Faith, Pain, and Healing

A Journey with Stage Four Endometriosis through the Lens of Practical Theology

Introduction

My spirituality and religious beliefs played a major role in my coping with endometriosis and helped me navigate this complex health condition. My journey with endometriosis using Osmer’s four core tasks of practical theology reflects on the role of spirituality, faith communities and healthcare professionals in Nigeria, the limitations of the healthcare system and the benefit of increased awareness and advocacy for endometriosis.

Endometriosis happens when endometrial tissue is present outside the uterus, resulting in symptoms (Usmani, 2022) of pain chronic pain such as dysmenorrhea or painful menstruation, dyspareunia or pain during sexual intercourse, chronic pelvic pain (Soo et al., 2023). The pathology behind the pain experienced in endometriosis is quite complex, involving changes in inflammatory reactions; increased production of cytokines, angiogenic factors and neurotrophic substances; nerve fibre redistributions; sensitisation within the peripheral and central nervous system(Soo et al., 2023).

Endometriosis is classified into four stages, depending on the endometrial tissue’s location, depth, and size (Hopkins, 2020). Stage one or two are cases of minimal or mild cases which appear superficial, i.e.., the disease did not embed into the affected organs, while stage three or four are cases of moderate or severe cases of the disease, i.e., the disease embedded deep into the affected organs such as ovaries forming cysts or ‘endometrioma also known as chocolate cysts (Labinjo, 2020).

Living with chronic pain due to endometriosis can lower the quality of patients’ lives and well-being because it affects the physical, emotional and social well-being of the individual (Coxon et al., 2023). The economic burden is enormous due to missed work, reduced productivity and the high cost of treatment (Pickett et al., 2023; Della Corte et al., 2020; Missmer et al., 2021).

There is currently no cure for endometriosis (Fallon et al., 2024), but treatments such as hormonal therapies, pain management and surgical interventions (laparoscopy to remove the endometrial tissue). In severe cases, hysterectomy (removal of the uterus) may be considered, but this option is not guaranteed to be a permanent solution (Kalaitzopoulos et al., 2021; Brown & Farquhar, 2015). Therefore, in recent years, there has been a request to create better medical interventions focused on non-hormonal drugs to address the root cause of the disease.

To improve outcomes, there is a need for earlier diagnosis, referral to specialised centres, and a comprehensive, multi-modal management plan involving multidisciplinary teams (Westwood et al., 2023; Pickett et al., 2023; Kalaitzopoulos et al., 2021). For example, had I been aware earlier of my condition, specifically the presence of endometriosis during my youth, several crucial actions would have been taken. Primarily, I would have commenced treatment at an earlier stage. Additionally, I would have considered the option of preserving my fertility through egg freezing, a choice that was not apparent to me at the time.

Endometriosis is a painful condition that lasts throughout a woman’s lifetime and affects millions of women across the world. With a scope similar to diabetes and hypertension, endometriosis impacts roughly 10% of all reproductive-age women, which globally means an estimated 176 million (Soo et al., 2023). The global state of endometriosis is characterised by increased awareness and more research. However, there are constant challenges in diagnosis, treatment and support (Tsamantioti, 2023; Hudson, 2021). One of the main challenges affecting endometriosis worldwide is delay in diagnosis, which takes an average of seven to ten years (Westwood et al., 2023).

Sometimes, this delay is due to a lack of awareness among healthcare professionals (Evidation, 2023) and the concept of normalising menstrual pain, which usually masks the severity of the symptoms (Ní Chéileachair et al., 2022; Sims et al., 2021). For example,  I visited a clinic and was disregarded despite providing detailed information about my condition. Endometriosis is also usually misdiagnosed as other conditions, such as irritable bowel syndrome (IBS) or Pelvic inflammatory disease (PID) (Evidation, 2023).

