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:
- Take care of yourself first. The more calm perspective you have on the situation, the better for everyone.
- Take walks or exercise to clear your mind.
- Listen to relaxation material and/or take a yoga class.
- Enjoy time with your friends and family.
- Use a journal to record your thoughts and feelings.
- Talk with other parents of children with endometriosis.
- Spend time with your child that is NOT focused on endometriosis.
Our health guides are developed through a systematic, rigorous process to ensure accuracy, reliability, and trustworthiness. Written and reviewed by experienced healthcare clinicians from Boston Children's Hospital, a Harvard Medical School teaching hospital and consistently ranked as a top hospital by Newsweek and U.S. News & World Report, these guides combine clinical expertise, specialized knowledge, and evidence-based medicine. We also incorporate research and best practices from authoritative sources such as the CDC, NIH, PubMed, top medical journals, and UpToDate.com. Clinical specialists and subject matter experts review and edit each guide, reinforcing our commitment to high-quality, factual, scientifically accurate health information for young people.