Written by the Endometriosis Australia Clinical Advisory Committee
My role as a clinical psychologist and researcher has given me the opportunity to hear the stories of women living with endometriosis. It has also allowed me to hear the perspectives of others who provide care and support, such as partners, and medical and allied healthcare practitioners.
What often stands out the most, based on these stories and conversations, is that although some endometriosis-related symptoms are common, each person’s experience of these symptoms is unique. Your experience of these symptoms may be relatively new, or you may have been experiencing them for a significant length of time. You may experience one, two, or more than ten symptoms of endometriosis on a daily, weekly, or monthly cycle.
Regardless of your unique experience of endometriosis, you have probably chosen a range of management options to reduce the distress and impact on different areas of your life. Like the array of endometriosis-related symptoms that can be experienced, I often hear about the varied and unique self-management tools and techniques that women have developed to cope, both emotionally and physically, with the presence of their symptoms.
Having a mix of coping tools is important because some may be more effective than others at different times. There are a variety of psychological tools and techniques that can be useful in managing the emotional and physical distress associated with endometriosis. Some of these may not seem to ‘work’ immediately but become more useful with practice.
Using psychological tools and techniques does take effort and practice. Psychologists often compare learning these skills to learning how to ride a bicycle. If we were to give you a book that told you step by step how to ride a bicycle, you would be able to understand the theory of what you need to do – put your feet on the pedals, turn them continuously, and steer the handlebars in the direction you wish to travel. However, it would be more difficult to understand how to balance on a bicycle from simply reading. In fact, no amount of reading can teach us how to balance, this comes from engaging in the practice of bicycle riding.
Although these tools and techniques take practice, once you have mastered them, you will be able to use them when needed. You may have seen your self-management tools as things that you were doing to ‘get to’ a certain outcome (e.g., surgery, a specialist review), these unique tools and techniques will always be useful and important. View them as not having an ‘end date’ but rather as resources that will be within your control when other aspects of your treatment preferences are not.
As well as some self-management tools and techniques that you may have developed to cope emotionally and physically with your endometriosis-related symptoms, you may also be waiting for some form of medical or allied health management intervention such as a scheduled laparoscopic surgery, gynaecological review, pelvic physiotherapy or psychology consult. There are often significant wait times for these services and, understandably, the recent changes that have been implemented to manage the COVID-19 pandemic have resulted in an increase in distress for women living with endometriosis.
The postponement of laparoscopic surgery, for example, has caused significant distress for some of the women I see. For these women, the impending surgery indicated an end to a long wait time, a diagnostic confirmation, a potential pathway to pain relief etc. For their partner or support person, surgery dates provided a sense of control and a way to manage their own distress at seeing a loved one in emotional and physical pain.
An increase in distress during times of uncertainty is normal, and you are not alone in feeling like this, and your thoughts may automatically turn to, and focus on, these uncertainties. When this happens, it can lead to a focus on the aspects of a situation that are completely out of our control. The anxiety can lead to a ‘blind spot’ in relation to all the self-management tools and techniques that you have already been using to cope emotionally and physically while waiting for the surgery or appointment.
I encourage you to write down all the things that you have been doing whilst on the waitlist as well as your anxious thoughts and share them with your care team. For example, this may include talking about the difference between a ‘postponed’ surgery and a ‘cancelled’ surgery. Keep your list where it is easy to access. Share your list of coping strategies with someone close to you and ask them to gently remind you of one or two strategies when needed.
Understandably you may have some fear that your treatment gains may be lost if the ability to stay connected with your medical and allied healthcare practitioners stops. If you are concerned about accessing assistance if increased social distancing measures are put in place, consider discussing a management plan with your care team.
For example, this may include the provision of sessions via Telehealth. If you live in a household with other people, discuss how you might access some privacy while these sessions occur.
If you are required to stay home, sensory-based activities are a useful alternative to externally based coping tools and techniques. Try engaging in an activity that uses as many of your five senses as possible.
For example, sit outside in your backyard and look for five different things that you can see in your garden (sight). Pause between each object and breathe out. Notice four different things that you can hear (sound). Pause between each sound to breathe out. Notice three things that you can feel in contact with some part of your body (touch). Again, pause between each thing that you notice and release your breath. Finish the exercise by asking yourself “what is one small thing I can do today to take care of myself?”. There is no right or wrong to this answer. It might be to make a cup of tea, telephone a friend for a chat or to talk kindly to yourself.
There is an increase in uncertainty with the ongoing changes being introduced to manage the COVID-19 epidemic and yes, these changes are having a direct impact on some of the medical and allied health care management of endometriosis. Don’t underestimate your resilience and skills to adapt to change that you have already developed in living with endometriosis. You could probably share a thing or two about adjusting to change with those around you! No doubt you have faced and overcome many obstacles on your endo journey so far – COVID-19 is another obstacle in your current journey but you are not alone, and your care team will be endeavouring to assist you.
You might also find some additional coping resources online via:
Reach Out – https://au.reachout.com
Head Space – https://headspace.org.au
The Free Mindfulness Project – http://www.freemindfulness.org
Dr Leesa Van Niekerk, PhD (Clin.Psych), MAPS FCC