The best thing you can do to understand your child’s diagnosis is to learn all you can about endometriosis. It’s helpful for both you and your child to maintain an ongoing list of questions for your child’s GYN team. The doctors, nurses, and social workers will assist you and your child in understanding their diagnosis and the treatment options at all stages of their treatment.

What is endometriosis?

Endometriosis, pronounced, “end–o–me–tree–o–sis” can affect anyone born with female reproductive organs, regardless of their age. It is a 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 tissue covering the bladder and rectum. The most common locations of endometrial implants in teens are in the cul–de–sac area (behind the uterus), and near the bladder.

What are the symptoms of endometriosis?

Endometriosis causes different symptoms in teens. Pelvic pain and/or severe period cramps are the most common symptoms. There can be pain before, during or after a period. The pain may occur at regular times in the menstrual cycle or it may occur at any time during the month. It is often referred to as “chronic” pelvic pain.

The location of the endometrial implants and the way in which the lesions affect the pelvic organs contribute to the symptoms people may have. Some people may have pain with exercise, sex, and/or after a pelvic exam, others do not. Although not as common, some people may have painful or frequent urination, diarrhea or constipation with pelvic pain. 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 young people may be slightly more likely to develop endometriosis because female relatives have it, the fact is we do not know the cause of 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.

Important facts about endometriosis:

• Teens 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 people have no or mild to moderate menstrual cramps one or two days a month. If your child is absent from school because of pelvic pain or menstrual cramps, tell their GYN team.
• Endometriosis occurs among people born with female organs, regardless of their race.
• Endometriosis is NOT an STI (sexually transmitted infection).
• Getting pregnant does NOT cure this disease but may improve symptoms for some people. Some people with endometriosis who have had children continue to have pain.
• If your teen’s pain makes them feel at all disadvantaged compared to other people their age, this is NOT normal. Your child should not “normalize” their symptoms. If your child doesn’t feel like they are equally capable as other teens their age (because of pelvic pain), they should tell their gynecologist.

Additional Resources

Even though everyone experiences pain differently, it can be helpful for you as a parent/guardian to think about the pain in two ways: the physical pain your teen experiences, and how it impacts both their life and that of the entire family. Your child’s physical pain may include ongoing pelvic pain, painful periods, and less often, bowel and bladder problems.

How this pain impacts their 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). Their chronic pain can take a toll on family members and other important people in their life, causing added tension and stress. For all of these reasons and more, both you and your child may feel frustrated because their health feels out of your control.

They should be able to:

1. Identify their physical pain symptoms
2. Identify how their pain impacts their life and that of your family

It is not unusual for one family member’s physical issues to dominate the family system, particularly around the time of diagnosis AND when there is chronic pain. It is important for parents to consider developing their own strategies for remaining calm in the face of stress due to a child’s illness.

Stress–Relieving Techniques: Learning to manage life stress is important under any circumstance, but it is essential when you are living with someone who experiences chronic pain. Many young people with endometriosis feel overwhelmed with managing both their pain and their stress. You may feel overwhelmed at times, too. You can encourage your child to effectively manage their stress by helping their incorporate the following techniques into their daily life. You may also want to try these techniques to help manage stress.

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

• Exercising
• Sleeping 8–9 hours each night
• Taking naps when needed
• Meditate daily
• Eating 3 healthy meals a day with nutritious snacks in between
• Doing things they enjoys when they feels well
• Staying in touch with their friends in person, by phone, or online
• Keeping up with their schoolwork (so they don’t  feel overwhelmed or get behind)
• Learning yoga
• Learning when to push themselves and when not to
• Keeping to routines as much as possible
• Planning ahead with them for unexpected “flair–ups” of pain
• Talking to a counselor

Write down any additional things that you have tried to encourage your child to do that have been successful.

We hope that your child will develop them own personalized list of things to do when they are experiencing a pain flare–up. The list may include things such as taking a warm bath or shower, lying down with a heating pad, using a transcutaneous electrical stimulator (TENS) unit, doing yoga poses, reading a good book, watching a favorite TV show, movie, or listening to music. It’s important that this be THEIR list of techniques that they find useful and accessible when they need it!

Managing pelvic pain at school: Does your child’s endometriosis pain get in the way of plans to attend school or their ability to stay for a full day? Does their academic performance sometime suffer due to absences, missed assignments or difficulty keeping focused? It is not uncommon for families to experience tension due to poor school attendance and performance issues. Dealing with pelvic pain in a school setting can be very stressful, for both you and your child, particularly if teachers and school nurses are not familiar with endometriosis and are unaware of the pain your child must cope with on most days.

Below are some of the realities of being a parent of a teen with chronic pelvic pain. Also included are suggestions on how to help them deal with the symptoms of endometriosis while at school. Note that ALL of the tips depend on being prepared.

