Mind Over Endo Pain: My Journey from Suffering to Healing by Kayla
Blog: A written blog which highlights your story and your career path into the amazing work you do today - including the why, your experience with the Mentor Program, and some tips with the link back to your website for more resources. (We can get this live after a review and a really easy turn around to get us kicked off!)
I was sixteen years' old when I first experienced the pain that would largely define my life. What was so strange about it (beyond how truly awful it was) is how quickly I normalised it and pushed it down, despite the grave impacts it was having (and would continue to have) on my physical and mental health.
This was due in large part to doctors (many with the best of intentions) that would say my pain was normal. This led me to gaslight myself even further, thinking I was just overly sensitive to pain levels that surely everyone endures with their period. (Spoiler alert: I was wrong. So very very wrong.)
However, as the illness progressed into early adulthood, it fought even harder for my attention - manifesting in debilitating, chronic fatigue (on top of the pain), which led to numerous tests (including a brain fMRI and sleep test), only to find nothing (oh, except for a depression diagnosis - which, of course I was depressed. I had ENDOMETRIOSIS and no one knew!).
I have no doubt that many of us who suffer can relate to how deeply harrowing this was - not just the pain, fatigue, and anxiety, but also the complete lack of answers.
It wasn’t until I moved to Australia from Canada that I finally met a doctor who not only validated that my pain wasn’t normal, but also mentioned the word ‘endometriosis’ to me. While she offered all of the support possible to manage it without aggressive interventions, we ultimately decided three years later that I needed to undergo the surgery.
This moment did not come easily - I had literally reached the end of my tether with the daily, agonising pain. So much so, that my desperation to get rid of it finally outweighed my immense fear of the surgery.
The Long And Winding Road To Relief
My job had also become very stressful, leading to an increase in my pain, which led to subsequent increases in my anxiety and stress. It was a truly awful, vicious cycle that so many of those with endo find themselves in. I’d even fashioned a plastic bag next to my bed so I could dry heave/vomit in the middle of the night or early morning because the pain was so intense.
Literally in a brain-fogged cloud of darkness, it was around this time that I discovered one of the most helpful tools on my journey: the QENDO mentorship program.
I was beyond terrified about the surgery (and my general lack of understanding with what it would entail), but having such a wonderfully kind and compassionate mentor to help hold my hand through such a daunting journey meant everything to me. She would become one of the most helpful people in my life during easily one of the hardest times I’ve been through. (To say that I will forever be indebted to her and that program is a massive understatement.)
However, even after navigating the rocky road to find a qualified excision specialist, I was still quite scared about the surgery. A big factor was being reminded by my incredibly kind and compassionate surgeon that even though the surgery will get rid of the endometriosis tissue, it may not in fact, get rid of the pain.
And sadly, he was very very right.
Maybe it was the unbridled hope that I had for relief, but I was certain that the surgery would act as a ‘fix-all’ to what I had been suffering. I sadly discovered, however, that my journey was far from over.
Since the pain had become chronic prior to my surgery, my brain had rewired itself in response to the excruciating pain levels - leaving the pain alarm switch on. My brain was still practicing pain, even in the absence of the endometriosis tissue. This is a very common biopsychosocial response to a body that has been through so much pain trauma (in medical terms, this is known as central sensitisation). Quite simply, my brain had changed.
Six months after my surgery, I was at my absolute lowest - and the dark thoughts that would accompany this would prove to be the most terrifying part of the whole journey to date.
I was doing all of the right things: seeing a qualified dietician to do the low-FODMAP diet; acupuncture; seeing a pelvic floor physiotherapist; talking to my QENDO mentor for support; and even trauma therapy. These all helped tremendously, but I still wasn’t putting a dent in the pain (it also didn’t help that I had nerve damage as well). The next stop for me would either be nerve blocks, another surgery, or chemical menopause.
And while I also had a dedicated, daily meditation practice, I still hadn’t discovered the importance of specific, pain-focused meditation and mindfulness techniques to finally rewire the neuroplastic catastrophe that was my pain brain.
The Light At The End Of The Tunnel
It was the unwavering support of my amazing medical team, in particular my physiotherapist and psychologist, that helped me understand pain science and the innate abilities I had within to manage my pain and stress triggers.
