What is endometriosis?

Endometriosis, pronounced, “end–o–me–tree–o–sis” can affect individuals born with female reproductive organs of all ages. It is an inflammatory condition that occurs when tissue similar to the inside lining of the uterus is found outside of its normal location. Endometrial implants can be found on the ovaries, fallopian tubes, and ligaments that support the uterus, and they can even implant on top of the bladder and rectum. The most common locations of endometrial implants are in the cul–de–sac area (behind the uterus) and near the bladder.

What are the symptoms of endometriosis?

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Endometriosis, or “endo,” causes different symptoms in young individuals. Pelvic pain and/or severe period cramps are the most common symptoms. There can be pain before, during or after your period. The pain may occur at regular times in your cycle or it may occur at any time during the month. You are considered to have chronic pelvic pain if pain has lasted for 3 to 6 months. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms you may have. Some people with endo may have pain with exercise, sex, and/or after a pelvic exam. Approximately half of people with endometriosis also experience non-gynecologic symptoms such as painful or frequent urination, diarrhea or constipation. It’s important to remember that some people have a lot of endometriosis and have very little pain, while others may have a small amount of endometriosis and severe pain.

What causes endometriosis?

Although we know that some teens may be more at risk of endometriosis because of affected family relatives, we still do not know completely what causes this disease.

The three most accepted theories are:

• Sampson’s Theory: This theory explains that the flow of menstrual blood gets “backed up” causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus.
• Meyer’s Theory: This theory proposes that specific cells called “metaplastic cells” change into endometrial cells and are actually present at birth.
• Vascular Theory: This theory suggests that the endometrial tissue “travels” through the body via blood vessels. It then reaches various tissues, implants, and then grows, causing pain.

How is endometriosis diagnosed?

The ONLY way to be 100% sure of this diagnosis is to have a procedure called a laparoscopy. There is no blood test, x–ray, ultrasound, or MRI that can diagnose endometriosis at this time. A laparoscopy allows your doctor to look inside your belly at your pelvic organs with a special lens to identify the endometriosis implants. Other tests that may be ordered before a laparoscopy might include blood tests, vaginal cultures to check for infection, or imaging such as ultrasound or MRI to make sure nothing else is going on.

Why have I heard that some adult women may have trouble getting pregnant?

If endometriosis is not diagnosed and treated early, it can grow and damage the fallopian tubes and ovaries. This can make it more difficult to get pregnant. Studies done at Boston Children’s Hospital have shown that if endometriosis is found and treated early, it does not tend to get worse over time.

Is there a cure for endometriosis?

While there is no cure for endometriosis, lifestyle changes along with surgery and medicine can keep the endometriosis from getting worse and harming your future fertility. It is very helpful to use a Pain and Symptom Tracker to record your pain for a while. Another method to locate and describe your pain is “Pain Mapping”. Make a copy of your Pain and Symptom Tracker and Pain Mapping worksheets, fill them out, and bring them with you to your appointments. These tools will help you explain your pain to your medical team. There are also special apps you can download that can help you record your symptoms and treatments.

Ways to help you describe pelvic pain:

• Type (sharp, dull, burning, aching, crampy)
• Location (where the pain is)
• Duration (how long the pain lasts)
• Intensity (on a scale of 1–10, how “bad” the pain is)

What kinds of treatment are available?

Once a diagnosis of endometriosis has been made, treatment falls into the following categories.

Observation: After an evaluation and before beginning hormonal therapy, you and your gynecology (GYN) team may decide to keep track of your symptoms and try mild pain medicine. This is usually the first step for people with premenarcheal endometriosis (who have not had their first period). Observation is generally not recommended for people who have already experienced their periods because the disease can progress after surgery unless medications are continued.

Medical suppression: Hormonal treatments containing progestins with or without estrogen help prevent the progression of disease and relieve symptoms. Estrogen-progestin therapies include the birth control pill, patch, and the ring. Progestin-only pills may come in three forms:  a pill pack as Norethindrone 0.35mg, a pill pack as Drospirenone 4mg, or as a regular pill that comes in a bottle called Norethindrone acetate (Aygestin®). The dose of Aygestin® can be adjusted for your body to stop your pain and bleeding. It is important to mention that Norethindrone acetate (Aygestin ®) is not an approved form of birth control, meaning it will NOT protect you against pregnancy. Since the medication is not considered a method of contraception, you may see a co-pay when picking up the prescription from your pharmacy. Other options include Depot Provera (injections every three months), or the levonorgestrel intrauterine device (Mirena®), which can stay in the uterus for up to 8 years.

Another class of medications include GnRH agonists, such as Leuprolide acetate (Lupron–Depot® or Synarel), and a GnRH antagonist known as Elagolix. These medications work by by shutting off hormones made by the ovaries and temporarily stops menstruation (periods). The use of GnRH therapies lower your body’s estrogen level (one of the hormones that causes your body to have periods).

Surgery: Visible endometriosis will be destroyed with heat (ablation using electric cautery or laser) or cut out (excision using a scissor, laser, or cautery) at the time of laparoscopy. Studies have shown that deeply growing lesions of endometriosis should be excised.  Most teens have superficial endometriosis that can be destroyed with destruction instead of excising in order to decrease the risk of adhesion (scar tissue) formation. After this procedure, many people find relief from symptoms. Most say that their pain is better, but not completely gone. Unfortunately, there is no cure for endometriosis at this time.  It is possible that some young people may experience pain again.

Lifestyle changes: Dealing with chronic pelvic pain can be challenging. Exercising often helps to relieve or lessen pelvic pain and menstrual cramps. Eating a healthy and balanced anti-inflammatory diet and getting 8-9 hrs of sleep every night will also help your body manage pain. Practicing relaxation techniques such as yoga and meditation help to ease pain too.

Pain treatment services: If you do not have relief from your symptoms, your gynecologist may refer you to a pain treatment program for an evaluation. Following an evaluation, services such as biofeedback, pelvic floor physical therapy, acupuncture and exercise programs may be offered.

Complementary medicine: Acupuncture, use of a Transcutaneous Electrical Nerve Stimulation (TENS) Unit, herbal remedies, homeopathy, and healing touch are popular adjunct approaches to medical treatment. Many of these therapies can be helpful, however not every complementary therapy has been scientifically proven to be safe and effective. Research studies are limited. Before experimenting with any alternative therapy, talk to your gynecologist about this and make sure that you are working with a licensed provider.

What else do I need to know about endometriosis?

• Young people CAN suffer from symptoms of endometriosis. Medical studies have found this disease in teenagers and young children.
• Chronic pelvic pain is NOT normal. Most young peoplehave no or mild to moderate menstrual cramps one or two days a month. If you are absent from school or work because of pelvic pain or menstrual cramps, call your gynecology office.
• Endometriosis occurs in peopleof ALL races.
• Endometriosis is NOT a STI (sexually transmitted infection).
• Getting pregnant does NOT cure this disease but may improve symptoms for some women. Some peoplewith endometriosis who have had children continue to have pain.
• If your pain makes you feel at all disadvantaged compared to other young people, this is not normal. Don’t “normalize” your symptoms. If you don’t feel like you are equally capable as other young people your age (because of pelvic pain), you need to seek medical treatment.

Additional Resources

Keeping track of pelvic pain, menstrual cramps, and other symptoms such as pain when you pass urine or when you have a bowel movement is important. Be sure to write down any symptoms you have, the number from 1–10 that describes the degree of pain (1= almost no pain- 10= worst pain you have ever had), and where it is located. If you are taking continuous hormone pills to suppress bleeding, you can use the chart to track other symptoms, including breakthrough bleeding.

Instructions:

• Be sure to check out the Sample Pain and Symptom Tracker and carefully read the keys at the bottom before you start filling out your own tracker.
• Make a few copies of My Pain and Symptom Tracker.
• Write the name of the month at the top of the page and begin tracking your pain and symptoms.
• To fill in the bleeding “Amount” row, look at the Blood Flow Amount Key at the bottom of the page to figure out which letter (S, L, N, or H) best describes your flow.
• Figure out which letter best describes the location of your pain (M, L, or R) by taking a look at the “Pelvic Pain Location Key” at the bottom of the page. Write it down in the Pelvic Pain “Location/Intensity” row. Then, decide which number best describes your pain (0 = no pain, 10 = the worst pain you have ever had) by looking at the Pelvic Pain Numerical Rating Scale at the bottom of the page. Write that number down in the same row. Example = M/5.
• If you don’t have any pain symptoms or breakthrough bleeding on any given day, just leave the box empty.
• Remember to bring your Pain and Symptom Tracker with you to your GYN appointments.

Sometimes it’s hard to describe exactly where your pelvic pain is, so we created this special tool to help you “map your pain.” Pain mapping using colored pencils or markers is a unique way to show your medical team the location of your pain. Simply color in the area where you have pain. You can create your own “key” using different colors. For example; you may use the color red to show the location of severe pain, while you may choose the color orange to indicate moderate pain—it’s up to you, you’re the artist. We’ve included a sample pain mapping worksheet to show you an example of how to map your pain.

• Sample Pain Mapping Worksheet
• My Pain Mapping Worksheet

Even though everyone experiences pain differently, it can be helpful to think of your pain in two ways: the physical pain you have, and how your pain impacts your life.

Your physical pain may include ongoing pelvic pain, painful periods, and bowel and bladder problems.

How your pain impacts your life may include challenges such as: isolation from friends due to unexpected bouts of physical pain, not being able to participate in sports or other activities (because of chronic pain and/or fatigue), and anxiety over school work because of absences. Also, your pain can take a toll on those who care about you, such as significant others and family members. This can cause added tension and stress. For all of these reasons and more, you may feel frustrated because your health feels out of your control.

Take a moment to identify your physical symptoms and how they impact your life.

Stress-relieving techniques: Learning to manage the stress in your life is important under any circumstances but it is essential when you are living with chronic pain. Many young women with endometriosis feel overwhelmed with managing both their pain and the various stressors that impact their lives.

