Endometriosis and IMPROVED quality of life, it is possible.

I was diagnosed with endometriosis over 15 years ago. In consensus with my doctor, we never performed the surgical procedure to confirm my diagnosis. I was provided with medication to take during my most difficult pain phase (menstruation). Looking back, I remember when I was experiencing my endo at its worst (for me my symptoms gradually got better due to many adjustments I made to my life) my life would literally have to go on ‘hold’ for - give or take 10 days. My boyfriend at the time would often find me curled up in the fetal position on the bed. He would beg to take me to the hospital or ask what he could do at the very least. The saddest part about it was my response, ‘there is nothing you can do and there is nothing I can do. I just have to wait it out’.

Looking back at my experience, I wish so badly that I could have used my knowledge that I now have as an occupational therapist to help the ‘younger Janelle’ who was curled up on that bed, who was mentally going through the thoughts of ‘how long do I have till the pain decreases’, how long till I can get back to my ‘normal’ – a normal that was not so normal. I also suffered the pain of knowing that I may be infertile. I was encouraged to stay hopeful and that if it ever came down to it I would ‘be able to get pregnant with all the technology we have today’. Though this statement brought me some comfort, my type A personality started to create the list of how I will have my own child one day. At a very young age I decided that I would have a family no matter the situation and I came to terms with the possibility of adoption. My mind and body has learnt to tolerate pain in amazing ways; I did not realize the full extent of this until I was diagnosed with chronic pain due to a hip issue that required surgery (on both hips). My normal has never really been so ’normal’. My body needed care in ways that I did not know how to care for it when I was younger. I spent years just ‘being’ with my symptoms, tolerating my pain, tolerating my life. Oh how I wish I had the knowledge that I do now for ‘younger Janelle’….

Endometriosis affects 1 in 10 women. It is a condition that causes pain and discomfort of the urogenital system. Endometriosis is an abnormal growth of the uterine lining (endometrium) outside of the uterine cavity, where adhesions to the surrounding pelvic and reproductive anatomy occurs. Chronic pain can be a result to this atypical growth of cells, which can be escalated during menstruation. This can impact sexual activity, retention or elimination of urine and/or stool and may result in decreased fertility. The greatest barrier for effective treatment is proper diagnosis (Agarwal et al., 2019). In order to identify the presences of endometrial adhesions a laparoscopic surgery is required (ACOG, 2019; Agarwal et al., 2019). It has been identified that many women suffer for 4 to 11 years before diagnosis and actionable measures can be taken against this condition, furthermore it is estimated that 6 of 10 endometriosis cases are undiagnosed (Agarwal et al., 2019). Women may experience mistrust and disappointment in the medical community due to this.

Aerts et al. stated that “as a condition that is often misdiagnosed, mismanaged, trivialized, or ignored, endometriosis entails a great personal cost to patients and their partners, and a significant financial cost to society…” (2018, p. 2).

The pain that women experience from this condition significantly impact a woman’s ability to engage in day to day activities, impact relationships and decrease quality of life (QOL). Depression, anxiety and feelings of isolation are strongly associated with the experience of living with endometriosis. Shame, low self-esteem, body image concerns and inadequacy are all associated with this condition (Aerts et al., 2018). Other health related quality of life symptoms include emotional distress, lack of energy, feelings of worthlessness, worry, frustration, anger and hopelessness, which all impact mental, physical and social well-being (Chauvet et al., 2018; Culley et al., 2017).

The well-being of the female is not the only concern; research shows that a woman’s diagnosis impacts the intimate partnership as well (Culley et al., 2018). Endometriosis has an impact on a marriage or intimate partnership with respect to sex and intimacy, planning and having children, household income as well as working life (Culley et al., 2018). A biopsychosocial approach with a couples centered focus to include partners and relationship concerns is recommended (Culley et al., 2017).

Medical/surgical intervention, pain therapy and psychological therapy are available for an endometriosis sufferer. Although, it is identified that a multidisciplinary team of gynecologists, sexologists, psychotherapists, physiotherapists and occupational therapists is important to address and individualize the client’s needs (Aerts et al., 2018). Frequent meetings with a component of education for pain self-management yield better patient outcomes (Haskins, Maatz, & Zimmerman, 2015).

A team of healthcare providers can be beneficial for treating symptoms of endometriosis or chronic pelvic pain. Skilled therapists that are able to deliver client centered care from a biopsychosocial framework can be beneficial to help increase quality of life and re-engage women in meaningful activities to regain occupational balance. Occupational therapy can assist in adaptation of daily routines, facilitate engagement in meaningful activities, promote a healthy lifestyle, and manual therapy. As holistic professionals with a unique educational foundation in neurology, sociology, anatomy, biomechanics and psychological implications, occupational therapists have the ability to determine client-centered needs, integrate perceptions of the individual’s experiences and advocate for optimal patient outcomes using a range of intervention strategies (Trueng, 2019).

