Vulvodynia is one of the most horribly painful conditions for a woman to suffer
Imagine that your vulva is so sensitive that it is agonising to wear pants or tight clothing, to try to insert a tampon is eye-wateringly painful, and to have sex is absolutely out of the question. For some women, that is what it is like to have vulvodynia.
‘It was like a red-hot poker…’
(quoted from the article)
The recent Guardian article by Lauren O’Neill brought attention to the condition that is poorly recognised and understood. In my experience, words rarely come close to capturing the misery and suffering. Having listened to many women recount their story of pain, I know that the impact upon their life and sense of self is immense. Some even appear to blame themselves.
In society, painful conditions are predominantly viewed as having physical causes. Examination and investigations seek visible damage or evidence of pathology to explain the pain. If there is something to see it is labelled as the cause, which can then be removed or directly treated to resolve the pain. This seems straight forward, yet in many cases this is not what happens.
Sometimes there is something to see, such as the redness of inflamed skin (the immune system in action, sensitising both peripherally and beyond — read here & here), and sometimes there is nothing visible. The area where the symptoms are felt (embodied) can be treated in various ways, but often the effects are small or zero, because there is a bigger picture. There is huge variance in what is seen and what is felt, and this is because the two, pain (subjective) and tissue state (objective), are different and poorly related. This has been known for many years. The paper that first discussed the relevant scientific findings was published in 1979.
Yet in society, the predominant thinking continues to focus on the search for something to see on the person, a scan or some other test result to explain pain. However, nothing that we can see fully explains the experience of pain. Can you see thirst on a test? Hunger? No, of course not. So why does society look for pain? You cannot see it, you can only feel it.
This is the story of chronic pain, vulvodynia being an example.
Chronic pain is the No1. global health burden
Chronic pain is rife. I am sure you know someone if not yourself, who suffers persistent or chronic pain for one of many reasons. 28 million in the UK, 100 million in Europe and 100 million in the US are reported to suffer chronic pain. It is thought that 20% of children experience chronic pain as well.
Perhaps this says more about society than anything else: the pressures, the environment, the politics, the expectations, the limiting beliefs, the unresolved traumas and more that cause biological protect states to emerge in some individuals. We live in a suffering society despite all the advances. Pain remains the most human of conditions, and when in pain it is humans we need, not technology. We need human touch, human kindness and compassion and human care. I have argued elsewhere that pain is a social problem, not a medical problem. The answers lie in within us.
It is important to say that there is no blame attached to the individual suffering pain, for they have not chosen this experience that is embedded within such a society. The aim here is to provoke a change in thinking about pain that is desperately needed. Understand pain to improve your life, is the mantra for the social enterprise I co-founded in 2015, entitled Understand Pain.
When you understand, you can begin to see why pain can be considered a social problem. Pain affects lives in every way: hopes, dreams, movement, activities, relationships, work, having fun, finances etc. You can also appreciate why treatment upon the area of pain is not enough. It is the person who suffers pain within the context of their life, not the vulva or the back or anywhere else. When I have pain in my back, my back does not go and seek help, I do. The whole person is treated and considered, not just the body part.
The simple rule is that the more we focus on treating the bit that hurts, the worse the outcome. The more we focus on the person, their hopes and dreams and the steps to take each day to get there, the better the outcomes. In essence, this requires coaching, which is why I pioneered Pain Coaching over 10 years ago, to meet this need. People want to know how to improve their lives. That is why they come, to find out how.
‘The emotional scars caused by years with no help, and feeling so isolated by it, have done the most damage’
(quoted from the article)
Great hope for chronic pain
Pain can and does change. We know this from people’s stories and from the research. Individuals start by understanding their pain and how it has evolved within their life before learning strategies, practices and ways to move on and live with meaning. We can choose to aim for better lives and take steps each day. This is the challenge because there are the inevitable ups and downs that we all experience for different reasons. Knowing that you can navigate these moments and build momentum with a set of practical tools empowers the person, giving them confidence and the know-how to improve their life. This is the ultimate goal of both the Pain Coach Programme and Understand Pain social enterprise.
Pain Coaching for women suffering vulvodynia
Coaching focuses on the person and how they can achieve their best results. A coach encourages a positive approach, working practically towards a picture of success by taking wise action based on best decisions being made over and over. Really, a coach coaches the person to become a self-coach as they have to make an impact in their own world by using their knowledge and skills to create new healthy habits.
A woman with vulvodynia will have found different ways to cope with painful moments. They may or may not be effective, but they are the choices that she has at that time. Expanding these choices is a key aspect of the programme together with ways to apply the brakes to the suffering and focus on what is important during challenging moments.
Pain is all consuming. It breaks through everything, fully occupying our attention. The brain predicts pain as the best explanation for what is happening right now biologically. This is the same for any experience (see video here). In the case of chronic pain, this can be thought of as a habit of protection just in case, due to the weight of evidence from prior episodes. The experience is also fed by expectations, beliefs, outlook, emotional state, attention, inner dialogue (the story you tell yourself), context and more.
We must focus on the person because it is they that feels pain, not the body part
The biopsychosocial model is a more encompassing way of focusing on the person, their life and how the pain is embodied and embedded within their social and cultural circumstances. At first this approach may appear more complex, which it is, yet it offers a multitude of ways to address pain as a perception. And just because we are talking about perceptions and minds and emotions, it does not mean that pain is not real, or that it is in the head. Pain is real and pain is embodied, always. Pain is what the person says it is, has always been my mantra.
The purpose of this blog is to raise awareness of vulvodynia and demonstrate that the modern understanding of pain gives great hope for practical ways forward. This understanding from the latest science and research is years ahead of what is practiced in society. One of my purposes and that of Understand Pain is to close this gap.
We must focus on the person, the life that they want to live and the steps that they can take each day in that direction. That is the essence of coaching, and in particular strengths-based coaching that seeks to get the best of the person and results. Within the programme are many strategies and skills to build wellness (our greatest buffer to life’s challenges and the best way to switch from protect mode to thrive mode), habits of peak performance, specific exercises, nourishing movements and more, that overlap with ways to put the brakes on the anxieties, worries and suffering.
Women with vulvodynia are in a protect state (as is anyone in pain — pain being part of the way we protect ourselves), often disconnected with what is important to them and disengaged with their body due to the pain. As mentioned, the person’s sense of self is affected as relationships are put under strain, work becomes challenging (what do I wear? How can I concentrate with this pain? Can I sit? Etc.), and they become socially withdrawn. Who am I? All the things that they identify themselves with fall away. This is why one of the most important themes of a programme is to reconnect and re-engage with people, purpose, the planet (3 Ps as I call them), and their body. To be well we must feel whole, where thoughts, actions and perceptions meet. To be well is a skill to be practiced each day like cleaning our teeth. With the right practical knowledge and skill set, the situation can improve, pain can change and we can live a fulfilling life from wherever the start point.
For more information about overcoming pain and improving life, please email me [email protected]