• Know their pain tolerance threshold. Your child’s pain will likely be mild some days and severe on others. Encourage them to use a “Pain and Symptom Tracker” to track both pelvic pain and any related discomfort they experiences each month.
• Talk with your child about what they can tolerate in school and what they simply cannot manage. This is best done during a pain–free time when you are both calm and are thinking clearly.
• Urge them to communicate with close friends about what it’s like to have endometriosis, why they sometimes misses school or activities, and how they can be supportive.
• With your child, identify an adult contact person at school. For example, you or they can ask the school nurse, a favorite teacher, or class aide to be a “point person” they can go to for support. Choose someone with whom you both feel comfortable sharing your child’s endometriosis history, and who can be supportive and available during the school day.
• Share information about endometriosis only with your child’s permission with the contact person, as well as teachers, school nurse, coaches, and friends. Those around your child are likely to be more understanding and supportive if they know what endometriosis is, and how it impacts their life.
• Make a plan for pain at school. Encourage your child to talk with the school nurse and find out if there is a place at school where they can lie down if they have severe pain.
• Urge your child to identify a person in each class (friend or teacher) who will e–mail their homework assignment if they miss class.
• Make sure your child has enough time in the morning to get ready for school. They may need to wake up earlier than their friends or siblings to get ready, especially if they are having pain.
• Don’t assume that every day your child wakes up in pain means that they have to stay home from school, or that the day is “lost to pain.” They should go to school every day even if they have some pain in the morning. It may be that their pain will get better or go away once they gets moving and is distracted. If their pain becomes unmanageable later in the day, they will have the option of getting dismissed.
• Maintaining a healthy lifestyle is essential for all teenagers. Your child should eat nutritious meals and healthy snacks and get at least 8–9 hours of sleep every night. They should also try to do some kind of physical activity every day, regardless of the pain. Activities could include, walking, riding their bike, dancing, playing a sport, etc.
• Do your best to help your child stay on top of their schoolwork. If they need extra help with a particular subject(s), they should talk with their teacher before the school work piles up. If they have to be absent from school for more than a week, you can look into arranging a home tutor.
• It’s necessary for your child to keep in touch with their friends. Even when they are absent from school, they should try to talk to at least one friend every day either on the phone, via text messages, e–mail, or on a social networking site. They will feel less isolated and it will be easier for them when they return to school.
• Be proactive. Encourage your child to make a list of things they can do to manage their pelvic pain at school. Offer your help with any tasks that would benefit from adult assistance.

Managing activities, friendships, and chronic pain: As a parent or guardian you are aware that living with chronic pain can impact all areas of a person’s life, even those areas that are typically fun and enjoyable. Your child’s pain from endometriosis can sometimes get in the way of being able to do things with friends both on a daily basis and for special events. Their friends, family, coaches and teachers may appear frustrated and discouraged when their pain causes them to decline social invitations or when they appear to avoid activities. Your child may even worry about canceling plans too many times with their friends or not being a “good friend.

One technique that other parents find helpful is to plan strategies that your child can use to deal with unexpected pain in social situations.

Here are some thoughts and advice from parents of teens with endometriosis:

• Suggest that your child be in touch with at least one person outside of your family every day.
• Encourage your child to 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 for them to be home.
• Make sure their close friends, coaches or activity directors understand that their pain is a real medical condition. Educate them with information about endometriosis.
• Is there an activity your child really wants to do but is scared about fulfilling the requirements or keeping the commitment? Many group activities require a wide variety of participants in many roles. They can explore the options with the group leader, explaining that they want to be involved in any way that they can handle.
• Plan ahead. Does your child have an event coming up that feels more stressful than fun? They can go back to their personalized list of coping strategies in anticipation of pain.
• If they do have to cancel with friends or family, or either of you realize they can’t participate in an activity as planned, try to take it in stride: explain promptly, offer alternative options, and help them to take care of their pain. Their friends, family, and others will respect them more for being honest rather than not showing up without an explanation.

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

• Yoga involves a series of poses and gentle stretches. There are many different kinds of yoga. You and your child can explore yoga classes at your local YMCA, health center, and yoga studio. Many teens find it helpful to take yoga classes. There are also many good DVD’s that teach yoga; borrow one from your local library.

• 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 stretching 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, rectum, and vagina. These muscles help control many functions including your ability to pee, poop, insert a tampon, have sex. 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 releases 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 therapy is another complementary practice which some teens with pelvic pain find helpful. There are several kinds of massage therapies available. Massage treatments are often combined with gentle heat.

You may be wondering if there is anything in addition to taking medication that your child with endometriosis can do to feel better. Since healthy nutrition and exercise play an important role in maintaining overall health, choosing foods that are high in vitamins and minerals, and exercising each day will help keep their body healthy.

Is there a special diet for teens with endometriosis?

The good news is that we know some foods can boost our immune system, which in turn, protects our bodies from some illnesses and diseases. Unfortunately, there is limited research on whether certain foods can help improve endometriosis symptoms. Some young people with endometriosis say they feel better when they eat a healthy diet, and some experts believe that eating certain foods can help endometriosis symptoms by lowering estrogen and reducing inflammation.

Consider making changes that can improve your child’s health and your overall health too:

• 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 that my teen is getting all of the nutrients she needs?

Your teen should aim to eat a balanced diet with lots of fruits and vegetables, whole grains, plant–based protein, lean meats, and healthy fats. Eating a well-balanced diet can help them get the vitamins, minerals, and other nutrients they need to keep their immune system and body healthy. You can help your child achieve this goal by stocking the fridge with lots of fruits and vegetables and keeping healthy snacks made from whole grains in the cupboards. Choose meats that are lean and include chicken, fish, tofu, and nuts for protein.

Should my teen take a vitamin supplement?

If your child eats three balanced meals each day along with healthy snacks, they are probably getting most vitamins and minerals through the foods they eat. If they aren’t eating foods from all of the food groups on a regular basis, they may benefit from taking a daily multivitamin to make up for any of the vitamins or minerals they are not getting in their diet). Encourage your teen to talk to their health care provider to see if they should take a multivitamin or other dietary supplement(s).

Does my child need to take extra calcium and vitamin D?

Some endometriosis medications work by lowering estrogen levels. If your child is on an estrogen–lowering medication for more than 6 months, they may be at risk of developing osteoporosis (brittle bones). Encourage your teen to ask their gynecologist or their primary care provider to see if they should take calcium and vitamin D supplements to help protect their 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 exert an estrogen–like action in the body.

It’s always best to talk with the GYN team before your teen decides to take any over–the–counter herbs or dietary supplements.

What information should I pay attention to on food labels when I’m grocery shopping?

It is always important to pay attention to food labels when grocery shopping. The nutrition facts label is on most foods (except fresh foods such as fruits, vegetables, and meats) and has important information about portion size and nutrient content.

Will exercise make my child’s endometriosis symptoms worse?

