Sanjay’s story of overcoming pudendal neuralgia

Sanjay on his bike has overcome pudendal neuralgia

A story of overcoming pain and pursuing a purpose

Sanjay came to see me about a persisting and most troubling painful problem that is common in cyclists, pudendal neuralgia. We worked together towards his picture of success, following the principles of the Pain Coach Programme. As ever, the focus was to understand pain and move onto live a fulfilling life.

The old tale ‘good, bad, who knows?’ illustrates the continuity of life, or impermanence, as we live life’s ups and downs. This is such a narrative here as you read about the joy of cycling, the suffering caused by the pain and the consequential limitations, the freedom of overcoming pain, the birth of an idea and the use of strengths to create something new, with purpose.

Here is Sanjay’s story in his own words.

Cycling passion

Most keen cyclists have experienced the addictive nature of being on a bike, the sense of freedom, speed and the happy effects of serotonin. I always loved riding my metallic blue Raleigh Grifter as a kid and unfortunately didn’t have an opportunity to upgrade to a bigger bike once I out grew the Grifter.

Many years later I rediscovered cycling again when my arm was twisted by colleagues at work to take part in the London to Brighton charity ride. I loved the experience and fell back in love with cycling again. My time on the bike increased and the challenges got harder.

It took a few years to build up the confidence to join a cycling club, but when I did I never looked back. I met an amazing group of new friends and inspirational people.

Saddle sore

I would generally ride a few sportives every year and managed to get a saddle sore after a sportive a few years ago. I’m not very good at staying off the bike and didn’t help the healing process by getting back on the bike before it healed properly. This led to a persistent saddle sore. After various antibiotics creams and tablets the sore still persisted. I had based most of my free time and social life around the bike so found it challenging mentally when I wasn’t able to ride.

One day at work I suddenly developed a pain around my sit bones that extended down my leg, it felt like a strange pain, almost electric and was worse when I was sat down. As if the saddle sore wasn’t enough I now had another issue to deal with.

Search for treatment

Over a period of a couple of months, I saw 5 different doctors and 4 different physios and still didn’t have any improvement or diagnosis. At times, it felt like the pain was getting worse and I was spending a lot of time on my feet to avoid sitting. Depression was starting to sink in as a result of the pain and inability to do the normal things that I enjoyed doing.

I decided to get an MRI scan done and this showed inflammation at the point of pain near the sit bone. This provided some hope so I then started treatment with a physio to treat this condition and after a couple of months the pain just got worse. Next stop was a pro-cycling team physio and doctor who both worked together to finally give me a diagnosis. It wasn’t the news I wanted to hear, a trapped pudendal nerve. Also known as Pudendal Nerve Entrapment (PNE).

I turned to Google for advice and struggled to find any good news about recovery from the condition. The doctor suggested cortisoid  injections or a powerful antidepressant with the side affect of numbing the nerves. Knowing that these options were just masking the root cause I started working with a clinic that specialised in nerve injuries including the pudendal nerve. They had knowledge of the injury and I did have some progress however after months and months of treatment, I had only around 10% improvement and still couldn’t sit without pain.

Richmond

I was very low during this time and began searching for answers again. I came across Richmond Stace’s pain physio website and something seemed different about Richmond’s treatment. I quickly booked an appointment. I walked into Richmond’s office very depressed and without hope and walked out with the belief that I could recover. Richmond had a different approach to anyone else that I had seen. He helped me understand the cause of the pain and that knowledge led to empowerment and therefore belief that I could overcome the pain. Richmond provided tools including visualisation techniques, motor pattern training and mindfulness practices.

Richmond provided a programme of treatment and adapted and progressed the plan based on my progress. I started sitting again very quickly after treatment and running again after only a few weeks. I was back on the saddle for short periods after a few more weeks and back on the road riding again after a couple of months. It felt amazing to ride again after 8 months off the bike and gradually over time the pain completely disappeared.

Pursu

During the time I was having treatment with Richmond, my contract finished so I was no longer working. Richmond mentioned a book called ‘Screw Work Break Free’ by John Williams. I quickly bought and read the book and felt inspired to pursue something more meaningful. A few years earlier I had dreamt of creating my own natural and eco-friendly cycling nutrition brand and this felt like the perfect opportunity to start making the dream come to life.

Pursu nutrition bars cycling

As I was spending more time on my bike over the years I realised that most of the sports nutrition options on the market were highly processed, high in sugars and gave me stomach issues. I started making my own bars with real food ingredients and they tasted so much better plus my stomach was much happier.

The path to taking the products from my kitchen to a manufacturer was not an easy or quick one, there were many obstacles and the ability to adapt was key. I stuck to my values throughout the process and that included only using the best quality real food ingredients, sustainability and creating an inclusive brand that inspires people to ride and get involved in sports whilst eating well.

