My Teenager Is in Terrible Pain…Could It Be Endometriosis?

The teenage years are tough—for both parents and teens. Figuring out who you are, what you want, and how you want to get there can be tough, to put it mildly. Peer pressures, raging hormones, and discoveries can be overwhelming. From alcohol to boys and cars to clothes, your teenage daughter is riding a seemingly never-ending rollercoaster of emotions. The ups and downs can make anyone vomit, even those with an iron stomach.

Adding the debilitating “take you out of the game and sideline you from school”-type of pain can make matters a whole lot worse. It can be frightening, confusing, and exhausting. And while getting your period is a rite of passage, severe pain is not. It is important for both mothers and daughters to recognize this—you should not blow off blow-your-socks-off pain every month. Endo can affect teens just as it affects women in their 30s. Here’s the deal on endo in adolescents.

Interestingly, if you ask most women who have endo as adults when their pain started, most would say under the age of 20. Although initially we thought it took years for endo to develop, we now know it can start right after the first period (and in very rare cases, before). Just like their adult female counterparts, we don’t really know exactly why endo forms. The big four include retrograde menstruation (when blood goes backwards into the tubes, ovaries, and pelvis as well as forward), the spread of endometrial cells through the blood vessels and lymphatic systems, the differentiation of undifferentiated cells, and an alteration in the immune system. And like everything else in life (thanks, Mom, for those bunions!), genetics plays a big role in who gets endo and who doesn’t. Girls whose moms or sisters or grandmothers have endo are more likely to have endo themselves.

It’s important to recognize or help your daughter recognize that intense pelvic pain and debilitating menstrual cramps are not normal. You don’t need to just toughen up and take it. You need treatment. Adolescents with endometriosis are more likely to complain of both cyclic and acyclic pain (a.k.a. pain during menses and pain throughout the menstrual cycle—pain all the time). Young girls are also likely to complain about GI stuff (constipation, pain with defecation, rectal pain, and bleeding) as well as urinary discomfort (pain, urgency, and blood in urine). The only way to make the diagnosis is to see a doctor who you can “dish” to.

A thorough history can crack the code. While a physical exam and blood tests are also a must, they definitely come second and third. While ultrasound and other “picture-taking” tests are key in diagnosing adult women with endo, they are less so in the adolescent population. We almost never see ovarian cysts (a.k.a. endometriomas) in adolescents, and therefore, the ultrasound is less helpful. However, it can be helpful in excluding structural abnormalities of the pelvis, which can go hand in hand with endo. Bottom line, make sure you or your daughter are seeing a doctor she is at ease with. These conversations, especially when they are the first of their kind, should be had in a comfortable environment.

After the diagnosis has been made, the first choice of treatment is medical. The go-to medical option is nonsteroidal anti-inflammatory agents (a.k.a. NSAIDS; Advil, Motrin, and the like). In most cases, we recommend giving NSAIDS plus hormonal therapy (oral contraceptive pills, implantable devices, or injectable medications). The dynamic duo has a way of keeping pain at bay (without any harm to yours or your daughter’s future reproductive abilities). If this pair does not work (most GYNs recommend at least a three-month trial), we suggest a more thorough investigation before amping up the treatment; that usually includes a surgery (laparoscopy) to look inside and confirm endo is what we are dealing with. At the same time that a diagnosis is made, surgical treatment of the disease (if the bad guy is, in fact, endo) can be performed. Our words of wisdom when it comes to surgery are limited to one sentence: Make sure the surgeon who is operating on you or your daughter specializes in this! Look for a pediatric GYN or a pediatric surgeon or an adult endo surgeon with experience treating adolescents. Therefore, if surgery is needed, they should be the ones to do it.

If surgery is needed, it often doesn’t end here. The after party is often just as important as the pre-party—we recommend that adolescents who undergo surgery for endometriosis receive medical treatment following the procedure. Those endo areas are making a lot of unpleasant substances (a.k.a. prostaglandins and cytokines), which are no one’s idea of a good time. Even the best of surgeons can’t get every last bit out. To keep those angry areas quiet (and prevent them from growing from small problems to big problems), GYNs generally start hormone therapy—think oral contraceptive pills.

By turning off your system, we can keep whatever is left (as well as all the good that the surgery did) silent. Although there are other ways to keep things quiet (both pre and post-surgery), some may be too much for a young girl’s bones to take. Lupron is very good at shutting things down. However, in its zest to keep the ovaries quiet, it can have a negative impact on bone density. As a result, we are hesitant to prescribe it to young girls.

We certainly don’t recommend labeling all pelvic pain in teenage girls as endo. There are other processes that can cause pain, including pregnancy, appendicitis, pelvic inflammatory disease, GI issues, and structural abnormalities of the GYN system. Pelvic pain can also be the result of sexual abuse. Although endo is not uncommon in adolescents (about 30% of adolescent girls with chronic pelvic pain have endo), we have to keep our eyes open for other possible problems. We remember being teenage girls—those years can be tough, to say the least. Make sure to talk about what’s going on with someone you trust. It can make all the difference in early diagnosis. This is one place where “no pain, no gain” does not apply!