# Motivation and emotion/Book/2018/Endometriosis and emotion

* Multimedia presentation (3 min)

## Overview

* "One in 10 women in the world suffer from endometriosis. One in 10 women largely suffer in stoic silence. They live with the misdiagnosis, the myths, the endless operations, the hysterectomies, the lost opportunities, the huge cost, the daily struggle to take control of their lives, the fear of infertility, and the dreadful, dreadful pain". MP Gai Brodtmann (2017).
Endometriosis is a chronic, oestrogen-dependent, gynaecological disease characterised by the presence and growth of functional endometrial tissue, stroma and glands in places outside the uterine cavity such as on the ovaries, fallopian tubes, bowels and even in some cases outside the pelvic region (Giudice, & Kao, 2004; Foti, et al., 2018).
In women with endometriosis the endometrial tissue that grows outside the uterus can cause a host of unwanted symptoms that deeply impact the woman's quality of life (Vitale, La Rosa, Rapisarda, & Lagana, 2017). These symptoms can include but are not limited to infertility, painful menstruation (dysmenorrhea), painful intercourse (dyspareunia), chronic pelvic pain, inflammation and irregular menstruation (Lagana et al., 2015; Facchin, Saita, Barbara, Dridi, & Vercellini, 2018).
The disease is estimated to impact the lives of 176 million women worldwide (Adamson, Kennedy, & Hummelshoj, 2010). Due to a lack of awareness, the normalisation of symptoms and dismissal from medical professionals, diagnosis and treatment can take up to 12 years from the initial onset of symptoms, leaving many women to struggle with the debilitating disease on their own (Facchin et al., 2018). This has been found to have a number of negative flow on effects for the mental health and quality of life of sufferers (Facchin et al., 2018; Lagana et al., 2015; Erikson et al., 2008; Vitale et al., 2017; Lagana et al., 2017; Chen et al., 2016).
For these reasons, the intention of this chapter is to help raise awareness of endometriosis and the plight of many women with the disease. To do this, the chapter will explore the multifaceted ways endometriosis impacts the well-being and emotions of sufferers. Current theory and research pertaining to endometriosis, emotion and mood will also be discussed. By understanding the research and theoretical frameworks associated with endometriosis and emotion, it is hoped that a better understanding of the holistic needs of women with endometriosis can be promoted.
Lastly, it is important to define mood and emotion in that, emotion is defined as a short-lasting response to a significant life event with the purpose of motivating behaviour. On the other hand, mood is a long-lasting response that can emerge from unknown or ill-defined processes with the purpose of influencing cognition and internal monologue (Reeve, 2018). However, the incorporation of both mood and emotion paints a more holistic picture of the impacts of endometriosis on emotion.
* Chapter goals
* Discuss the psycho-socio-emotional implications of endometriosis
* Explore current theoretical framework aimed at explaining the connection between endometriosis and psychological well-being
* Examine the role of social sharing in endometriosis-related emotion regulation

## Psycho-socio-emotional implications of endometriosis

Endometriosis has been found to affect the psycho-socio-emotional well-being and functioning of women and is thought to have a flow on effect to their mental health, sexuality, quality of life and social relationships (Facchin et al., 2018). This is evident in numerous studies that have demonstrated higher rates of anxiety, depression and lower quality of life in women with endometriosis (Facchin et al., 2018; Lagana et al., 2015; Erikson et al., 2008; Vitale et al., 2017; Lagana et al., 2017; Chen et al., 2016). Unfortunately, the psycho-pathological link between endometriosis and mental disorders is still yet to be fully explored in the literature (Chen et al. 2016). Nevertheless, the psycho-socio-emotional impact of endometriosis can be broken down into the effect each symptom can have on a sufferer.