Here are some examples of ways to manage the stress of chronic pain:

• Exercise
• Sleep 8–9 hours each night
• Take naps when you need them
• Meditate daily
• Eat 3 healthy and balanced meals everyday with nutritious snacks in between
• Do things you enjoy when you feel well
• Stay in touch with your friends in person, by phone, or online
• Keep up with your schoolwork (so you don’t feel overwhelmed or get behind)
• Practice yoga
• Learn when to push yourself and when not to
• Keep to routines as much as possible
• Plan ahead with your parents/caregivers for unexpected “flare–ups” of pain
• Talk to a counselor

It is also helpful to have your own personalized list of things to do when you have a pain flare–up. Your list can include things such as taking a warm bath or shower, lying down with a heating pad, practicing yoga, reading, watching a favorite show or movie, or listening to music.

Managing your pelvic pain at school: Does your endometriosis pain get in the way of attending school? Does your academic performance and grades sometime suffer due to absences, missed assignments or difficulty keeping focus? Perhaps you’ve also experienced tension with your family, and/or teachers due to poor school attendance and performance issues. Dealing with pelvic pain in a school setting can be very stressful, particularly if your teachers and school nurse are not aware of the pain you have to cope with most days.

Below are tips to help you manage the realities of being a student with chronic pelvic pain. Notice that all of the tips depend on BEING PREPARED.

• Know your pain tolerance threshold. Your pain will likely be mild some days, but other days it may be severe. Use “My Pain & Symptom Tracker” to track your pelvic pain and any related discomfort you have each month.
• Talk with your parent(s) or guardian(s) about what you can tolerate in school and what you cannot manage. This is best done at a pain–free time when you are calm and thinking clearly.
• Communicate with your close friends about what it’s like to have endometriosis, so they can understand why you sometimes miss school or activities and be supportive.
• Identify an adult contact person at school. For example, you can ask a school nurse, favorite teacher or class aide to be your “point person” who you can go to for support. Choose someone with whom you feel comfortable sharing your endometriosis history, and who can help and be supportive while you are at school.
• Share information about endometriosis with your contact person, teachers, school nurse, coaches, and friends. Those around you are likely to be more understanding and supportive if they know what endometriosis is, and how it impacts your life.
• Make a plan for pain at school. Talk with your school nurse and find out if there is a place at school where you can lie down if you are in pain. Listening to relaxing music may also help.
• Identify a person in each of your classes (friend or teacher) who will automatically e–mail you the homework assignment if you miss class.
• Give yourself enough time in the morning to get ready for school. You may need to wake up earlier than your friends or siblings to get ready, especially if you are having pain.
• Do not assume that every day you wake up with pain means that you have to stay home from school or that the day is “lost to pain”. Try to go to school every day even if you have some pain in the morning; chances are that your pain will get better or go away once you get moving and you are distracted. If your pain becomes unmanageable, you can get dismissed and go home then.
• Maintain a healthy lifestyle. Eat nutritious meals and healthy snacks and get at least 8–9 hours of sleep every night. Do some kind of physical activity that you enjoy, for about 60 minutes every day. Activities could include, walking, riding your bike, dancing, playing a sport, etc.
• Try not to fall behind in your schoolwork. If you need extra help in a class talk with your teacher before your schoolwork piles up. If you have to be absent from school for more than a week, find out about having a home tutor.
• Keep in touch with your friends. Even when you are absent, talk to at least one of your friends ever day either on the phone, via text messages, e–mail, or on a social media sites. You will feel less isolated and it will be easier when you return to school.
• Be proactive. Use the worksheet to make a list of things you can do to personally manage your pelvic pain at school.

Write down the ways you feel your endometriosis has affected your school life, and then make a list of the things you will try to do to improve the way you manage your pain at school. Be sure to include strategies that have worked.

Managing activities, friendships, and chronic pain: Living with chronic pain can impact all areas of a person’s life, even those areas that are typically fun and enjoyable. Having pain from endometriosis can sometimes get in the way of being able to do things with your friends both on a daily basis and for special events. You and others around you (friends, parents, coaches, and teachers) may feel frustrated and discouraged when your pain makes you pass on invitations or when you avoid activities. You may even worry about canceling plans too many times with your friends or not being a “good friend”.

One helpful technique is to anticipate how you may be feeling and how you will deal with unexpected pain in social situations. Here are some thoughts and advice from girls with endometriosis who try to rule the pain, not let the pain rule their lives:

• Be in touch with at least one person outside of your family every day.
• Organize activities that can be held at your house (such as craft parties, reading groups, board–game marathons, watching movies) if it is more comfortable to be home.
• Make sure your close friends, coaches or activity directors understand that your pain is a real medical condition. Educate them with information about endometriosis.
• Is there an activity you really want to do but are scared about fulfilling the requirements or keeping the commitment? Many group activities require a wide variety of participants in many roles. Explore the options with the group leader, explaining that you want to be involved in a way that you can handle.
• Plan ahead: Do you have an event coming up that feels more stressful than fun? Go back to your personalized list of things you can do in anticipation of pain.
• If you do have to cancel with friends or family, or you realize you cannot participate in an activity as planned, try to take it in stride: explain promptly, offer alternative options, and take care of yourself. Your friends, family, and others will respect you more for being honest rather than not showing up without an explanation.

Make a list of things that you love to do, and try to do at least one activity each day!

Complementary therapies for pain management: Some young women are helped by surgery, some by medication, and some with a combination of both. Many find that adding complementary therapies to traditional treatment helps them manage their pelvic pain more effectively.

Transcutaneous Electrical Nerve Stimulation (TENS) Unit is a machine that is used to relieve nerve pain by sending mild electrical currents to the desired location through the nerves.

Pelvic Floor Physical Therapy focuses on relaxing and/or strengthening a group of muscles, nerves, and ligaments that make up the pelvic floor. The pelvic floor is a small but mighty area that helps control the day-to-day functions of some very important organs such as the bladder, bowel, rectum, uterus, and vagina. These muscles help control your ability to pee, poop, insert a tampon, have sex, and for some to give birth.

Yoga involves a series of poses and gentle stretches. There are many different kinds of yoga. You can explore yoga classes at your YMCA, health center and yoga studios. Many teens find it helpful to take yoga classes to help with their pain. If you can’t find a yoga class in your area, YouTube offers great videos on yoga and your local library will have books on yoga as well.

Acupuncture is an Eastern Asian Medicine that involves the insertion of very fine needles into “acupuncture points” in the body. This is thought to stimulate the body’s nervous system to release certain chemicals in the muscles, spinal cord, and brain, which in turn release other chemicals and hormones in the body that may help to improve pain and other discomforts. Acupuncture may be covered by your health insurance.

Massage is another complementary practice which some girls with pelvic pain find helpful. There are several kinds of massage therapies available. Often massage treatments are combined with gentle heat.

Everyone has experienced physical pain at least once in their life, it doesn’t always feel good, but knowing how to manage it can make all the difference. Unfortunately, the challenging part about pain is that everyone feels pain differently. However, for teens living with endometriosis, finding relief from pelvic pain is crucial. Pelvic pain can be debilitating, preventing teens from being able to perform daily activities such as attending school to hanging out with friends on the weekends.

Pelvic pain generally responds well to over-the-counter (OTC) medications such as Acetaminophen (Tylenol) or nonsteroidal ant-inflammatory (NSAID). While other teens living with endo find relief through alternative therapies such as deep breathing, exercise, yoga, acupuncture, heat, massage, and the use of a TENS unit. That being said, it’s not uncommon for teens living with endo to use both OTC medications and alternative therapies to help manage their pelvic pain.

What is a TENS unit?

Transcutaneous Electrical Nerve Stimulation (TENS) unit. A TENS unit is a machine that is used to relieve nerve pain by sending mild electrical currents to the desired location through the nerves.

How does the TENS unit work?

The TENS unit sends out various electrical pulses that help prevent pain signals from getting to the brain. It also stimulates the area of the body to create more endorphins or natural painkillers to send to the area that is causing the pain. Most people say that it feels like a buzzing/tingling sensation on the skin.

How do I use a TENS unit?

Every TENS unit is different, but the basic function remains constant across all brands. You place the sticky pads on the areas that need relief (i.e., stomach, back, leg) and adjust the intensity of the electrical currents to your personal preference. Typically, the more pain a person is experiencing the stronger they prefer the electrical currents.

Who can use a TENS unit?

Almost everyone can use the TENS unit! It is used for all types of pain, but research is being conducted on the effectiveness for patients suffering from endometriosis or general painful period cramps. You should not use a TENS unit if you are pregnant or you have an implanted electrical device such as a cardiac pacemaker. You should not apply the sticky pads to open wounds or damaged skin (i.e. sun burns, rashes, etc.). Talk to your healthcare provider (HCP) if you are unsure whether or not you can use the TENS unit.

Where can I buy a TENS unit?

There are lots of different kinds of TENS units, but they all do the same thing. You can purchase one from the brand LIVIA, a unit that received approval from the Food and Drug Administration (FDA) for the treatment of menstrual cramps. The LIVIA is $199 to purchase, but the company also offers subscriptions at a much more affordable price. However, if you would prefer to purchase your own TENS unit and the cost of the LIVIA is too high, sites like Amazon carry units ranging from $15-40.

Can I wear my TENS unit in public?

Yes, it depends on the size of the TENS, but many are small and can fit under a loose top or clip to your pants!

How long does the pain relief last?

Pain relief depends on the person. Some people experience relief until they remove the TENS unit and others experience relief for up to 24 hours after one session with their TENS unit.

If you’ve been diagnosed with endometriosis, you may be wondering if there is anything you can do to feel better aside from taking medication. Appropriate nutrition and exercise play an important role in maintaining overall health.

Is there a special diet for people with endometriosis?

