Many teens may have painful periods. However in most cases, they will be able to manage the symptoms with things like heating pads or pain medication. Painful periods that make you miss school, lose sleep, and skip social activities are not normal. In fact, they can be a sign of a serious but treatable condition called endometriosis (pronounced end-oh-me-tree-oh-sis).
Unfortunately, however, getting an endometriosis diagnosis can sometimes take longer than it needs to. Studies show it may take 2- 9 years before a diagnosis is made, and patients may see an average of 4 doctors before they’re diagnosed.
Understanding what endometriosis is and how to advocate for yourself can help you get the support you need. Here are answers to 7 common questions about endometriosis in teens, from what it is to how to talk to your doctor to how it’s treated.
1. What is endometriosis?
To understand endometriosis, it’s important to first have a basic understanding of your reproductive anatomy. The endometrium is sometimes called the uterine lining. This is the tissue that builds on the inside of your uterus during your menstrual cycle, and is then expelled when you have your period.
When someone has endometriosis, endometrial-like tissue grows outside of the uterus. The tissue may grow on the uterus, ovaries, fallopian tubes or other areas of the body.
This can cause severe menstrual cramps and other types of pain. Over time, if left untreated, it can lead to inflammation, chronic (long-lasting) pain, difficulty getting pregnant, and other health complications.
2. What are the symptoms of endometriosis in teens?
In teens, the main symptom is menstrual pain. Most young people have cramping that starts a day or two before their period, and continues into their period. However, this pain can usually be managed with over the counter nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen.
With endometriosis, this pain and cramping may be much more severe. You may miss school or social events because of the pain, have trouble sleeping, or experience nausea or even vomiting. Some people with endometriosis may also have especially heavy periods.
Other symptoms of endometriosis include acyclic pain (pain even when you’re not on or about to get your period), chronic pain, pain from penetrative sex, bladder symptoms (such as pain with urination, bladder pain or blood in the urine), and digestive issues (like diarrhea, nausea or constipation).
It’s important to note that endometriosis isn’t the only condition that can cause pelvic pain or especially painful menstrual cramps. Infections, premenstrual syndrome or premenstrual dysphoric disorder, uterine fibroids and ovarian cysts are also possible causes, to name just a few.
3. How do I talk to my doctor about painful periods?
If your periods are so painful that you miss school or extracurricular activities, or over the counter pain medications don’t help much, it’s time to talk to your health care provider. Be direct about what’s bothering you, and the impact it’s having on your life.
It’s ok if you’re not sure where to begin. Lots of people feel awkward or embarrassed talking about their period with their doctor. However, it’s important for your doctor to have all the information they need, so they can provide you with the best care they can. If your doctor doesn’t know what’s going on, they can’t help you.
To help you have this conversation, keep a menstrual calendar. Track when your pain begins and ends, how bad it is on different days, and when your period starts and stops. If it’s easier, you can download a menstrual tracking app. Having that calendar will help your doctor decide on next steps, and ultimately help you both manage your pain better, whether you have endometriosis or not.
4. What if my doctor doesn’t take me seriously?
Your health care provider should listen to your concerns, take them seriously, and work with you to come up with a treatment plan that works for you.
Unfortunately, however, we live in a world where women’s pain—especially the pain of women of color—may be overlooked. If you feel like your doctor isn’t giving you the care you deserve, speak up. If you haven’t already, track your period and bring a menstrual calendar to your next appointment. Having a physical, objective calendar can help your provider visualize your concerns in a more concrete way.
If you brought up your pain during your annual physical, your provider may not have scheduled enough time to talk about your concerns. Ask to make a separate appointment for you to come back and discuss your periods.
Remember that you are not stuck with your current doctor. If you continue to feel like your provider isn’t helping, you can find a new health care provider. Ask your friends and family members for recommendations. You can also look for a provider who specializes in adolescent gynecology and/or pelvic pain in adolescents.
5. How does a doctor diagnose endometriosis?
When you first talk about menstrual pain with your doctor, they will review your symptoms and family history very carefully. They may also perform a pelvic exam and recommend an ultrasound.
If you’re having intense menstrual pain (whether you have endometriosis or not), your health care provider will most likely first prescribe prescription-strength NSAIDs (a kind of pain medication, like naproxen and ibuprofen).
If that doesn’t help, your provider may try hormonal management. This usually means using hormonal birth control. Any of the currently approved hormonal birth control options may work to control menstrual cramping. However many of my teen patients like the pill or a progestin intrauterine device (IUD).
If hormonal birth control doesn’t work, your doctor may recommend laparoscopy (a surgery where a doctor looks inside your pelvic area to see the endometrial tissue and takes a sample, if appropriate). It’s important that any doctor performing the surgery is aware of what endometriosis may look like in a teen, as it may look very different from an adult’s.
6. How is endometriosis in teens treated?
Endometriosis is a chronic condition that can worsen over time if it’s not adequately treated. However, there are a variety of medical management options.
One common treatment is hormonal management, which I discussed above. If hormonal management doesn’t work, there are other treatment options. These include the short term use of gonadotropin-releasing hormone (GnRH) agonists such as leuprolide (Lupron). Over time, these stop your menstrual cycle, helping to treat menstrual pain.
Often, managing endometriosis requires a multidisciplinary team. This means using providers with different specialties. Chronic pain can cause extra stress, and stress, in turn, can make chronic pain even worse. We often recommend seeing a counselor to help you manage this stress.
With treatment, your doctor is trying to prevent acute (intense) and chronic pain, and keep the endometriosis from progressing (getting worse). The ultimate goal is to prevent pain from disrupting your quality of life and set you up for a healthy reproductive future!
7. If I have endometriosis, will I be able to have kids?
Yes. Many people with endometriosis do not have problems getting pregnant when they’re ready. However, if the disorder is left untreated, it may affect their ability to become pregnant.
Since one of the main treatments for endometriosis is hormonal birth control, your treatment plan will have to change if or when you decide you want to become pregnant. However, your provider should help you find other ways to help manage your symptoms.
Remember: You are not your diagnosis.
If you have endometriosis, you may feel stressed, frustrated or have other complicated feelings about the condition. That’s normal and ok. Talk to someone you trust about what you’re feeling. You’re not alone, and you are bigger than your diagnosis.
If you’d like more information about endometriosis, I recommend the Center for Young Women’s Health and the Endometriosis Association. If you’re 10-22 years old in NYC, you can call (212) 423-3000 to make an appointment at the Mount Sinai Adolescent Health Center for free, comprehensive health care.
Gylynthia Trotman, MD, MPH is an Assistant Professor of Obstetrics and Gynecology and Pediatrics at The Icahn School of Medicine at Mount Sinai. Within the Mount Sinai Health System, Dr. Trotman serves as Director of Pediatric and Adolescent Gynecology where she specializes in diagnosing and treating patients from infancy through young adulthood with medical and surgical gynecologic problems. She is dedicated to providing compassionate and comprehensive care, optimizing patient and family experience and providing education and advocacy for a diverse population of girls and young women.