### Psycho-socio-emotional implications of symptoms

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#### Chronic pain

One of the most well known symptoms of endometriosis is chronic pain (Lagana et al., 2015; Facchin et al., 2018). The study by As-Sanie et al. (2016) found that endometriosis-related chronic pelvic pain was associated with altered chemistry within the anterior insula and greater anterior insula and affected their connectivity to the medial prefrontal cortex. This was shown to be positively correlated with increased clinical anxiety and depression, as well as pain amplification. This is consistent with other studies which show that pain can be amplified by negative emotions (Van Laarhoven et al., 2012). Further, studies have also demonstrated that employing emotion regulation strategies helps reduce perceptions of chronic pain intensity, stress and depression in endometriosis patients (Naylor, Krauthamer, Naud, Keefe & Helzer, 2011; Donatti, Ramos, Andres, Passman, & Podgaec, 2017).
Endometriosis chronic pain has also been associated with social isolation due to avoiding intimacy, not feeling believed and resigning from work due to recurrent episodes of pain (Mellando et al., 2016). On a broader scale, social isolation has been linked to neural activation in the dorsal portion of the anterior cingulate cortex which has been implicated in the emotional processing of physical pain and is also believed to be a brain structure connected to the activation of sadness (Eisenberger, Lieberman, & Williams, 2003; Fuchs, Peng, Boyette-Davis, & Uhelski, 2014; Vytal & Hamann, 2010). This suggests that the social isolation women with endometriosis may experience may be a reinforcing factor in their perception of pain and lower quality of life. When taken together, it is obvious that the chronic pain associated with endometriosis has a harmful impact on the psycho-socio-emotional well being of sufferers.

#### Sexual dysfunction

Dyspareunia is a common symptom of endometriosis that manifests as either superficial pain in and around the vaginal opening and/or pain during deep penetration (Fritzer et al., 2013). A number of studies have found significant correlations between endometriosis-related dyspareunia and negative implications for sexual functioning, intimate relationships, psychological well-being and quality of life (Fritzer et al., 2013; Culley et al., 2017; Pluchino et al., 2016). A study by Fritzer et al. (2013) reported that more than half the women in their study described being fearful of engaging in sexual intercourse due to concerns of experiencing pain. Consequently, this can impact sufferers[grammar?] emotional well-being as they may experience negative emotions towards themselves, feelings of guilt due to being an inadequate partner and heightened fear of the relationship ending (Fritzer et al., 2013). This is consistent with the study by Thomten, Lundahl, Stigenberg and Linton (2013) who also observed that women experiencing pain during intercourse reported higher levels of fear-avoidance and pain catastrophising, as well as heightened levels of depression and anxiety. In extension of this, Culley et al. (2017) found that the male partners of women with endometriosis also showed increased rates of psychological distress in relation to their partners[grammar?] pain and exhibited feelings of frustration, hopelessness, worry and anger. Infertility has also been shown to play a role in the development of sexual dysfunction, depression, poor marital adjustment and lower quality of life in women with endometriosis (Kucur et al., 2015; Monga, Alexandrescu, Katz, Stein & Ganiats, 2004). However, it has been found that emotion regulation strategies are effective in reducing infertility-related stress (Galhardo, Cunha, Pinto-Gouveia, & Matos, 2013). When taken together these studies suggest that dyspareunia and infertility associated with endometriosis can have a number of negative psycho-socio-emotional consequences for women and their partners.
* Case study
* Jody has been experiencing deep dyspareunia as a symptom of her endometriosis. She has trouble relaxing before sex as she fears pain during intercourse. As a consequence, Jody avoids sexual activity. This has led Jody to feel guilty and as though she is a failure of a wife because she cannot provide for her husbands[grammar?] sexual desires.