We know that there are foods that can boost our immune system and protect our bodies from some illnesses and diseases. Unfortunately, there is very little research on specific foods to eat to  help improve endometriosis symptoms. Researchers have found that people who eat diets rich in fruits, vegetables, and healthy fats while limiting their intake of red meat and less healthful fats are less likely to have endometriosis. Some young people with endometriosis say they feel better when they eat a nutritious diet, and some experts believe that eating certain foods can help endometriosis symptoms by reducing inflammation and estrogen levels in the body. Even if eating nutritious foods don’t improve your “endo” symptoms, there are lots of other benefits to a healthy diet such as reducing your risk of heart disease.

Consider making changes that can improve your overall health:

• Eat a high-fiber diet that includes plenty of fruits, vegetables, beans, whole grains, and nuts
• Limit saturated fat by eating mostly plant–based proteins, choosing low–fat dairy products, and selecting lean meats
• Eat more sources of omega–3 fats such as fish (salmon, mackerel, herring, and sardines), fish oil, canola oil, flaxseeds, walnuts, and pumpkin seeds

How can I make sure I am getting all of the nutrients I need?

Eating a balanced diet with lots of fruits and vegetables, whole grains, plant–based protein, lean meats, and healthy fats can help you get all of the vitamins, minerals, and other nutrients your body needs. If you are wondering if you are getting enough nutrients, ask your health care provider about meeting with a dietitian.

Do I need take a vitamin supplement?

If you eat three balanced meals each day and healthy snacks, you are probably getting enough vitamins and minerals through the food you eat. If you aren’t getting in all of your food groups on a regular basis, or if you are being treated for another medical condition, you may want to consider taking a daily multivitamin to ensure you’re getting the daily recommended amount of nutrients for your body. Talk to your health care provider (HCP) to discuss if you should take a multivitamin or other dietary supplements.

Do I need to take extra calcium?

Some endometriosis medications work by lowering estrogen levels. If you are on an estrogen–lowering medication for more than 6 months, you may be at risk for developing osteoporosis (brittle bones). Ask your gynecologist if you should take calcium and vitamin D supplements to help protect your bones.

What about other vitamins and herbs?

You may see ads or stories on the internet, in magazines, and even personal blogs that claim certain vitamins and herbs help to treat endometriosis. The truth is, there are no published scientific studies that prove that extra supplements improve endometriosis symptoms. It is important to remember that some herbs (such as ginseng) can actually interfere with medications that treat endometriosis because they contain plant–estrogen. It is always best to talk with your HCP first before taking any over–the–counter herbs. If you are currently taking any herbs or dietary supplements, be sure to tell your gynecologist so they can make sure your supplements are not interfering with your other endometriosis treatment.

What should I pay attention to on food labels?

It’s always important to pay attention to the nutrition facts labels when grocery shopping. The Nutrition Facts Label is on most foods (except fresh foods such as fruits and vegetables) and has important information including portion size and amount of vitamins/minerals the food contains.

Will exercise make my endometriosis symptoms worse?

Probably not. In fact, exercise may actually improve endometriosis symptoms. Daily exercise (about 60 minutes each day) such as walking, swimming, dancing, or other joyful activities will help you maintain a healthy weight and give you energy. It’s a good idea to check with your HCP or physical therapist to find out whether it’s okay to participate in very active sports or other strenuous exercises. Occasionally, very high intensity exercise such as running and jumping may bring on or increase endometriosis symptoms or other medical conditions.

Can exercise improve my endometriosis symptoms?

Yes. Here are a few reasons why exercise may help your endometriosis symptoms:

• Exercise releases endorphins. When we exercise, our brain releases “feel good” hormones called endorphins. These naturally occurring hormones work like pain relievers to reduce pain. It only takes about ten minutes of moderate exercise (any exercise that makes you sweat or breathe hard) for your body to start making these hormones.
• Exercise improves circulation. Moderate exercise gets our heart pumping and improves the blood flow to our organs. This is important because our blood carries oxygen and important nutrients to all our body systems.
• Regular exercise lowers the amount of estrogen in the body. Since the goal of endometriosis treatment is to lower estrogen levels, regular exercise may help improve endo symptoms.

Planning for college is a time filled with challenges and excitement. College life opens the door to personal growth and independence. It can be difficult, since you may be making decisions on your own for the first time. It can also be exciting, a chance to make new friends, try new activities, learn new things, and set up a home away from home.

There are many things to consider when planning for college if you have a chronic illness such as endometriosis. We hope that the following information will answer your questions and offer helpful hints.

Should I be concerned about my health insurance coverage?

Yes. It is important to know exactly what kind of health insurance coverage you have. For example, some insurance policies will only provide coverage until you are 18 or 19 years old. Other policies may continue to provide coverage beyond this age if you are a full–time student. Ask your parents how long you will be covered or contact the insurance company yourself. You should check with the admissions department at your college if you need to buy an additional student insurance policy while you are a student there. If you aren’t covered by your parents’ insurance while at college, make sure you sign up for a special student insurance policy.

Before you leave for college, or as soon as possible, ask your insurance company to send you a summary of your benefits, or ask them the questions listed below.

1. How long can I expect to have insurance coverage? (For example, up to what age am I covered? Do I need to be a full time student to receive or “get” full coverage?)
2. Does the policy cover out–of–state emergency services?
3. Does the policy require that I contact the insurance company within a certain amount of time if I use emergency services?
4. Is there a waiting period for certain services?
5. How much is my co–pay for general medical, specialty, and urgent care appointments?

What do I need to know about the health services at college?

You will need to find out:

• When the Health Center is open
• What kind of services are provided
• Where the Health Center is located
• Who you can talk to if you have any issues related to your endometriosis
• How to reach someone if you have concerns or questions
• If there is a health care provider at the Health Center that has experience in caring for young women with endometriosis. (If so, get the name and number before you need it.)

You should know the location of the closest hospital to your college in the event of an emergency, or if you need more care than your college Health Center can provide. Find out what kind of services are offered, and if students are transferred to another hospital if more specialized care is needed.

What should I do before I leave for college?

1. Make an appointment with your gynecologist before you leave for college. Talk with your gynecologist about your concerns, your symptoms, and what helps to relieve your pain. Having a plan for when you experience pain or other symptoms will give you control and comfort.
2. Be sure to have prescriptions filled with enough refills to last until you return to your doctor for a follow–up visit.
3. Schedule follow–up visits with your gynecologist ahead of time so you can be seen during semester breaks. Make sure to ask how frequently your provider would like to see you, 3 months, 6 months, or annually.
4. Remember your prescription will only have enough refills to get your to your next recommended appointment. This means that if your provider requests to see you back in 3 months, then the prescription will only have enough refills for 3 months.
5.  Scheduling appointments is on you as the patient. Sometimes the provider’s office will call to help you schedule an appointment, but often times it’s up to the patient. Set yourself a reminder. If your provider request to see you annually, set a 6 month reminder to call and schedule your appointment if you are unable to schedule one a year in advance.
6. Ask for a copy of recent operative notes (if you have had surgery for endometriosis) from the hospital where you were treated. Put them in a notebook and bring it with you to college with your important papers and/or ask the Health Center at school to keep a copy on file. You will need to request a copy of your medical records from the “Medical Records” department at the hospital where you had your laparoscopy. You may have to do this in person, or you may be able to send or fax a letter.

Should I find a gynecologist near my college?

If you are going to a college that is far away from home, you may decide that having a local health care provider or a gynecologist is best for you. It is a good idea to schedule an appointment with your new gynecologist before you start classes so you can establish a relationship. You can help the communication among all doctors involved in your care by providing them with a list of all your medical providers, and a brief description of their roles in your health care. Include telephone numbers, fax numbers, addresses, and e–mail contact information, if appropriate. Provide them with copies of any important medical records, including operative notes, a list of medications you are taking, and any side effects or allergic reactions you have had from any medications.

It may take a while until you feel completely comfortable making your needs known since you’re also adjusting to college life. As you work with your new health care providers, you’ll soon learn how to express yourself so that you can help to coordinate your care.

Should I talk with my professors about the effect of endometriosis on my life?

Some young people find that talking to their professors about their endometriosis is helpful. You may feel awkward at first about approaching your professors. However, most college faculty appreciate students who talk to them early on in the semester if there might be a problem that could potentially affect learning. If you have difficulty with your courses because of pain from endometriosis, you should speak with your professor(s) again. The longer you wait, the more overwhelmed you may become. You don’t have to give specific information unless you want to. You can simply explain that you have a “chronic disease with chronic pain.” Since endometriosis affects approximately 176 million people around the world, you may find that your professor is familiar with it.

Is there anyone else I should talk to?

It can be helpful to have 1–2 designated people in your college Health Center as your “liaisons”– a person to whom you can go to when you need medical assistance and another person who can offer you emotional support. They may likely be able to offer guidance if your pain interferes with your academics.

What are some ways to deal with my college workload?

Learning to use the course syllabus to your advantage can be helpful in dealing with your college workload. The syllabus lets you know what is expected of you for each class, and allows you to plan your course work accordingly. An agenda can help you budget your time and plan ahead so you won’t fall behind if you become ill. Taping lectures and then taking notes later from the recorded lecture can help if you have trouble concentrating in class. You will need to make time for listening to taped lectures sometime after class. If you can’t make it to class, ask a friend to tape the lecture for you. Most colleges also have resource centers that provide a variety of services to help students deal with heavy workloads. You may also be able to access lectures online.

What else should I know?

Check your college website to see if your school has special services for chronically ill students. They may be able to offer help with note taking, extensions on tests or papers, and/or help with special dietary needs.

There is no surgical cure for endometriosis, and if it is untreated it can grow, causing pain and possibly lowering your changes of pregnancy in the future. This is why you need to take hormonal medications. Treatment is aimed at controlling pain and preventing the endometriosis tissue, which responds to hormones, from getting worse. This guide was created to help you understand the different choices of hormonal treatment for endometriosis, as well as the benefits and possible side effects that are most commonly reported.

How do I know if hormone treatment is right for me?

