Endometriosis on mental health

Impact of Living with Endometriosis on Mental Health

(All research studies mentioned in this article about the impact of endometriosis on mental health enrolled people with assigned female gender at birth. However, to be inclusive to all people with endo, we use people throughout the article.)

Being diagnosed with endometriosis (endo) and living with it can bring up a lot of emotions. It can mean making space for changes that you may never have predicted or accounted for. Endometriosis impacts nearly 200 million people worldwide, but there is pernicious misinformation and a lack of awareness and understanding among the medical community and the larger society. This misinformation and lack of awareness stand in the way of receiving a timely diagnosis.

It takes, on average, over seven years for a person who has endometriosis to get a diagnosis. Essentially, this means experiencing intense pain, feeling unheard over and over, and being gaslit at a systemic level for at least seven years. 

In most countries, managing the pain and heavy periods remain the first line of treatment for endometriosis. If one is lucky, they can access endometriosis excision surgery. However, the impact of endometriosis goes beyond just the physical. The effect of endometriosis on mental health and the emotional wellbeing of the person is enormous.

The mental health struggles of living with endometriosis vary from person to person. The debilitating chronic endometriosis pain, one of the most common symptoms, is a critical factor that impacts the quality of life and mental health. Along with the cyclic pelvic pain, one may also experience other types of pain in varying degrees: 

  • Non-menstrual pelvic pain
  • Pain during ovulation, urination, and/or bowel movements
  • Pain during sex
  • Sciatic pain
  • Pain post and during orgasms
  • Widespread full-body pain. 

Research published in the International Journal of Women’s Health Health looked at the link between common symptoms of endometriosis and mental wellbeing. 

It found that a person experiencing chronic pelvic pain (CPP) is likely to feel higher levels of anxiety and depression, which can further amplify the perception and severity of pain, thus placing them in a vicious circle of physical and psychological distress. 

Living with Endometriosis

Figure 1: The vicious circle of chronic pelvic pain and psychological disease.

Pelvic Pain Causes Further Effects of Endometriosis on Mental Health

A study found that endometriosis patients with pelvic pain had poorer quality of life and mental health than those with asymptomatic endometriosis. It also showed that non-menstrual pelvic pain impacts all the variables of a person’s life. Thus, the study emphasized psychological interventions as an essential aspect of the endometriosis treatment plan and pain management treatments and interventions.  

In another meta-analysis of 99,614 people from 24 different studies, researchers found that chronic pelvic pain was a primary factor contributing to the higher rates of depression in patients with endometriosis. This study emphasized that treating this kind of depression with antidepressants without the efforts towards managing the chronic pain would indeed be ineffective. 

The Emotional Reality of Endometriosis

Studies have tried to understand the impact and management of endometriosis within the medical healthcare system. But still, the health system has largely overlooked the effect of endometriosis on mental health. 

Living with endometriosis can make daily activities a struggle, mainly due to the unpredictability of pain and fatigue. The struggle makes some tasks nearly impossible. These tasks can include planning, working, socializing, exercising, eating, or even basics like cooking, cleaning, and bathing. This inability fuels guilt and anxiety. Furthermore, the debilitating pain being reduced to “just a bad period” or “psychosomatic” often leaves one feeling gaslit, isolated, depressed, and sometimes suicidal.

This distress increases due to the lack of systemic and psychosocial support. When the BBC spoke to 13,500 people (female assigned at birth) with endometriosis, more than 50% of the respondents felt suicidal ideations. 

This is a battle

For someone living with chronic pain every day, even a short-lived moment of low pain brings ease, which allows one to hope for a future not controlled by pain. However, grief sets in quickly as fatigue and flare-ups follow. These changes make life with endometriosis incoherent and an inescapable dance between hope and grief. A Swedish study concluded that people living with painful endometriosis underwent a constant struggle for coherence in their lives. It emphasized that healthcare providers should validate this struggle by understanding the disease-related grief. 

The anxiety around pain and health, the grief related to the future, the loneliness and isolation often bring up the feeling that chronic pain has monopolized one’s life. Endometriosis becomes the central point around which all decisions revolve. It takes away the body’s ability to be reliable and the capacity to feel safe within it. It often changes the way one views themselves and takes the world in. 

One of the ways we feel safe in the world is by feeling safe in our bodies. Then what happens to our sense of safety when the body is a constant source of never-ending pain? 

The Trauma of Endometriosis

Experts define trauma as the experience of being left alone with one’s pain. Endometriosis isn’t different. Having to constantly explain one’s pain to medical doctors, families, and friends and still not being believed is an isolating and traumatizing experience. For some, this experience of being gaslit gets stored in the body and pushes the nervous system into a hypervigilant state (Fight, Flight, Freeze). 

This experience of trauma can bring up various responses, anger being one of them. The anger can be at the world, the state, the body, the systems, other people, or the pain. It becomes our protective mechanism in response to the powerlessness that one feels while coping with endometriosis. 

The Way Forward

In treating endometriosis, it becomes necessary to consider its impact on mental health and provide psychosocial support to people with endometriosis and their families. Unlike the conventional medical belief that solely focuses on the physiological aspects, a multidisciplinary approach integrating the mind and the body is necessary

A trauma-informed psychotherapist specialized in treating endometriosis, and chronic pain can be helpful. A therapist trained in chronic pain management understands endometriosis, related diagnoses, and its trauma. This understanding is an integral part of the healing process. Seeing the light at the end of the tunnel is complicated and sometimes impossible with pain. Verbalizing the pain, having the hardships validated, acknowledged, and believed can be an empowering experience. Just as people seek medical help for their physical symptoms, seeking help for mental health struggles is an integral part of the endometriosis journey. If therapy is hard to access, support groups for endometriosis can be a step forward. You should know that you are not alone in your experience, and you can have support. The supports that you get can be a lifeline to your mental health. 