With this awareness, I was very slowly able to embody effective techniques that could still create safety in my body, even in the face of these threats and extreme pain. I now had the power to trick my brain and influence how it processes pain (even if it was a slow-go at first).
Through the kindness of my physiotherapist, I was able to use clinical, pain-specific meditations for free, which ended up being the lifeline I didn’t even know I needed. However, I noticed a major gap in these science-based tools for those suffering with the unique trauma of an illness that’s as debilitating as endometriosis.
This seemed like a disservice to those suffering, especially considering the unique emotional and physical trauma we’ve endured just by living with the condition. Meditation at its core is meant to be liberation from suffering - and very few people know suffering better than someone with endometriosis.
As a way to stay on top of my practice and help myself heal, I started recording my own pain-focused endometriosis meditations as a hobby, hoping to better embed the tools into my day to day. However, after posting them on Spotify and Insight Timer, I quickly discovered how desperate other people were for this type of intervention.
Creating Mind Over Endo Pain (formerly Mind the Pain) became one of my proudest achievements - helping people suffering around the world to understand the pain science in a simple way, while discovering the magic of mindfulness and meditation for managing their endometriosis pain (especially for those who don’t normally enjoy meditating).
My work as a behavioural research scientist helped me to tailor-make these meditations to ensure they were both helpful and enjoyable - ensuring they would be easy to use and integrate into daily life. Mindfulness can be a massive effort when you’re in so much pain, so I wanted to design meditations that made the practice safe, compassionate, and, even (dare I say) fun.
If you’re reading this, you have very likely experienced a similar (if not worse) journey to this point. Any scepticism you may have about the effectiveness of mindfulness and meditation for something as unrelenting as endometriosis is completely natural, and fully warranted. I was definitely the same way.
But, it’s truly remarkable how effective meditation is for chronic pain relief. Science has proven this time and time again - even for something as heinous and perverse as endometriosis pain.
If you’re at a point in your journey where you’ve tried nearly everything and you’re still not getting relief, don’t give up hope. While meditation is meant to complement (not replace) your other treatments, I have no doubt you’ll almost immediately notice the significant impacts it has on both your pain and mental health. I promise.
How Mindfulness Can Change Your Endo Pain
Not sure where to begin? That’s totally okay - as a starting point, I’ve outlined some of the key evidence-based mindfulness tools (along with some of the science) to help you easily incorporate it into your day to day.
Deep Breathing
Endometriosis pain almost always causes nervous system dysfunction - keeping us hyper alter and hyper vigilant to pain, leading to us to stay in our fight or flight response.
As mentioned, the chronic nature of the pain leads to central sensitisation, causing our body to always be alert to pain and its consequences. This creates pain anxiety and pain catastrophising, often making us feel helpless and hopeless.
The good news? We can trick the brain into thinking we’re safe and allow it to reduce its pain signals, making us feel some control with something so truly debilitating.
Deep belly breathing turns on the safety switch in the brain and body by activating our vagus nerve - the longest nerve in the body that helps regulate our breathing and heart rate (amongst many other things).
Just by breathing deeply, we trigger the vagus nerve to take us out of our sympathetic nervous system (fight or flight, and freeze) and regulate us into our parasympathetic nervous system (rest and digest). Turns out the brain and body are super impressionable, we just need to know the tools to use.
When a flare-up hits (or even if you’re comfortable), do three to five deep, intentional breaths using the Physiological Sigh Technique:
Begin by breathing deeply into the belly through your nose (inflating the belly as your breath in);
Then do an extra quick inhale through the nose;
And then let out a long sigh (ensuring the exhale is longer than the inhale).
Be sure to breathe deeply into any pain sensations and watch as the breath wraps around them, loosening the tension.
Stay with your breath and repeat at least five times.
Non-judgmental Awareness
At the heart of meditation is the act of non-judgmental awareness, which stops us from resisting and fearing the pain - allowing us to see it as neither good or bad.
This can be extremely hard to cultivate some days (especially when living with chronic, debilitating pain, like endo). However, there are methods to make it easier.
There are two ways to go about this: the first is to tune out of the sensations and witness places of safety within the body where there isn’t pain, or where there’s less pain (such as your feet, hands, top of head, etc). Breathe deeply while tuning into these parts and allow your brain to notice what safety feels like.
The other way to exercise non-judgmental awareness is to tune into the pain with kindness and without judgement or resistance (which can be extremely hard to do, so be gentle with yourself).