Most young people can take hormone medicine, however, if you have certain medical conditions (such as a history of blood clots, high blood pressure, certain kinds of heart disease, hepatitis, severe migraines with visual changes or numbness over parts of your body, or if you smoke), certain hormonal therapies may not be an option for you. Be sure to tell your gynecologist if you have migraine headaches with loss of vision, flashing lights, numbness/tingling, or loss of speech. Also, it is very important to tell your gynecologist if anyone in your family has ever had a blood clot or stroke.

How does hormonal treatment work?

Hormonal treatment works by temporarily turning off your ovaries so you don’t ovulate (make eggs). When you don’t ovulate, you don’t have regular periods. When you are prescribed hormonal treatment continuously, you will rarely have periods or not have them at all. Since bleeding can cause pain for anyone with endometriosis, stopping your period will usually improve your pain. Hormonal treatment includes the Pill, vaginal ring, an injection (once every 3 months), an IUD (which is placed in the uterus) or a hormonal patch.

Hormonal treatment with combined estrogen and progestin:

Combined oral contraceptive pills (OCPs): contain the hormones estrogen and progestin. The goal of the treatment is to stop your periods and pain caused from endo. Young people with endometriosis will take these pills in a continuous fashion, meaning skipping the placebo or sugar pills at the end of the pack so that a period does not occur.

The vaginal ring: The vaginal ring is a small, thin, flexible rubber ring that fits inside the vagina. Once in place it releases a combination of estrogen and progestin. If you choose this method of hormonal treatment for your endo, you would insert the ring and leave it in place for 3 weeks. You would then take it out and replace it with a new one right away. (If you are sexually active, neither you nor your partner will be able to feel the ring when it is inserted properly.)

The patch: The patch is a small, tan piece of plastic that looks like a bandage. It also release a combination of estrogen and progestin, and you only need to change your patch once a week. The patch is made to stay in place even when you shower, swim, or sweat.

Benefits:

• Combined estrogen and progestin hormonal therapy may decrease or stop endo pain.
• Most people will only have 0–4 periods a year.
• Some young people prefer using the vaginal ring or patch because they don’t need to remember to take it every day.

Possible side effects:

• Spotting or breakthrough bleeding is common especially if you are skipping your periods, but the spotting should decrease over time.
• Some occasional break through bleeding is common with all hormonal treatments.
• Break through bleeding may be more common if you miss or take your pill late (greater than 20 minutes). A tight dosing schedule will help reduce and/or eliminate break through bleeding, try setting an alarm. If you experience break through bleeding every 1-3 months and you have not missed any pills or taken any doses late, talk to your health care provider.
• Some people may have heavier bleeding or a regular period.
• Breast tenderness, mood swings, headaches, nausea, cramps, bloating, and/or weight gain.
• There is some concern that the patch may release a higher dose of hormones than the pill, which can increase the risk of blood clots and/or stroke.
• Some people who use the hormone patch may have skin irritation where the patch is worn.
• Some people who use the vaginal ring may have vaginal irritation, but infection is not an increased risk.
• Some people may not have relief from their endometriosis pain.

Progesterone-only hormonal treatment:

Norethindrone: Norethindrone 0.35mg daily is a form of birth control that does not contain estrogen.

Drospirenone: Slynd® is another form of birth control that does not contain estrogen.

Norethindrone acetate: Aygestin® (Norethindrone acetate) is a pill that contains only progestin. The dosage is 2.5–10mg per day. This is a strong progestin, however it is not an approved form of contraception and may require a co-pay at the pharmacy.

Medroxyprogesterone Acetate (Depo–Provera®): Medroxyprogesterone acetate is another type of medication that only contains the hormone progesterone. It is an injection that is given once every 3 months by a nurse or your primary health care provider. Medroxyprogesterone acetate is used to temporarily stop your menstrual cycle.

IUD or Mirena®: is a type of intrauterine device that contains progestin. Sometimes the IUD is not strong enough at suppressing all endometriosis symptoms because it works locally inside the uterus, so an additional pill may be prescribed to decrease symptoms. A non-hormonal IUD does not help treat endometriosis.

Implants:

Hormonal implants such as Nexplanon® come in the shape of a tiny tube that is placed under the skin in the upper arm. The implant prevents pregnancy and reduces the size of lesions caused from endometriosis. It is an approved birth control method for up to 3 years. The implant is about the size of a toothpick and made of a flexible plastic that contains a type of progestin hormone medicine called etonogestrel.

Benefits:

• Progesterone-only hormone therapy can be effective in treating symptoms of endometriosis.
• The Mirena® IUD lasts up to 8 years.
• The IUD plus oral contraceptive pills can lessen bleeding and pain from endo.
• The Nexplanon® Implant is an approved method for years.

Possible side effects:

• Spotting or breakthrough bleeding can last for a few days until your body gets used to the medicine, or as long as you are taking it
• Bleeding or a regular period
• Breast tenderness, nausea, bloating, weight gain, and/or hair thinning
• Headaches, mood swings including depression, nervousness
• Bone density loss and increased risk of osteoporosis (thinning of your bones) when taken for a long time
• Some people may not have relief from their endometriosis pain

Hormonal treatment with GnRH agonists (gonadotropin releasing hormone agonists) and Add–Back and GnRH antagonist:

A GnRH agonist or antagonist is typically prescribed when other hormonal medications do not work in relieving moderate to severe endo pain. The goal of these medications is to stop the endometriosis from growing.

GnRH agonists/antagonist work by temporarily turning off your pituitary gland, which stops your ovaries from making estrogen and progesterone (so you won’t have a period). Since all of these medications lower estrogen levels, the possible side effects for all of the medications in this group are the same symptoms that women often have during menopause. To decrease these symptoms, your gynecologist should start on you something called add-back therapy. Add-back therapy is a small amount of progestin, or a combination of estrogen and progestin, that is just enough to treat menopausal symptoms but not enough to cause endometriosis symptoms.

Treatment with GnRH Antagonist: Elgonix (Orlissa ™) is the first GnRH antagonist developed to treat endometriosis. It was approved by the US Federal Food and Drug Administration (FDA) in July,2018. It is a daily pill taken by mouth and it is available in two doses. Benefits and possible side effects are similar to Lupron® and Synarel®.

Leuprolide Acetate (Lupron–Depot®): Leuprolide acetate is one type of GnRH agonist that is given as an intramuscular (in the muscle) injection (shot). It can be given either once a month or once every 3 months. Our GYN team prefers that you get the injection once every 3 months so you don’t have to come in for appointments every month. Please make sure that the shot comes in the 3-month form (blue box).

Nafarelin Acetate: Nafarelin acetate (Synarel®) is another type of GnRH agonist that comes in the form of a nasal spray. Synarel is started with one puff in one nostril in the morning, then another puff in the OTHER nostril at nighttime. This dosage may be adjusted depending on your symptoms.

Benefits:

• Low levels of estrogen cause your period to stop and endometriosis from growing.
• Low levels of estrogen stop endo from growing so your fertility is preserved.

Possible side effects:

• Bone density loss and higher risk of osteoporosis (thinning of your bones), especially when taken without a small amount of hormones (add–back therapy).
• Side effects may include hot flashes, mood swings, vaginal dryness, bone and joint aches, hair loss, low libido (lack of interest in sex), and possible short–term memory loss.
• Some teens may decide to stay on GnRH treatment with add-back therapy for longer than 12 months, as long as their bone density is checked and is normal.
• Some young people may not have relief from their endometriosis pain.

Combination hormonal treatment is very effective for treating endometriosis. Hormonal treatment doesn’t “cure” endometriosis, but it may help with controlling pain by stopping your periods and preventing endometriosis from getting worse. Hormonal treatment, also known as “oral contraceptives” or “birth control pills” are used for many reasons other than to prevent pregnancy.

What exactly are hormonal pills?

Hormonal pills contain the hormones estrogen and progestin, which are similar to the hormones that are normally made by the ovaries. There is also another type of pill that contains only one hormone (progestin), and is called either the “progestin–only pill”, or the “mini–pill”.

Are there different kinds of hormonal pills?

Yes. There are many different hormonal pills that come in a lot of different packages. The shapes and colors of the packages may be different but there are just two categories of pills: combined estrogen and progestin pills (these have both estrogen and progestin hormone medicine in them), and progestin–only pills that contain just progestin. Hormonal pills come in a 21–day pill pack or a 23, 24, or 28–day pill pack. The most common pill packs are the 21–day pack which contain all hormone pills and the 28–day pack contains 3 weeks of hormone pills and 1 week of inactive (placebo) pills. There is no “best” pill for endometriosis.

How do I know if hormonal pills are right for me?

Not everyone should take hormonal pills. You will be asked questions about your medical history, such as whether you or anyone in your family has a history of blood clots. In addition, you won’t be given estrogen pills if you have certain types of migraine headaches. There are different doses of hormones in different hormonal pills. Your gynecologist may prescribe a progestin–only pill if there is a medical reason why you should not take estrogen. Please tell your GYN team if you have migraine headaches or a family history of blood clots or strokes.

Are there other medical benefits of taking hormonal pills?

Yes. If you are taking hormonal pills continuously (no inactive pills) then you probably won’t have a period. Hormonal pills also lower your chance of getting endometrial (lining of the uterus) cancer and ovarian cancer, ovarian cysts, certain breast lumps, and may protect you from osteoporosis. Hormonal treatment can also improve acne.

What is the difference between “active” and “inactive” hormonal pills?

Active pills contain hormone medicine. If your pill pack is in the shape of a rectangle, the pills will be in 4 rows (7 pills in each row). The active pills are in the first 3 rows of your pill pack. The inactive pills are in the last row of the 28–day pill pack and DO NOT contain hormone medicine. If your pill pack is round, the pills will be in a circle. The active pills are the first 21 pills and the last 7 pills are the inactive ones, and are usually a different color.

If you are using a 21–day pill pack, all the pills are active. When you are on continuous hormonal treatment for endometriosis, you will take an “active pill” every day in a continuous pattern.

What does “cyclic” use and “continuous” use mean?

Cyclic use means taking all the pills in the 28–day pack (21 active pills plus 7 inactive pills), then starting the next pack. This method results in periods and is not routinely used for the treatment of endometriosis. Some individuals may use pills cyclically but have a period less often; packages may have inactive pills every 3 months. This is sometimes called “extended cyclic use.”