Author: Anindita Kundu, Trauma Psychotherapist. 

How has endometriosis impacted your mental health? Have you considered working with a mental health specialist to help you?

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Sisir Kumar kundu

Excellent article. It requires awareness among the people. Most of the people are not at all conversant with the situation. Highly educative.

Jan Velayas

I’ve been struggling with abdominal and rectal pain since my total hysterectomy in 2018. I’m on my third gastroentologist and I’m not sure he’s on the right track. My gynecologist who did the surgery acts like he has no idea what I’m talking about although the post operative pathology report clearly says he removed scar tissue and their was both endrometriosis and ademnomyosis. I have no idea where to turn since the pain is daily and my life has stopped.

Saeid Gholami

Hi Jan, thank you for sharing your experience. Have you considered meeting with an endometriosis expert? Now that you have the diagnosis, you might benefit from seeing an expert for further treatments.

Nancy House

My daughter is currently in a phy h hospital on a suicide watch. She’s facing a hysterectomy and castration as the final solution with no guarantee that it will resolve her pain. She’s had three surgeries in the past three years. Been put on as needed stays at her job without benefits for all the reasons name in this article. I need an emergency facility for her to go to to treat her trauma and grief after surgery in the denver area preferably or that takes Medicaid since that is the only insurance she can get with status of her emplornt as a result of this horrible disease.

Saeid Gholami

Hi Nancy, sorry to hear about your daughter’s condition. I hope the next surgery will be a significant step for her to regain her wellness. Re the facility, we do not work with any facility at this point. But I suggest asking her current mental health provider for information.

Kay

Hello, I have always had irregular menstrual, sever pelvic, leg, back, and sharp breast and vaginal pain since I was 13 years old. In 2017 age 36, I got married and wanted to start having kids. After trying to conceive for a year, my OBGYN stated that I don’t have PCOS or endometriosis but recommended that I start fertility treatments. In 2020, I began fertility treatments (IUI) and underwent ultrasounds to which discovered fibroids. I was told they were the cause of my sever pain. After being told that I don’t need them removed, no help with the sever menstrual pain, and no success with IUI. July of 2021, I came to the conclusion that I will always have this pain unless I decided not to have children and get a hysterectomy. However, I wanted to see if IVF could help and the possibility of seeing if my fibroids was affecting my uterine lining. If so, could they be removed. This year I changed everything and started my search for answers. I found a new OBGYN that specializes in infertility and fibroids and just took my first MRI that discovered endometriosis, a cysts on my cervix, and 10 fibroids. I know the results sound like a lot but I thank God that I know have answers. I am now 40 years old and hoping that with this information, I have a better chance of being helped or healed and can now be able to have children. Through it all I do recognize that my mental health has taken a hit and I am on an emotional roller-coaster. If anyone can recommend a mental health professional with experience with endometriosis in the DMV area that would be great.

Saeid Gholami

Hi Kay, thank you for sharing your experience, and I am sorry that you have had such a long and complex way to a clear answer. We are building a list of mental health experts who are willing to help people with endometriosis just like you. Please go to this page and enter your name and we will reach out to you when we find an expert for you. https://icarebetter.com/mental-health/

Ervin Bradley

This is one of the best articles I’ve read on Endometriosis in a long time. Everything you wrote is exactly what my wife is experiencing and its very scary. Seeing not only the physical symptoms, the write-off from other physicians but mental things as well lets me know she is not alone in this. Can you please provide us with some help in coping with this? Are there studies happening? We do not mind traveling anywhere. I cannot take her suffering anymore. This has been going on for more than a decade and we both just feel so helpless.

Anindita Kundu

Hi Kay,

Thank you for sharing your journey with us. Thank you for your vulnerability and courage. I can imagine how hard and complex this journey must have been for you. To sit with pain and not knowing why, can feel agonising. I am thankful you finally found an answer. I hope you find the help that you need and the onward path to answers is less complex.

Ervin Bradley

Thank you for writing this article. This physically brought me to tears reading it. It feels good to know my wife is not alone in this battle. Just experiencing the write-offs from other doctors not being engaged or even putting up much of an effort to care is so heartbreaking. One doctor tried to convince her the pain was in her head only. I know I am very late replying to this article and maybe asking for help but is there a way still for resources? What can we do to help her with this pain? Are there any studies going on? I do not mind traveling anywhere to get her the help she needs and at this point, deserves. so Please, if anyone is reading this and can help with resources my email is markup165@gmail.com. Thank you and my prayers go out to any of the other families going through this.

Saeid Gholami

Hi Ervin, thank you for your comment and being such a thoughtful and supportive partner. What kind of help are you looking for; a better surgeon/doctor, mental health support, a support group, or all?

Anindita Kundu

Thank you for your kind comments. I am utterly at a loss of words reading all the comments. I am glad this article resonated with you. Also it’s heartwarming to see your support for your wife. I am very cognisant that it must not have been easy for either of you. Helping with pain would be a multifold approach. Please feel free to let us know what you are looking for? You can also find resource on excision specialists and doctors on icarebetter’s page.

Laura

I cried reading this. It’s very true. In my worst months of pain I’ve wondered if I even want this life. When the pain is better I have wishes and hopes. But I miss myself, I miss my ability to care for myself, I miss my income earning ability. I miss my friends. I’m constantly exhausted after the least amount of self care or tasks. I can’t eat things I love. I’m taking hormones I never wanted hoping I don’t lose more organs to surgery. It’s fucking brutal. And when I tell people I have this disease they look at me blankly, they have no idea I just shared that I have a debilitating incurable illness that runs my life and wrecks my body.
it is lonely. So so lonely. Even with the support I do have.

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