In the early throes of motherhood, I was reminded more than once about the whole “put your oxygen mask on first” philosophy—the idea that you can’t wholly be there for others if you don’t take care of yourself first. Similarly, some say, “You can’t pour from an empty cup.” If you are depleting yourself and not practicing self-care, you can’t effectively be who you want to be. These ideas hit me hard.
They’re motivational and somewhat idyllic sayings that are—for the most part—true. But at the same time, what happens if you need a bit more “oxygen” than other moms? Or if your cup has a leak, meaning you need a bit more self-care or grace than others? What do you do then? This is what keeps me up at night. And it’s something I grapple with almost on the daily.Â
Managing My Endometriosis as a Mom
What it’s like having endometriosis as a mom
I have a dream-come-true preschooler, an incredible and supportive husband, a great job, and a wonderful family. I’m extremely fortunate. But I also have endometriosis and adenomyosis at a stage that’s advanced enough to cause chronic, long-lasting, sometimes immobilizing pain—which of course usually peaks at life’s most inconvenient times. When it’s at its worst, I grapple with being a present mother and wife in addition to taking care of myself. The mom guilt and the self-shaming can be really heavy.
And it causes so much internal conflict. My inner dialogue almost constantly reminds me, “There are SO many people out there who have it SO much worse, whose lives are SO much more difficult… Get it together, Erin.” But my pain is real. The exhaustion is real. The mom guilt is real.Â
Missing out on family time because I’m tethered to a heating pad or pain meds, not feeling present in the moment because I’m distracted by pain—it sucks. It also sucks when my daughter asks for my heated blanket because her “belly hurts too.” Really, she just wants to be like her mommy. It’s a punch in the gut.
“My daughter asks for my heated blanket because her ‘belly hurts too.’ Really, she just wants to be like her mommy. It’s a punch in the gut.”
But now that I have four years of managing chronic pain and motherhood under my belt, I’ve gotten a bit of a handle on it. In honor of Endometriosis Awareness Month this March, I’d love to share some things I’ve learned and adopted that make things a bit easier—while also acknowledging and having gratitude for my privileges of having a magnificent partner, top-notch medical care in New York City, and an understanding, flexible employer.
How I’m managing my endometriosis
I’m currently writing this as I recover from my fourth excision surgery. And I’m feeling really positive about a future with less pain. In the interim, here’s how I’ve been managing my endometriosis—in the hopes it might help you out too.
I research new information about endometriosis
One thing I learned early on is that knowledge is power and that the patient themselves is their best advocate. Sure, there might be the rare unicorn physician out there who will fight for you and be your champion, but really, the fight lies within you. Learning the different surgical approaches (robotic vs. laparoscopic vs. laparotomy) and the latest hormonal interventions, staying up-to-date on research, and joining support groups where people freely share their experiences has immensely helped me to help myself.
I rest when I can
If you walked into my apartment and saw my husband and daughter playing on the floor while I laid on the couch wrapped in heat, you’d probably think I’m a lazy mom. At least, that’s what my brain tells me sometimes. But in reality, I’ve learned that when my flares are at their worst, it’s what I have to do. And I’d rather be in the living room where I’m still “present” than hidden away in my bedroom, removed from my family. It took me a long time to learn there’s no shame in doing what my body needs me to do. But I still struggle with it. I’ve experienced burnout and what happens when you push too far through a flare. And I now know the power of rest.
I try to exercise
When you’re in pain, the last thing you want to do is exercise or even move at all. But I promise it helps. I remember early on when I just had “bad periods” as a teen, my mom would always say to do crunches, claiming it would help with the cramps. I thought she was trying to torture me further, but she wasn’t wrong.
Engaging your muscles, getting your blood flowing, and working up those endorphins that really are “nature’s painkillers” actually does help with pain management as well as with your mindset. At the very least, it doesn’t make anything worse.
I utilize medications and therapies
If you do nothing and let your flares to take over, allowing your social and professional lives to be dictated by your cycle or calendar, endometriosis can be all-consuming. Therapies and medications DO help. They aren’t miracle cures, but they absolutely help.
Pelvic floor physical therapy, feels awkward, invasive, annoying, and expensive, especially at first. But it’s ultimately validating and helpful. And has taught me so much about my anatomy and the power of breath, stretching, and strengthening. Consistently going to PT is, in my opinion, one of the best things you can do for yourself. And while it does kind of suck that a chunk of my “me” time is often spent at PT, it’s still an hour of quiet and self-care—something all moms can appreciate.
Marijuana is also legal in my state, and before it was legalized I also had a medical marijuana license. I’m a proponent of medical marijuana; it’s my medicine on the nights I need it. It took me a long time to be able to say that and not worry about being judged. It also took a long time for me to be OK with the fact that when all the OTC meds and heat in the world don’t help, I take prescription narcotic pain medication. I handle them responsibly and use them sparingly, but they are there.
I have a supportive partner
My husband is absolutely phenomenal. At our best, we have a 50/50 approach to parenting. At my worst, he rolls up his sleeves and, without hesitation or complaint, becomes our daughter’s primary caretaker. He keeps her engaged, distracted, and smiling. And they have the most amazing father/daughter relationship I’ve ever seen.
And I knew it would be this way because before we had her, he was (and still is) the same way with me. I agonize sometimes that he doesn’t have time to fill up his own cup or put on his own oxygen mask on the days I’m not feeling well. But I also find every opportunity to encourage him to make plans and do the things he loves, too. We’re also getting better at scheduling time for just the two of us—it’s so important, but we don’t always prioritize it.
I’m honest with my daughter
Now that my daughter is getting a little older and especially now that I’m home post-surgery, I’m honest with her on an age-appropriate level. She knows mommy’s belly or back hurts sometimes, and that sometimes I need to rest and might not be able to chase her around or be as involved in physical play as I’d like to be. I was honest with her about my surgery and though she was a bit concerned knowing I have boo-boos now, she knows that I’ll eventually feel better thanks to the boo-boos.
I also think being transparent with her is teaching her early on that it’s important to take care of your body and be grateful for your health. Just last week I brought her with me to a PT session so, in my mind at least, she could see mommy working to get better—and she loved it.
Having a chronic pain condition like endometriosis has taught me so much about myself as a mother, a wife, and a friend. It’s caused me to grow and reflect and learn. While nobody wants to have a “condition” or “something wrong with them,” I’m so grateful to have the tools and resources to manage the difficult days. Once those pass, there’s always a better day just around the corner.
The good days are what it’s all about, and I’m excited to have more and more of them.
