It's the middle of December. Lockdown is over. Tier 3 begins. The first vaccinations happened yesterday. My vagina has been happy today. LIFE IS GOOD.
Apart from two super awful PMS days over the weekend, it's been a good week!
Don't get too excited. I'm still in full avoidance mode. I've forgotten what my dilators look like. I don't remember their names. Dozens of bottles of lube lie alone and unloved in the bottom drawer of my bedside table.
I think I'm nearly ready to start again though. Tomorrow maybe? or Tonight? ...Yeah I know I said that last week too. I have commitment issues.
Dilating Progress
So technically I haven't made any specific dilating progress but I have made progress in other pain-related areas. So I'm counting that as a win.
Moving swiftly on..
Pelvic Pain Matters Webinar by Nick Wood
I attended my first PPM online webinar! If you don't already know them Pelvic Pain Matters run educational webinars for people with and clinicians treating pelvic pain. The session was led by Clinical Psychologist and Researcher Nick Wood with contributions from Sheren Gaulbert, Karl Monohan, Nicky of @Innaboxdesign and others.
The call started with Nick bravely introducing us to his personal pain journey over the video call. Five minutes in it became startlingly obvious that men unfortunately face many similar issues to women suffering with pelvic pain. Of course the presentation is a little different for obvious reasons but the similarities were overwhelming. It was the familiar story that we are all used to hearing about the lack of knowledge and empathy among clinicians, excessive delays in getting a proper diagnosis, struggles with treatments, the stigma and isolation of having a pelvic pain condition and the lack of research and funding.
After taking us through his journey - which 'ended' not in a cure but still in a pretty good place I have to say - Nick took the group through some activities, treatments and therapies that can be useful for managing persistent pain. Now, I don't want to spoil the content for anyone as this was a paid-for webinar so I will just say this. It was a really engaging webinar, I felt quite emotional to hear Nick's story first hand and I cannot get over how brave he was to do this on a video call. I walked away elated that I had found YET MORE suggestions on things to try to manage my situation better. I'm such a nerd honestly. So excited about homework.
Here are three of my biggest takeaways:
The importance of accepting your reality as it is today, without looking back and constantly wishing you could be like you once were. I spent the early days pre-diagnosis doing this and it made me really miserable. Accepting your reality doesn't mean accepting pain forever, it means accepting it in the moment and learning to live alongside it in a fulfilling way rather than putting your life on hold. I'm not who I was 13 years ago (who is?!). Even if I fully recover, I will be different. For me it's important to find a way to still have healthy relationships and not let my condition stop me. Super easy to say, not easy to do. But it IS necessary.
Holding back on seeking help or treatment because you feel that it's the last option and you're worried about what might happen if it doesn't work. Not everything works for everyone so yes it is a possibility that X treatment may not be a success for you. I withheld from actual proper treatment for quite a while on more than one occasion because I was terrified about what would happen when it didn't work. I had already decided that I had failed before even trying. Not helpful, since there is a huge psychological element to Vaginismus. It also meant I delayed my recovery unnecessarily. One thing I have learned in the past two years is that there are SO MANY different treatments and ways of managing your pain. SO MANY. If one doesn't work for you, then keep trying things until you find what fits for you. Here's a few: CBT, Cognitive Hypnotherapy, ACT therapy, Physiotherapy, Pelvic Floor exercises, Yoga, Mindfulness, Art therapy, Journalling, Breathing exercises, Dilators, Self Hypnotherapy, Graded Motor Imagery ..... you get the picture!
Noticing when, where and how your pain shows up. Recently I discovered something that I never knew about pain. It seems so obvious now so I feel a bit silly saying this but I didn't realise that your psychological state had an impact on how you feel pain. Whether you are stressed, depressed, anxious or whether you are happy and relaxed can affect how your brain interprets threats or pain signals. THIS IS SO IMPORTANT. I've been really paying attention to my body in the past week or so and I have noticed some astounding trends. I had a couple of days where I was extremely emotional (again) due to a cocktail of hormones, stress and grief and GUESS WHAT. An old knee injury that hasn't bothered me for months came back, a back pain that I get occasionally started up. Needless to say I didn't use my dilators over those few days but I can bet my pain score would've been super high. This has been a game changer for me. I've really struggled with coming to terms with the psychological aspects of Vaginismus in the past so actually noticing my pain levels in the moment has really helped me with this conceptually. So, listen to your body!
I can highly recommend PPM webinars in future, there are some coming up in January so get them on your Christmas list now. It was enjoyable to hear people speak openly about their pain conditions on a video call (participants cameras are not switched on!) and things like this always remind me that I'm not alone in this, and there is light at the end of the tunnel.
So that's all from me today. Catch you next week - when hopefully I will have actually used my dilators! But also don't hold your breath ;)
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