin.

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7 Early Signs of Endometriosis in Adolescents

Here are six key signs to watch for:

1. Painful menses (periods). If a child is experiencing menstrual pain that seems more intense than normal menstrual cramps they may have endometriosis. It can sometimes be difficult to judge what is normal versus abnormal. Concerning signs are nausea, vomiting, diarrhea, and feeling bad enough to miss school or social activities.
2. Pelvic Pain: Pain occurring outside of the menstrual cycle may be more common in adolescents than menstrual pain alone. This pain can even begin before the start of menstruation.  A small study of 32 adolescents with endometriosis (diagnosed by surgery) found that only 9% of patients had menstrual pain alone, while 63% had both menstrual pain and non-menstrual pain.³
3. Painful Urination or Bowel Movements: If your child complains of pain during urination or bowel movements, especially around the time of menstruation, this could be a symptom of endometriosis. This pain is often mistaken for other conditions such as irritable bowel syndrome or bladder pain syndrome, but it’s important to consider endometriosis as a potential cause when these symptoms are paired with abnormally painful menstruation.
4. Pain During Physical Activities: Some adolescents with endometriosis experience pain during physical activities like exercise or even simple movements. This pain can sometimes be misinterpreted. If there is any association with menses, endometriosis should be a top consideration.
5. Chronic Fatigue: Endometriosis can cause significant fatigue, which might be evident outside of physical exertion. The body becomes exhausted by dealing with the pain associated with endometriosis and over time can lead to exhaustion. If your child is constantly tired and lacks energy, it could be related.
6. Digestive Issues: Digestive problems such as nausea, diarrhea, constipation, or bloating that occur frequently, especially around menstruation, can be linked to endometriosis. These symptoms are often mistaken for gastrointestinal issues but can be related to the inflammation caused by endometriosis lesions. Irritable Bowel Syndrome is the second most common diagnosis in patients who have endometriosis.
7. Abnormal Uterine Bleeding: Heavy periods are associated with endometriosis. If your daughter has both painful and heavy or excessively long periods they may have endometriosis.

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How Endometriosis is Treated

Once endometriosis is diagnosed, there are several options for treating the condition and associated pain:

• Nonsteroidal Anti-inflammatory Drugs (NSAIDs): Commonly prescribed to alleviate pain, especially during menstruation, to help manage chronic pelvic pain. Unfortunately, these over-the-counter medications are often not enough to combat the pain associated with endometriosis. In fact, the failure of NSAIDs to control pain symptoms is a red flag for endometriosis.
• Oral Contraceptive Pills: These combination medications (containing estrogen and progestin) are used to regulate the menstrual cycle, reduce the severity of symptoms by stabilizing estrogen levels, and ideally suppress ovulation and menstruation altogether.
• Gonadotropin-Releasing Hormone Medications: These medications temporarily reduce estrogen levels, which can halt the growth of endometriosis lesions and the inflammation associated with them. These strong medications, however, come with the potential for significant side effects. In our practice, these medications are last to be considered.
• Minimally Invasive Surgery: Laparoscopy, a procedure involving 3-4 small abdominal incisions, can be used to both confirm a diagnosis and to remove endometriosis lesions. Studies indicate that 88% of patients have pain improvement after laparoscopic excision of endometriosis.⁴ Recognition of subtle endometriosis lesions is more difficult in adolescents, and should ideally be done by an expert endometriosis surgeon. In the past, surgical diagnosis and treatment have been the last resort for adolescents. We believe that surgical diagnosis and treatment earlier in the course of the disease is better.
• Hormonal Therapies: In addition to oral contraceptives, other hormonal treatments might be recommended to control or reduce symptoms, depending on the individual case. These can include progestins alone or medications called aromatase inhibitors.
• Lifestyle Adjustments: There is some evidence that anti-inflammatory supplements can decrease symptoms from endometriosis,⁵ but they are usually not enough by themselves.  We encourage a low-inflammatory diet (much like a Mediterranean diet), regular exercise, and stress management.

The medical treatment that is best for your child will depend on their health history and the severity of the condition.