Probably not. In fact, exercise may actually improve their endometriosis symptoms. Daily exercise (about 60 minutes each day is recommended for teens) such as walking, swimming, dancing, and other cardio activities will help them  maintain a healthy weight and give them energy. It’s a good idea for your child to check with their gynecologist or physical therapist to find out whether it’s okay to participate in very active sports or other high intensity exercise. Occasionally very active exercise such as running and jumping may bring on or increase endometriosis symptoms or other medical conditions. Encourage your child to communicate with their health care providers and ask questions about finding the  right amount and type of exercise that’s best for them.

• Exercise releases endorphins. When we exercise, our brain releases “feel good” chemicals called endorphins. These naturally occurring hormones work similarly to pain relievers to lower pain. It only takes about ten minutes of moderate exercise (any exercise that makes you sweat or breathe hard) for our bodies to start making these chemicals.
• Exercise improves circulation. Moderate exercise gets our heart pumping and improves the blood flow to our organs. This is important because blood carries oxygen and nutrients to important 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.

Your child spends a big part of their day in school where they needs support and guidance to deal with intermittent pain, fatigue, school absences, and other issues associated with endometriosis. As a parent you are your child’s strongest advocate. Adolescence is a challenging time for teens and for their parents. Both teens and their parents have described “feeling like they are on an emotional roller coaster”. Combine adolescence with a chronic illness and the results can seem overwhelming. For parents it is especially hard to watch your child experience emotional and physical discomfort due to a medical problem. You probably want to do whatever it takes to fix the situation quickly; however, this is not always possible.

How can I help my daughter deal with her endometriosis?

From the beginning, you should encourage your child to take part in their treatment plan so they can learn to manage their health care needs, such as communicating with their health care providers (HCP’s) and keeping track of their pain and periods. They can also be involved with making medical appointments and getting prescriptions filled. By learning to advocate for themselves as well as how to effectively interact with their HCP’s, your child will be better equipped to transition into adulthood. Your child’s health care team can help them work towards this goal. If available, a social worker or counselor specially trained to help teens cope with chronic illnesses can be of great support.

First, consider the following questions:

Is there a way to predict when my child will have acute pain?

There may or may not be a pattern to your child’s pelvic pain and there often is no predictability to when it will come or when it will cease. In fact, a young people could be fine and suddenly have an acute bout of pelvic pain. This may inhibit your child’s ability to participate in sports or other activities, or their perception that they can participate. Acute pain is also likely to affect their academic performance. Evaluation of sudden or acute pelvic pain often requires a medical consultation and diagnostic tests to rule out other possible reasons for their pain (such as appendicitis or pelvic inflammatory disease), even if they have an active diagnosis of endometriosis.

How can I advocate for my child at school?

The most important thing you can do to advocate for your child, (along with their help) is to develop an “endometriosis education plan” for their teachers, school nurse, coaches, and other important adults in their school. The more accurate information their school faculty has, the more they will comprehend the diagnosis of endometriosis and how it affects them specifically. Any student with endometriosis should be evaluated on an individual basis so that specific needs can be addressed. As a parent you can encourage your child to take an active role in their education. When your child has a chronic illness this includes considering both academic AND medical issues that impact their school experience.

Before school begins, schedule a meeting with school staff: Many parents contact their child’s school and make an appointment to meet with their child’s guidance counselor and school nurse prior to the beginning of the school year. If you are unable to make an appointment before school begins, try to schedule the meeting within a couple of weeks after school starts. Some parents and child’s decide that it’s better to wait until after school starts so the faculty has the benefit of meeting your child first to help them identify their needs and/or challenges. Your child should be given the opportunity to participate in all of these meetings (phone calls, e–mails) so that they can express any concerns they may have. It is essential for them to feel a part of the discussion, which is, after all, about their body.

Sometimes, parental involvement may be perceived by school staff as overprotection. You are not being overprotective. You are simply advocating for your child and educating the adults who have the most contact with them during the day about the challenges they face with endometriosis. Your goal should be to foster a spirit of collaboration between your family and your child’s school so that they are able to thrive academically. Keep in mind that it takes time for some accommodations to be made; therefore it’s best to address your child’s needs as soon as possible in the school year and update the plan as things change, or at least once a year.

What can my child and I do to prepare for a meeting with school staff?

In preparation for the initial meeting at your child’s school, we encourage both you and your child to put together packets for the school staff with information about endometriosis. The initial information you provide should be concise and to the point so that the staff can have time to read it and understand the essential facts about endometriosis, such as the guides from youngwomenshealth.org. These guides are intended for educational purposes. You may want to add additional information for the school nurse, such as a list of your child’s current medications. Find out what the state regulations are regarding students carrying and/or taking medications during the school day. Other information, such as medical history and names/numbers of health care providers, should be shared only with your child’s permission and only if you both feel it’s necessary.

What are the goals of the initial school meeting?

Your job at the meeting is to advocate for your child and establish credibility with the staff. If your child doesn’t look ill, teachers may assume they are fine and not understand why provisions are necessary. You’ll need to discuss the symptoms of endometriosis including the sudden onset of pain and the side effects of their treatment. Be clear that symptoms of endometriosis manifest themselves in different ways depending on the person. Response to treatment is also variable.

A plan to address missed schoolwork should be established in the event your child is absent from school due to their endometriosis. It is often helpful for your child to have a “point person” in each class who will automatically contact them with homework assignments if they miss class. Both you and your child should keep in mind that every student must complete a certain amount of school work. Every effort should be made so that they don’t fall behind. Since teens with endometriosis often experience times of pain and fatigue, keeping up with school work can be challenging and requires good communication and cooperation from everyone involved.

