How I Recovered from a Decade of Chronic Bladder Pain
- Sarah
- 1 day ago
- 7 min read
We are delighted to bring you a chronic pain recovery story this month - and this one comes from the heart of one of our directors, Sarah, who lived with severe and debilitating Interstitial Cystitis for a decade before discovering neuroscience-based approaches to healing.
How it all began
I became chronically ill in my early twenties, on the cusp of adult life. I had recently graduated from university, landed an exciting graduate job, and was looking forward to travel, friendships, and building my life. Then everything changed.
It started with a simple (but exceptionally painful) urinary tract infection (UTI). Although it was treated with antibiotics, the debilitating symptoms kept returning. Eventually, my tests were coming back clear, yet the severe pelvic pain, urinary frequency and urgency persisted. There was no longer an infection to explain what I was experiencing.
After numerous appointments with my GP, I was referred to a urologist and underwent a cystoscopy. The diagnosis was Interstitial Cystitis (IC), a poorly understood bladder-pain condition with no known cure.
Like many people, I immediately turned to Google for answers. What I found was deeply upsetting. While treatments were available, they did not help everyone, and many sources described IC as a chronic, potentially lifelong condition of debilitating pain and other distressing symptoms.
The condition quickly affected every aspect of my life. Sleeping, working, exercising, socialising, and enjoying everyday activities became increasingly difficult, and my life began to shrink dramatically as I dodged everything that might worsen symptoms - even the very things that used to bring me joy.
The impact on my mental health was profound. I would go to bed in pain and tears, only to wake up the same way—my first thoughts immediately turning to my bladder and how severe the pain might be that day.
Living with constant pain was exhausting and deeply distressing. At its worst, the pain was so intense that it left me bedbound; I would describe the severity then as 20/10. But beyond the intense physical suffering, it was the fear that was often hardest to bear. I worried constantly about what the future might hold. Had chronic illness permanently changed the course of my life? Were the goals, dreams, and plans I once took for granted now out of reach?
Searching for answers and relief
Over the next decade, I exhausted every treatment option available within the conventional medical model. I tried countless medications, many of which came with unpleasant side effects. I underwent procedures that briefly raised my hopes, only to leave me disappointed. Eventually, I even underwent surgery.
After ten years of unrelenting pain, I was offered a spinal cord stimulator. It felt like a final attempt at finding relief, but sadly it did not provide lasting benefit and was eventually removed.
Alongside conventional treatments, I explored a wide range of complementary therapies—from reflexology to herbal medicine, acupuncture to homeopathy, and much more. I also strictly followed the 'IC diet', which ultimately did little to reduce symptoms but did serve to steal further joy from life and generate fear of eating or drinking.
Each new approach brought a glimmer of hope and some even led to some improvement in symptoms, but none provided the long-term relief from chronic symptoms that I was desperately searching for.
A shift of focus: from local to system level
During this decade, my focus had been firmly fixed on my bladder—the place where the pain seemed to originate and stubbornly persist. It felt like the obvious source of the problem: the tissue that was inflamed and seemed irreparably damaged, in need of ‘fixing’.
But around this time, something interesting happened. I began "collecting" other chronic pains (possibly the least enjoyable hobby imaginable!). Debilitating pain appeared in the scars from my surgery, in my pelvis, and in my lower back. The more symptoms I accumulated, the more I began to wonder whether there was something bigger going on.
Eventually, I found myself asking a different question: why does my nervous system seem to hold on to pain?
Searching more broadly for answers about chronic pain and the nervous system led me to the work of Dr John Sarno, and later to Dr Howard Schubiner and Georgie Oldfield in the UK. Their work introduced me to a completely different understanding of chronic pain—one that would ultimately transform my recovery journey.
A profound paradigm shift
A deep dive into pain science transformed my understanding of what pain actually is. I learned that all pain is generated by the brain as a response to perceived danger. In acute situations, this danger is often physical—an injury, illness, or infection. In my case, it was a urinary tract infection. Here, pain serves an important protective purpose, encouraging us to seek treatment and avoid further harm.
However, I discovered that chronic pain is often different. Rather than being driven by ongoing tissue damage, it can be neuroplastic—rooted in changes and dysregulation within the nervous system, maintained by learned neural pathways in the brain. In these cases, pain persists because the brain continues to perceive danger, even when the original threat has passed.
This persistent sense of danger can be fuelled by many sources: fear of ongoing tissue damage following injury, infection or illness, chronic stress, unresolved emotions, adverse life experiences, or personality traits that create internal pressure, such as perfectionism, people-pleasing, high levels of conscientiousness, and a tendency to worry excessively.
