Endometriosis, often known for its severe pain and widespread prevalence, can feel utterly overwhelming. Chronic pain, emotional challenges, and limited treatment options often leave those affected searching for ways to regain control. For many, self-care isn’t just a luxury—it’s a key component of resilience and well-being.
While every individual’s experience with endometriosis is unique, there are universal practices that can support mental, emotional, and physical health. Below are six actionable self-care tips, inspired by Emma Maxwell, a chronic illness advocate, and her journey with endometriosis.
6 Self-Care Tips for Endometriosis
To help manage endometriosis, Emma shared these self-care practices that have made a difference in her journey:
- Prepare for Flare-Ups: Keep snacks, pain meds, heating pads, or anything else that helps you during a flare close by. Emma keeps a self-care kit under her bed for unexpected bouts of pain.
- Therapy: Endometriosis often predisposes individuals to mental health challenges like depression, anxiety, and eating disorders. Therapy, especially with a provider experienced in chronic illness, can offer invaluable support. If specialized therapists aren’t accessible, peer support groups or general therapy can also provide meaningful ways to cope.
- Taking Note of the Little Things: Small joys like buying flowers, lighting candles, or listening to favorite music can provide moments of relief. Emma has a ‘happiness list’ she keeps in her notes app to jot down moments of gratitude. Keeping a list somewhere convenient can be helpful to refer back to if you’re ever stuck, as well.
- Journaling: Writing whatever thoughts you’re having can be a helpful way to find peace with them. A journal provides a judgment-free space to reflect on challenges, progress, and be provided with clarity and motivation.
- Gentle Movement: When it’s within your ability, getting outside, stretching, or engaging in light activities can improve mental health without exacerbating symptoms.
- Social Support and Connection: Despite how common endometriosis is in women of reproductive age, it can be hard to connect with others who understand what you're going through. By joining online support groups through Instagram and Facebook groups, or seeking out in-person opportunities, endometriosis patients can share self-care strategies, diagnosis stories, or just chat about their experiences.
Pro-tip: Mobility aids, like canes, can be life-changing for those with severe endometriosis, especially during flare-ups or recovery from surgery. Emma decorates her cane to match her style and encourages others to do the same.
What is Self-Care?
Self-care is an intentional action or set of actions you take to care for your physical, mental, and emotional health.
A 2021 study found that Australian women with endometriosis who felt they had control over their daily health habits experienced higher quality of life, both mentally and physically.
Without taking the time to care for yourself, navigating the complexities of your endometriosis and the healthcare system can feel even more overwhelming. It’s essential for protecting your mental health and creating an environment to better understand and manage your symptoms.
Self-care doesn’t have to be complicated; it can be as simple as lighting a favorite candle, journaling, or calling a friend. Whatever brings you comfort, big or small, can make a meaningful difference.
Self-Care Throughout the Diagnostic Process: What to Know
The diagnostic process for endometriosis can be long and frustrating. In between visits with various providers and specialists, self-advocacy and education become increasingly important to ensure you’re getting the treatment you need. It’s okay to ask for a second, or even third opinion about a diagnosis or treatment.
When Emma faced her diagnostic surgery for endometriosis, she realized how much she didn’t know despite doing some preliminary research. By her second surgery, she learned to take more time educating herself about the procedure and its risks, which helped her ask better questions and feel more prepared going into the procedure. Understanding your options and knowing what to ask can make a huge difference in navigating treatment decisions.
Emma’s Journey with Endometriosis
Emma Maxwell–@endometriosisem on Instagram–is a chronic illness advocate whose experience with endometriosis has been anything but simple. Her diagnostic journey—spanning over seven years—included numerous misdiagnoses, ineffective treatments, and invasive surgeries.
“It was trial and error—emphasis on error,” Emma recalled. Starting at 15, she was prescribed over ten different types of birth control to manage her symptoms, but progress felt elusive. She eventually made the decision to stop hormonal treatments, though she continued to struggle with symptoms like gastrointestinal distress, severe bleeding, and pain.
Emma saw numerous gynecologists and finally underwent a diagnostic laparoscopy in 2019, which confirmed her endometriosis diagnosis. Unfortunately, her initial treatment—ablation surgery—led to complications, including adhesions. It wasn’t until January 2023 that she received excision surgery, which ended up being far more effective. Even then, recovery was grueling, requiring mobility aids and months of rehabilitation.
Emma’s story highlights not just the physical toll of endometriosis but also its emotional and mental impacts. Through support from friends and family to small acts of self-care, she’s found ways to navigate the challenges that can come with severe endometriosis.
Through her social media platform, Emma advocates for endometriosis awareness by challenging biases, fostering understanding, and creating a supportive community of “endowarriors.” Despite the prevalence of the condition, finding in-person support can be challenging, particularly for an invisible illness. Emma’s Instagram presence highlights the power of transparency, openness, and shared experiences in building connections. It offers a safe space where individuals with endometriosis can relate to one another without fear of judgment.
Common Misconceptions About Endometriosis
Like many reproductive conditions, there are plenty of misconceptions that can hinder understanding and treatment:
- Endometriosis isn’t just a ‘painful period’ nor a purely gynecological condition. Endometrial tissue has also been found all over the body, affecting processes like liver metabolism and inflicting systemic inflammation in some cases.
- Birth control is not a “cure-all” for endometriosis. Progestins and low-dose oral contraceptives are ineffective in about a third of those with endometriosis. In some cases, these medications also cause adverse effects so much so that about one-quarter to one-half of endometriosis patients discontinue non-surgical treatments.
- Birth control does not stop or slow down the growth of endometrial tissue, although it can help with symptom management.
- Pain varies widely. Endometriosis affects people differently, and the severity of pain doesn’t always correlate with visible symptoms.
Final Thoughts
Self-care looks different for everyone, and it is by no means a one-size-fits-all solution for endometriosis. For people living with endometriosis, it’s about finding what works for you and embracing it. Whether it’s starting (or re-starting) therapy, connecting with a supportive community, or indulging in small comforts, these practices can help you reclaim moments of joy and control.