Continuous use means taking active hormone pills every day without a break. If you are using the 28–day pill pack, you will take 1 active pill a day for 3 weeks (3 complete rows) and then start your next pill pack. You will not take the last row of inactive pills; throw them away. If you are prescribed the 21–day pill pack, finish the entire pack (3 rows) and then start your next pill pack the next day. Do not skip any days between pill packs. Most likely you will not have a period while you are taking the pill continuously, at the same time every day*, but some people may have breakthrough bleeding. Having up to four periods a year is considered normal on this method.

*Tip: If you decide to take the pill in the morning, make sure it is at a time you will be awake on weekdays and weekends. Set your cell phone alarm to remind you to take your pill at exactly the same time every day. If you are even 20 minutes late you may bleed or have pain.

What are the side effects of hormonal pills?

Most young peoplehave no side effects when taking hormonal pills, but some may experience side effects. Each type of hormonal pill can affect each persondifferently.

Spotting: Breakthrough bleeding between periods may occur while taking the first three weeks of hormone pills, but this is not serious. This usually happens during the first two or three cycles (2-3 months). You should call the GYN team if the bleeding is heavier than a light flow, or lasts more than a few days. It is very important that you take your hormone pills at exactly the same time* to keep your hormone levels in balance. This will lower the chance of having breakthrough bleeding.

Tip: If you decide to take the pill in the morning, make sure it is at a time you will be awake on weekdays and weekends. Set your cell phone alarm to remind you to take your pill at exactly the same time every day. If you are even 20 minutes late you may bleed or have pain.

Nausea: You may feel queasy or nauseous at times, but this may go away if you take the Pill with a meal or a snack. If the nausea doesn’t go away, your gynecologist may prescribe a pill with less estrogen; or another method that bypasses the GI system, such as the vaginal hormonal ring.

Headaches: Some people may get mild headaches when they start taking hormonal treatment. Although headaches usually happen because of stress or other reasons, be sure to let your GYN team know if the headaches are severe or if they continue.

Mood changes: Mood changes or mood swings can happen when taking hormonal treatment. Exercise and a healthy diet may help, but if they don’t, you may need to change the type of pill you are taking.

Acne: Usually hormonal treatment helps cure acne, but some peoplemay get acne from a particular pill.

Weight: Some peolegain weight, some lose weight, but most people stay exactly the same when they are taking the hormonal treatment. The pill is “zero calorie” and has not been shown to decrease your metabolism.

Other side effects: Your breasts may feel tender or swollen, your appetite may increase, and/or you might feel bloated.

Most often, side effects go away within the first 3 to 4 months of taking the hormonal pill. If the side effects are severe or if they don’t go away after three cycles, your gynecologist may switch you to a different hormonal pill or talk to you about other types of hormonal treatments for your endometriosis.

Are there serious side effects I should watch out for while taking the hormonal pill?

Most young people who take hormonal pills have few or no problems. However, if you have any of the following problems, go to the closest emergency room right away.

Remember: ACHES

• Abdominal pain (severe)
• Chest pain (severe), cough, shortness of breath
• Headache (severe), dizziness, weakness, or numbness
• Eye problems (vision loss or blurring), speech problems
• Severe leg pain (calf or thigh)

Taking the Pill continuously means that you will take one active pill (containing the female hormones estrogen and progestin) every day without a break. This will help keep the lining of your uterus very thin and treat endometriosis daily. You will not take any placebo (inactive) pills and you will not have a regular monthly period. You may have some irregular spotting or bleeding as your body gets used to this new medicine, especially in the first 3-4 months.

1. To take the oral contraceptive pill, follow the instructions on the package. Your GYN team will also explain how to use your pill pack. You will be told to start taking the oral contraceptive pill on a Sunday, on the first day of your menstrual period, or on the day of your appointment with your gynecologist.
2. You should take 1 oral contraceptive pill at the same time each day until you finish the pack. The best time is ½ an hour after a full meal. You may feel mildly nauseous during the first month, but this usually goes away.
3. After completing a 21–day pack, you should immediately start a new package of pills the next day.

Do I need to take the hormonal pills at the same time every day?

Yes. Take the hormonal pill at exactly the same time* every day. A good time to take the Pill is at 6, 7, or 8pm every evening. It is not a good idea to take the Pill “when you wake up” or “before going to sleep”, as those times will vary on school nights and weekends.

*Tip: If you decide to take the pill in the morning, make sure it is at a time you will be awake on weekdays and weekends. Set your cell phone alarm to remind you to take your pill at exactly the same time every day. If you are even 20 minutes late you may bleed or have pain.

What if I forget to take one or more hormonal pills?

• If you miss 1 or 2 active (hormone) pills in a row, take the pill(s) as soon as possible and then continue taking 1 pill each day. You may take 2 pills on the same day (one at the moment you remember and the other at the regular time) or even 2 at the same time.

• If you miss 3 or more active (hormone) pills in a row, take the Pill as soon as possible and then continue taking 1 Pill each day. If you missed the pills in the third week, finish all the active hormone pills in your current pack, and then start a new pack of pills.
• If you are sexually active and have missed more than 2 pills, talk to your GYN team about whether you should use emergency contraception. Use condoms or do not have sex until you have taken active (hormone) pills for 7 days in a row.
• Note: If you are taking very low dose pills with just 20ug of ethinyl estradiol and miss 2 pills, you should follow the instructions for missing 3 or more pills.

You may have breakthrough bleeding (spotting) if you forget to take your pill on time; some people’s bodies are so sensitive that they will bleed if they take their pill just 20 minutes late. If you miss pills you may get an extra menstrual period.

What if I’m not happy with the hormonal pills that I’m taking?

If you are not happy with the hormonal pills that you are taking and the effects they have on your body, talk to your GYN team. Don’t just give up and stop taking the pills. Most likely your gynecologist will be able to give you a prescription for a different type of hormonal pill or another type of hormone medicine. There are many types of hormonal pills and they affect people differently. You may like some but not others. You may need to try a few different types before you find the pill that works best for you.

If you are unable to take estrogen or if you do not respond to combination (estrogen and progestin) pills, your gynecologist may prescribe progestin-only treatments such as Norethindrone (Nor-QD®, Camila®) Norethindrone acetate (Aygestin®), Drospirenone (Slynd®), or Medroxyprogesterone acetate (Depo–Provera®). These medicines stop your body from ovulating and your endometriosis from growing. Most peoplewill not have a period. Taking synthetic (man–made) progestin medication in this form is very similar to the natural progesterone that is made by your body during pregnancy.

Are there any reasons why I wouldn’t be able to take Progestin–only hormone therapy?

Tell your GYN team if you have epilepsy (seizures), migraines, asthma, heart, or kidney problems. You should not take any kind of progestin if you are pregnant; have cancer, unexplained vaginal bleeding or severe liver disease. You should also tell the team if you have diabetes, high blood pressure, high cholesterol or you have been diagnosed with depression in the past.

What are the side effects?

Most young peoplehave little or no side effects while taking progestin–only medication. Possible side effects can include breakthrough bleeding or spotting, changes in weight, acne, breast enlargement, feeling bloated, headache/migraines, nausea or vomiting, mood changes, and possible decrease in bone density (thinning of the bones).

Hormone medications can affect people differently. Some peoplewill have very irregular bleeding while taking progesterone–only hormone therapy, especially during the first 3-4months of treatment. Breakthrough bleeding is less common the longer you are on hormonal therapy.

How is Norethindrone acetate taken?

Norethindrone acetate (Aygestin®) is a pill that you swallow.

Starting Aygestin®: Take 1-2 (5mg) tablet at the same time every day as prescribed by your health care provider. At Boston Children’s Hospital, we currently recommend that you do not take more than 10 mg of Aygestin®/day. Of note, norethindrone acetate is a very strong progestin medication however it is NOT approved as a form of birth control. If you are sexually active and on this medication, you should utilize another method to prevent pregnancy such as condoms.4

How is Nor–QD® or Camilla® taken?

This progestin–only medication is a form of birth control that comes in a pill pack like regular birth control pills. There are 28 active hormone pills in each pack.

How is Slynd® taken?

This progestin–only medication is a form of birth control that comes in a pill pack like regular birth control pills. There are 24 active hormone pills in each pack and 4 inactive pills. You will likely be instructed to skip the 4 inactive pills and go straight to the next pack.

How is Medroxyprogesterone acetate given?

Medroxyprogesterone acetate (Depo–Provera®) is an injection that is given in a muscle (in the buttocks, arm or thigh) every 3 months. The first shot is usually given within the first 5 days of your menstrual cycle (during your period). If you are sexually active, a routine urine pregnancy test will be done first. The next shot needs to be scheduled within 11–13 weeks.

If your gynecologist has prescribed Leuprolide acetate (Lupron Depot®) to treat your endometriosis, please read the following important information.