Plan a follow–up meeting mid–fall or after the first report card. At this time both you and the school will have a good idea how well your child is doing academically and if there are any areas in which they needs help. The number of their absences will also be recorded, as well as “late days”. If necessary, a home tutor can be discussed. Your child should be encouraged to share their perception of the school year thus far: what has worked, what has not been helpful, and any other input. It’s important that they feel empowered to advocate for themselves. They may feel more comfortable writing down their concerns and sharing them with both you and their teachers on paper; regardless, their input is essential.

Check in with the team again at the end of the school year. Discuss your child’s school year and consider their grades, school absences, visits to the nurse’s office for pain management concerns and any other issues that have come up throughout the school year. This is also a good time to reflect on the successes and put a preliminary plan in place for next year with any anticipated modifications. If your child has an IEP (Individual Education Plan) or a 504 plan, you both may want to consider including input from representatives of these plans.

Below are some examples of school interventions contributed by parents of teens with endometriosis. Remember that the best advocacy you can provide for your child is based on their needs, so use the following information only as a guideline.

• Assignments could be modified during periods of frequent absences.
• A folder with their homework assignments could be kept in the office so a parent could pick it up at the end of a school day.
• Time could be extended for class work and make–up work.
• Extra time could be given to get to class. The distance between classes may be a factor.
• Assignments could be given out the day before their medical appointments so that they can complete the work ahead of time.
• Your child’s school schedule could be adjusted to give them study or rest periods during the day and still meet academic requirements.
• Homeroom could be reassigned so that it is closer to their classes and their locker.
• Keeping an extra set of books at home will reduce their daily backpack load.
• A home tutor could help them keep up with missed work so that they are not overwhelmed when they returns to school. Some schools have peer tutors, such as National Merit Scholars, who can be very helpful in “keeping up”.
• Your child should have unlimited access to the nurses office. Teachers should be sensitive to any complaint and have them go to the nurse office for a consultation.
• An Individual Education Plan (IEP) could be implemented according to federal/state regulations. The Individuals with Disabilities Education Act (1975) mandates that anyone who is physically challenged be given an appropriate public education under the least restrictive circumstances. This is a federal law that provides for accommodations. If your child qualifies for a 504 plan it is important to have this in place BEFORE they go to college, as these accommodations will extend into their college years. You can get information about the requirements from the school’s Special Education department.

What should I do if my child refuses to go to school (on any given day or several days in a row)?

Despite the best laid plans, there are going to be some days when your child feels that they are unable to go to school due to pelvic pain, fatigue, or both and you are questioning their decision. There are several things you can do to both anticipate days like this and deal with them as they come up. It is essential to determine beforehand, when your child is feeling comfortable and calm, the criteria for staying home. Have a conversation with your child about both tolerable and intolerable levels of pain. Discuss what things they can do to manage the pain in school and remind them of their support system. If you both operate on the assumption that they must go to school every day, even for part of the day, it will be easier to make an infrequent adjustment. Make sure they are getting up early enough every day to get ready for school, have breakfast and take their medication before they decide that their pain is intolerable. Sometimes it is useful to discuss the academic consequences of missing a given day (for example: having to reschedule a test, missing a deadline, creating an overflow of homework) and a compromise can be reached. Ultimately, you, your child and the school need to develop a balance between responding to both their academic responsibilities and their endometriosis.

Is it normal to feel overwhelmed sometimes?

Yes! Having a teen with a chronic illness can be exhausting even if you have total cooperation with school staff, family, friends, and your child!

Other parents of teens with endometriosis share your concerns and offer the following tips:

1. Take care of yourself first. The more calm perspective you have on the situation, the better for everyone.
2. Take walks or exercise to clear your mind.
3. Listen to relaxation material and/or take a yoga class.
4. Enjoy time with your friends and family.
5. Use a journal to record your thoughts and feelings.
6. Talk with other parents of children with endometriosis.
7. Spend time with your child that is NOT focused on endometriosis.

Planning for the day when your child goes off to college is a time filled with mixed emotions. As a parent you probably know that college life will open new doors opportunities for your child,and it is also a time in their life when they will be growing personally. Their job will be to learn how to take care of themselves and live independently. It can be difficult for both of you while they are learning how to manage their life, since they may be making decisions on their own for the first time. For your child, college is a chance to make new friends, try new activities, learn new things, and set up a home away from home. For you, it is a time of adjustment and letting go. Allowing your child to advocate for themselves and problem solve may be a tall order if you have been managing most aspects of their life, including their health issues. However, it is likely that they have gradually taken on more responsibility during the last few years.

Should my child know about their health insurance coverage?

Yes. It is important that your child know exactly what kind of health insurance coverage they have. For example, some insurance policies will only provide coverage until a child is 18 or 19 years old. Other policies may continue to provide coverage beyond this age, if the child is a full–time student. Tell your child how long they will be covered and give them the contact information along with an insurance card. You or your child can check with the admissions department at their college to see if they need to buy an additional “student insurance policy” while they are a student. If you know they are not covered by your family’s insurance plan while at college, make sure they signs up for a special “student insurance policy.”

Most insurance companies require a student to complete a form every year documenting that they are a full time student. If they don’t complete the form, the insurance company may not cover your medical bills. Complete the form!

1. How long will my child have insurance coverage? (For example, up to what age are they covered? Do they 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 they contact the insurance company within a certain amount of time if they requires emergency services?
4. Is there a waiting period for certain services?
5. How much is the co–pay for general medical, specialty, and urgent care appointments?

What does my child need to know about the health services at college?

They will need to find out:

• When the Health Center is open
• What kind of services are provided
• Who can they talk to if they  have any issues related to their endometriosis
• How to reach someone if they have concerns or questions
• If there is a health care provider at the Health Center that has experience in caring for teens with endometriosis. (If so, they should get the name and number before they need it.)
• If someone at the Health Center can administer their Lupron Depot® injections (if applicable)

Is there anything my child should do (because they have endometriosis) before they leave for college?

