Sitting in my office, a 16-year-old athlete appeared nervous. She came in because she had not yet had her first menstrual period, a situation that was far different from her mother, younger sister, and friends. Further testing identified that her reproductive hormone levels were normal. But an ultrasound revealed that she, like thousands of other children in the United States, was born without a uterus.
Often a taboo subject in the past, menstruation has increasingly become public. Recent media attention, for example, has focused on the affordability of and access to menstrual hygiene products for women with limited resources. Last year, new legislation in New York City guaranteed free menstrual hygiene products to New York City public school students, and women living in homeless shelters and jails. Meanwhile, on a subway train or at a bus stop, you may encounter an advertisement for “period-proof underwear.” And a quick search of your cell phone’s app store will reveal dozens of programs to help track your period.
This heightened awareness, however, must also come with encouragement for adolescents who unexpectedly do not menstruate to seek medical information about any potential conditions. Primary amenorrhea—the absence of the first menstrual cycle—can occur due to a wide array of disorders that range from minimally concerning to life-altering, and this single symptom can be the key to avoiding a delay in diagnosis that could cause physical and emotional harm.
Close attention to adolescent health, including the timing and tempo of puberty, enables identification of those falling outside the typical patterns, and the appropriate evaluation and treatment can be initiated in a timely fashion.
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Although it is a common perception that menarche (the first menstrual period) is occurring at younger and younger ages in the United States, the average age for menstruation in the country is between 12 years and 13 years, and this has been relatively stable for the past 30 years. Large studies of racially and ethnically diverse groups of girls in the United States have identified that the vast majority should have had their first period by age 15. Besides age, another useful marker is that most girls should have had their period within three years of the start of breast development.
In general, lack of menstruation by age 16 is far outside the normal pattern for the large majority of girls and warrants investigation.
For example, my patient’s diagnosis of Mayer-Rokitansky-Kuster-Hauser syndrome (MRKH), named after the four physicians who identified this congenital disorder, affects 1 in 5,000 children born with XX chromosomes. These individuals are typically born without a vagina and uterus, although their external anatomy is unchanged. This is one of the most common diagnoses for a girl who presents with absence of her first menstrual period by age 15 or 16. However, several other equally challenging diagnoses can also present in a similar fashion, including gonadal dysgenesis and primary ovarian insufficiency—both conditions in which the ovaries have limited-to-no hormonal function but for different reasons.
Adolescence is a time fraught with challenges related to family relationships, peer relationships, school performance, future aspirations, and sexuality. During these years of excitement and turmoil, being different than one’s peers can have detrimental psychological outcomes. As one can imagine, receiving any of these serious diagnoses as a teenager can be challenging on many different levels—physical, psychological, and interpersonal—and raise concerns regarding identity, and future reproduction. In my experience, questions from patients will arise, including how to define gender: Is it determined by genetic makeup, the presence of a uterus, the presence of functioning ovaries, or none of the above?
For this young woman, and for the many others in my practice with MRKH, our initial conversation began by focusing on what she has (ovaries, breasts, many other body parts) and then discussing what is missing. What has occurred is an unexplained variation of typical female development, and her gender is not dependent on this diagnosis.
I recommended psychological counseling for the adolescent (and her family) to help her better cope with this diagnosis. And if she wishes, modern medicine can help her to create a vagina to restore her anatomy and for future sexual activity. Additionally, she can become a mother to a biological child through gestational surrogacy or possibly, depending on the progress of current research, through uterine transplantation. She has ovaries and eggs, so with either process, she can have a child who shares her genetic makeup.
Our ability to recognize and care for these individuals helps us to better understand the deeper issues faced by adolescents with conditions affecting the reproductive system. And for adolescents, knowing where they fall, within norms or not, provides clarity. Menstruation matters, and lack of menstruation should raise a red flag for adolescents, parents, and providers to ask questions, demand answers, and take action.