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Living with Endometriosis and Chronic Pain

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Endometriosis is a health condition affecting people with functioning ovaries, with symptoms that can include severe, chronic pain and significantly impact one’s quality of life. As diagnosis and treatment can already be challenging, living with endometriosis can also become increasingly taxing on people’s mental health.

What is endometriosis?

Endometriosis is a condition in which tissue similar to the lining inside the uterus grows outside the uterus, such as around the ovaries or fallopian tubes, where it typically shouldn’t. Because this tissue behaves similarly to the lining inside the uterus, it is affected by the body’s hormonal changes during each menstrual cycle. However, because it is located outside the uterus, it cannot leave the body in the same way as the uterine lining does. Where the tissue grows can also contribute to additional symptoms. For example, when the tissue affects the ovaries, it may lead to cysts or cause organs and tissues to become more stuck to one another. These changes can contribute to uncomfortable symptoms and increased pain for people experiencing endometriosis.

Common symptoms can include:

  • Increased pain during menstrual cycles, s-xual activity, bowel movements, or urination
  • Unusual bleeding, such as heavier bleeding during menstrual periods or bleeding outside of the menstrual period
  • Bodily changes, such as persistent fatigue and nausea
  • Infertility: As tissue growth around certain parts of the reproductive system can affect the typical conception process, endometriosis can lead to challenges with getting pregnant or, in some cases, infertility
  • Increased inflammation in the body
  • Pelvic discomfort and abdominal pain
  • People may also experience fainting, especially during the menstrual period

Because the intensity and frequency of these symptoms differ individually, not every person with endometriosis may experience them the same way. The exact root causes of endometriosis are yet to be fully understood, while retrograde menstruation (e.g., menstrual blood flowing backward instead of leaving the body) and other immune- and hormone-related changes are considered to be linked to the development of endometriosis. Treatment options may include medication for pain and symptom relief, surgery for tissue removal, and other supportive measures to one’s lifestyle.

Living with endometriosis and its effect on our mental health

Endometriosis involves managing severe and persistent pain and discomfort. Living with chronic pain can take a heavy toll on one’s life and can become a very consuming and tiring experience for many people. Symptoms can become very physically limiting and disabling, interrupting one’s daily activities and bringing a loss of mobility. Living with such chronic pain can also cause profound emotional distress, unpredictability, low mood and energy, which can also cause loops of anxiety, depression, feelings of loneliness and isolation, and more. Research shows that people who experience endometriosis tend to experience an elevation in mental health challenges, including increased diagnoses of depression and anxiety.

Living with chronic pain can also greatly affect one’s sense of identity and felt autonomy. For people who experience chronic pain, it can be quite common to feel like their sense of self or bodily autonomy has been lost or eroded, or even “stolen” from them. As chronic pain can feel physically limiting and disabling, people may experience their personal aspirations and responsibilities as also being interrupted or changed, including foregone career advancement or changes to caregiving plans. For some people, this can affect their perception of their self-worth and confidence. All of these thoughts and feelings can also lead to a deep sense of grief and loss, which can accompany feelings of missing one’s own self, frustration, sadness, and also feeling very angry and disappointed.

As endometriosis brings a lot of pain and discomfort in the body, it also often affects one’s s-xual activities, including pain and discomfort during the activity, decreased interest and energy, and more. These experiences can also create cycles where one feels their sense of intimacy, relationship satisfaction, and body image get negatively affected.

It can also be common for people living with chronic pain and unpredictability to feel a sense of decreased perceived safety, which can show up as more catastrophizing thinking, where people notice that they have started to think more about what could go wrong, anticipate the worst scenario without even wanting to do so, and have a harder time imagining that things could go okay. These experiences can also lead to feelings of anxiety and may add to people’s existing uncomfortable symptoms and feelings.

Endometriosis and systemic barriers

Overly biological perspectives on reproductive health and chronic pain management can lead us to see healthcare problems solely as “individual pathology” and overlook the intersectional and structural effects of gender, race, age, and power on one’s health.

When we are navigating a health condition, we often navigate not only its effects on our bodies but also assumptions and ascribed meanings about those symptoms in society, the healthcare system, and more. Similarly, endometriosis is a health condition where people can run into a lot of gendered assumptions, menstrual taboos, and systemic injustice.

For example, people’s real and debilitating symptoms of endometriosis can sometimes be brushed off as regular menstrual pain and not taken seriously, which can cause delays in their diagnosis and treatment. This “brushing it off” as expected menstrual pain can also feel like delegitimization because historically, menstrual and reproductive suffering has been misattributed to a level of “neuroticism” and “being difficult,” a view that disregards people’s embodied knowledge about their own bodies, limits their care options, and can make them feel like they are not only fighting their bodily pain but also people’s limited assumptions about their bodies.