1. Tell them to make appointment with their gynecologist 1–2 months before they leaves for college.
2. Encourage them to keep at least a 1 month record of their pain and symptoms and bring it with them to the appointment.
3. Stress that it is very important that they tell their gynecologist about their concerns, symptoms, what helps to relieve the pain and what makes it worse.
4. Suggest that they talk to the GYN team about a plan for when they experiences pain or other symptoms while away from home. (This will give them control and comfort).
5. Be sure to have your child gets their prescriptions filled with enough refills to last until they returns for a follow–up appointment. It is also a good idea to get the name and number of a pharmacy near their college campus.
6. Have them schedule follow–up visits with their gynecologist ahead of time so they can be seen during semester breaks.
7. Help them request a copy of any recent operative notes from the medical records department (if they have had surgery for endometriosis) from the hospital where they have been treated. Advise them to put the reports in a notebook/binder and bring it with them to college with other important papers and/or ask the Health Center at school to keep a copy on file.

Should my child find a gynecologist near their college?

If your child will be attending a college that is far away from home, you and your child may decide that having a local health care provider or a gynecologist is best for them. It is a good idea to schedule an appointment with their new gynecologist before they starts classes so they can establish a relationship. They can help the communication among all of their health care providers involved in their care by providing each of them with a list of all of their medical providers, and a brief description of their roles in their 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 they are taking and any side effects or allergic reactions they have had in the past. Creating a timeline of when their symptoms began, date of surgeries, etc., is also very helpful.

Should my child talk with their professors about having endo?

Some teens find that talking to their professors about their endometriosis is helpful. Your child may feel awkward at first about approaching their professors. However, most college faculty appreciate students who come to them early on in the semester if there might be a problem that could potentially affect learning. If they find that their courses are challenging because of pain from endometriosis, they should definitely speak with their professor(s) again. The longer they wait, the more overwhelmed they may become. You can explain to them that they do not have to give detailed information about their medical condition unless they wants to. They can simply explain that they have a “chronic disease with chronic pain”. Since endometriosis affects approximately 5 million people born with reproductive organs, they, may find that their professor is familiar with it.

Is there anyone else my child should talk to about their endo?

It can be helpful to have 1–2 designated people at your child’s college Health Center as their “liaisons” – one person to whom they can go to if they need medical assistance and another person who can offer them emotional support. These people should be capable of offering your child guidance if their pain interferes with
their academics.

What are some ways to help my child deal with their college workload?

Learning to use the course syllabus can be helpful for your child in dealing with their college workload. The syllabus keeps them informed about what is expected of them for each class, and allows them to plan their course work accordingly. An agenda can also help your child manage their time and plan ahead so they won’t fall behind if they becomes ill. Recording lectures and then taking notes later can help if they have trouble concentrating in class. If they can’t make it to class, they might be able to ask a friend to take notes or record the lecture for them. Most colleges also have Resource Centers that provide a variety of services to help students deal with heavy workloads.

Are there any special services on college campuses that help students with chronic illnesses?

You and your child can check the college website to see if their school has 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. If they have a 504 plan, it will help them access special services.

When an evaluation suggests endometriosis, it is likely that your child will be scheduled for a diagnostic laparoscopy. When a definitive diagnosis of endometriosis has been made, treatment falls into the following categories:

Observation: After a complete evaluation and before beginning therapy, your child’s gynecologist may decide to have them keep track of their symptoms and try mild pain medicine.

Medical Suppression: Hormonal treatment such as birth control pills either taken cyclically or continuously are felt to relieve symptoms in 8 out of 10 patients. Another medication called a GnRH agonist, such as Lupron Depot®, works by shutting off hormones made by the ovaries and temporarily stopping periods. The use of GnRH agonist therapy lowers the body’s estrogen level. This medicine has been approved by the Food and Drug Administration to be used for 12 months at a time with “add-back” hormone therapy to decrease the lossof bone density.

Surgery: At the time of laparoscopy, a special instrument is used to cauterize the endometriosis. After this procedure, many teens find relief from symptoms but some teens may experience pain again over time.

Lifestyle Changes: Dealing with chronic pelvic pain can be challenging for many teens. Exercise often helps to relieve or lessen pelvic pain and menstrual cramps. Eating well and getting enough rest also helps the body to manage pain. Practicing relaxation techniques such as yoga and meditation help to ease pain too.

Pain Treatment Services: Many health care providers are associated with programs that provide treatment and support for patients with acute and chronic pain. Teens may be offered an evaluation for services such as biofeedback, physical therapy, TENS (transcutaneous electrical nerve stimulation), and exercise programs.

Complementary Medicine: Acupuncture, herbal remedies, homeopathy and healing touch are among popular “alternative approaches” to medical treatment. Many of these therapies can be helpful and are used in addition to traditional medical treatment. Not every alternative approach has been proven to be safe and effective as research studies are limited. Before experimenting with any alternative therapy, check with your child’s health care provider.

Combination hormonal treatment is very effective for treating endometriosis. Hormonal treatment doesn’t “cure” endometriosis, but it may help with controlling your child’s pain by stopping their 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 preventing 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 progesterone hormone medicine in them), and progestin–only pills that contain just progesterone. 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 contains all active hormone pills and the 28–day pack which contains 3 weeks of active hormone pills and 1 week of inactive (placebo) pills.

How do I know if hormonal pills are right for my child?

Not everyone should take hormonal pills. Your child will be asked questions about their medical history, such as whether they or anyone in your family has a history of blood clots. In addition, your child will not be given a prescription for estrogen pills if they have certain types of migraine headaches (with aura). There are different doses of hormones in different hormonal pills. Their gynecologist may prescribe a progestin–only pill if there is a medical reason why they should not take estrogen. Please tell your child’s gynecologist if your child suffers from migraine headaches or if anyone in your family has been treated for blood clots or stroke.

Are there other medical benefits to taking hormonal pills?

