endometriosis and depression

Depression with Endometriosis

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depression with endometriosis

Endometriosis causes problems in every aspect of a woman’s life including her mental state. It is a disease that occurs when tissue resembling uterine tissue is found outside of the uterus. It bleeds just like normal uterine tissue and causes extreme pelvic pain. The pain can be around your period or it can be every day. Every person is different. I went a long time with having pain every day and it became unbearable for me. I know personally I have felt like I was not good enough for anyone because of things the disease has taken away from me. I know many women have felt suicidal and some have ended their lives because they could not handle the pain or the struggles that come with the disease.

Doctors don’t take Endometriosis Seriously

When doctors do not take you seriously or act like they do not care what is going on with you, it is hard not to withdraw from the world. Why would you want to talk about something that people do not understand? I have had feelings of not knowing what my next step is because I cannot physically have children. This disease can take a woman’s fertility. How is that an easy thing to handle? I have found myself saying that I am not depressed or I would not be depressed if I did not have the disease as part of my life. However, the reality is endometriosis is part of my life whether I like it or not and I am depressed. After everything I have been through, I have gone through spells of wanting to give up on finding answers. This is because I am tired of medical professionals pushing me aside because they do not know how to help me.

A Hysterectomy at 23 is Depressing

Having to choose to have a hysterectomy at the young age of 23 is depressing enough, but having to explain this every time I go to a new doctor is a horrible experience each time. Even though I fill out the patient forms and put that I have had a hysterectomy, I still get asked when my last period was. It is crazy to me that we fill out these forms and then the nurses and/or doctors do not read them before asking questions. I have had nurses tell me that I am too young to be going through this at my age. I do not need this constant reminder that I will never be able to get pregnant and will be missing out on that experience. Even though I chose to have a hysterectomy, I did not have much of a choice. This is something I struggle with every day. It is depressing to try so many different treatments hoping one will end your pain, and then have nothing to help. I feel like with each doctor’s appointment I lose a little hope of ever being pain free. It is depressing to make plans and have to cancel them because of your health. I always feel guilty for doing this. We did not ask to have endometriosis. I have been to over 20 doctors at 25 years old. This makes me feel like all of my symptoms are in my head because doctors have been unable to tell me why I am still in pain or help get rid of the pain.

Endometriosis Pain is Real: We are not Drug Addicts

Many doctors do not want to give women with endometriosis pain pills because they think that their patients will become addicted to them. So instead, we suffer in pain. Chronic pain is crippling and affects every day life from things like taking a shower, working, cooking, or taking care of children. It also affects you mentally. It is hard to concentrate when you are in pain. Because people cannot see what is going on inside of your body, some may think that you are not in as much pain as you say you are.

Social Support for Endometriosis is Critical

I have been going to counseling for a few months now to help me deal with all of my health issues. It helps to have someone to listen to everything I have going on. There are many Facebook groups for women with endometriosis as well as for supporters that I have found helpful. These include: Endo Warriors, Nancy’s Nook Endometriosis discussion and education, ENDOvisible, among others. There is also an Endo Buddy program through Endo Warriors. When you sign up, you are paired with a woman who has endometriosis. I was paired with someone around my age in my state. We talk almost every day to see how the other one is doing and to help each other deal with our problems, especially ones that are endometriosis related. It is helpful to have someone to talk to that understands what you are going through. Even though I have found it is hard to talk to people about this disease, it does help me mentally to let people know what I am going through and how I am feeling. They may not know what to say, but it is always good to have someone to listen to you. It has also helped me to write about my experience with endometriosis to help other women that suffer with the disease and to gain more awareness for it. It helps to have a great support system. My family and friends have been there for me throughout this entire journey and I am so thankful for that. Without this support, I do not know where I would be.

All of this is very hard to deal with, but this is my reality and the reality for millions of other women. Depression is real with endometriosis and it is time that it is recognized. Too many women have lost their lives to this disease. We are not crazy and our symptoms are not in our head. It is time that we end the silence so that one day women will not have to deal with endometriosis or the other things that come along with the disease.

If you would like to share your story about endometriosis or write about endometriosis research and news, write for us.

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Endometriosis and Risk of Suicide

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Philipa Bridge Cook

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.

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