• Leuprolide acetate (3-month formulation) is an injection (shot) that is given in the buttocks, arm or thigh every 3 months (12 weeks). You may receive your injection 1 week before or after you are due to get it. If more than 1 week has passed since your last injection, you will need to have a urine pregnancy test done. If it is negative, schedule an appointment to get your next injection in 10 days.
• Your health care provider will order the medication and it will be delivered to you by mail. Once you receive the medication and you have scheduled your appointment, you will then need to bring it (and the box it came in) with you to your health care provider’s office.
• Add–back therapy is Norethindrone acetate (Aygestin®) with or without estrogenIt must be taken at the same time each day.
• Oral contraceptive pills: If you are on oral contraceptive pills, continue the Pill for 3 weeks after your first injection. On the day you stop the Pill you will begin taking the add–back medication.
• Calcium supplements: While on Leuprolide acetate, it is important that you take a calcium supplement, as your body needs 1300 mg of every day.
• Eating and drinking foods that are high in calcium is also important.
• Vitamin D: It is recommended that girls take 600 IU (international units) of vitamin D every day. Vitamin D is a pill that can be taken with calcium.
• Your first period on Leuprolide acetate: Please be aware that you may have a heavy and painful period during the first 4–6 weeks after your first Lupron Depot® shot. After that, you will likely not have any more vaginal bleeding as long as you take the add–back therapy at the same time each day.
• Appointments to get your follow–up injection: Make sure you make your appointment on a day that your gynecologist sees patients.
• 6 month follow–up visit: After 6–8 months on Leuprolide acetate and add–back, you and your gynecologist will talk about whether or not you can continue on the medicine. If you do continue, you will be scheduled for a DXA .
• DXA Scan: Leuprolide acetate is not typically used beyond 12 months. If you and your gynecologist decide to continue the injections, you may be instructed to schedule a DXA scan, which measures your bone density.Be sure to schedule your DXA before your 9 month Lupron Depot® shot. Your gynecologist will need to review the results before you can have your next shot. A follow–up DXA will be done every 1–2 years as needed.
• It usually takes about 2–3 months to see an improvement in symptoms (while on Leuprolide acetate and add–back therapy).

Leuprolide acetate (Lupron Depot®) is a type of gonadotropin–releasing hormone agonist (GnRH agonist) medicine. GnRH agonist medications help to lower pelvic pain caused by endometriosis. Add–back therapy is the addition of a small amount of progesterone with or without estrogen. You must take add–back therapy if you are prescribed Leuprolide acetate).

How does Leuprolide acetate work?

This medication works by shutting off hormones made by your ovaries, so your estrogen (one of the hormones that cause your body to have periods) level is lowered. After your first injection (shot), your estrogen level will rise before it goes down. This is called an “estrogen surge”. Because of this rise in estrogen, you may have an increase in your symptoms for a few weeks. After the estrogen surge, your estrogen levels will go down. This temporarily stops your period. When you do not have periods, endometriosis symptoms are usually relieved.

How is Leuprolide acetate given?

Leuprolide acetate is an injection. It is very important to get your injection on time. Missed doses can cause breakthrough bleeding and the return of pain.

How long can I take Leuprolide acetate with add–back?

Leuprolide acetate alone is usually prescribed for 6 months (1 shot every 3 months). However, when you take it with add–back, you can almost always stay on it longer. After a few months of treatment, you will have an appointment with your gynecologist to see if the medicine is helping you. This appointment also gives your doctor a chance to ask you about your pelvic pain and any other symptoms you may be having. If your symptoms are better, they may suggest that you continue taking the medicine.

What are the side effects of taking Leuprolide acetate?

Taking Leuprolide acetate alone lowers the estrogen level in the body, which typically causes side effects similar to menopause. These side effects may include: hot flashes, vaginal dryness, decreased interest in sex, moodiness, headaches, spotting, and change in bone density. However, with the addition of “add–back” therapy, you will most likely NOT experience these side effects. If you do have symptoms, they are generally mild.

After the second month of treatment, your period will likely stop. However, you may have a light period or spotting during treatment. It is important to get your injections on time and to stop treatment when recommended.

What is “Add–back” therapy?

Add–back is a pill that contains a small amount of estrogen and progestin or progestin–only that is taken every day. Since hormones are important to keep your bones healthy, low levels of hormones can lower your bone density, putting you at risk for osteoporosis (thinning of your bones). The goal of add–back therapy is to give your body back just enough hormone(s) to protect your bones and control any unwanted side effects such as hot flashes and vaginal dryness that are common when taking Leuprolide acetate alone. Your gynecologist will decide on how much add–back medicine you will need, and give you a prescription. Add–back is either: Aygestin® 5mg/daily, or Prempro® 0.625/2.5mg/daily.

When do the effects of Leuprolide acetate go away?

The effects of Leuprolide acetate will decrease after you stop taking the medicine. If you’ve been getting Lupron® every 3 months, your period will usually return within 4 to 8 months after your last shot. If you’ve been getting Lupron Depot® every month, your period will likely return 6–8 weeks after your last shot. Bone density loss may be partially or completely recovered. This means that your bones may or may not be as solid as they were before you started the medicine.

Can I take Leuprolide acetate forever?

Research has shown that long term use of Leuprolide acetate alone can cause bone density loss. Bone density loss is a big concern especially if you have a family history of osteoporosis. Osteoporosis causes your bones to become fragile and break more easily. “Add–back” therapy can help prevent loss of bone density, which may allow you to stay on the medicine longer.

What is bone density?

Bone density is a measurement of how solid and strong your bones are. Bones need to be strong and solid so they do not break easily. Your teenage and young adult years are important for bone development. Weak bones during the teenage years may negatively impact your bone health later in life. Your bones need lots of nutrients, especially calcium and vitamin D. It is also important to eat a well–balanced diet and include foods high in calcium.

When will I be scheduled for a bone density test?

After you have been on Leuprolide acetate for approximately 6-8 months, you may be asked to take a bone density scan (DXA test). This is a simple test that measures how dense (or thick) your bones are and if your bones are thinning. If the DXA scan is normal and you continue on the medicine, you will need to repeat the DXA test every 1-2 years.

What can I do to prevent bone loss?

You will likely be told to take calcium and vitamin D supplements. Calcium works to build and maintain bone density. Vitamin D improves the absorption of calcium. Make sure to divide your daily dose of calcium if taking more than 500mg. Your body can only absorb so much at once. If you take a calcium supplement with vitamin D, make sure it contains at least 800 of vitamin D.

Can I get pregnant when I am on Leuprolide acetate?

Although this medication works by preventing ovulation (stops you from making eggs), there is a rare chance that you could become pregnant if you have unprotected sex. Thus, it is important to use a non–hormonal birth control method such as condoms while on this medication. The long-term effects to an unborn baby whose carrier was on Leuprolide acetate at the time of conception are unknown at this time, but it does not appear to cause birth defects.

Nafarelin acetate is the generic name for “Synarel,” a medicine that is used to treat endometriosis. It is a type of gonatropin-releasing hormone agonist (GnRH agonist) medicine. GnRH agonist medicines help to lessen pelvic pain caused by endometriosis.

How does Synarel work?

Synarel works by shutting off hormones made by the ovaries, so estrogen (one of the hormones that cause your body to have periods) is lowered. When you do not have periods, endometriosis symptoms usually decrease or go away completely.

How is Synarel taken?

Synarel is a nasal spray that is typically prescribed as: 1 or 2 sprays in one nostril in the morning and 1or 2 sprays (in the other nostril) in the evening (about 12 hours apart). It is very important to take Synarel at the same times every day without missing any doses.

Are there any reasons that I shouldn’t take Synarel?

You should NOT take Synarel if:

• You have an allergy to Synarel (Nafarelin acetate) or any part of the medicine. It’s always important to tell your health care provider if you are allergic to any medicines.
• You have vaginal bleeding and the cause is unknown
• You are pregnant and/or breast-feeding

*Make sure you tell your health care provider about all of the medicines you take including over-the-counter herbs and supplements.

Before starting Synarel you should:

• Have a pregnancy test (if you are having sex)
• Talk to your health care provider (HCP) about whether you are at a higher risk for bone density problems (how solid and strong your bones are) and whether you need to have a bone density test before you start the medicine.
• Know that it usually takes a few cycles to see an improvement in symptoms.

What are the possible side effects of Synarel?

All medications can cause side effects. Some people have mild side effects; most people have no side effects. Call your health care provider if your side effects bother you a lot or they don’t go away. Taking Synarel alone (without add-back) lowers the estrogen level in your body, which typically causes side effects that are similar to menopause. These side effects may include:

• hot flashes or feeling warm-hot with flushing of the skin
• moodiness
• decreased interest in sex
• acne
• vaginal dryness
• headache

Nasal irritation and/or a runny nose are also possible. Serious side effects are rare.

Other uncommon side effects that you should tell your health care provider about include:

• inflammation/irritation of your nose
• rash
• pain in your belly area
• heavy vaginal bleeding
• vaginal spotting/bleeding for more than 2 months
• sadness or symptoms of depression that lasts longer than 2 weeks
• trouble with remembering things

Where should I keep my Synarel?

• Store it upright, in a dry place (not in the bathroom)
• NEVER keep Synarel in the refrigerator or freezer
• Protect it from direct sunlight
• Keep it away from young children and pets

Synarel is usually tolerated well however sometimes some young people may have mild to severe reactions. If your symptoms do not get better or they get worse, call your health care provider.

1. Think about a way to remember to take your Synarel medicine- Example: Set your cell phone alarm.
2. Keep track of each dose of Synarel that you take. Ex. Using a calendar or checklist.
3. Use the bottle of Synarel for up to 30 days then open up a new bottle. If your health care provider or gynecologist increases your dose, you will likely run out of medicine before 30 days are up.
4. Prime the bottle of Synarel (before you use it for the first time).
a. Remove the white plastic safety clip from the neck of the bottle. (Do NOT throw it away)
b. Remove the cap from the nozzle tip. (Do NOT throw it away)
c. Hold the bottle straight so that the nozzle is on top.
d. Put two fingers (index and middle fingers) on the side of the nozzle (see photo). Your thumb should rest on the bottom of the bottle.
e. Press down evenly and firmly with your index and middle fingers. Do this 7-10 times until you see a fine mist.
f. Stop when you see the fine mist. The medicine/pump is now “primed”.
g. You only need to prime the bottle when you open it for the first time.
5. After you prime the bottle, you’ll need to: Clean the spray tip.
6. Hold the bottle side-ways and run it under warm water for about 15 seconds. Use a clean paper towel or clean cloth to dry the tip.
7. Place the white safety clip back on the neck of the bottle and cover the nozzle tip with the cap.
8. Never poke anything into the spray tip or take it apart.