Yes. If your child is prescribed hormonal pills continuously (no inactive pills), then they probably won’t have a period. Hormonal pills may lower their chance of getting endometrial (lining of the uterus) cancer and ovarian cancer, ovarian cysts, certain breast lumps, and may protect them from osteoporosis. Hormonal treatment may also improve acne, if they have it.

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

Active pills contain hormone medicine. If your child’s 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 their pill pack. The inactive pills are in the last row of the 28–day pill pack and DO NOT contain hormone medicine. If their 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 they are using a 21–day pill pack, all the pills are active. If they are prescribed continuous hormonal treatment for endometriosis, they 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.

Continuous use means taking active hormone pills every day without a break. If your child is prescribed the 28–day pill pack, they will take 1 active pill a day for 3 weeks (3 complete rows) and then start their next pill pack immediately. They will not take the last row of inactive pills; rather they will just throw them away. If they are prescribed the 21–day pill pack; when they finishes the entire pack (3 rows), they will start their next pill pack the next day. Your child should not skip any days between pill packs. Most likely they will not have a period while they are taking the Pill continuously, but some teens may have breakthrough bleeding. Having up to four periods a year is considered normal on this method. It is important to remind your child to take their hormone pills at the exact same time each day, not necessarily when they get up or at bedtime since this may vary on a daily basis.

What are the side effects of hormonal pills?

Most teens have no side effects when taking hormonal pills, but some may. Each type of hormonal pill can affect each teen differently.

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). Your child 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 your child takes them hormone pills at exactly the same time* every day to keep their hormone levels in balance. This will lower the chance of having breakthrough bleeding.

Nausea: Your child may feel queasy or nauseous at times, but this may go away if they take the Pill with a meal or a snack. If the nausea doesn’t go away, their gynecologist may prescribe a pill with less estrogen.

Headaches: Some teens 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 child’s GYN team know if their 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, the type of pill they are taking may need to be changed.

Acne: Usually hormonal treatment helps to improve acne, but some teens may get acne from a particular hormonal pill.

Weight: Some teens gain weight, some lose weight, but most teens stay exactly the same when they are taking hormonal treatment.

Other side effects: Your child’s breasts may feel tender or swollen, their appetite may increase, and/or they may 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, their gynecologist may switch them to a different hormonal pill or talk to them about other types of treatment.

Taking the Pill continuously means that your child will take one active pill (containing the female hormones estrogen and progesterone) every day without a break. This will help keep the lining of their uterus very thin. They will not take any placebo (inactive) pills and they will not have a regular monthly period. They may have some irregular spotting or bleeding as their body gets used to this new medicine, especially in the first six months of treatment.

The GYN team will explain to your child how to use the Pill pack. They will be told to start taking the Pill on a Sunday, on the first day of their menstrual period, or on the day of their appointment with their gynecologist.

1. They should take 1 pill at the same time each day until they finishes the pack. The best time is ½ an hour after a full meal. They may feel mildly nauseous during the first month, but this usually goes away.
2. After completing a 21–day pack, they should immediately start a new package of pills the next day.

Please remind your child: to take their 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 tell them to take the Pill when they wakes up or before they go to sleep, as those times will likely vary on school nights and weekends.

What if my child forgets to take one or more hormonal pills?

•  If they miss 1 or 2 active (hormone) pills in a row, they should take the pill(s) as soon as possible and then continue taking 1 pill each day. They can take 2 pills on the same day (one at the moment they remembers and the other at the regular time) or even 2 at the same time.
• If they miss 3 or more active (hormone) pills in a row, they should take all 3 hormone pills as soon as possible and then continue taking 1 pill each day.
• If your child is sexually active and does not use condoms, they should call the GYN team to find out if they should also take emergency contraception (EC). They should use condoms for the next 7 days.

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

What if my child complains about the oral contraceptive pills that they were prescribed?

If your child is not happy with the Pill that they are taking and the effects they have on their body, please encourage them to talk to the GYN team. They should NOT just give up and stop taking the pills. Most likely their gynecologist will be able to give them a prescription for a different type of oral contraceptive pill or another type of hormonal medication. There are many types of hormonal pills and they affect people differently. Your child may like some, but not others. Be prepared that they might need to try a few different types of hormonal pills until they find the one that works best for them.

If your child is unable to take estrogen or if they do not respond to combination (estrogen and progesterone) pills, their gynecologist may prescribe a progestin–only hormonal pill such as norethindrone acetate (Aygestin®, Slynd®, or Camilla®) or medroxyprogesterone acetate injections (Depo–Provera®). These medicines stop a producing female reproductive system from ovulating and the endometriosis from growing. Most teens will not have a period. Taking synthetic (man–made) progestin medication in this form is very similar to the natural progesterone that is made by a person’s body after ovulation and during pregnancy.

Are there any reasons why my child might not be able to take progestin–only hormone therapy?

There are certain circumstances when progestin–only hormone therapy may not be prescribed. The GYN team should be informed if your child is currently being treated (or has been treated in the past) for any other medical condition(s) in addition to endometriosis, including epilepsy (seizures), migraines, asthma, heart or kidney problems. Progestin–only hormone therapy is never prescribed while a person is pregnant, or if they have cancer, unexplained vaginal bleeding or severe liver disease. You should also tell the team if your child has diabetes, high blood pressure, high cholesterol or if they have been diagnosed with depression in the past.

Are there any side effects we should be aware of?

Most teens have 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. There is a possibility of bone density loss (thinning of the bones) with Depo–Provera®. Hormone medications can affect people differently. Some teens will have irregular bleeding while taking progestin–only hormone therapy, especially during the first 6 months of treatment. Breakthrough bleeding is less common with long–term use.

How is norethindrone acetate taken?

