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:
- Identify their physical pain symptoms
- 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.
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.