To do this, begin to witness the sensations (while breathing deeply) and ask yourself questions like:
Where is the sensation?
Is it moving, or still?
Is there a colour to it?
Is there a shape to it?
Is it deep, or near the surface?
Try also picturing it as a letter or animal - anything to neutralise how the brain views it.
Be curious and compassionate to yourself - it isn’t easy, but with time, you’ll feel more in control over the sensations and how you witness and react to them (even the most painful ones).
It can be helpful to note that tuning out of the pain is usually seen as the easiest way to gently tune into the body, before fully tuning into the pain.
Self-compassion & Validation
Self-compassion isn’t just ‘woo woo’ junk science, it’s research-backed and incredibly effective for pain relief.
Recognising the immense unfairness of living with this illness, on top of everything else life is throwing at you is scientifically shown to help reduce the stress and discomfort of endometriosis.
This is due in large part to the psychological impacts of the illness, including post-traumatic stress, anxiety, and depression, which can gravely impact how we’re managing the physical symptoms. Emotional health is always implicated in physical health - and in pain.
While managing the psychological impacts of the illness can be incredibly daunting at times, by exercising self-compassion, we allow ourselves to be seen, heard and validated - even if just by ourselves.
In moments of extreme pain, simply turn towards yourself, give yourself a hug and rub your arms up and down. This somatic mind/body technique helps release built-up tension and emotional stress that’s caught within the body.
Compassionate attention and validation also activate the mammalian care system, releasing neurochemicals into the body, like oxytocin and endorphins - the body’s natural pain killers. This is crucial for those with endometriosis, as these practices can drastically reduce pain perception. Even something as simple as a doctor acknowledging your pain can provide almost instant relief. And just doing it for yourself can have the same impacts.
Take it a step further by engaging in ‘crying sessions’. When we’re in pain, we can often suppress our emotions in an effort to not be a burden. You are not a burden and never were - and you deserve to have that emotional release. Make time for yourself to privately cry and grieve about what this illness has done. Witness, support and validate yourself. It’s not just healing - it’s lifesaving.
Visualisation
Perhaps one of the most powerful tools for rewiring how our brain processes pain is visualisation. Pain processing occurs through a vast network of brain areas, including parts of the brain responsible for visualisation.
Therefore, when we engage in active pain-management imagery (like a bright white light; colours; or even a peaceful scene), our brain can’t properly process the pain - thereby allowing us to modulate how it’s felt and experienced.
What’s even better about it is that visualisation creates competitive plasticity in the brain, hindering chronic pain neurons from firing together. Instead, these neurones become repurposed for visualisation, allowing them to be used for other means, instead of pain.
Over time, our chronic pain brain that developed as result of endometriosis begins to rewire back to normal. This reduces the likelihood that non-tissue triggers (like stress, a bad day, fight with a friend) will be an instigator for aggressive pain, since our brain is no longer wired for it as a default response.
A Way Forward
The above mentioned mindfulness and meditation techniques are just the beginning.
Every person with endometriosis can benefit from these types of tools, making them incredibly crucial to help us reclaim some joy, calm and peace amongst the chaos of the illness - while also rewiring how our brain interprets and processes the excruciating pain.
Even if you’ve had a successful surgery (or other interventions) and haven’t found relief, don’t lose hope. Mindfulness and meditation are almost always the last stop on the train for people who have exhausted all other bio-medical interventions. The sad thing is, it’s usually the key for most people to finally find sustainable relief.
It’s by no means an overnight change, but with time, patience, kindness and consistency, you can start living your best life now matter what endometriosis throws at you. I promise. It’s science.
Want to see how mindfulness and meditation can change your life? Check out Mind Over Endo Pain Endometriosis Meditations in the app store, on Insight Timer, or wherever you get your podcasts. You can also follow me on instagram @mind.over.endo.pain for more tools and tips; or visit www.mindoverendopain.com for additional resources.
You’ve got this, warrior.
*Disclaimer: While mindfulness and meditation can be incredibly effective tools for pain relief and overall wellbeing, they are not a substitute for medical advice. Always listen to your body, and if you notice any changes or have concerns about your symptoms, please consult your doctor or healthcare provider.
Additionally, if you suffer with psychosis or severe clinical depression, please consult your health care provider for assistance when undertaking meditation.