Norethindrome acetate is a pill that comes in a bottle (not pill pack) and is taken orally. If your child is prescribed this medication, they will start out on a low dose and may gradually increase the amount until they have no bleeding or pain. (The prescribed dose can vary from 5–10 milligrams/day.)

How is Nor–QD® or Camilla® taken?

These progestin–only medications come in a pill pack like regular birth control pills. There are 28 active hormone pills in each 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 the menstrual cycle. A routine urine pregnancy test is typically done prior to starting the medicine. The next injection is scheduled within 11–13 weeks.

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 the hormones estrogen and progestin or progestin alone. Your child must take add–back therapy if they are prescribed leuprolide acetate.

How does leuprolide acetate work?

This medication works by shutting off hormones made by your child’s ovaries, so her estrogen (one of the hormones that causes their body to have periods) level is lowered. After their first injection, their estrogen level will rise before it goes down. This is called an “estrogen surge.” Because of this rise in estrogen, they may have an increase in their endo symptoms for a few days. After the estrogen surge, their estrogen levels will go down. This temporarily stops their period. Without periods endometriosis symptoms usually go away.

How is leuprolide acetate given?

Leuprolide acetate is an injection. It is very important that your child gets their injection on time. Missed doses can cause breakthrough bleeding and the return of pain.

How long can my child stay on leuprolide acetate with add–back?

Leuprolide acetate alone is usually prescribed for 6 months (1 injection every 3 months). However, when it is taken with add–back, a patient can almost always stay on it longer. After a few months of treatment your child will be scheduled for a follow–up appointment with their gynecologist to see if the medicine is helping them. This appointment also gives your child’s gynecologist a chance to ask them about their pelvic pain and any other symptoms they may be having. If their symptoms are better, their gynecologist may suggest that they 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, your child will most likely NOT experience these side effects. If they do not have symptoms, they will likely be mild.

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 her bones healthy, low levels of hormones can lower your child’s bone density and put them at risk for osteoporosis (thinning of the bones). The goal of add–back therapy is to give their body back just enough hormone(s) to protect their bones and control any unwanted side effects such as hot flashes and vaginal dryness that are common when taking leuprolide acetate alone. Your child’s gynecologist will decide on how much add–back medicine they will need, and give them 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?

Effects will decrease after your child stops taking the medicine. Their menstrual cycle will return within 4 to 8 weeks after their last injection. If bone density loss occurred, it may recover partially or completely.

Can my child 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 there is a family history of osteoporosis. Osteoporosis causes our bones to become fragile and break more easily. “Add–back” therapy can help prevent loss of bone density, which may allow your child to stay on the medicine longer.

What is bone density?

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

When will my child be scheduled for a bone density test?

After your child has been on leuprolide acetate for approximately 6 months, your child’s gynecologist will order a bone density scan (DXA test). This is a simple test that measures how dense (or thick) their bones are and if their bones are losing bone mass. If the DXA scan is normal and they are told to continue on the medicine, they will be scheduled for a DXA test every 1-2 years.

Is there anything my child can do to prevent bone loss?

Yes. Your child will likely be instructed to take a calcium and vitamin D supplement. 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.

They can also reduce their chances of preventing bone loss by:

• Participating in a form of *weight bearing exercise every day
• Eating calcium–rich foods
• Avoiding the consumption of large amounts of alcohol
• Not smoking

*Weight bearing or aerobic exercise involves doing an activity that supports your weight, such as walking, running, dancing, soccer, basketball, etc.

Is it possible for someone to get pregnant while on leuprolide acetate?

Although this medication works by preventing ovulation, there is a rare chance that pregnancy could occur if a teen has unprotected sex. We recommend that everyone who is sexually active use a non–hormonal birth control method such as condoms while on this medication.

Why is there no cure for endometriosis?

Although medical researchers have been working for years to identify a cure for endometriosis, as of right now, there is no cure. This is because the exact cause remains unknown. The good news is that researchers around the world are investigating factors that might explain why one person gets endo and another person does not, such as: whether exposure to certain environmental agents cause endo, and if the immune system reacts a certain way to make a woman more at risk. Researchers have also been working on identifying a “gene” that would help recognize people more likely to be diagnosed with endo. Some doctors claim that they can “cure” endometriosis with surgery. This is NOT true as they cannot see the microscopic disease that is present and therefore they cannot remove all of the disease. Until a cure for endometriosis is discovered, there are effective treatments to control pain caused from endo, and preserve fertility.

How do I deal with the fact that there is no cure for my child’s endo?

It’s normal to feel frustrated, angry, sad, or other emotions when you know that nothing can be done at this time to cure your child’s endo. You may find it reassuring to know that there are treatments to control their symptoms and prevent their endo from getting worse. Research is always moving ahead and the possibility of a cure could very well be in the near future.

How common is endometriosis among teens?

We know that it is not uncommon for teens to have endometriosis. If endometriosis runs in the family, a teen 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 teens with chronic pelvic pain who had undergone a diagnostic laparoscopy.

How often will the gynecologist see my child?

Many factors influence how often your child will be followed by their GYN team: the type of medication they are prescribed, how well they respond to treatment, and whether or not they have other gynecological issues. If your child is being treated for their pain with birth control pills, they will probably need to return about 3 months after they start the pills. Typically, if your child is on Lupron Depot®, they will need to return for their shot either once a month or every three months depending on the prescribed dose. They may return earlier if they are experiencing side effects or they feel that their endo symptoms are not improving. When they are doing well and is happy with their medical treatment, they will need to have an annual appointment for a GYN check–up and to obtain a prescription refill.

How do I help my child comply with their treatment plan?

Your child’s compliance with their treatment plan relies on a good balance between assuming responsibility for their treatment, and your support. Support may include your assistance with the practical parts of their treatment plan, such as filling prescriptions, communicating with schools and transportation to appointments. Asking adolescents to assume increasing amounts of responsibility can be stressful, but it is a necessary part of growing up. Honest communication with your child about taking increased responsibility for their health care encourages them to be compliant with their medical treatment.

