Expert Advice

Could Your Tween Or Teen Have Endometriosis? An OB-GYN Explains

How to know so you can support and advocate for your kid every step of the way.

Tweens and teens can get endometriosis, which often manifests as cyclic pain.
Dobrila Vignjevic/Getty Images

As you and your child navigate the first period years, you undoubtedly want to support them through a time filled with changes, questions, and uncertainty. And while you may have an idea of what to expect based on your own experiences, you might have some questions about your kid's menstrual cycle and if what they're experiencing is "normal."

Case in point: If your tween/teen has heavy, painful periods, is it possible that they could have endometriosis? What's normal and what isn't when it comes to their flow and symptoms each month?

Fear not, because an OB-GYN is here to help you know what to look out for and when to check in with your child's doctor.

Endo 101: What To Know

Much like reproductive health in general, endometriosis frequently goes under- or misdiagnosed, with some patients — especially those in marginalized communities — receiving a lack of adequate care for years as they continue to suffer in silence without answers. That's because gynecological concerns are often under-researched and underfunded at every level, with nothing but the patriarchy to blame.

It's understandable if you're not quite sure whether your kiddo's symptoms are caused by endometriosis. A quick refresher: Endometriosis occurs when the lining of the uterus starts to grow outside the uterine wall — including on or near the ovaries, fallopian tubes, uterus, bowel, bladder, or anywhere inside the abdominal cavity, according to Yale Medicine.

It's a progressive disease, which means that pain, scarring, and adhesions caused by endometriosis can worsen the longer you go without treatment, as Dr. Suzanne Bovone, OB/GYN at Obstetrics and Gynecology of San Jose, part of Pediatrix Medical Group, tells Scary Mommy. So how can you recognize the signs and symptoms to help best support and advocate for your child?

"The classic symptom of endometriosis is pain," says Bovone. "It is usually cyclic with the menstrual cycle, but not always."

Endo 102: What To Do

If your child begins complaining of pain that is impacting their daily functioning and well-being, you can have them "keep a journal of when the pain happens and note the type of pain (i.e., stabbing, twisting, dull, deep), how long it happens for, what makes it better/worse and intensity of pain (on a 1-10 scale). In addition to tracking pain, include menstrual cycle days, changes in diet, stress, and sleep, and any pain with bowel movements or urination."

"Parents should also note if their child is missing school or important activities due to pain," she adds. Teens can also speak confidentially with their doctors if there's pain related to sex. "If so, the physician can explore if painful sex is related to endometriosis or a separate issue that needs evaluation. Sexual assault can lead to chronic pelvic pain as well. The physician will ask about this in a confidential manner, and it is important for parental support in giving the teen time for a private discussion with their physician. As chronic pain can affect mental health, screening for depression and anxiety is important."

Endo or otherwise, it's vital to support your kid in a shame- and judgment-free manner while also empowering them to advocate for themselves and their health, stepping in if they tell you they aren't being heard or cared for properly.

Testing and Treatment

Unfortunately, a tween/teen can develop endometriosis. But Bovone notes that if found early, treatment can help significantly reduce symptoms so that the condition doesn't disrupt your child's life, health, and future fertility.

"Diagnosis can be made based on clinical history and exam," says Bovone. "A pelvic exam can be modified in a teen, especially if one is not sexually active. A rectal exam can be done instead of a vaginal exam to feel the uterus and ovaries." While ultrasounds might feel less invasive (especially to a young person), Bovone says that small areas of displaced endometrial tissue typically won't appear on an ultrasound, making it an ineffective testing measure. "The ultrasound is more helpful in excluding other causes of pain such as ovarian cysts and genital tract abnormalities," she notes.

First-line treatment for endo includes NSAIDs (anti-inflammatory medications such as ibuprofen or prescription medication). Many doctors recommend that patients take NSAIDs before the expected pain onset, adding, "It is easier to diminish pain at a lower level than max level."

"It is also important to decrease stress, eat a healthy diet, exercise, and get adequate sleep," she says. "Oral contraceptives can also be used to regulate hormonal fluctuations and, with it, the cyclic pain. Many patients will use continuous oral contraceptives so that they do not have a period at all — this can be done with many types of birth control, including pills, patches, or rings. At times, use of a progestin-only contraceptive can be helpful, which includes oral pills, injections, implants, or an IUD."

Bovone notes that doctors will frequently allow for a trial period of three to four months to see if NSAIDs and/or oral contraceptives help ease your child's symptoms, adding, "If there is no improvement, consider a diagnostic laparoscopy where a camera is inserted through the belly button." The excess tissue can be removed during this surgery, therefore treating the endometriosis.

After surgery, your child might continue with NSAIDs, oral contraceptives, and/or other hormone-regulating medications, but post-surgery treatment will depend on your child's specific needs.

The TL;DR

"Endometriosis can lead to debilitating pain that causes one to miss out on normal activities of life — being with friends, extracurricular activities, work, and intimate relationships," says Bovone. "Not knowing and being able to treat the pain can lead to depression and isolation, while the disease's long-term impact on fertility is well known. Many patients may need the assistance of in-vitro fertilization (IVF) to have children. Definitive management of endometriosis is a hysterectomy and removal of the ovaries. Obviously, this is what gynecologists would like to prevent by diagnosing and treating endometriosis earlier."

If your child is experiencing menstrual pain or other disruptive period symptoms, they'll need you to be on their side — either acting as an advocate or encouraging them to speak with their doctor openly. "If one physician does not take the time to listen and ask the right questions, then it is OK to seek another opinion," says Bovone. "There are many endometriosis specialists within gynecology as well."

The bottom line is that your child can get the help they need as long as they have the support they deserve, so let them know they're not alone at any point along the way.