Many women and adolescents experience cramping during their menstrual cycle, but when the cramps become so painful that you can’t sleep, are having muscle cramps and headaches, or even vomiting and experiencing diarrhea, it could be more. Endometriosis affects 1 in 10 women and Dr. Lacey Armstrong with CMC Women’s Health stressed that it can even affect young women who are just beginning to experience their menstrual cycles.
“Many people, including some medical professionals, think that endometriosis only affects adult women, women in their 20s and 30s, but that is not always the case,” said Dr. Armstrong. “We are recognizing that endometriosis can and does happen to young girls too.”
Many females do not receive a diagnosis of endometriosis until they are trying to conceive, so it often goes undiagnosed in teenagers. However, endometriosis in teens is relatively common.
What are the symptoms of endometriosis?
Endometriosis is an ongoing condition that happens when uterine tissue grows outside the uterus, especially in the abdominal and pelvic areas. No one knows the exact cause of endometriosis. It often begins with the start of menstrual periods and can change over time, causing potential problems when you become pregnant.
“The most common symptoms of endometriosis are painful menstrual periods associated with cramping and lower abdominal pain,” explained Dr. Armstrong. “Sometimes your child may experience other symptoms like nausea, vomiting, and changes in urination and bowel movements. Mild cramping is common with normal menstrual cycles, but the pain and cramping caused by endometriosis are severe. This kind of pain doesn’t really respond to over-the-counter pain relievers or hormone therapies. Eventually, the pelvic pain can become more of a daily pain instead of just falling around your period.”
Why are there delays in the diagnosis of endometriosis in younger females?
Research studies have indicated that 38% of those with endometriosis have symptoms before age 15. However, receiving a correct diagnosis and treatment takes an astounding average of over nine years. This means that much of a child’s youth may be spent suffering unexplained, often crippling pain which greatly hinders development.
Dr. Armstrong explained that the pain in adolescents is not always as cyclical as it is in adult women, meaning it’s not necessarily tied to their period. This can throw doctors off. Add to that a common bias amongst physicians that girls are too young for their issues to be related to endometriosis so the pain must be the result of something else.
“For adult women, it can take years to reach a diagnosis of endometriosis, but for teens, it can be an average of 6 to 10 years after symptoms begin,” stressed Dr. Armstrong. “Which is sad because, in the meantime, these girls are missing school, sports, and activities with their friends. We can combat this through education of parents and teens and preparing them to be their own healthcare advocates.”
Understandably, many adolescent females lack the knowledge and self-awareness to know when pain is normal and when it’s not. This can lead to delays in diagnosis.
“Adolescent girls are often told that periods are supposed to be painful,” noted Dr. Armstrong. “That’s problematic because young girls often can’t tell the difference in levels of pain. If they haven’t been taught the difference between what’s normal and not, then they’ll often suffer in silence, because they don’t want to be seen as weak or unable to handle “normal period pain”, the same pain that their peers seem to handle just fine. How can we expect a child to verbalize what they are experiencing to a parent or doctor, especially when it’s an embarrassing topic, to begin with?”
The social stigmas around menstrual pain, the female anatomy, and some of the symptoms of endometriosis like painful bowel movements are associated with adolescent women waiting three times longer to seek medical treatment than adults with the same symptoms.
“Young women are at a very vulnerable age,” Dr. Armstrong stressed. “It’s tough for them to talk about periods and cramps, female issues, and the hidden parts of their bodies that are kind of foreign to them. There’s a level of fear and shame about exposing themselves and what they’re going through and discussing those things with their peers. They don’t want to be laughed at, so they avoid bringing it up with their friends and even their parents. Will they understand? Will they brush it off? Will they laugh? Will they take me seriously? It’s tough for young girls to know how to broach the subject and express themselves. And so, unfortunately, they tend to wait and suffer through it.”
According to a recent study, this could be especially true for young female athletes because to be a team player you have to exhibit strength and always be ready to “step up to the plate.” Their competitive nature may lead them to push through the pain and not let their team down and they may even avoid discussing their discomfort so as not to appear weak, vulnerable, and unreliable to their teammates.