#### Inflammation

Higher concentrations of pro-inflammatory cytokines have been found within women who have endometriosis in comparison to women without the disease (Drosdzol-Cop & Skrypulec-Plinta, 2012). An imbalance of cytokine production is believed to result in disordered mental health given that cytokine is thought to modulate emotional states and activate cognitive functions (Kerr, Krishnan, Pucak & Carmen, 2005). Najjar et al. (2013) determined that the dysregulation of inflammatory responses could help to explain the development of mood disorders and symptoms. Furthering this, Nasyrova et al. (2010) also found support for the role of the cytokine network in the development of affective disorders in women with endometriosis by demonstrating a close interaction between the immune and reproductive system. Additionally, the overproduction of these cytokines in women with endometriosis is thought to impair the blood-brain-barrier and compromise areas of the brain associated with emotion and pain processing such as the anterior cingulate cortex, resulting in the alteration of mood and pain perception (Miller et al., 2009; Capuron & Miller, 2011).
Emotion regulation has been found to be associated with lower levels of inflammation while, in contrast, maladaptive emotion regulation has been associated with higher levels of inflammation (Appleton et al., 2013). These findings suggest that the development of an emotional regulation toolkit for women with endometriosis may help reduce inflammation, however further studies would need to be done. Overall, these studies offer support for correlations between the inflammatory symptoms of endometriosis and its effect on emotion. They also further provide support for integrating emotion regulation in treatment plans.

#### Hormone imbalance

Given that endometriosis is a oestrogen-dominant disease it is important to consider the role hormonal imbalance plays on emotions. For the most part, the literature in this area consistently supports that women demonstrate increased likelihood of displaying depressive and anxiety symptoms during times of hormonal fluctuation and backs up the use of oestrogen to alleviate these symptoms (Schmidt et al., 2000; de Novaes Soares, 2001). However, it is postulated that the mood disturbances relating to sex hormones are likely to occur due to drastic estrogenic fluctuations, as studies that have shown unnaturally high levels of oestrogen can increase anxiety and depressive behaviors in rats and mice (Galea, Lee, Kostaras, Sidhu & Barr, 2002; Okada, Hayashi, Kometani, Nakao & Inukai, 1997). It is unclear, however, whether these results are generalisable to humans. Therefore, further research would need to be done to explore this. A study by Heede et al. (2013) produced data that suggests immunological mechanisms may play a role in the relationship between sex hormone fluctuations and depressive symptoms. This is consistent with the findings by Nasyrova et al. (2010). Overall, the role hormone imbalance plays on mood and emotion is still an area that needs further research particularly literature surrounding the implications of oestrogen dominance on emotion.

## Current theoretical framework & emotion theory

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### Experiencing disruption vs restoring continuity

Currently there is only one grounded theoretical framework that endeavors to explain how endometriosis affects the psychological health of women and is centered around the super-ordinate theme of experiencing disruption versus restoring continuity (Facchin et al., 2018). This theoretical framework postulates that perceptions of disruption to everyday life cause women to feel distressed by their endometriosis. On the other hand, women with endometriosis who are not distressed by the disease experience initial disruption to their lives but are able to adjust and learn to live with the disease, creating a sense of restored continuity (Facchin et al., 2018). Several factors are outlined as affecting whether a woman with endometriosis will experience disruption or restored continuity. These include:
| | Experiencing disruption | Restoring continuity |
| Pathway to and communication of diagnosis | Women felt that the delay in diagnosis was riddled with negative experiences with doctors, being made to feel crazy due to the normalisation of symptoms and receiving misinformed information and a lack of support upon initial communication of diagnosis (Facchin et al., 2018). | Women who weren't distressed by their endometriosis didn't experience devaluation or emotional upheaval throughout their pathway to diagnosis and felt that the communication of their diagnosis was clear, transparent and open (Facchin et al., 2018). |
| Current presence of symptoms | Women who still experienced their symptoms were more likely to be distressed (Facchin et al., 2018). | Women whose symptoms were being controlled by medical interventions felt a sense of restored continuity (Facchin et al., 2018). |
| Support | Distressed women often times felt alone in their struggle expressing stories of intimate partner breakdown and unsupportive friends, coworkers and family members, whereas non distressed women had the opposite experience (Facchin et al., 2018; Whelan, 2007; Aerts et al., 2018). | Non-distressed women felt supported by their networks which was associated with positive feelings (Facchin et al., 2018) |
| Female identity | Many of the distressed women expressed emotional upheaval in response to the impact on fertility, the way they viewed their bodies and the impact the disease has on their sexuality (Facchin et al., 2018). | Non-distressed women were able to work through these challenges and find ways to enjoy life despite the disease (Facchin et al., 2018). |
| Meaning of life with endometriosis | Distressed women reported feeling as though their entire identity has been taken over by endometriosis (Facchin et al., 2018). | Women who weren't distressed were able to find growth in the challenges of endometriosis, displayed a positive outlook on life and were able to accept the disease as part of their life (Facchin et al., 2018). |
It can therefore be seen that the the pathway to psychological distress regarding endometriosis is multifaceted and that adequate support networks and medical professional responsiveness can play a role in safeguarding women from developing psychological distress due to their endometriosis. However, it should be considered that the study relied heavily on self-report questionnaires and interviews which may cause perceptual bias in the data. Nevertheless, it is important to understand the lived experience of these women so that adequate services and supports can be derived.

