The Mental Health Impact of Living with Endometriosis

Many women live for years with unexplained symptoms and a deep knowing that something is wrong with how their body is functioning. An endometriosis diagnosis is more than a physical health diagnosis. Its impact is far reaching and touches so many areas of a person’s life. One area that gets little attention is the mental health impact of living with endometriosis. 

Endometriosis is a condition where tissue similar to the lining of the uterus grows in other places where it doesn’t belong. The symptoms can include stomach problems, pelvic pain, heavy menstrual bleeding and even fertility issues to name a few. 1 in 10 women are affected by the condition and the mental health impact is more than people might expect.  

Anger and Frustration 

Many women report feeling frustrated and angry. Why is this? Well, when you’re seeing several medical providers where you have to explain a lifetime of symptoms within a short appointment and experience repeated dismissal, this contributes to the anger and frustration many women feel. 

It can be exhausting to have to be your own expert and advocate. You may be doing lots of research to try to deepen your own understanding and know how best to advocate for yourself or even educate providers you may be seeing who are not as informed or using best practices to treat endometriosis. 

You may be doing all the things you know to do and still struggle with your health. It can feel overwhelming and defeating for many women. Anger can be felt towards a medical system that is difficult to navigate and that’s not designed for people with complex health issues. There is a true psychological cost of not being believed.  

Anger and frustration can be felt towards family and friends also. You may receive unhelpful comments or unsolicited advice from your loved ones. This can produce feelings of frustration  from carrying the weight of having to educate them about your condition or explaining your symptoms or limitations. 

Anxiety and Depression

Living with endometriosis means living with the unknown. Symptoms can be unpredictable and it’s hard to plan around the uncertainty of not knowing how you’ll feel. This uncertainty can produce anxiety and a sense of helplessness. 

Chronic pain significantly increases the risk of depression. Studies show that people with chronic pain are 2-3 times more likely to experience depression than those living without pain.  

Grief and fear 

You may long for a body that feels within your control and more functional. It’s normal to feel grief over the life you imagined living. The loss of freedom or spontaneity are real and valid losses. 

Endometriosis can make it harder to conceive or maintain a pregnancy. If motherhood is something you desire, this can be an especially painful experience. Also, you can never know if you’re able to get pregnant until you try. If you’re not quite ready to start a family, the uncertainty of what’s possible for you can be a hard thing. You may be wrestling with unanswered questions about how an endometriosis diagnosis will impact your fertility and what treatment options will be available to you when the time comes. You may already be exxperiencing the impact of endometriosis on your fertility. Studies show that women with endoemetriosis face a higher risk of pregnancy loss and recurrent pregnancy loss. 

Isolation

Many people experience isolation from friends and family. People often misunderstand what it’s like to live in a body that doesn’t feel like yours or that you feel betrayed by. They may assume things about you based on how you’re showing up in the world. For example, doubting if your pain is as real as you say if you’re engaging in certain activities. That might lead to you having to explain or justify your actions and make relationships feel like labor that you’d rather not associate with. Strains in social relationships can also come from frequently having to cancel plans due to unpredictable pain and over time the invitations stop coming. 

Pain can also affect romantic relationships and sexual intimacy. Some people experience a life that starts to feel smaller and smaller. Social support can dwindle when it’s needed the most. 

Endometriosis has a bidirectional relationship with your mental health. Seeing a therapist that can address the challenges and the impacts of living with endometriosis can improve your overall quality of life by equipping you with tools on how best to support your mind and body in the way that it needs. Let’s make future you really proud that you took the first step and schedule a consultation with a therapist that specializes in reproductive mental health.