Endometriosis: Coping with Pain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learning how to cope with your pelvic pain can feel like an overwhelming task at first. However, the more strategies and techniques you learn, the easier it will become. Having the support of important people in your life will also help you manage your pain. When you learn how to manage your pain, rather than allowing it to rule you, you will have the confidence to live your life to its fullest potential.