Follow these directions EVERY time you take your medicine (Synarel)

1. Gently blow your nose before you use Synarel.
2. Remove and save the safety clip from the neck of the bottle.
3. Clean the spray tip by holding the bottle sideways. Rinse the tip under warm water for 15 seconds. Dry the tip with a clean cloth or paper towel.
4. Bend your head forward and place the tip of the bottle in your nostril. The tip should feel comfortable.
5. Aim the spray towards the back and outer side of your nostril.
6. With your other hand, place one finger on the opposite nostril and push it until the nostril closes.
7. Using even pressure, squeeze down on the sides of the nozzle/spray (pumping the spray 1 time) while you gently sniff in the mist.
8. Take the nozzle/spray tip out of your nostril and gently tilt your head back for a couple of seconds to allow the medicine to reach the back of your nose.
9. Clean and dry the medicine tip and replace the cap and the safety tip.
10. Store your medicine upright, away from direct light. Keep your medicine in a safe place away from young children and pets. NEVER store Synarel in the refrigerator or freezer.

Images used with permission from Pfizer

Why do I need to have surgery and medicine for my endo?

Endometriosis can only be diagnosed by laparoscopy. At the time of a laparoscopy, great care is taken to destroy any visible endo lesions (also called implants) and any adhesions. Some endometriosis isn’t visible, yet it responds well to medication. That’s why we combine medical and surgical therapy to treat this unpredictable disease. A study done at Boston Children’s Hospital strongly suggests that combined surgical and medical management prevents endometriosis from getting worse. This helps to preserve your fertility.

Will I ever need another laparoscopy?

Most people will not require any more laparoscopic procedures in the future, but some may. This depends on many factors, such as when your last procedure was, if you are having a problem with pain control while taking medication, and if your gynecologist feels it is necessary to check to see if there are any new endometriosis lesions. If your endometriosis has grown, the lesions will be removed and/or destroyed. The goal is to lower your pain and preserve your fertility.

In a study at Boston Children’s Hospital, Dr. Laufer and his colleagues were interested to find out if they would see more endometriosis at the time of a second laparoscopy (in young people diagnosed with endometriosis). They found that endometriosis did not get worse (didn’t grow) in clients who were treated with both surgery and medication.

Will I need to have my uterus removed?

You will NOT need to have your uterus removed (hysterectomy). All treatment will be aimed at relieving your pain and preserving your ability to have children in the future.

Will I be able to get pregnant?

Not being able to get pregnant (infertility) can result if endometriosis causes changes in your pelvic organs, including your fallopian tubes and ovaries. With early treatment, endometriosis should not affect your ability to become pregnant (when you are ready). Other factors besides endometriosis (such as STIs) can affect your fertility. It’s important to take good care of your reproductive health by always practicing safe sex.

Should I get pregnant soon to cure my endo?

You may have heard that “pregnancy cures endometriosis”. This is a myth. There is no cure for endometriosis at this time. Some people may have little or no endo–related pain during pregnancy, while others will experience pain. Becoming a parent is a big decision and should never be used as a treatment for endo.

How long do I need to be followed for my endo?

Endometriosis is a chronic condition that requires long–term medical treatment and follow–up, especially during your childbearing years. Many factors affect how often you will need to be seen by your medical team, such as whether or not you are responding to the treatment. If you are on medication, you will need to be checked and have your prescriptions refilled. For example: if your gynecologist gives you a prescription for medication to stop your period, you will need to schedule a follow–up appointment in approximately 3 months. During this visit, they will meet with you and discuss if the medication is working to stop your periods and pain. If you are feeling well and your blood pressure is normal, you will be given a prescription for more refills. If you are on Leuprolide acetate (Lupron Depot®) you will need to return for your shot every 3 months while you are on this treatment. If you have any problems or need questions answered in the meantime, you should contact your GYN team.

Should my sisters and other family members get checked?

You are more likely to develop endometriosis if a close relative from their mom or dad’s side has it. Likewise, if you have been diagnosed with endometriosis, and someone in your family (such as your sister, or cousin) has painful periods and pelvic pain that interfere with school and social activities, it is a good idea to suggest that they get evaluated. They can make an appointment with a pediatric adolescent gynecologist who has experience treating peoplewith endometriosis.

Do I need a pelvic exam before going on the oral contraceptive pill?

No. Although it is important for people to have checkups as part of their general health care, a pelvic exam is not needed for people with endometriosis in order to start oral contraceptive pills.

Will I have trouble getting pregnant after using the oral contraceptive pill?

There is no change in fertility with the use of the oral contraceptive pill. The pill does not hurt your ovaries or your uterus. However, if your period was were irregular before you started taking the Pill, it is likely that your periods will be irregular again when you stop taking it.

Does the oral contraceptive pill cause birth defects?

No. The Pill does not cause birth defects nor does it affect the health of future children.

Does the oral contraceptive pill cause cancer?

No. The Pill actually protects against cancer of the ovaries and cancer of the lining of the uterus. Most experts believe that taking oral contraceptive pills does not cause any increased risk of developing breast cancer. Even if you have a family history of breast cancer, you can still take the Pill.

How long can I be on oral contraceptives?

It is safe for you to be on the Pill for years and even decades, whether to regulate your menstrual cycle, treat your cramps, as hormone replacement, or birth control. It is important to be on hormonal treatment for endometriosis until you are ready to become pregnant, so that the disease does not progress.

Do I need to take a break from the Pill?

There is no medical reason that you need to take a “break” from the Pill.

 Where does the blood go?

When you are on the Pill continuously, the lining of your uterus does not build up. Therefore, you don’t get your period and there is no blood. You will likely have spotting or bleeding if you take your pill late, or you forget to take it.

Can I smoke if I’m taking the Pill?

It is NOT safe for you to smoke and take oral contraceptives. Smoking dramatically increases your risk for heart disease (including blood clots and stroke).

What if I am also using the oral contraceptive pill for birth control?

If you are also taking the oral contraceptive pill for birth control, you should know that oral contraceptive pills do not protect you from sexually transmitted infections (STIs). Condoms help to prevent most STIs, , and they are also an important backup method of birth control if you miss more than one Pill in a row, or if you are sick and throwing up. All of these factors can lower the effectiveness of the Pill. Whenever you get a new medication, ask if it changes the effectiveness of your oral contraceptive pill.

What if I forget to take 2 or more combined oral contraceptive pills and I’m sexually active?

If you have had intercourse during the time you missed your pills (and you don’t use condoms), talk to your GYN team about whether you should use emergency contraception. If you are 15 or older, you can buy “Plan B” without a prescription. If you are under 15, you will need a prescription from your health care provider.

How do I talk to my parents about taking the Pill?

If you are taking hormonal pills for the treatment of endometriosis, your parents may have some worries about you taking a pill that is also called the “birth control pill”. It’s best to talk openly with them about how the Pill will stop your periods and help lower your pelvic pain and other discomforts you may have. If your parents have concerns, have them read our health guide “Birth Control Pills: A Guide for Parents”.

How do I talk to my friends about taking the Pill?

You may not want to tell your friends that you are taking hormonal pills for the treatment of endometriosis. Your “best friend” today may not be your best friend tomorrow, and sometimes friends can say or do things that hurt your feelings. Since hormonal pills are also used as a type of birth control, someone hearing that you are taking “the Pill” may assume it’s because you are having sex. When it comes down to it, you really don’t have to tell anyone except your GYN team about your medical treatment. Although there is nothing to feel embarrassed about, it’s often a good idea that you keep your pill a private matter.

Active Hormone Pill: An oral contraceptive pill that contains estrogen, progesterone, or both.

Add–Back Therapy: Hormonal therapy prescribed to help females with the side effects of a class of medicine called GnRH agonists.

Bladder: The organ that collects and stores urine.

Bone Density: How solid and strong your bones are.

Break-through Bleeding: Light vaginal bleeding or spotting that can happen during the first month on oral contraceptive pills (OCP’s) or when switching to another kind of OCP, or when a pill is missed or late. Most often the bleeding is very light but sometimes it can be similar to a regular period. Break-through bleeding refers to bleeding when you do not expect it, such as when you are taking hormone pills and not inactive pills.

Chronic: A condition that continues for a long time.

Dysmenorrhea: Pain with periods, menstrual cramps.

Endometrial Cells: Cells from the lining of the uterus.

Endometrial Lesions (Implants): Tissue from the lining of the uterus that sticks and grows outside of its normal location.

Endometrial Tissue: Tissue from the lining of the uterus.

Endometriosis: A condition that occurs when tissue similar to the lining of the uterus is found outside its normal location.

Estrogen: A female sex hormone.

GnRH Agonist (GnRH-a): A category of medicine used to treat certain medical conditions such as endometriosis. This medicine works by lowering the body’s level of the hormone estrogen.

Gynecologist: A doctor with additional medical and surgical training in the area of female reproductive  health.

Hormone: A chemical messenger that is released by an organ or gland and then sent through the bloodstream to another part of the body.

Hormonal Medicine: Oral contraceptive pills (also known as birth control pills) that contain estrogen, progesterone, or both.

Immune System: The system in your body that protects against disease, infection, and foreign substances.

Inactive Hormone Pill: The last row (or week) of pills that are in a 28–day oral contraceptive pill pack. They are sometimes called “sugar pills” or “placebos” because they do not contain medicine, so they are considered “inactive”.

Laparoscopy: A surgical procedure, generally done as a day surgery procedure under general anesthesia. A small incision is made near the navel, and a lighted, thin tube is inserted to view the pelvic organs.

Menstruation: The release of blood from the uterus.

Menstrual Cramps: Pain in the lower abdomen (belly) during a period.

Nausea: Feeling like you are going to throw up.

Omega–3 Fatty Acids: Omega–3 fat is a “heart healthy” type of fat that your body needs. Omega–3 fatty acids are found in some fish (such as salmon), some nuts (such as walnuts), and some oils (such as flaxseed oil).

Organic Foods: Organic produce is grown without the use of pesticides, synthetic fertilizers, sewage sludge, genetically modified organisms, or ionizing radiation. Animals that produce meat, poultry, eggs, and dairy products do not take antibiotics or growth hormones.

Ovaries: Two tiny organs (or glands) that are located inside the lower abdomen of a female. The ovaries make the female hormones estrogen and progesterone.

