Mental Health

Mental Health

Living with endometriosis is taxing on us emotionally. Endometriosis symptoms can leave us physically and emotionally exhausted – dealing with the unpredictable nature of our flares and not knowing how we are going to feel from one minute to the next, the medical trauma and gaslighting, the dismissal and lack of support from people around us, the agony of the physical symptoms and what we have to endure on a daily basis, the fear of that PAIN, the grief of all that we’ve lost to this illness, financial concerns for our high medical bills or inability to work, social isolation from being unable to leave the house due to pain, feelings like a burden/bother (which we aren’t at all!) as we need to become increasingly dependent on others for help.

Additionally, people who hold identities that have been historically marginalized can face further trauma. This can come in various forms, such as implicit and explicit biases that medical professionals may hold towards people in terms of race, ethnicity, gender identity and expression, and sexual orientation. It is also important to note that the space of endometriosis advocacy, as well as the treatment space, is predominantly occupied by people who are cisgender women, heterosexual, and white. People with different identities – such as Black, Indigenous, Latine, Asian, people of color, LGBTQIA2S+, including Intersex people, non-binary and others under the Trans umbrella, as well as various other identities – can face a lack of inclusion, representation, or even outright discrimination.

Some research has shown that living with chronic pain takes a similar emotional toll as a cancer diagnosis. This shows the seriousness of living with the daily onslaught of symptoms/pain that endometriosis can bring. That’s why it’s vital to take care of our mental and emotional health, because living with endometriosis can sink us into a deep sadness, trap us in anger, or completely strip our lives of meaning. All of these are natural reactions to a devastating disease, but it’s important to address how we feel and then work through our feelings so we don’t get stuck in them. I was stuck in my anger for over a decade so I know it’s not an easy process. But trying to move towards finding peace (whatever that means to us), finding healthy outlets for our feelings, and working safely through trauma can help us to once more access joy, meaning, and happiness in our lives where we thought there was none.

I truly believe that when we get diagnosed, part of the medical care that is provided should automatically include addressing the toll this disease takes on our mental health. Unfortunately, the medical community is barely capable of treating the physical side of endometriosis, never mind how it affects us mentally and emotionally. Which means this burden typically falls on us to figure out how to support our own mental health in addition to all the physical symptoms and treatment options we are dealing with. Not to mention, access to mental health resources can be costly and inaccessible, and it has great disparities in quality between communities.

In summary – Endometriosis can greatly affect mental health, and taking care of our mental health can be difficult. If you are struggling right now, I see you. Please don’t judge yourself. It’s okay to reach out to a loved one, mental health professional, online mental health community/resources or hotline for support.

Some potential ways to support mental health

As we are all individuals, what we need or what can help us will vary. There are many ways to address our mental health and often the best results come from supporting ourselves in multiple ways emotionally, mentally, and spiritually.

Professional support

Some people may find it helpful to see a mental health professional, do cognitive behavioral therapy (CBT) or dialectical behavioral therapy (DBT) with a mental health professional or via workbooks/self-learning, do EMDR, take prescription medication, etc.

Community support

Finding community on or offline, talking to a trusted loved one, sharing your story or hearing others share theirs.

Holistic support

Finding joy, meaning, purpose, or fulfillment; self care activities like setting boundaries, learning to say no, resting when we need to; finding activities that put us into a flow state like gardening, dancing, singing, making art; moving our bodies with walking, yoga, qigong, etc; getting into nature; journaling; releasing activities like screaming into a pillow, crying; pain and symptom management; and more.

My own experience

I was reticent to address my mental health for a few reasons.

  1. First, I didn’t realize the trauma I was carrying from the years of medical gaslighting or the impact it was having on my daily life.
  2. Second, I didn’t think my anxiety/depression was worth addressing because after been dismissed and gaslit for a decade that I was absolutely convinced that I was broken and inherently flawed (and that was the reason why I was sick). I was sure that nothing could help me so I didn’t even realize that working on my mental health was an option. I had no idea that with the right support and tools, I could see improvements in my emotional state and also the way I felt about myself.
  3. Third, like most of us with endometriosis, I’d also been brushed off and told so many times that it was “all in my head” and due to “anxiety” (instead of the doctor actually addressing my endometriosis), so I was concerned that if I did work on my worries, fears, and anxieties, that would somehow negate the physical and mean that my symptoms actually were “all in my head.” But looking at our mental health doesn’t mean that endometriosis is in our heads, because it’s not at all. Endometriosis is a physical disease with lesions in our bodies that shouldn’t be there that are wreaking havoc! In taking a full body approach to addressing this disease, we need to look beyond the physical and also at the emotional and mental toll it takes on us.

For More Resources

Research on the Endometriosis Experience

Note: These studies use gendered language, and I believe were done on cis-women. I haven’t come across many studies of the lived experience of people with endometriosis describing their relationship to their pain, disease, and symptoms. If you know of any more, especially ones using inclusive language, please send them to me!

Some Great Books

  • Finding Peace with a Devastating Disease by Amy Corfeli (I wrote this book!)
  • Man’s Search for Meaning by Viktor E. Frankl
  • The Choice: Embrace the Impossible by Edith Eger
  • The Gift: 12 Lessons to Save Your Life by Edith Eger
  • The Dialectical Behavioral Therapy Skills Workbook for Anxiety by Alexander L. Chapman
  • The Dialectical Behavioral Therapy Skills Workbook: Practical DBT Exercises for Learning Mindfulness, Interpersonal Effectiveness, Emotional Regulation, and Distress Tolerance by Matthew McKay, Jeffrey C. Wood, Jeffrey Brantley
  • The PTSD Workbook for Teens by Libbi Palmer
  • A Guide to the Good Life: The Ancient Art of Stoic Joy by William B. Irvine
  • Healing into Life and Death by Stephen Levine
  • The Four Agreements: A Practical Guide to Personal Freedom (A Toltec Wisdom Book) by Don Miguel Ruiz
  • The Happiness Hypothesis: Finding Modern Truth in Ancient Wisdom by Jonathan Haidt
  • The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk

Related Podcast Episodes

Return to top of page