Irrespective of the widespread prevalence, the condition remains underdiagnosed and misunderstood, usually resulting in delays in treatment and accessing adequate care (Parasar et al., 2017; Balogh et al., 2015). For example, upon explaining my endometriosis to the healthcare professionals, they often seem sceptical and lean towards a different diagnosis, such as appendicitis, based on the location of my pain. However, there is increased awareness of endometriosis globally, such as patient advocacy groups and social media campaigns. Organisations such as Endometriosis UK, World Endometriosis Foundation and Endometriosis Foundation of America have significantly impacted attention to endometriosis.

The Nigerian context

Women in low and middle-income countries such as Nigeria experience longer delays and barriers to care due to cultural stigma and limited healthcare resources (Nyblade et al., 2019; Kane et al., 2019). According to a study conducted by Labinjo (2020) about the prevalence of endometriosis among African indigenous women found that the prevalence was high among women aged 31-40 years with symptoms of primary infertility and dysmenorrhea (pain during menstruation). However, the prevalence is still low in many African countries due to low socioeconomic status, low level of education and poor diagnostic tools in the hospitals.

In addition, a significant amount of women with primary infertility were found to have moderate or severe endometriosis (Aimakhu & Osunkoya, 1970; Fawole et al., 2015; Ajayi et al., 2016; Ekwempu & Harrison, 1979; Mboudou et al., 2007). Reproductive health issues are hardly spoken about and are silent in many cultures in Nigeria. This has led to delayed care and reinforces the silence around menstruation and reproductive health, which results in misdiagnosis, delayed treatment and psychological distress (Uzoechi et al., 2023; Igberase, 2012; Olson,2022). The feeling of being imperfect added to the already existing emotional burden accompanying this diagnosis (Kane et al., 2019).

Richard Osmer’s four core tasks

Descriptive-empirical task- Understanding stage four endometriosis

 Osmer’s descriptive-empirical task asks, ‘ What is going on? (Osmer, 2011; Van der Westhuizen, 2018). This task involves recognising and understanding the experience of living with endometriosis. It also shows the intersection of health, spirituality and social context where faith and religion serve as coping mechanisms. Stage four endometriosis is the most severe form, which results in extensive scarring, chronic pain and challenges with infertility. Living with endometriosis in Nigeria means having to navigate the challenges of physical pain, social isolation, low self-esteem and feelings of inadequacy (Mecha et al., 2022; Bergen et al., 2023) due to cultural stereotypes and stigma around women’s reproductive health, even from their families, resulting in emotional distress (Uzoechi et al., 2023; Sims et al., 2021).

Most women lack the appropriate way to communicate their health concerns to their healthcare professionals. This is primarily because they have no idea of what is going on in their bodies and the normalisation of menstrual pain in these societies (Wiggleton-Little, 2024). Also, when they visit their health professionals, they face scepticism and sometimes experience misdiagnosis.

For example, in my case, upon explaining my symptoms to the healthcare professionals, they appeared sceptical. Occasionally, certain physicians and even some general practitioners displayed disbelief, particularly when the pain was involved, presuming that I sought medication for personal comfort rather than genuine medical assistance. This task demonstrates the need for more awareness and understanding of female reproductive chronic conditions such as endometriosis with healthcare systems and the society in Nigeria (Bergen et al., 2023).

Interpretive task:  Analysing cultural and spiritual contexts

This task examines the deeper meaning behind the experiences (Osmer, 2011). In Nigeria, faith and spirituality are deeply ingrained in our daily life. For many women, including myself, religion serves as a source of support and encouragement, especially when there is little or no access to psychological or emotional support (Labinjo et al., 2020; Koenig, 2012). The cultural context in Nigeria usually describes illness as a spiritual problem, making people seek healing through prayers, churches and even sometimes traditional spiritual healers (Mokgobi, 2014).

According to Nigerian culture, which accepts modern medicine and traditional aspects, a dual approach is taken when addressing health matters. Thus, combining biomedical approaches and spirituality may constitute comprehensive health care. For example, in addition to seeking medical treatment, prayer was an effective way to cope with the challenges of the disease, which helped provide comfort and a sense of connection with God, especially during moments of distress. Also, my church community provided a support network through prayers with other members, which was quite encouraging.

