“Take Back My Life Tuesday”
Endometriosis is a disease that can cause chronic pain and infertility. A new study shows that the condition is also linked to mental health issues, and that the risk for patients is highest at the time of endometriosis diagnosis.
Lily Artymko experienced heavy bleeding as soon as her menstrual cycle began, accompanied by severe pain that continued throughout her adolescence. At age sixteen, she was diagnosed with endometriosis, which coincided with diagnoses of both depression and anxiety. She says at the beginning, she didn’t see a connection between her mental health issues and endometriosis.
For over a decade, Artymko tried different medications and surgical treatment that provided temporary relief, but in 2022 her symptoms worsened—and so did her mental health. “I was crying all the time, and I was constantly having anxiety and panic attacks,” she says. “And it got to the point where I couldn’t go into a store because I was afraid I’d be walking and just gush blood everywhere.”
“I was at the point where I was just done. I couldn’t deal with it anymore,” she says.
“We found that two-thirds of people diagnosed with endometriosis were also diagnosed with a mental illness within ten years”
Endometriosis and mental health
Endometriosis affects approximately 1 in 10 women worldwide. It is a chronic disease in which endometrial-like tissue grows outside the uterus, and the often-debilitating symptoms can significantly impact a person’s quality of life. Previous studies have found that endometriosis is linked to mental health conditions, specifically anxiety and depression.
A new study by researchers at Mount Sinai Hospital and Temerty Faculty of Medicine’s Department of Obstetrics and Gynecology in collaboration with ICES Queen’s used linked healthcare data to analyze the association between a diagnosis of endometriosis and the first occurrence of any mental health diagnosis in the following 12.5 years. This was a unique opportunity to study endometriosis in a universal healthcare system and was only possible due to the nature of ICES administrative data.
“We found that two-thirds of people diagnosed with endometriosis were also diagnosed with a mental illness within ten years,” says lead author Peter Thiel, a fellow in Minimally Invasive Gynecologic Surgery at Mount Sinai Hospital. “That translates to a rate that’s 1.3 times higher than for people who don’t have endometriosis.”
Thiel adds that the mental health risk was highest in the years immediately following an endometriosis diagnosis. Authors also found that seven percent of patients had a mental health related hospital admission or emergency department visit, which may signal more severe mental health concerns.
Artymko now understands how much the disease was affecting her daily life. “Living your life with chronic pain is no joke. There’s no way anybody with chronic pain is not dealing with some sort of depression,” she says.
Screening and compassionate support the best way forward
Ally Murji, head of the Division of Minimally Invasive Gynecologic Surgery in the Department of Obstetrics & Gynecology at the University of Toronto, says that until further research reveals the reasons for why endometriosis is associated with poorer mental health, healthcare providers should be screening their patients for symptoms and connecting them with mental health services. “As surgeons, we must take a holistic approach to our endometriosis patients. Our goal is to improve quality of life and that extends beyond treating endometriosis lesions—addressing their mental health challenges is equally important,” he says.
“Living your life with chronic pain is no joke. There’s no way anybody with chronic pain is not dealing with some sort of depression”
However, further research is needed to determine if treating mental health symptoms will ultimately improve an endometriosis sufferer’s quality of life. It’s possible that a long lag time between the first symptoms and diagnosis, or symptoms being dismissed by care providers, may contribute to worsening mental health. Anecdotally, many women report medical gaslighting and barriers to evidence-based care.
Patient-Centered Care
As Endometriosis Awareness Month approached, Dr. Murji performed a robotic-assisted surgical excision of endometriosis and hysterectomy for Artymko at the end of February.
“I called surgery day ‘Take Back My Life Tuesday.’ I said hello to everyone in that operating room.”
Artymko says that she went from a very dark place to finally realizing that everything was going to be okay. “I have this little spark of joy in me now. I feel like I am much happier…I’ve never experienced being pain free before.”
Her advice for healthcare providers is straightforward: “Listen to the patient. I shouldn’t have had to advocate for myself so hard.” She also sees the benefit in screening for mental health challenges, because if a person’s mental health is not in check she says, there could be more going on than endometriosis pain.
“As physicians, we must try to understand how deeply chronic disease affects our patients. This knowledge allows us to work together with them to create an effective treatment plan that includes mind-body practices, mental health support, medications, and surgery when needed,” says Dr. Thiel.
March is Endometriosis Awareness Month. To learn more, visit the Gynaecology Quality Improvement Collaboration.