For example, studies show that it is common for participants to report that they received an accurate diagnosis 4-11 years after they first experienced symptoms (Requadt et al., 2023). People living with endometriosis also often report that their severe pain and discomfort are frequently underestimated and normalized by others, including partners, family, and sometimes even healthcare professionals, as “normal menstrual cramps” or sometimes even labeled as “attention-seeking behavior.” Such diagnostic- and treatment-related challenges can bring additional financial and mental burdens for people living with endometriosis. This can create additional emotional strain, as well as feelings of isolation and loneliness. Similarly, people may tend to self-silence due to perceived burdensomeness, in addition to fear of being misunderstood and increased frustration, which can generalize to other areas of life and ultimately affect one’s own confidence and trust in themselves and others.

How can therapy help?

Therapy can help people living with endometriosis by supporting, particularly, the emotional, cognitive, and sensory aspects of their treatment. Therapy can help:

  • Make sense of our diagnoses and make space for adjustment and integration
  • Build flexible and empowered coping strategies
  • Address and help process the experiences of diagnostic frustration
  • Help reframe overwhelming thinking patterns, such as catastrophizing and increased pain anticipation
  • Build acceptance and self-compassion aligned with one’s values
  • Process grief and loss
  • Address symptoms of depression, anxiety, or other mental health difficulties that one experiences along with their endometriosis diagnosis
  • Address relationship issues in couples, helping restore intimacy and connection
  • Help cultivate self-efficacy, confidence, and self-trust
  • Address the psychological effects of systemic barriers

Endometriosis can be an incredibly painful and challenging experience for many people. While receiving medical care is essential, also making room for processing and integrating the emotional and psychological impact of our diagnosis and chronic pain can be an important step in our treatment and can allow us to gently reconnect with our sense of self and agency.

Takeaways:

  • Endometriosis is a health condition where tissue similar to the uterine lining grows outside the uterus, which causes symptoms such as severe and persistent pain, as well as unusual bleeding, fatigue, inflammation, and fertility challenges.
  • Chronic pain and unpredictability involved in endometriosis often lead to increased physical limitations and emotional distress. The effects also take a toll on our mental health, affecting mood, identity, autonomy, relationships, body image, and sense of safety, and more.
  • In addition to individual distress, systemic barriers such as gendered assumptions and menstrual taboos can lead to people’s symptoms being dismissed, which can lead people to experience delays in their diagnosis, added burdens, isolation, and reduced confidence and self-trust.
  • Therapy can support people living with endometriosis, particularly by addressing emotional, cognitive, and sensory aspects of treatment. Therapy can support in building coping strategies, processing grief and diagnostic frustration, addressing anxiety and depression, strengthening self-compassion and self-efficacy, and supporting relationships.

References & further reading:

  • Brauer, L., De Cruppé, W., & Geraedts, M. (2025). “Take me seriously”: A qualitative interview study exploring healthcare experiences of endometriosis patients. PLoS ONE, 20(5), e0323883. https://doi.org/10.1371/journal.pone.0323883
  • Cunnington, S., Cunnington, A., & Hirose, A. (2024). Disregarded, devalued and lacking diversity: an exploration into women’s experiences with endometriosis. A systematic review and narrative synthesis of qualitative data. Journal of Endometriosis and Uterine Disorders, 8, 100087. https://doi.org/10.1016/j.jeud.2024.100087
  • Cole, J. M., Grogan, S., & Turley, E. (2020). “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity. Feminism & Psychology, 31(2), 171–191. https://doi.org/10.1177/0959353520930602
  • Giacomozzi, M., Brazelton, J., Jeswani, K., Ruumpol, D., Verdonk, P., & Nap, A. (2025). Insights from focus groups with trans and gender-diverse people with endometriosis: stories you tell, stories you don’t. S-xual and Reproductive Health Matters, 33(1), 2562682. https://doi.org/10.1080/26410397.2025.2562682
  • Laganà, A. S., La Rosa, V. L., Rapisarda, A. M. C., Valenti, G., Sapia, F., Chiofalo, B., Rossetti, D., Frangež, H. B., Bokal, E. V., & Vitale, S. G. (2017). Anxiety and depression in patients with endometriosis: impact and management challenges. International Journal of Women’s Health, Volume 9, 323–330. https://doi.org/10.2147/ijwh.s119729
  • Requadt, E., Nahlik, A. J., Jacobsen, A., & Ross, W. T. (2023). Patient experiences of endometriosis diagnosis: A mixed methods approach. BJOG: An International Journal of Obstetrics & Gynecology, 131(7), 941–951. https://doi.org/10.1111/1471-0528.17719
  • Thiel, P. S., Bougie, O., Pudwell, J., Shellenberger, J., Velez, M. P., & Murji, A. (2024). Endometriosis and mental health: a population-based cohort study. American Journal of Obstetrics and Gynecology, 230(6), 649.e1-649.e19. https://doi.org/10.1016/j.ajog.2024.01.023
  • Warner, R., & Avery, J. C. (2026). Endometriosis at the Intersection: Trauma, Identity, and the Struggle for Equitable Care-A Narrative Review. Women’s Reproductive Health, 13(2), 555–574. https://doi.org/10.1080/23293691.2026.2636611
  • World Health Organization: WHO & World Health Organization: WHO. (2025). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis
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