Even though faith provides emotional and psychological support, it can sometimes complicate medical treatment practices. Leavey and King (2007) confirm that despite traditional and spiritual healers giving care to individuals experiencing emotional distress, there may exist a hesitance in transitioning from offering spiritual guidance to advocating hospital visits (Labinjo et al., 2020). In my experience, I was conflicted between choosing medical treatment (surgical intervention) and seeking spiritual healing.

Religious leaders, even though primarily well-intentioned, interpret illness as a result of evil forces or divine punishment, which can cause significant delays in seeking medical care (Labinjo et al., 2020; Subu et al., 2022; Koenig, 2012). For example, while seeking healing for endometriosis-related pain and anxiety before surgery, I transitioned between different churches. I was consistently informed that evil forces had afflicted me with the illness.

My family and I journeyed from one spiritual leader to another, offering financial contributions in hopes of ridding me of the purported evil entities. Unfortunately, my condition did not improve, and I ultimately proceeded with the surgical procedure. Nevertheless, this ordeal did not waver my faith in God as the ultimate source of healing and protection as I have experienced his mercies on several encounters from childhood. This interpretive task shows how cultural beliefs can define women’s experience with chronic illnesses such as endometriosis. It recognises the need for a more integrated approach that recognises both spiritual and medical perspectives.

Normative task: The role of faith in healing and advocacy

This task asks the question, ‘What ought to be happening? (Osmer, 2011). This involves examining theological and ethical principles guiding faith communities and healthcare systems about suffering, healing and care. Faith is a powerful resource for resilience and hope for women with endometriosis, especially those from deep faith-based backgrounds (Lubián-López et al., 2021). However, spiritual guidance must support instead of replace medical interventions (Sharma et al., 2020).

Faith communities should provide spiritual and practical support and encourage women to seek medical care or treatments. Churches, as places of refuge and support, must play a crucial role in raising awareness about endometriosis, breaking the cultural silence and stigma while advocating for better healthcare and having open conversations about women’s reproductive health. Also, healthcare professionals must respect patients’ spiritual beliefs and educate them about their medical opinions, thereby creating a relationship of trust (Abdulla et al., 2019; Kennedy et al., 2017). Finally, all individuals, regardless of gender or ethnicity, should receive equitable and considerate care and healthcare professionals should not trivialise these women’s pain (Westwood et al., 2023; Bougie et al., 2022).

Pragmatic task: toward an integrated healthcare approach

This task involves creating strategies for action with the question, ‘How might we respond? (Osmer, 2011). A holistic approach is recommended that integrates spirituality and medical care in the treatment of chronic illnesses such as endometriosis (Molina et al., 2024). Faith communities can provide emotional and spiritual support, while medical professionals provide evidence-based therapies or interventions (Cetera et al., 2024).

For example, collaboration between spiritual leaders, traditional leaders and medical professionals can encourage receipt of extensive care that addresses physical and emotional needs. There is also a need for greater awareness, education, and advocacy regarding endometriosis in Nigeria. Medical professionals must be trained to identify the symptoms of endometriosis and respond with compassion and expertise while encouraging women to be open about their reproductive health concerns. Faith communities can significantly advocate by hosting educational workshops and encouraging open and honest dialogue about women’s reproductive health.

Conclusion

My journey with stage four endometriosis has been a challenging but spiritually transformative experience. Reflecting on my personal experience through Osmer’s four core practical theology tasks, I have identified the crucial role that spirituality, faith communities and healthcare systems must play in supporting women with chronic illnesses such as endometriosis. There is a need for a balanced, integrated approach to spiritual beliefs and medical care, including increased advocacy and support around endometriosis. By these recommendations, cultural silence around women’s reproductive health can be broken and ensure women with chronic illnesses such as endometriosis receive better care and support.

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© Temitope Labinjo, 2024.

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Cover Image: Provided by the author.