If my child goes on birth control pills for their endometriosis, am I giving them permission to have sex?

No. If your child is offered birth control pills for the treatment of their endometriosis, it is because birth control pills are effective in reducing pelvic pain. The treatment will not change your child’s values about sexually activity. This is a good opportunity, however, to talk to your child about your concerns and expectations.

How can I help my child live with endometriosis without it interfering with school and social activities?

One of the primary goals of your child’s treatment is to successfully manage their pain. The goal of their treatment plan should be to reduce the symptoms that interfere with their education, activities, and social life.

How can I help my child maintain consistent school attendance?

Some teens with endometriosis experience an unusually high number of school absences due to chronic pelvic pain. Pain management is key when treating endometriosis so that your child can attend school and participate in social activities. If their pain is particularly bad in the morning, you may choose to give them the option of going to school late rather than being absent for the entire day. In rare cases when school absences are high, it may be necessary to work with the school system to arrange for a home tutor. It is important to communicate about extended school absences with your child’s gynecologist.

When should I let my child stay home from school (because of endo pain)?

There may be times when, despite the best of treatment plans and efforts, your child feels that the pain from their endometriosis is intolerable and requires them to stay home. It would be most helpful if the criteria for staying out of school or other activities were established BEFORE the situation arises. For example, if your expectations are clear about their school attendance, class work, and homework, it will be easier for them to take responsibility when they are absent from school due to their endometriosis. If you feel your child is falling behind in their classes and/or homework due to frequent absences, or that their pain interferes with completing assignments, make an appointment with their school counselor or advisor before they fall too far behind. Health care providers may be able to help by advocating for necessary support services so that your child can have a successful school year.

Are there any alternative or complementary treatments that will help my child?

Complementary and alternative medicine or “CAM” therapies have become popular in the last decade. Although there is limited data that supports the effectiveness of herbs, acupuncture, and other forms of CAM therapy in the treatment of endometriosis, new research studies are underway to determine if in fact these therapies are helpful. Pain Treatment Centers in major hospitals will evaluate teens with endometriosis and often recommend CAM therapies in addition to traditional medical treatment. If you choose to explore options on your own, make sure that the CAM provider is a licensed professional and inform all of your child’s health care providers what herbs or therapies the CAM practitioner prescribes.

How will the endometriosis affect my child’s sexuality?

Every gynecological condition by definition focuses on the reproductive system and this necessitates conversations about sexuality. This often makes teens and their parents uncomfortable. Teens with endometriosis may have more intense feelings about their sexuality because of all the medical attention they receive to this part of their body. As a parent, you can use this opportunity to have honest discussions with your child about sex and the choices they will make.

How will the endometriosis affect my child’s fertility in the future?

Early treatment is important in the relief of pain but also in the prevention of the natural progression of endometriosis that in some cases may cause infertility. Infertility may occur when endometriosis causes scarring of the pelvic organs and/or the fallopian tubes. Since endometriosis is a chronic (life–long) disease, it’s important for your child to have early treatment to preserve their fertility. Your child should be followed for their endometriosis throughout their childbearing years.

Why does my child need to have surgery and medicine for their 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 their doctor combines medical and surgical therapy to treat this disease.

Will my child ever need another laparoscopy?

The need for another laparoscopy depends on many factors, such as when their last procedure was, if they are having a problem with pain control while taking medication, and if their gynecologist feels it’s necessary to check to see if their endometriosis has grown. If they do require another laparoscopy in the future, the endometriosis lesions will be removed and/or destroyed. The goal is always to lower their pain and preserve their fertility.

Will my child need to have their uterus and/or ovaries removed because they have endometriosis?

No. They will NOT need to have their uterus and/or ovaries removed (hysterectomy). All treatment will be aimed at relieving pain and preserving their ability to have children someday (if and when are they ready).

Will my child be able to get pregnant?

Not being able to get pregnant (infertility) can result if endometriosis causes changes to your child’s pelvic organs, including their fallopian tubes and ovaries. With early treatment, endometriosis should not interfere with their ability to become pregnant (if and when they are ready).

Should my child get pregnant to cure their endo?

No. There is no cure for endometriosis at this time. Some people who are pregnant may experience less endo–related symptoms during their pregnancy while others may have no change or a worsening of symptoms. For people who have an improvement with their symptoms (while they are pregnant), the effects are usually temporary.

How long does my child need to be followed for their endo?

Endometriosis is a chronic condition that requires long–term medical treatment and follow–up, especially during their childbearing years. Many factors affect how often they will need to be seen by their gynecologist, such as whether or not they are responding to treatment. Since there is no cure for endometriosis at this time, they will need to be on medication. Therefore, follow–up visits with their gynecologist will need to be made periodically. Refills for prescription medications (for endometriosis) are provided at this time.

If I have another child, should they get checked for endometriosis?

People who are born with female reproductive organs, are more likely to develop endometriosis if a close female relative from their mom or dad’s side has it. Likewise, if one child has been diagnosed with endometriosis, and your other children have painful periods and pelvic pain at other times during their menstrual cycle that interferes with school and social activities, it is a good idea that they have a gynecological evaluation.

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

Add–back therapy: Hormonal therapy prescribed to help people born with female reproductive organs 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.

Breakthrough 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.

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. (In this book, we refer to the GnRH–a agonist as Leuprolide acetate, or Lupron–Depot®.)

Gynecologist: A doctor with additional medical and surgical training in the area of women’s 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 immune system is the system in our 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 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 belly area of a female. The ovaries make the female hormones estrogen and progesterone.

Premenarcheal: This refers to the time before a person born with reproductive organs gets their first period. “Pre” means before and “menarcheal” means menstrual period.

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

Trans fat: Trans fat is a “heart unhealthy” type of fat. It is 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.