Robinson, Kennedy, and Harmon (2011) generated a more comprehensive list of interventions that occupational therapists can apply to addressing chronic pain such as:

• pacing

• activities of daily living (ADLs)

• goal setting

• grading activity

• ergonomics

• energy conservation

• fatigue management

• exercise

• self-management of flare-ups

• distraction

• vocational rehabilitation

• equipment provision

• body mechanics and postural education

• bio-feedback

• passive joint mobilization

• heat modalities

• electrical stimulation

• splints

• soft-tissue management

• sleep hygiene

• assertiveness training

• stress management

• creative modalities

• therapeutic recreation

• managing sexuality

• facilitation of a peer-support network

• alternative or complementary therapies

• relaxation

• psychologically based management strategies, including cognitive–behavioral therapy (CBT), behavioral approaches, psychotherapeutic approaches, and ego- strengthening psychotherapeutic approaches

Examples of specific areas that can be focused on include mental health, enabling participation, optimization of the environment, sleep, pain management, habit formation, goal setting and structuring time and tasks to manage symptoms.

Mental health is a large component that an occupational therapist can help address by developing mental health strategies such as mindfulness, meditation, Cognitive Behavioral Therapy, as well as incorporating activities that you already love back into your daily activities.

Occupational therapists have the ability to find ways to enable the things you want or need to do (i.e. change in postures, environment set up, and adding equipment for days when a flare-up occurs).

Occupational therapists help identify features that are contributing to physical and mental health and what elements are likely making symptoms worse (for example, lighting, furniture changes, increasing positive socialization or deleted social media).

Occupational therapists can help increase quality of sleep through assessment of sleep habits.

The role for pain management can include education around how pain works, skills in pain management (i.e. graded motor imagery, safe return to occupations using ergonomics/body mechanics, biofeedback and sensory modulation to help regulate alertness).

During habit formation, an occupational therapist may build in new helpful habits in a sustainable way. For example, habit stacking is where you build on existing habits to support formation of new habits.

Goal setting is an important part of occupational therapy, where the client becomes connected with their values and what they love to do to create meaningful goals.

Pacing, prioritizing and analyzing task demands are a skill that occupational therapist are talented in. Women who like to ‘push through the pain’ often increase their symptoms due to the lack of listening to the body. Occupational therapists help pace (break up tasks), simplify tasks and realistically incorporate tasks into their client’s day.

A woman’s lived experience is significantly impacted by endometriosis, while the medical model has made advances for identification and interventions, many women feel frustrated or unsatisfied with their experiences of care. Occupational therapy focuses on the lived experience of the woman in her day to day functioning, rather than intervention directly related to the biological process of uterine growth. Coping strategies, adaptation to daily activities and facilitation of occupations that are meaningful and purposeful to the client demonstrate that occupational therapy can play a role in improving the quality of life and well-being of a female with endometriosis.

Please reach out to a healthcare provider if you are experiencing painful heavy periods or any of the following signs and symptoms:

• Severe, debilitating abdominal cramps

• Pelvic pain, usually worse during a period

• Long periods

• Heavy menstrual flow

• Nausea and/or vomiting

• Pain/cramping during or after sexual intercourse

• Bowel and urinary disorders

• Painful bowel movements or urination during menstruation

• Infertility

• Chronic fatigue

I wish I could have told ‘younger Janelle’ that there are ways! There is help! You do not have to suffer in silence! But I cannot, I cannot help ‘younger Janelle’ so instead, I will help YOU.

Janelle Daku MSc.O.T.R. Reg. Sk,

Women’s Health, Family Health, & Pediatric Occupational Therapist

Reference

Aerts, L., Grangier, L., Streuli, I., Dällenbach, P., Marci, R., Wenger, J.-M., & Pluchino, N. (2018). 1: Psychosocial impact of endometriosis: From co-morbidity to intervention. Best Practice & Research Clinical Obstetrics & Gynaecology, 50, 2–10.

Agarwal, S. K., Chapron, C., Giudice, L. C., Laufer, M. R., Leyland, N., Missmer, S. A., … Taylor, H. S. (2019). Call to Action: Clinical diagnosis of endometriosis: a call to action. American Journal of Obstetrics and Gynecology.

American College of Obstetricians and Gynecologists. (2019). Endometriosis. Retrieved from https://www.acog.org/womens-health/faqs/endometriosis?utm_source=redirect&utm_medium=web&utm_campaign=otn

Chauvet, P., Guiguet-Auclair, C., Comptour, A., Denouël, A., Gerbaud, L., Canis, M., & Bourdel, N. (2018). Original Article: Feelings and expectations in endometriosis: Analysis of open comments from a cohort of endometriosis patients. Journal of Gynecology Obstetrics and Human Reproduction, 47, 281–287.

Culley, L., Law, C., Hudson, N., Mitchell, H., Denny, E., & Raine-Fenning, N. (2017). A qualitative study of the impact of endometriosis on male partners. Human Reproduction,32(8), 1667–1673.

Haskins, A. M., Maatz, K. L., & Zimmerman, J. Q. (2015). Purposeful and Occupation-Based Interventions for Chronic Musculoskeletal Pain: A Systematic Review...AOTA/NBCOT National Student Conclave, Dearborn, Michigan, November 18-19, 2016. American Journal of Occupational Therapy, 69, 1059–1062.

Robinson, K., Kennedy, N., & Harmon, D. (2011). The issue is... Is occupational therapy adequately meeting the needs of people with chronic pain? American Journal of Occupational Therapy, 65(1), 106–113.