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.

 

 

The day after…

Some reflections on the day of the Beachy Head Marathon; the experience, running and what’s next for #upandrun.

What an incredible day it was yesterday. Everything came together on the south coast to create the perfect backdrop for #upandrun at the Beachy Head Marathon and Beachy Head 10k.

Hats off to my wife Jo, who volunteered to run the hilly 10k course, for UP. Jo would tell you that she doesn’t really like running, however, she certainly experienced the runner’s high yesterday, feeling that unique sense of joy as you pass under the finish line.

This is a beautiful part of the UK, and the marathon opens the opportunity to get out there and experience the rolling hills, steep climbs and hugely encouraging Sussex people. In a way I could say that I ate my way around the course. I certainly had about six Mars bars amongst other fare to keep us going. And then there was the band!

Trail running is different to the typical road race. Most people are there to ‘enjoy’ themselves, take in the views, feel that sense of camaraderie and complete the course. The fuelling stations were most welcome — the smiling faces, hands holding out drink and boxes of chocolate, biscuits, bananas and of course, jelly babies.

The run is the main event, yet the conversations and comparing of notes before and after are all part of the fun. The smiles and nods, the acknowledgements of fellow participants and others all make it special. Into the night you could still see the glint of the swinging gongs, the badges of courage and completion.

Many run for causes — you know why we were running. Reading other’s shirts, some printed and some scrawled, ‘mum’ for example, it all provides the narrative. So many stories that make for the rich, shared experience.

The last section of the marathon was the most scenic. The Seven Sisters provided the view and the journey, up and down (breaks on!!).

The day’s many high points remain vividly in the memory. They will provide great boosters for future runs. The basis of using strengths-based coaching is to clarify what went well and how one can build on this moving forward. Preparation and planning the day certainly form strong building blocks: the building of tolerance with months of training, taking it easy the week before the day, eating well the night before and looking after one’s energy during the run.

‘Me, my legs and I’ was a draft blog that I was writing during the training for this marathon. It’s a lengthy and involved process, much like life. There are many analogies that one can draw from distance running, for life is an endurance event in itself. How we prepare, the approach we choose to take, how we bounce back, how we roll with life’s challenges, how we remain present and see reality, how we let go and how open we are to whatever is or may happen are all important factors that determine the quality of our life, and the run. Or vice versa.

I have a number of mantras that I have used to keep going, whether it be the run or life. Yesterday I didn’t need too many. It was just one of those days that it all worked. The sun, the view, the vibe, the support, having loved ones around, the Mars bars. But sometimes we need more. At one point I stuck on ‘Nothing but a good time’ by Poison. I ‘rocked’ up the hill!

And so to the end. I had a text from Jo, who had completed her run and was ecstatic. I called her up and we shared her joy — what a massive motivator it is to hear someone buzzing with such excitement! Before I knew it, I was coming towards the final descent, a steep one. Watch the steps, people yell as you come down the hill. The final boost was hearing my kids singing happy birthday over the loud speaker as I came along the final straight. They had the microphone! Awesome!

As the sun was setting over Eastbourne and Beachy Head, I felt that I had somehow ‘done’ the hills. Then I thought about it and realised that you never can. They are always there, despite some cracks and crumbling. You never beat the hill, just your own fears and worries.

Until next time.

And the next #upandrun challenge. Look out for the logo! And the Understand Pain Workshops — next one in Preston on Nov 3rd >>> free tickets here. Please do share this so we can have as many people attend as possible. The more sharing, the better!

Farewell Eastbourne, for now.

RS

Marathon day

The sun is not up yet, but we are. As ever, you seem to be waiting for the day, and then it is upon you.

We arrived in Eastbourne last night, welcomed by the most enormous moon as we followed the coastal road, Beachy Head on the right in the dark. In places I had to drop down to third gear to climb the hill, thinking about how we would be running those very same hills in just over 12 hours.

I am fortunate that a old pal has done the Beachy Head Marathon before. He also introduced me to a fellow runner from his club who has done it ‘5 or 6 times’. Casual. I would definitely remember how many times I had done it! So it can’t be a big deal; right? I was invited to a 20k warm up, which I politely declined. 44 is enough today thanks. The next piece of advice was gold: at the start, walk until you hear the bagpipes and then start running. This was followed with, yes, the first hill is a bastard. Righty ho!

Time to climb into the kit and grab some brekkie. There’s always something special about putting on the shirt, and representing something far bigger than oneself. You remember that the run is representative of a huge need in society and is one more step forward in raising awareness.

Look out for the pics on the way round, and maybe some live footage.

See you on the other side!

RS

#upandrun ~ Beachy Head Marathon & 10K

Beachy Head cliffs

Only a few days to go until the Beachy Head Marathon and 10K. Followers will know that we are running to raise awareness of the work of UP, Understand Pain. UP is the social enterprise dedicated to changing the way society thinks about pain to reduce the enormous burden of suffering.

There are a number of things to get right when running a marathon. Fortunately I have some solid advisors around me for training, kit and strategy. Then there is the question of fuel, both day to day, before and after longer runs and during the runs — I have just had to accept that those gels are vile to get down but serve a purpose…

I must admit, I have enjoyed the eating bit of the preparation as I did before the London Marathon in 2017. Flaxseed, porridge, nuts, greens, juices, beetroot (and beetroot shots), pasta, rice, cheese…. yum! Then there are the energy bars; and I really like these. So, I was delighted to accept sponsorship by Pursu Nutrition, and not just because I had sampled and loved the bars during the experimentation process.

Pursu nutrition bars cycling

There is a synergy between UP and Pursu that started with the creator, Sanjay, coming to see me about a common cycling pain problem (pudendal neuralgia) that is typically enduring and limiting — his story to follow. It was during our work together when he overcame his pain, that Pursu came into existence. We chatted a fair bit about the bars, but mainly about the purpose, the mission, the ‘why’, which always resonated with that of UP.

I was most excited to be given a box of bars by Sanjay. I am pleased to say that I have managed to keep enough for the day, for both Jo (my wife) and I (this time Jo volunteered to run the 10k whereas previously I persuaded her do run the Royal Parks 1/2 marathon, apparently…!). I admit that I did eat two on the way home.

Sanjay on his bike
Sanjay ~ creator of Pursu

The rolling hills of the South Downs await us. This week is a little like a phoney war as others who have tapered will know. The feeling that I should be doing something has to be overcome by simply resting, stretching, moving, a couple of light jogs and then stuffing our faces on Friday. Ha!

Look out for our posts. If I can take footage on the run I will, to share the experience! Please share and spread the word about our work. We have an UP Workshop on Nov 3rd in Preston that is free for people suffering pain (click here) and the UP Programme will be on the website very soon as a starter to be built upon — a range of tools and practices; knowledge, skills and know how to overcome pain.

What is to overcome pain? This means living your best life, considering your circumstances, building wellness and focusing on what you can do each day to achieve a picture of success. Pain is not permanent; we change. I want you to reach your potential and overcome pain by living, feeling inspired, enabled and in control.

understand pain logo

On we go.

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….