The alarming text came to my phone on a Friday afternoon: “I want to die.” It was from a friend with endometriosis who was suffering with intense pain again, and feeling like the continual suffering was unbearable. That text led to a visit to the ER, which ended up resulting in a three day hospital stay in a short stay mental health unit. Unfortunately, not much has changed: the cycle of pain continues, and my friend remains uncertain of how to cope with the severe pain which is sure to come again.
Sadly, this was not the first incident of severe depression and suicidal thoughts that I have been aware of associated with endometriosis. In the past month alone, throughout our support network I am aware of four other instances where people expressed suicidal thoughts and wanting to die because of the despair and hopelessness of dealing with pain that most people do not understand. And many people with endometriosis continue to suffer in severe pain despite medical treatment, so it can be particularly difficult to be hopeful for a better future.
Chronic pain from any cause has been shown to be associated with depression. This is not a surprising finding, as anyone who has lived with pain for any significant amount of time will know that the social isolation, inability to participate in normal activities of daily life, and sheer exhaustion, can lead to feelings of depression and hopelessness. Patients with chronic pain have a two to five fold increased risk for developing depression, and each condition affects the other: depression can worsen the perception of pain, and pain can worsen depression. Furthermore, studies have shown that when pain is moderate to severe, impairs daily functioning, and is difficult to treat, it is associated with worse depressive symptoms and outcomes.
Although the association between endometriosis in particular with depression has not been studied, it stands to reason that endometriosis may be even more highly associated with depression than other chronic pain conditions. In general, pain associated with endometriosis tends to be dismissed by medical professionals and thus undertreated (for example, see this story). And people with endometriosis may not get the social and emotional support they need from those around them, because of a general lack of understanding of the disease and the effects it can have on a person’s body and spirit.
One study has examined the association between chronic pain conditions and risk of suicide. Most clinical pain diagnoses were associated with an increased risk of suicide, and the highest risks were for psychogenic pain (pain without a known physical cause, usually attributed to psychological factors), migraines, and back pain. It is particularly interesting, but maybe not surprising, that psychogenic pain posed the greatest risk for suicide in this study. Because psychogenic pain is defined as pain without known physical cause, it is impossible to treat the underlying cause, since it is unknown, and the pain symptom itself is probably undertreated by doctors who claim that the cause is all in the patient’s head.
This type of thinking will sadly be very familiar to endometriosis patients. Many of us have been told that our pain is all or mostly in our heads, or is psychological rather than physical (for example, see this story). Imagine the despair that can be caused by dealing with severe pain, worse than childbirth, month in and month out, or sometimes even every day, and being told by doctors that the pain was just in your head? Knowing it is not, and that without treatment you will have to live with this pain for the rest of your life? And imagine losing your job, or having your partner leave, because of your disease. It is easy to see why depression turns to hopelessness, turns to thinking you would rather die than live.
However, with compassionate and appropriate medical care, the pain of endometriosis can be treated. Pain can be treated with appropriate medical pain management, with diet, acupuncture, and physical therapy. Endometriosis itself can be treated with surgical excision, often with long-lasting relief from pain. Nancy Petersen, who founded the first surgical excision center for endometriosis in the U.S., with David Redwine, MD, has stated that although approximately 75 percent of their patients had previously been told their pain was in their head, most of their patients had biopsy-proven endometriosis, and had pain relief after endometriosis was surgically removed.
Nancy Petersen has stated that “endometriosis may not be fatal, but despair can be.” We need to continue to move towards recognition of endometriosis as the life-altering disease that it is. We need to continue to strive to make effective treatment accessible for all patients with endometriosis. We need to make all care providers understand the severity of the pain that endometriosis can cause, so that the pain itself can be treated appropriately. And we need to recognize the potential for depression and even suicide, and bring these difficult discussions of the emotional consequences of living with endometriosis out into the open.