Risk Factors for Developing Endometriosis as an Adolescent

While the exact cause of endometriosis is still not agreed upon (and likely there is more than one way in which it occurs), certain factors have been shown to increase your child’s likelihood of developing the condition. Family history is the most significant risk factor—if you or someone in your family has endometriosis, your child is more likely to develop it as well. Studies indicate a 5-7 times higher risk if a 1st-degree relative has endometriosis.⁶

Early onset of menstruation, particularly before age 11, is another risk factor, as is having shorter menstrual cycles or longer, heavier periods.

Additionally, adolescents with certain immune system disorders or those who have had prior surgeries, such as ovarian cysts, can be at a higher risk for developing endometriosis.

Lastly, if a child is born with an abnormality of the reproductive organs there is a higher risk of developing endometriosis.⁷

Being aware of these risk factors can help you stay vigilant and seek early diagnosis and treatment if you suspect your child may be affected.

Why is Early and Accurate Diagnosis of Endometriosis Important?

Getting endometriosis diagnosed early can significantly improve the management of the condition, especially in adolescents. We believe that early treatment can radically alter the long-term consequences associated with years of untreated endometriosis. However, it can sometimes be challenging to diagnose endometriosis due to the overlap of symptoms with other conditions and the lack of awareness among general practitioners and pediatricians.

That's why it's important to work with a healthcare provider experienced in recognizing the subtle signs and ensuring that the diagnosis is accurate, leading to appropriate treatment and care.

Providing Compassionate Care For Endometriosis: The Center For Advanced Gynecology

Endometriosis is a challenging condition, especially for adolescents who are just beginning to navigate their reproductive health. As a parent, being informed about the early signs and treatment options can make a significant difference in your child’s life. If you believe your child might be suffering from endometriosis, it’s important to consult with a specialist who understands the unique needs of adolescent patients.

At The Center For Advanced Gynecology, we are committed to providing comprehensive care for adolescent endometriosis, offering both non-surgical and surgical treatments tailored to the needs of young patients. Our team of experts is here to support you and your child through every step of the diagnosis and treatment process.

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References

1. DiVasta AD, Vitonis AF, Laufer MR, Missmer SA. Spectrum of symptoms in women diagnosed with endometriosis during adolescence vs adulthood. American journal of obstetrics and gynecology. 2018 Mar 1;218(3):324-e1.
2. Ballweg ML. Big picture of endometriosis helps provide guidance on approach to teens: comparative historical data show endo starting younger, is more severe. J Pediatr Adolesc Gynecol. 2003 Jun;16(3 Suppl):S21-6. doi: 10.1016/s1083-3188(03)00063-9.
3. Singh SS, Gude K, Perdeaux E, Gattrell WT, Becker CM. Surgical Outcomes in Patients With Endometriosis: A Systematic Review. J Obstet Gynaecol Can. 2020 Jul;42(7):881-888.e11. doi: 10.1016/j.jogc.2019.08.004. Epub 2019 Nov 9.
4. Laufer MR, Goitein L, Bush M, Cramer DW, Emans SJ. Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. J Pediatr Adolesc Gynecol. 1997 Nov;10(4):199-202. doi: 10.1016/s1083-3188(97)70085-8..
5. Julio T, Fenerich BA, Halpern G, Carrera-Bastos P, Schor E, Kopelman A. The effects of oral nutritional supplements on endometriosis-related pain: A narrative review of clinical studies. J Gynecol Obstet Hum Reprod. 2024 Dec;53(10):102830. doi: 10.1016/j.jogoh.2024.102830. Epub 2024 Jul 26.
6. Hansen KA, Eyster KM. Genetics and genomics of endometriosis. Clin Obstet Gynecol. 2010 Jun;53(2):403-12. doi: 10.1097/GRF.0b013e3181db7ca1.
7. Bhamidipaty-Pelosi S, Kyei-Barffour I, Volpert M, O'Neill N, Grimshaw A, Eriksson L, Vash-Margita A, Pelosi E. Müllerian anomalies and endometriosis: associations and phenotypic variations. Reprod Biol Endocrinol. 2024 Dec 19;22(1):157. doi: 10.1186/s12958-024-01336-1.