Pelvic Ultrasound: A test that uses sound waves to make a picture of the reproductive organs; ovaries, fallopian tubes, uterus, cervix, and bladder.

Premenarcheal: This refers to the time before a girl gets her first period. “Pre” means before and “menarcheal” means menstrual period.

Trans Fat: Trans fat is a “heart unhealthy” type of fat. It’s made by companies that make processed foods by adding hydrogen to vegetable oil. Foods with trans fat will have the words “partially hydrogenated oil” in the ingredient list. Trans fat can be found in some margarines, fast foods, fried foods, and baked goods.

Ultrasound: A way to take pictures inside of body parts. Pictures taken by ultrasound are similar to x–ray photographs. However, when ultrasound is used, the images are made with sound waves instead of x–rays.

Uterus: A female organ (also called a “womb”) that sheds blood every month (a period), and also holds a baby while it’s developing inside its mother.

Endometriosis is an inflammatory condition that occurs when tissue similar to the lining of the uterus is found outside its normal location. Common locations of endometrial implants include the ovaries, fallopian tubes, ligaments that support the uterus, and tissue covering the bladder and rectum. The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms that both adolescent and adults have.

What are the symptoms of endometriosis?

Endometriosis causes different symptoms. Some people may have one or more of the following symptoms:

• Severe period cramps
• Chronic pelvic pain that comes and goes (throughout the menstrual cycle)
• Painful urination (pain when peeing)
• Diarrhea or constipation (loose or less bowel movements)
• Pelvic pain with exercise
• Pain after a pelvic exam
• Pain with intercourse (if sexually active)

The amount of endometriosis doesn’t always compare to the amount of pain a person may have. For example: Some people may have a lot of endometriosis and have very little pain, while others who have a small amount of endometriosis have severe pain.

How is endometriosis diagnosed?

The ONLY way to diagnosis endometriosis for sure is to have a procedure called a laparoscopy. This procedure allows a doctor to look inside the pelvic cavity with a special lens to check for endometriosis (implants). Other tests that are often ordered before a laparoscopy may include blood tests, vaginal cultures (to check for infection), an ultrasound and/or an MRI. These tests are done to “rule out” other possible causes of pelvic pain.

What causes endometriosis?

Although we know that some young women are more likely to develop endometriosis because one or more of their female relatives have it, we still do not know what causes the disease.

The three most accepted theories are:

• Sampson’s Theory: This theory explains that the flow of menstrual blood gets “backed up” causing some of the blood to flow in a reverse direction. This process causes blood containing endometrial tissue to attach to surfaces outside of the uterus.
• Meyer’s Theory: This theory proposes that specific cells (that are present at birth) called “metaplastic cells” change into endometrial cells.
• Vascular Theory: This theory suggests that the endometrial tissue “travels” through the body via the blood vessels. It then implants in the abdomen and grows, resulting in pain.

How is endometriosis treated?

If someone has severe menstrual cramps and/or pelvic pain that causes them to miss school, their doctor may want them to have a diagnostic laparoscopy. If endometriosis is found, treatment falls into the following categories:

• Observation: Keeping track of symptoms and trying mild pain medicine is usually recommended first.
• Lifestyle changes: Exercise, a healthy diet, and getting enough rest helps to manage pain. Relaxation techniques such as yoga and meditation can also help.
• Medical suppression: Hormonal treatment works by shutting off hormones made by the ovaries, which temporarily stops a person’s menstrual cycle and lowers the estrogen level.
• Surgery: A special instrument is inserted into a tiny incision or cut in the abdomen (near thenavel) while the person is  asleep under anesthesia. Visible endometriosis is destroyed or removed.
• Pain treatment services: Your friend, (sibling or partner) may be referred for pain treatment services where they may be evaluated for physical therapy, biofeedback, or another technique to help with pain control.
• Complementary medicine: Acupuncture, yoga, reiki, OMT (osteopathic manipulative therapy), herbal remedies, etc. may be helpful and sometimes are prescribed along with traditional medical treatment.

The goals of treatment should be aimed at relieving pain, controlling the progression of endometriosis and preserving fertility for future childbearing. Comprehensive and early treatment can make a big difference in improving a young person’s quality of life.

How can I be helpful?

It’s important to have a clear understanding of endometriosis; the symptoms, treatment, the possible side effects of each medicine, and how the disease impacts your friend’s (sibling, or partner’s) life. Letting them know that you want to help and being supportive will make a huge difference in the way she copes with her disease. You can be supportive by learning about their disease, being a good listener, and showing them that you care.

Here are some examples of how you can show support:

• Keep in touch: Text, e-mail, or call; especially on the days your friend (sibling, or partner) is absent from school.
• Take notes: Offer to pick up or drop off school work and copy notes in classes you share.
• Bring the social event to your friend’s house: If you’re planning a get together with mutual friends and your friend isn’t up to going out (because of pain), consider meeting at them home.
• Learn signs:Figure out a way that your friend can communicate when they are  in pain. Having someone who understands their pain threshold will likely give them confidence to socialize.

What else do I need to know about endometriosis?

• Youngpeople CAN suffer from symptoms of endometriosis.
• Endometriosis is NOT an STI (sexually transmitted infection).
• Chronic pelvic pain is NOT normal. Most young people have none or mild menstrual cramps one or two days a month. If your friend (sibling, or partner) is absent from school or work a lot because of pelvic pain and/or menstrual cramps or has pain in their lower abdomen (belly) that isn’t relieved with over-the-counter pain medicine, tell her to make an appointment with their health care provider.
• Endometriosis occurs among young and older people of ALL RACES
• Getting pregnant does NOT cure this disease, but may improve symptoms for some people. Some people with endometriosis who have given birth continue to have pain.

Frequently Asked Questions:

What is it like to live with endometriosis?

Having endometriosis can definitely add to the everyday stress of being a teen or young adult.

• People with endometriosis have a significant amount of pelvic pain and menstrual cramps.
• A young person’s pain is often misunderstood, perhaps because they dont necessarily “look sick”.
• People with endo often miss school and frequently turn down social invitations because of pain. This can lead to feelings of isolation and depression.

How common is endometriosis among teens born with female reproductive organs?

It’s not uncommon for a young person to have endometriosis. If endometriosis runs in the family, a young person may be more likely to have it than someone else with no family history. A research study done at Boston Children’s Hospital found that endometriosis was the most common diagnosis for people with chronic pelvic pain who had undergone a diagnostic laparoscopy.

How often does a young person need to be seen by her GYN (gynecology) team?

This depends on: the type of medication they are prescribed, how well they responds to treatment, and whether or not she has other gynecological issues. For example, if they are  on a medicine called Lupron Depot®, they will need to return for their shots either monthly, or every three months, depending on the prescribed dose. If they are  being treated with birth control pills, they will  likely have follow-up appointments about every three months. They may return earlier than their scheduled appointments if they experiences side effects or feels the pain is not getting better. At the very least, they will need to have a check-up with their gynecologist once a year.

If a young person is on birth control pills for endometriosis, does it mean she’s having sex?

Birth control pills (also called hormone pills, oral contraceptives or “the Pill”) are almost always prescribed to young people with endometriosis. Being on the pill does not mean that the person is having sex.

How can I help my friend get to school?

One of the primary goals of treatment is to successfully manage your friend’s (sibling, or partner’s) pain. Their treatment plan is specially designed to lessen their symptoms that often get in the way of going to school, participating in activities, and socializing with friends. You can encourage your friend (sibling, or partner) to go to school even if it means going in later or getting dismissed early. If they are absent, you could offer to pick up school-work for them.

How can I help my friend (sibling, or partner) get out and do things?

Understanding what your friend (sibling, or partner) is experiencing in terms of pain will help you know why they may feel anxious about going out. You can let them know that you will be with them and that she has the option of going home early if they are in pain.

Sometimes plans you have made with your friend, sibling, or partner may need to be adjusted because they are tired or in pain. This doesn’t necessarily mean that you can’t get together. Choosing more relaxing activities, or meeting at their house is better than not including them in your plans.

How can I tell if my friend (sibling, or partner) is depressed?

If your friend, sibling, partners or someone you love is having trouble sleeping, is not interested in social activities, has a loss of appetite and/or change in weight, they may be depressed. It’s important to tell your friend’s (or partner’s) parents/guardians and encourage them to make an appointment with their GYN team. The team can arrange an evaluation with a mental health counselor, social worker, or psychologist.

Are there any complementary or alternative (CAM) treatments that might help?

Although there is limited data that supports the effectiveness of CAM therapy in the treatment of endometriosis, some research studies suggest that CAM therapies such as acupuncture, pelvic floor physical therapy, transcutaneous electrical nerve stimulator (TENS) unit, and yoga are helpful in controlling pelvic pain. Pain Treatment Centers are often located in major hospitals and provide services to evaluate young people with endometriosis. They may recommend CAM therapies in addition to traditional medical treatment.

Young people with endometriosis usually have certain symptoms. The following quiz was created to help you find out if you have one or more of the most common symptoms associated with endometriosis. This quiz is designed as an educational tool and is not a substitute for medical advice by your health care providers. The only way to diagnose endometriosis is to have a surgical procedure called a laparoscopy.

If you answer “Yes” to one or more questions, you may have symptoms(s) that could be related to endometriosis. It’s important to tell a parent or guardian and talk about making an appointment to see your health care provider. This is especially important since many endometriosis symptoms are very similar to symptoms caused by other conditions such as: irritable bowel syndrome, lactose intolerance, appendicitis, as well as sexually transmitted infections (STI’s).

• I miss a few or more days of school every month because of menstrual cramps.
• I have to take pain medicine because my cramps are so bad.
• I am absent from school because of pelvic pain in between my periods.
• I don’t participate in social events because of pain in between my periods.
• I have to take pain medication for pelvic pain in between my periods.
• I have pain most of the time during sexual intercourse.
• I have pain in my lower belly when I exercise or play sports.
• Yes. I have a close relative (mom, grandmother, sister, aunt) with endometriosis.