### Social sharing

Social-affective sharing is the process of temporarily alleviating negative emotional distress by seeking out the support of others (Rime, 2009). It is thought to act as a form of emotional regulation and has been found to shorten the duration of emotional distress (Brans, Van Mechelen, Rime & Verduyn, 2013). This construct directly relates to the lived experience of women who fell into the "restored continuity category", as they reported feeling supported by their networks and feeling as though the disease enabled them to be more connected with the people around them, ultimately causing positive feelings (Facchin et al., 2018). This directly relates to Rime (2009) who showed that social sharing enabled the sharer and the listener to grow closer together, whilst simultaneously enabling the sharer to receive validation, understanding and help. This can be contrasted with those who fell into the "experiencing disruption" category, particularly given that some women with endometriosis are reluctant to share their experience out of fear of not being believed. From this, it can be theorised that a reluctance to engage in social-affective sharing, as well as a inadequate supportive responses from attempts at social-affective sharing may play a role in the ongoing emotional suffering of women with endometriosis (Facchin et al., 2018; Whelan, 2007).
Further, given that emotional regulation has been found to have beneficial implications for women with endometriosis and social-affective sharing harnesses aspects of emotion regulation, it could also be theorised that increasing social-affective sharing may help these women regulate the emotional impacts of endometriosis (Appleton et al., 2013; Donatti et al., 2017;Galhardo et al., 2013). However, these factors would need to be further studied in order to garner a clearer understanding of their relationship.
* Case study
* Patricia has been experiencing pelvic pain for the past week. She often has to take time off work because of the pain. Her female boss is getting annoyed with her "excuses", claiming that period pain isn't that bad. Patricia fears that her boss doesn't believe her and that she will lose her job. This makes her feel sad and anxious.

## Conclusion

In conclusion, the psycho-socio-emotional implications of chronic pain, sexual dysfunction, inflammation and hormonal imbalance have been discussed with respect to their impact on emotion and mood. Research has implicated biological factors such as altered connectivity and activation of brain structures, oestrogenic fluctuations and higher concentrations of pro-inflammatory cytokines in the development of endometriosis-related mood disorders and emotional distress. From a social perspective, theoretical constructs and research have outlined the role of experiencing disruption versus restoring continuity and social sharing in modulating the experience of emotional distress and poor psychological well-being within women who are distressed by their endometriosis. Throughout the research it has been examined that emotion regulation strategies are effective in reducing endometriosis-related stress, negative emotion and pain perception. This suggests that incorporating emotion regulation into care plans may help alleviate some of the emotional and psychological strain of the disease. All of which adds further depth to the biopsychosocial understanding of the development of mood disorders and emotional distress within women who have endometriosis. However, the interconnection between endometriosis and emotion is a topic that still requires more research to fully explore the multifaceted layers of its implications.