Pursu will be launching in March 2019 and the name has been inspired by the Pursuit cycling events and represents the Pursuit of better nutrition, the Pursuit of goals and ambitions. The launch bar packaging will be 100% home compostable and is made out of bio-based materials. In addition we have partnered with a great charity called Recycle (re-cycle.org) who supply unused bikes from the UK Africa to help improve lives through the power of bicycles.

It seems like a long time ago that I wasn’t able to see a way out of the constant pain. Not only did I recover completely, an opportunity to pursue a dream also came my way. Before I met Richmond, there was little hope for recovery from PNE. I know there are other cyclists with the same or similar conditions and I hope my story provides hope to them.

You can keep updated with progress and competitions on Instagram @pursunutrition and sign up for a launch discount at pursu.co.uk.

 

 

Pete and I

Sharing a purpose

Pete and I share a passion and a purpose. We discovered our shared purpose over a number of conversations at dinners and conferences. More recently Pete and I recorded our chats, ‘pain talking’ (see here, here and here) to share our thoughts. There will be more to come, much Moore!

Our purpose: to change the way people and society thinks about pain. Why? Read on…

Pete Moore and Richmond Stace Pain Toolkit and The Pain Coach
Richmond Stace (The Pain Coach) & Pete Moore (The Pain Toolkit)

Today Pete is giving the Sir Michael Bond lecture, an annual British Pain Society event. The talk is unsurprisingly titled: Pain self-management; first choice or last resort? Punchy and to the point, as is Pete. And this is what the pain world, which is in fact the whole world with pain being a ubiquitous experience owned by only the first person, needs to jolt the right actions.

Pete and I could be considered outspoken, disruptive and bringers of change. However, not everyone is comfortable with change. We meet resistance. Not so long ago I spoke to a large group of mainly doctors, presenting some of the latest thinking in pain. The feedback was a fascinating mix of love and hate. Clearly some were hankering after change, recognising that the current predominant model has failed. One who only had courage with his or her feedback form accused the thinking as snake oil. I would love that person to sit in front of the likes of Karl Friston, Andy Clark, Mick Thacker and try to run with that argument!

But this is the reality. We have clinicians practicing old ways that refuse to change their thinking. This is of great concern as the millions across the globe continue to suffer (needlessly) as a result of the misunderstandings of pain. The situation must change: this is the purpose of Pete and I.

Self-management and coaching

Pete has been working tirelessly to engage clinicians and pain sufferers. He shows them that self-management is the way forward using his own story and The Pain Toolkit. An important principle that we must all adhere to is that only the person can ease their own suffering.

Whilst there can be a role for medication and intervention when chosen with good reason and used wisely, the main thrust should always be the person’s understanding of pain and what they do themselves. As I say to each person I see, you are with you all the time so you must be able to coach yourself with clarity and calm to take the best actions.

To understand pain is always the start point. The true insight into the cause of one’s own suffering unlocks the door of potential. This is why Understand Pain exists as a means to deliver the knowledge, skills and know how to society. At UP we have the vision of a world that understands pain. This would mean a huge reduction in suffering, more money available for other social concerns, people would know what to think and do, and treatment would be about encouragement of wise actions by the person.

Getting the best of people

It is always the person who suffers pain (not the body part) and hence we must think about the person and their life. And this is why The Pain Toolkit and Pain Coaching are successful in encouraging and inspiring people to live as a means to managing and overcoming their pain. Waiting for the pain to go before getting back to living just does not work. There is only this moment to take action, right now. The future never comes, so if you are waiting, it will be a long one!

Pete Moore and Richmond Stace
Richmond Stace and Pete Moore

 

Coaching and specifically Pain Coaching seeks to get the best of the person by giving them practical and working knowledge of pain. The focus is upon the person’s picture of success and how we get there step by step. All too often people think that they must just cope, get by, live with it etc. Of course, if this is your best hope then this is all that will be achieved. This is not the fault of the people. It is the problem in society — pain is a social problem. When society changes its thinking, the actions will change. Pete and I: this is our work. And we will keep going, encouraging people to understand, to use tools and practices each day and to build momentum towards a better life.

Today Pete will speak frankly. He will be entertaining, because he is, but he will hit the mark with the fact that self-management is the key ingredient. Without this there is little chance of progress.

I am thrilled that Pete has this opportunity. He deserves the stage and will undoubtedly make an impact. I will try to get there early and get a front row seat! Pete, can I wear a Liverpool shirt?

Oh, and we also both love rock n roll….

