Let’s not! We shouldn’t be here!
pudendalnerve.com.au is coming up to its 10th anniversary.
About this time a decade ago, and after seeing my diagnosing physiotherapist, who set me to the task, I began building a website. I planned for this site to serve a few people struggling to find a diagnosis for an extraordinary pain experience that no one seemed to comprehend.
Hardly anyone could even name it!
Never did I imagine that pudendalnerve.com.au would end up speaking to women and men around the globe.
Surely healthcare can make a lot of progress in 10 years. Indeed, we should be able to learn much about pain in that time.
Surely in a decade, we would all know a lot more and not only learned a lot more, but we should be feeling the knowledge in the form of pain relief.
So what are you and I doing here on a weekend (or the eve of one if you’re up North) reading about pain?
I can stomach my achievements; my book, the art, the documentary, the ongoing advocacy, as well as the training I’m doing with GP’s. I love that this experience amounts to a change in the appointment experience for people living with pain via PainTrain My Health Summary.
But what I can’t stomach is that we’re still searching for the definition of pain. That we still experience stigma because people who don’t experience pain expect to be able to see it.
It drives me crazy to hear people still can’t find treatment, and in very many cases – day in day out, people living with pain struggle to even find a practitioner who understands them.
When I began this website, my ambition was to help people worldwide by gathering as many resources about Pudendal Neuralgia (and its associated ogre effects) in one place.
It was difficult to find any information AT THAT TIME.
How are we still IN THAT TIME?
I’m not going to celebrate this anniversary.
This website was never intended to be ‘celebrated’ or even last this long. It was meant to help with the diagnosis and treatment of Pudendal Neuralgia and all that comes with this chronic pelvic pain.
Now that I would celebrate!
There is only one thing worthy of celebration in this situation, and that has to be the community of amazing people I’ve met. There are many cities worldwide where I could visit a sister or brother or practitioner or clinician or therapist or researcher and be welcomed with open arms (and champagne!).
Now I even have tech friends – brainiacs who are helping me build and progress PainTrain MHS (and who will be lifelong friends the way things are going!).
It’s a bewildering feeling of connectedness and camaraderie for someone living in a 1km radius to manage life with chronic pain.
I won’t thank you for following because, honestly, I wish none of us was here. But, I will thank you for your encouragement over the years and beautiful warm comfort and love through your emails, comments, support, donations, subscriptions, helpful feedback and for being there for me through my most challenging moments.
Isn’t it the truth Soula !! Are we ever going to get this disease and it’s torture known to more than 4 doctors !!! I get angry when sufferers are still told to see a psychiatrist !! We press on
Sharing the pain of those who seek help !!!
Thank you for your work ! Judy
I do understand the psych investigation but I believe what people living with pain need more than ever now is a pain coach, pain specialist and then to find the exercise routine that best relates to their bods. We have alot of learning and alot of driving to do. It’s a hard slog but we need to invent our paths and guide our pain teams. It sounds insane but unless we collaborate we will not make progress.