As I explored the science, many pieces of my own story began to make sense. Yet some doubt remained. My cystoscopies had clearly shown inflammation and visible changes within my bladder. I had seen the images myself– along with the biopsy results. I had been told by specialists that my condition would likely be lifelong—something I would simply have to learn to live with. One consultant even advised me to stop "chasing the ghost" of good health.
But my research eventually led me to the field of psychoneuroimmunology, which explores the close relationship between the nervous system and the immune system. I learned that inflammation can be influenced by the body's stress responses and that nervous system dysregulation can play a role in maintaining physical symptoms. This opened the door to a possibility I had never previously considered: that addressing the nervous system might help create meaningful changes in my physical health.
Treating my pain – the neuroplastic way
Understanding the origins of my pain was the first step towards reducing it. Learning that my symptoms were rooted in learnt neural pathways was profoundly reassuring. Equally empowering was discovering that, thanks to neuroplasticity, those neural pathways could be rewired. This understanding helped to interrupt the fear-pain cycle that so often fuels neuroplastic symptoms.
But learning about the neuroscience was only the beginning. To recover, I had to put that science into practice. For me, that involved:
Brain retraining – recognising and interrupting fear-based thoughts and behaviours, and gently and consistently redirecting my attention towards messages of safety and reassurance grounded in the neuroscience.
Nervous system regulation – using practices such as meditation, breathwork, somatic exercises, and other mind-body techniques to foster a felt sense of safety.
Emotional processing – creating space for difficult emotions to be safely acknowledged, expressed, and processed rather than suppressed.
Living more mindfully – gradually letting go of the pressure, perfectionism, self-criticism and constant urgency that had characterised much of my life, and cultivating greater self-compassion, ease, and joy.
Re-engaging with life – slowly returning to the activities, places, and experiences I had been avoiding out for fear of triggering pain; helping my brain learn that these were safe again.
Recovery wasn't about finding a single miracle cure. It was about creating safety at every level—within my thoughts, emotions, body, and daily life—so that my nervous system could finally let go of the need to protect me with pain.
A long and non-linear journey
Implementing the science within my life took time (years, to be honest) and the journey was not linear. Far from it: there were many set-backs and roadblocks along with the way. But with time, consistency, patience and oodles of self-compassion, I got there in the end.
What life looks like today
Today, I am living a rich, fulfilling and active life. I rock climb, lift heavy weights, ski down mountains, travel, and enjoy an active social life. I co-run Living Proof, a not-for-profit organisation with a friend and fellow recoveree, helping to raise awareness of recovery from chronic pain and symptoms using neuroscience-based approaches – a mission close to my heart.
Most importantly, I can enjoy all the ordinary, everyday moments that once felt impossible—spending quality time with my precious family, making memories, and fully participating in life again.
Key take-aways from my journey
Looking back, recovery taught me far more than how to reduce pain. It changed the way I relate to myself, my body and my life. While every healing journey is unique, these are some of the most important lessons I learned along the way:
Healing comes from within. Learn from trusted experts, but remember that you are the expert on your own experience. The key is discovering what helps your nervous system feel safer—both around your symptoms and in your life as a whole.
Understanding the science is not the same as living it. Learning about neuroplasticity can be empowering, but neuroplastic recovery comes from consistently applying that knowledge through new thoughts, behaviours, and experiences that signal safety to the brain.
Self-compassion is a healing superpower. It is difficult for a nervous system to feel safe when it is constantly being driven by self-criticism, pressure, or perfectionism. Treating yourself with care and kindness is not a luxury—it is part of the healing process.
Getting back to life is just as important as doing the "work" of recovery. It’s natural to make healing your full-time job. But remember that joy, connection, play, purpose, and meaningful activities all send powerful messages of safety to the brain. Sometimes the most therapeutic thing you can do is simply live your life – and lean into everything that brings you happiness, comfort and ease.
Recovery is about much more than symptom reduction. For many people, healing becomes a journey of self-discovery, growth, and transformation. Looking back, I wouldn't want to return to the way I lived before. Whilst I am not grateful for the suffering I endured, I deeply appreciate everything the journey taught me about living with greater ease, authenticity, self-compassion, and joy.
If sharing my story helps even one person feel a little more hopeful, curious, or empowered about their own recovery, then it has been worth telling. Recovery from neuroplastic pain and symptoms is possible, and sometimes the path forward looks very different from what we first expect.