Another reason endometriosis can be difficult to diagnose is that the tests require a surgical procedure.
“If someone presents to me with pelvic pain, the first steps are to do a full analysis of their medical history and really listen to and try to understand what they are going through. Sometimes, I’ll also perform a pelvic exam but most of the time I can typically obtain the same information from other less invasive techniques. Throughout this process, we are looking for the clinical signs and symptoms that would lead to other diagnoses or the signs that would be highly suggestive of endometriosis. If that is a strong possibility and the patient is in severe, untreatable pain, the next step is a surgical biopsy that will confirm an endometriosis diagnosis.”
Office evaluation sometimes includes a pelvic ultrasound, but often endometriosis does not cause ovarian cysts or other changes that are visible on ultrasound in teens and younger women. Endometriosis is only diagnosed with absolute certainty with a surgical biopsy which is done via a minimally invasive surgery called diagnostic laparoscopy.
Treatment Options for Endometriosis in Adolescents
There is no cure for endometriosis, but treatment can help young women manage their symptoms and significantly reduce endometriosis pain. Not only that but the later endometriosis is diagnosed, the more likely it can lead to other health problems. “It’s a progressive disease,” advised Dr. Armstrong, “therefore, early diagnosis and treatment are crucial. We want to prevent endometriosis from advancing and causing further pain, scar tissue, organ damage, and future infertility.”
“We start with nonsurgical treatments for girls, teens, and young women who are not currently trying to become pregnant. The most common nonsurgical treatments we use are hormonal medications that cause endometrial lesions to shrink and prevent the condition from spreading further.”
Some common hormonal medications used are:
- Oral progesterone pills
- Birth control pill, patch, ring, or injection
- Intrauterine devices (IUDs) that contain progesterone
- An implant that goes under the skin
- An injection that blocks the production of estrogen
Many girls, teens, and young women will try several of these medications or use them together to control their endometriosis symptoms. Although many of these treatments are labeled as “birth control,” they are effective medical treatments for endometriosis and do not increase the likelihood of sexual activity. These hormonal treatments reduce the spread of endometriosis and help protect the future fertility of young women with the condition.
If symptoms are severe and don’t improve after six months of medical treatment, then surgery may be the next step. “Surgery is never a first resort, especially for young women,” stressed Dr. Armstrong, “but when it does become necessary, laparoscopy, the same surgery used to diagnose endometriosis, is also used to treat it.”
In laparoscopy, your surgeon inserts a thin tube with a camera through a tiny cut in the skin. They look for the growths and they may do a biopsy. This is vital for diagnosis but it’s also during this process that the surgeon can treat the endometriosis by removing growths in the abdomen and pelvis.
“We can treat lesions by burning them, called ablation, using a high energy source like a laser or we can cut them out, called excision. There is a short recovery period after surgery and over time, most people have less pain. Since surgery isn’t a cure, we’ll continue with hormone therapy, like birth control pills or an IUD, to help control pain and prevent the endometriosis from getting worse.”
Endometriosis is a condition that once diagnosed, will require lifelong management to improve your health, future fertility, and quality of life. It’s the early identification of endometriosis that Dr. Armstrong says is so important in achieving that and it’s up to parents and physicians to empower young girls to speak up and seek the care they need.
“When it comes to medical problems we have to listen to our kids and we have to help them advocate for themselves,” Dr. Armstrong says. “You have to stick up for yourself. If something is wrong, insist on finding an answer. This is your body, and you know it best. Don’t let someone dismiss you and say nothing is wrong just because you can’t see it or have a hard time explaining it.”
Why choose CMC Women’s Health?
As a woman, taking care of your body is very important no matter what age you are. From getting your first period to going through menopause, the health changes that occur starting during your teenage years through adulthood are significant. At CMC Women’s Health, our specialists in gynecology are experts at providing age-appropriate gynecologic care and making our patients feel at ease. Trust us to provide the expert care you need on your personal health journey.