Today, my vagina and I went to London.
In health terms – just like in a West End wannabe’s journey – when you get referred to London, you know you’ve made the big time.
I was referred by my God-sent pain specialist to another specialist at UCL. I had a very positive experience with this doctor, who treated me as a whole person, not just a walking vulva. We talked about causes, symptoms, emotional issues, mental health, sex and relationships… Then I got my pants off for him. It was basically like a really, really good date.
However, I am serious when I say that it was a really good consultation, as consultations go. Accustomed as I am to a stolen five- or ten-minute appointment with my GP and pain specialist, the hour I was given to discuss my chronic pain and how it affects me as a woman felt downright leisurely – like a luxurious bath rather than a functional shower which leaves you smelling nice but still feeling a bit grubby and stressed. While we’re on the subject, I also want to mention that the examination was extremely sensitively handled (unlike the traumatic one I had a couple of years ago at a hospital which SHALL REMAIN NAMELESS, where their invasive cotton buds left me with tears streaming down my face, and still they persisted to prod and poke). The doctor and accompanying nurse were both consummate professionals, making me feel comfortable and not in the least bit freakish. Crucially, the doctor did not push my limits any further than he needed to in order to establish the tenderness of my pelvic floor muscles, as he made a point of telling me he didn’t want to cause any more pain than was absolutely necessary. Which, to a chronic pain sufferer, is always one of the nicest things you could wish to hear from anyone, anytime, anywhere. But especially when your knees are spread and your knickers are halfway across the room.
The upshot of this consultation is twofold: I am being booked in for a lidocaine infusion, just on the off-chance it might provide some relief. However, the doctor was ardent to impress upon me that this is a short-term solution if it is any solution at all, but he wanted to make sure I knew they were leaving no stone unturned. I MEEEAAAAANNNN…
The second outcome of this consultation is that I have been advised to take part in a multi-disciplinary pain management programme, which, as I understand it, is made up of a mixture of physiotherapists and psychotherapists, talking through how to manage good days, bad days, stress, flares, diet, exercise, career… Basically, all the things that pain touches in life (which is pretty much everything). I did have to ask the doctor whether this was just a nice way of him saying I would never be cured and all I had control over was how I responded to it. Mercifully, this is not entirely the case, although there are no guarantees of physical improvement per se. The aim of the programme is to tap into the Central Nervous System, which has been so trained to expect pain that it has become trapped in a cycle of tensed muscles, making things from wearing jeans to penetrative sex completely unthinkable.
The purpose of this programme is to retrain the body and mind, through counselling, physiotherapy and mindfulness, to learn it can do more than the limitations it has learned, to expect and thereby achieve a better quality of life.
This in turn should take the focus off pain, oust it from the driving seat, and hopefully, that way, decrease the amount of pain I will experience. I am aiming to vlog about this in more detail imminently, but hopefully that explanation will suffice for now.
What I wanted to share above all was something my Mum said to me after the appointment. We were talking (as we so often do!) about how I am going to do life now; the focus HAS to be on me doing things that fulfil me, make me happy – as that is when I am most focused, most creative, and therefore in the least amount of pain. I was also sharing with her how I feel that, because chronic pain has made it impossible to cling onto the dreams I used to hold dearest (at least, they cannot be relied upon or be considered definitive as they used to be), I have developed what I feel is a healthy sense of detachment. There is no one thing in my life that defines me – not my achievements, not my goals, not my talents, not my weaknesses. I see myself as a puny yet purposeful human being, who I am proud of because I know I fight every day, and I live as much of my life guided by love and understanding as I possibly can, above all else. That’s it. I’m not The Model Student, The Aspiring Television Producer, The Future Wife and Mother; I’m just me – the rest is footnotes. Then Mum said something I will never forget. “Do you know how many people try to reach the place that you’re in?” she asked me.
“You’ve had your LIBERTY forced on you.”
It’s true. I’ve HAD to loose myself from the weight of my own expectations, the pressure to be what others want from me, the burden of the stringent demands I’ve placed on myself. Pain has taught me that life is hard enough; simply live, and do what you can. To put it plainly: I am free to do what makes me happiest and healthiest, because at the end of the day, quality of life (maintaining yours and improving others’ in a way that allows you to still keep yours at a good level, whatever you deem that to be) is paramount. In all these days imprisoned by my debilitating sensations, I have been changed. Pain has forced me to be free. And for that – and I really mean it – I am truly grateful.