Everything Parents Need to Know About Endometriosis

Are you a parent of a student with endometriosis or a parent with endo? This guide is for you.

Stock photo of Black woman and kid looking at a laptop while working from home
According to the World Health Organization, endometriosis affects about 190 million girls and women who are of reproductive age. It is extremely underdiagnosed for teenagers. Shutterstock

For marginalized folks and people living with disabilities, in-person learning—especially amid a global pandemic—can be particularly trying.

For those living with endometriosis—a chronic reproductive health condition that can cause pain, organ dysfunction, and infertility—those struggles are compounded by the fact that reproductive health and menstruation are too often considered taboo, and thus might be difficult to broach with teachers and peers. For students living with endometriosis, advocating for themselves can be a struggle; for parents living with the disease, balancing the everyday hurdles of parenting with chronic pain and other symptoms presents its own set of challenges.

We’re writing from experience: Caroline is Rewire News Group’s resident endo-haver, and Samantha ​​is a licensed holistic health practitioner and endometriosis survivor who goes by “the Endo Educator.” We’re here to share our best tips: for supporting a loved one with endo, and for balancing being present for your loved ones while taking care of yourself as someone with endo.

According to the World Health Organization, endometriosis affects about 190 million girls and women who are of reproductive age. Because symptoms of the disease vary, and because a culture of medical misogyny means women and girls often have their pain minimized and disbelieved, it can take quite a while to diagnose. And endometriosis is extremely underdiagnosed for teenagers.

It is important that teens who are experiencing symptoms feel comfortable enough with their parents to discuss them, and that they trust their parents enough to know their pain will be taken seriously. Managing school, extracurricular activities, and work while dealing with endometriosis symptoms is not an easy task, and parents need to know how to assist so that their child can remain at their best throughout the school year. Likewise, for parents living with endometriosis, back to school brings new challenges of juggling commutes, helping with homework, and other commitments—all while living with chronic pain.

Last month we shared our best advice for going back to school (or in-person work) with this disease, but what if you’re a parent with endometriosis and have a kid going back to school? Or the parent of a student with endometriosis who’s balancing classwork and friends and managing their chronic pain? Well, we’ve got you covered for that, too.

If you’re a parent of a student with endo

As tough as it is to receive a diagnosis and live with endometriosis, it’s easier when you have someone who believes, sees, and understands what you’re going through. Having a safe space to express your pain is critical when dealing with a disease like endometriosis. Be your child’s biggest advocate and ally. Trust us, they will need you.

Believe them! If your child has expressed symptoms that do not align with having a normal period, please believe that they are not exaggerating.

Everyone’s experience with endometriosis is different, but one thing we all go through is being disbelieved. And having someone who’s got our back is critical. Schedule a meeting with your child’s teacher to discuss their needs, and validate their pain, especially if you notice their teacher downplaying or questioning them.

Set up a doctor’s appointment to discuss your child’s concerns. If the doctor does not believe you or seems dismissive of your child’s pain, find a new doctor and get another opinion. Fifty percent is believing your child, and the other 50 percent is getting a doctor to believe you both enough to find the cause.

Get familiar with educating yourself and your child on reproductive health and endometriosis, whether or not they end up diagnosed. The more you know, the more you can do to help recognize and manage the symptoms.

Get comfortable with managing your child’s diet—and yours too, so they don’t have to do this alone. Dietary modifications, like cutting inflammatory foods, can help manage the symptoms of endometriosis, so embark on those changes together so your child doesn’t feel left out of eating certain things.

Whether you receive a diagnosis or not, understand your child still has to go through their period once a month, and their symptoms might keep them from doing the things they love. It is important to meet with your students’ teachers and administrators to discuss their issues. This will keep everyone abreast and aware in case your child becomes extremely sick during school. Someone will be able to recognize the signs.

Ensure your child is set up for success with the essentials to manage their pain while at school. This can include organic pads, wipes, clean underwear, medicine if needed, and a small snack.

Most important tip: Be there for them, always. Although it is empowering and important for your child to be their own advocate, having you in their corner helps to strengthen their voice.

If you’re a parent with endo

It’s difficult navigating life with endometriosis. The random flare-ups, constant nausea, fainting spells, and dealing with the period itself is a job in its own right. Then add parenting.

It is not an easy task to care for someone while caring for yourself. Although there isn’t one right way to deal with endo and parenthood, here are some tips to manage the stress more easily, both during back to school and all year round.

When your child is old enough, explain to them what you’re going through. From a simple, “my tummy aches” to “I have endometriosis and this is what it entails,” having an open dialogue with your child about your health may help to ease the stress of trying to appear OK for their sake.

When you’re having a flare-up, find an activity that allows you to be comfortable while spending time with your child, like curling up and watching a movie. When you’re in a good space, plan a fun activity outside of the home for you all to enjoy. Balance is key.

Teach your child what to do if you pass out or fall down from endometriosis symptoms. It is important for them to be able to get a neighbor, call a family member, or dial 911 in case of an emergency.

If comfortable, inform a teacher at your child’s school about your endometriosis, in case they have to miss days or be late for school due to your flare-ups.

Although proper rest can be hard to come by with managing motherhood, personal life, career, and endometriosis, it is important to at least remember to keep a healthy and balanced diet with foods that can help boost your energy.

Build a community around you. Back to school means added commitments of pickups, drop-offs, PTA meetings, etc. Talk with your partner, friends, and family about the possibility that they might need to step in and help out if you’re having a flare. It can be really hard to ask for help, especially when you’re a parent, but even parents without endometriosis need backup. You deserve support to take care of yourself and your child.

Release any guilt over feeling as though you have to sacrifice being a good parent because of endometriosis. It is not your fault, and your child will support you on your toughest days and praise you on your strongest. They will love you regardless. Remember to love yourself, too.

Whether you’re providing that for a loved one or asking your loved ones to be there for you, sometimes it’s hard to ask for help when you live with endometriosis. The most important thing to remember, whether you’re parenting someone with endo or you’re a parent with endo yourself, is that everyone needs a support system.