Over the last decade, charities and organizations have worked tirelessly to raise the profile of endometriosis. However, due to myths and misconceptions, it still takes an average of seven and a half years for people to be diagnosed with the condition. It is critical that mental health support be considered when managing endometriosis, as feeling misunderstood and unheard while experiencing severe chronic pain can take a massive toll on your wellbeing.
Studies have highlighted that endometriosis doesn’t just impact your physical health. The reality is that living with chronic pain associated with endometriosis can make socializing, working, or getting basic tasks done almost impossible. Having your pain reduced to ‘bad period cramps’ or a little bit of backache can not only make you feel isolated, but also make getting a diagnosis even more difficult.
Author and campaigner Jessica Murnane and therapist Peter Saddington explain why you can’t separate your chronic pain from the effect it may have on your mental wellbeing and the importance of mental health support. Knowing you’re not alone in managing your endometriosis could be a lifeline for your mental health.
The link between endometriosis and mental health
Crippling chronic pain is the most common symptom of endometriosis. It can be completely debilitating. You may also experience pain during sex, fatigue, and fertility issues. Over the last few years, extensive research has been done into the many side effects of endometriosis and how they can be managed. However, clinicians are only just shining a light on how living with chronic pain can take a toll on your mental health. It’s been found that people with endometriosis are twice as likely to also experience depression.
Research published in the International Journal of Women's Health looked at the link between common symptoms of endometriosis and mental wellbeing. Researchers found that when a patient experiences chronic pelvic pain such as dysmenorrhea, dyspareunia, non-menstrual (chronic) pelvic pain, and pain with ovulation, it can critically decrease quality of life. In turn, a patient is more likely to feel anxious and depressed. Researchers also found that higher levels of anxiety and depression can “amplify the severity of pain”—thus begetting a vicious cycle.
In another meta-analysis of 99,614 women from 24 different studies, researchers found that pain was the primary factor that tied endometriosis to higher rates of depression.
“When you live with chronic pain, you can’t predict how life will be, day-to-day. Ordinary things can be difficult,” says Peter Saddington, “This can lead you to feel angry and depressed that life has affected you in this way. Sometimes when you’re experiencing chronic pain, it’s easy to lose sight that things are going to get better.”
This feeling of despair is far from uncommon. When the BBC spoke to 13,500 women with endometriosis, they found that half of them had reported feeling suicidal due to the condition. Being able to access mental health support from people who understand endometriosis can make the journey to diagnosis and managing endometriosis a little bit more bearable.
Feeling disappointed in yourself
Jessica Murnane is an author and campaigner. Murnane, who was diagnosed at 28, runs the website Know Your Endo, where she shares no-nonsense information about living with endometriosis. “I’ve lived with endometriosis for such a long time,” she explains, “and it wasn't until I was writing my book that I realized just how much it had impacted the way I see my body.”
“Endometriosis can really impact the way you see yourself and feel about yourself,” Murnane adds, “I think a lot of people can feel like their bodies have failed them and it’s so difficult to look at yourself and say ‘I love this body’ when it feels like it’s betraying you.”
When you have to explain your symptoms to your doctor repeatedly or cancel events because you’re having a bad pain day, it can feel like endometriosis is taking over who you are and changing your perception of yourself. “If you’re experiencing chronic pain and can’t do all of the things you want to do,” Saddington says, “it can lead to a lot of regrets or the feeling that life isn’t going on in the way it should be. This is something that can go on day in, day out and can have a really profound effect on you and the people around you.”
Having to cancel important plans both at work and with family and friends can leave you feeling like your chronic pain monopolizes your schedule. This can contribute to feelings of isolation and low moods. “While I was writing my book I spoke to people who had to miss weddings and graduations. These are huge life events,” says Murnane, “I think often the guilt they felt from having to miss it and let their loved ones down impacted them more than missing it themselves.”
If you’re already feeling exacerbated and depressed as a result of dealing with your symptoms of endometriosis, you’re more susceptible to feeling like you’re the one letting friends down. Studies have tied depression to extreme guilt. Both play into each other and make coping with your endometriosis diagnosis even more difficult.
“Depression is often characterized as anger turned inwards. This may be anger at life, at the pain, or at other people. When we feel powerless, one of our defense mechanisms is to become angry,” says Saddington. “You can’t separate your mind and your body, they’re linked and work in conjunction.”
Misunderstandings about endometriosis in your relationships
The World Endometriosis Research Foundation has conducted research that highlights how many myths and misconceptions exist surrounding endometriosis, even within the medical community. This may mean that even explaining your symptoms to loved ones can be extremely difficult.
In her work, Murnane produces resources to help people explain endometriosis to their partners and friends. She outlines that even if your friends and family are there for you, it can still be hard to explain when you’re already tired from managing your symptoms. “People with chronic pain get really good at pushing through,” she says. “Often I don’t think people are aware of how much pain you’re truly in because you’re either too embarrassed to say or you don’t want to be the serial canceller.”
Often life can’t come to a stop, so taking time off when you’re experiencing a chronic pain flare-up can feel overwhelming. Canceling plans with friends is one thing but managing your work life can lead to difficult conversations with your boss. “When we talk about work we often think about office jobs. However, if you work as a driver you don’t have the opportunity to get up and walk around if you’re uncomfortable. You can’t work from home,” Murnane says. “If you’re a healthcare worker or working on a factory floor, doing jobs that are really physically demanding, then they can be really tough if you’re experiencing chronic pain.”
Job insecurity, and feeling burnt out or like you’re letting your team down can add to the mental strain of living with chronic pain.
Remembering to be kind to yourself in the moments where you feel overwhelmed by your chronic pain is so helpful. But having the resources and experts to speak to are critical in helping you develop coping mechanisms, and may leave you feeling more supported.
Verbalizing your pain to empower you
Seeing a light at the end of the tunnel during a pain flare-up can feel impossible. Saddington explains that by acknowledging your feelings as valid, you’re committing to showing up for yourself. “If you’ve never experienced therapy you might feel you can’t acknowledge your mental health or you should have a stiff upper lip about it,” he says.
However, studies have proven that pain associated with endometriosis may make you far more susceptible to feeling anxious or depressed. Just as you’d seek help for dealing with physical symptoms, experts may be able to help you with mental symptoms.
Murnane also highlights the importance of self-compassion. “Sometimes I will pretend I’m going to the bathroom when I’m not. I will get in my tub and close my eyes for ten minutes. There are small things I do to help with my mental health. Most of it is just taking the time to take care of myself,” she says. Find the small things, such as mindfulness, baths, reading, or anything you enjoy, and prioritize them and yourself.