by Deanna Denman, PhD, Licensed Psychologist, Clinical Health Psychologist
Endometriosis is intimately linked to mental health. While depression and anxiety together impact 10-20% of the general population, metanalyses (studies looking at the results of other studies to find trends) show higher rates of depression and anxiety in people with endometriosis (Delanerolle et al., 2021; Estes et al., 2021). Unfortunately, people with endometriosis also have a higher rate of self-directed violence (suicide and other forms of self-harm) than women without (Estes et al., 2021). In our efforts to spread awareness of endometriosis and effective treatments, it’s important we discuss the impact of living with endometriosis on mental health as well and normalize finding support.
Several factors related to endometriosis have demonstrated impact on mental health and several others are currently being researched. Pre-surgical and persistent post-surgical pain, hormone treatments, inflammation, and significant medical trauma may all contribute to depression, anxiety, and potentially PTSD in people living with endometriosis.
Pain & Mental Health
Chronic pain is the most recognized symptom of endometriosis. Painful periods, painful sex, and non-cyclical pelvic pain are associated with depression, anxiety, and self-harm. We have evidence more broadly that living with chronic pain causes depression and anxiety. Mood disturbance and anxiety are also associated with prolonged stress, disturbed sleep, disability, and isolation (from being unable to participate in social activities)—common concerns related to endometriosis.
In addition, depression makes the experience of pain worse. This is not simply a statement of “your attitude affects your pain.” The pathways to the brain that receive information about pain, also connect to the areas of the brain that process emotion (Sheng et al., 2017). We see decreases in neurotransmitters in the central nervous system that impact mood (i.e., dopamine, serotonin, and norepinephrine; IsHak et al., 2018; Sheng et al., 2017). There is also evidence of changes in the nerve factors and genes that affect re-wiring in the brain (Mamillapalli, et al., 2018; Sheng et al., 2017).
You may have read, or heard your doctor talking, about “central sensitization.” The International Association for the Study of Pain (IASP) has renamed this “nociplastic pain (Raja et al., 2020).” Research has shown that prolonged experience of pain can cause changes in the brain and spinal cord that magnify pain signals (Raja et al., 2020). The chronic pelvic pain among those suffering from endometriosis places people at high risk for developing nociplastic pain and other pain conditions (Li et al., 2018; Tokushige et al., 2007). On a positive note, there is evidence that our nervous systems can re-wire to turn the pain signals back down after the original pain source is resolved and this re-wiring can be supported with the help of a pain psychologist (Salomons et al., 2014).
Hormone Treatments and Mental Health
The hormone treatments commonly recommended for endometriosis can impact mood. Depression and anxiety are commonly recognized, but underappreciated, side effects of treatment with GnRHa’s (Warnock et al., 1998). One study showed prior use of GrHa’s and OCPs was associated with increased rates of depression (Estes et al., 2021). The larger literature shows mixed effects of combined hormonal contraceptives on mental health. There is, however, evidence to suggest there are potential negative effects of hormonal oral contraceptives among women who are already vulnerable to depression/anxiety (Siddall & Emmott, 2021).
Medical Trauma & Mental Health
The medical field is increasingly becoming aware of the trauma associated with life-altering and life-threatening medical diagnoses. Most often when thinking about a “trauma,” we consider some external threat (e.g.., car accident, war, sexual assault). Medical traumas, however, account for diagnoses, treatments, and medical events that may result in development of trauma symptoms (ISTSS, 2020). As a chronic, life-altering condition, endometriosis may result in medical trauma. The prolonged stress of living with pain, various medical treatments, and the impact of the condition on overall quality of life (e.g., work, social life, finances) can all contribute to medical trauma.
