fbpx It's Not in Your Head: How Endometriosis Can Affect Your Mental Health

It's Not in Your Head: How Endometriosis Can Affect Your Mental Health

Physical distress can often lead to anxiety, depression and more—but help is possible.
Courtney Johnston
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Courtney Johnston

Now that we're well into Endometriosis Awareness Month, you may be aware that this disease impacts 1 in 10 women, can cause painful periods, may make it harder to conceive and can make sex downright uncomfortable.

But endometriosis can also take a huge toll on your mental health in several different ways.

What the research says

Several studies have been done on the connection between endometriosis and mental health conditions. Across the board, these studies show a clear comorbidity; in other words, the two conditions can occur simultaneously.

Data collected in a 2017 narrative review published in the International Journal of Women's Health found women with endometriosis are at risk for anxiety, depression and other psychiatric disorders. This review noted that the physical symptoms of endometriosis often affect the psychological and social functioning of the patients, which can significantly compromise their mental health.

Furthermore, women ages 25 and younger with endometriosis report a poorer quality of life, part of which is attributed to mental health issues, according to a 2018 study published in the Journal of Adolescent Health.

A more recent school of thought suggests that mental disorders and endometriosis are tightly linked, with each increasing the risk of the other, according to a 2020 study published in the American Journal of Obstetrics and Gynecology.

The authors concluded: "After adjustment for birth characteristics and education, women with endometriosis had an increased risk of being later diagnosed with depressive-, anxiety- and stress-related disorders, alcohol/drug dependence, and attention-deficit hyperactivity disorder compared with the general population."

The mental toll of endometriosis

One aspect of endometriosis that can negatively impact mental health is the struggle to be believed and taken seriously. Ninety percent of people with endometriosis feel as if they are disbelieved, dismissed or ignored by others on a monthly basis, a survey by the Alliance for Endometriosis found.

I remember feeling immediate relief when I received my endometriosis diagnosis, simply because putting a name to the pain and psychological anguish I was experiencing was oddly liberating.

The pain wasn't in my head, and I wasn't being dramatic.

I ignored it for years until a co-worker found me working under my desk in a fetal position, acting as if this is what every woman did during that "time of the month." (It's not, and she promptly begged me to see a doctor.)

"[Endometriosis] is real and can impact her professional and personal life," said Margaret Larkins-Pettigrew, M.D., senior vice president and chief clinical officer of diversity, equity and inclusion for the Allegheny Health Network in Pittsburgh.

"Endometriosis can take a hefty mental toll on women—and trans folks born into female bodies—which can cause them to feel isolated, stressed and sometimes hopeless," said Sylvie Bee, a California-based sex and relationship coach at Sex and Sensibility Coaching who works in tandem with pelvic floor therapists and doctors treating women with endometriosis.

"Many women walk around feeling broken, defective and a hostage to their hormones," Bee added. "Some feel like their bodies have failed them or let them down, which leads to a disconnection from their physical selves."

People with endometriosis are more likely to experience depression and anxiety, according to Bee, and the chronic pain these women feel can seriously decrease their quality of life.

Tips for boosting your mental health

While every endometriosis sufferer's mental health journey is different, there are ways you can improve your state of mind. The first step, as always, is to see your doctor. Your doctor can recommend a treatment plan or refer you to specialists who can help.

1. Find a pain management plan

Constantly living in pain can take a serious toll on your mental health, causing you to fear your period and increasing anxiety or depressive symptoms.

"Controlling the pain is key," Larkins-Pettigrew said.

If your pain is keeping you out of work or impacting your overall quality of life, talk to your doctor about the pain management treatments available or find out if surgery could help lessen your pain and improve your well-being.

2. Consider talking to a therapist

Living with endometriosis can be emotionally and mentally challenging, particularly if it's impacting your ability to work or be present in your family or social life, or making it difficult to conceive.

"Endometriosis requires complete wrap-around care," Larkins-Pettigrew said. "This includes both medical management, sometimes surgical management, as well as mental wellness, which can include a therapist [or] psychiatrist, in addition to medication. There are, at times, extreme bouts of anxiety, depression, guilt and lack of self-worth that must be dealt with in a professional way."

Thankfully, there are medical professionals who specialize in treating people with endometriosis.

"Specialists who care for women with endometriosis are also available to help women navigate the mental stress that often accompanies these women," Larkins-Pettigrew added.

3. Seek support groups nearby or online

While getting a diagnosis didn't make my pain go away, it did allow me to find the support of like-minded women. Talking to other women with similar conditions alleviated some of the mental stress I was experiencing.

When I started talking and writing about my disease, more women began approaching me with similar stories. This helped me feel less isolated, and even let us share our home remedies for pain management. For example, one woman told me she preferred an ice pack over a heating pad, which forever changed my life.

"It's critical that people suffering from endometriosis seek out support groups, whether online or in person, because feeling misunderstood and unheard while suffering severe chronic pain can take a huge toll on a person's well-being," Bee said.

Awareness grows when people speak out about medical conditions and everything they have experienced.

"As more women with endometriosis raise awareness by sharing their stories, like actress Amy Schumer, the number of resources available for endometriosis sufferers continues to increase," said Shaun Williams, M.D., a reproductive endocrinologist at Illume Fertility in Trumbull, Connecticut.

Williams also emphasized that people have many different ways to find information and support, including for specific communities, such as Black women suffering from endometriosis. He suggested looking into the Endometriosis Foundation of America, the Endometriosis Association and endometriosis.org, a news and information site.

If you don't have a group around you who can relate, try Facebook, Reddit and other social media platforms to seek groups for women with endo. Feeling less alone can improve your overall quality of life and mental well-being.

4. Don't knock home remedies until you try them

There's no one-size-fits-all solution for endometriosis pain, which also means there's no one way to improve your mental health when living with endo. Exploring different avenues for improving your well-being, such as exercise or yoga, could help improve your mental health.

Bee recommends mindfulness meditation to anyone suffering from poor mental health while living with endometriosis.

"It may sound cliché and eye-roll worthy, but mindfulness meditation helps a lot for stress and chronic pain," Bee said. "The best mindfulness app I've found for fertility and stress is Fertile Mind, which was created by Irish midwife and doula Tracy Donegan. It's an incredible tool."

Other popular mindfulness apps include Headspace and Calm. Other options worth exploring might include medical marijuana (where legal), CBD and making sure you're getting the right amount of sleep each night. Talk to your doctor before starting any nonprescribed treatment plan.

The bottom line

Endometriosis is a stressful disease that can take a tremendous toll on your body, as well as your mind. Finding pain remedies that help ease your symptoms and talking to a therapist can be helpful tools to boost your mental health. Remember you're not alone in this diagnosis, so seek other women who can help motivate and encourage you on your health journey.