Helping others is distinctly healthy ~ a great story from Ghana

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The Helper’s High

Increasingly we are understanding the healthy benefits of practices that we can adopt in an effort to live a long and happy life. This is highly relevant to the millions of people who suffer chronic pain across the globe.

To suffer chronic pain is to be consistently in a state of protect. Pain is a feature of this state and whilst it is temporary and transient, the person experiencing chronic pain will frequently exist in such a state. Developing skills to shift into a healthier or ‘care-giving’ state (as I call it with people I work with) is fundamental to overcoming pain. With this in mind I have invited contributions from people who have volunteered to do positive work to gain insight into how it made them feel.

You may be wondering how someone with hugely impacting chronic pain could engage with such work. Indeed it would be a challenge for many and to some seem impossible. However, with some thought and planning, volunteering to help others can come in many forms. This benefits all — the giver and the receiver. And like any practice, the more it is done, the easier it becomes. We can all access the ‘helper’s high‘. So, here’s a fascinating story about a recent journey to Ghana to do positive work.

Introducing Kenny Webster

I have recently been on a journey, both physical and metaphorical. I would like to share parts of this journey with you, if you can spare a few moments and I promise to try and not be too smug about it. I am one of those people who has always worked hard and despite warnings from friends and family over the years, I almost certainly worked too hard and too long. By training, I am a research biochemist, but after several years of lab research, I became more involved in the public engagement side of science and eventually ended up working in the science museum sector – inspiring others in the beauty of science. In a working life of over 20 years, I only ever took one day off sick, never used my full annual leave allowance, started early, left late and often went in to the lab/ office at the weekends – sound familiar? Relationships with friends fell by the wayside and I essentially became totally engrossed in work, always telling myself that I was doing a lot of good for a lot of people. This might have been true (the jury is still out), but I certainly didn’t save any lives and I definitely didn’t earn a bucket load of cash that I might have tried to buy happiness with – as I perceive some other people try to do!

DSC_1198.JPGA couple of months ago, I was made redundant. At first, there was shock, but then the rational side of me kicked in and I acknowledged to myself that over the previous few months, I had actually been pretty miserable at work and at least this was going to be an end to that. As I thought through my options, I started to recognise just how much of my personal time was given over to work and that I would actually be getting all of that back as well – it was going to be an opportunity to start again, but without actually having to choose to start again! I decided that I was not going to panic and find a new job, any job, as soon as possible, but instead I was going to do something amazing and meaningful with the time that I now had. I was going to do something that I would have considered myself crazy and irresponsible to have done under normal circumstances. So I went to Ghana for a month and volunteered on community projects.

 

It really was an incredible place. The people were so friendly and welcoming as well as having the best names in the world. I don’t tend to meet people called Blessing, Comfort, Princess or Leticia very often and I certainly don’t meet many children called Alan, Norbert, Theophilius or Richlove! Just the names put a smile on my face! I didn’t once, in four weeks, hear a child cry or a parent shout at a child; it just seemed to be a country where people were content, despite the extreme poverty that we witnessed. The main project that I was working on was building a new school, but we also ran a community library that would only open if volunteers came and opened it. Every day there were around 30 children outside, waiting for us to arrive, desperate to read, practice their English or do some colouring. In this tiny, remote town in the clouds above Ghana, there was such a strong desire to learn.

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One day each week we would visit a hyper-remote village, the sorts of places that you see on comic-relief with a celebrity shedding a tear. But there were no celebrities here, just mud and straw huts, dirty water and smiling children. We would install and demonstrate water filters, carry out minor first aid and dispense food, clothes and hygiene products – basic human rights types of things!

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I was a fair bit older than most of the volunteers (who were largely on gap years or had just finished university) such that I effectively became the house Dad. The vast majority of these people though were remarkable in their commitment and resolve. Yes, one or two were clearly on a holiday or just wanting to have something interesting to say on their personal statement, but most were far more interesting and mature than I was at their age – and despite the Dad jokes, I felt welcomed into their community as much as the Ghanaians welcomed me into theirs.

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Now that I am back home, I am of course considering my future and especially my future employment. My Ghana experience has shown me how much I personally value helping others. I think I have always been quite a nice person, willing to help others, but I now feel that I want go out of my way to try and make other people’s lives a bit easier if I can and from a career perspective, I am certainly looking at organisations whose missions are to help others. As I left employment I told my former colleagues that I was going to go somewhere and do something incredible, even creating the Instagram hashtag #smugken to let me boast about it. There was a certain amount of hope in that desire to do something incredible, but my experience in Ghana has certainly affected me in a very positive way, enriching my life and giving me a strong sense of wellbeing. It might not last, but I hope it does, because I really do think I prefer the version of me that has come back from Ghana.

Kenny Webster