Nancy recently wrote an article on the rampant gaslighting in the medical community around endometriosis (https://www.linkedin.com/pulse/endometriosis-gaslighting-gold-standard-nancy-petersen/). The frustrations of repeatedly asking for help from your medical team and being denied, shamed, and sometimes blamed for pain can lead to depression, self-doubt, and shame. The delays in diagnosis of endometriosis often result in people suffering without explanation of their pain, but worse with messaging that their pain is “in their head,” or that endometriosis doesn’t cause the symptoms they are experiencing. On average, it still takes more than 7 years to receive a diagnosis of endometriosis. This does not include the time it takes obtain a consult with an expert and receive treatment (i.e., surgery).
Mental Healthcare & Endometriosis
All of these factors, of course, highlight the need for expert surgical excision and pelvic floor rehabilitation to treat endometriosis, rather than simple medication management. It is, however, also evident that ensuring patients have access to psychological care in the management of endometriosis is key to their overall wellbeing.
This is important. You do not need psychological care instead of medical care. I am advocating for mental health care in ADDITION to, and as part of, medical care. Mental health care is integrated in care of patients with other health conditions— we have long understood the psychological sequelae of cancer diagnoses and involved psychologists from the point of diagnosis through survivorship.
A good mental health provider can help with processing your experiences and frustrations around your endometriosis. Psychotherapy can also help patients work through medical trauma or trauma histories that make access to adequate medical care difficult (i.e., history of sexual trauma or abuse). Finally, some providers specialize in working with patients with chronic conditions and are trained to help manage chronic post-surgical pain, teach you relaxation techniques, and provide communication strategies to assist in advocating for your care and your needs within your relationships.
See tips on Choosing a Mental Health Therapist
Delanerolle, G., Ramakrishnan, R., Hapangama, D., Zeng, Y., Shetty, A., Elneil, S., … & Raymont, V. (2021). A systematic review and meta-analysis of the Endometriosis and Mental-Health Sequelae; The ELEMI Project. Women’s Health, 17, 17455065211019717.
Estes, S. J., Huisingh, C. E., Chiuve, S. E., Petruski-Ivleva, N., & Missmer, S. A. (2021). Depression, anxiety, and self-directed violence in women with endometriosis: A retrospective matched-cohort study. American Journal of Epidemiology, 190(5), 843-852.
International Society for Traumatic Stress Studies. (2020). Medical trauma clinician fact sheet. Retrieved from https://istss.org/ISTSS_Main/media/Documents/Medical-Trauma-Clinician-Fact-Sheet-2.pdf
IsHak, W. W., Wen, R. Y., Naghdechi, L., Vanle, B., Dang, J., Knosp, M., Dascal, J., Marcia, L., Gohar, Y., Eskander, L., Yadegar, J., Hanna, S., Sadek, A., Aguilar-Hernandez, L., Danovitch, I., & Louy, C. (2018). Pain and depression: A systematic review. Harvard Review of Psychiatry, 26(6), 352–363. https://doi.org/10.1097/HRP.0000000000000198
Li, T., Mamillapalli, R., Ding, S., Chang, H., Liu, Z. W., Gao, X. B., & Taylor, H. S. (2018). Endometriosis alters brain electrophysiology, gene expression and increases pain sensitization, anxiety, and depression in female mice. Biology of Reproduction, 99(2), 349-359.
Salomons, T. V., Moayedi, M., Erpelding, N. and Davis, K. D. (2014) A brief cognitive-behavioural intervention for pain reduces secondary hyperalgesia. Pain, 155 (8). pp. 1446- 1452. ISSN 0304-3959 doi: https://doi.org/10.1016/j.pain.2014.02.012
Sheng, J., Liu, S., Wang, Y., Cui, R., & Zhang, X. (2017). The link between depression and chronic pain: Neural mechanisms in the brain. Neural Plasticity, 2017, 1-10. https://doi.org/10.1155/2017/9724371
Siddall, J. R., & Emmott, E. H. (2021). Hormonal Oral Contraceptive Use and Depression and Anxiety in England.
Warnock, J. K., Bundren, J. C., & Morris, D. W. (1998). Depressive symptoms associated with gonadotropin‐releasing hormone agonists. Depression and anxiety, 7(4), 171-177.