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Vulvodynia. Yes, you read right… women get pain ‘down there’.
Pain in the pelvis can include pain 'down there' too... sometimes 'back there' as well! True! Just follow the path of the Pudendal Nerve and see where its extremities are... I have cyber met many women who suffer with this awful condition called, Vulvodynia. The Pudendal Nerve branches extend to the Vulva, and so the condition is certainly 'related' to the whole Pelvic Chronic Pain issue. I personally relate to the condition after having extremely high sensory signals (almost maddening like I had my own 'hoo-ha' stuck in a power point!!), up until an oversized pelvic ligament was found and resected. Thankfully that high sensory pain (and associated issues) ended for me there. Of course my Pudendal Nerve and I are still in a personal battle over its insistant pain tune. But... I'll leave my personal details there and concentrate on some much needed awareness for my pain sisters who are out there telling their story and providing a voice to those who can't bare to speak about this awful issue, Vulvodynia. Firstly, a wonderful and supportive cyber friend, Vanessa Watson who lives in Perth and helps run the Pelvic Pain Support group with Catherine Aurubind for HOPE (Health Organization for Pudendal Education). Vanessa's story was also recently published in The Sydney Morning Herald. You can also find us chatting on Facebook. Secondly, Esther runs her 'Mad Peach, living with chronic pain in the hoo-ha' blog, and might I add with a great sense of humour. Read her account and many other accounts from her followers at: madpeach.blogspot.com.au. And thirdly I'll add a recent story, Privacy around private parts hurts women's health, which went to air on the ABC'S 7:30 report last week. It is certainly difficult to speak of this very personal pain but the more documentation and the more we share our stories, the more courage we give to our sisters to speak up. Speaking up means we share our treatments and knowledge and bring pain relief and quality of life. Silence will take us nowhere. Please share this post and related links.
Do I dare put it in writing…?
Happy... post nerve block No. 3. I'm at 5.3 weeks and have managed to walk daily a few days in a row, practice some extremely mild yoga and have a few meals out without the pathetic fire warning in my pelvis. Could it be? Could it really be? Here's hoping 2013 begins with some pain free magic. Right now, I feel like this... and I wish that everyone who comes across my website, or is a regular reader feels the same. If not, please, remain hopeful.
Building blocks… I hope!
I’m not yet clear about the effects of Nerve block No. 3, but I’m calling it… I’m going to be positive… I believe I’m building! It’s just a sorta three steps forward and two back situation.. I hope. So far, my building blocks go like this: • Nerve block No. 1 (December 7, 2011), • Nerve block No. 2 (April 18, 2012), • Nerve block No. 3 (November 23, 2012)
Ho Ho Hopefully…
Here's hoping for a pain free 2013. Best wishes everyone. Health, peace and happiness to you all.
Take a seat… if you can!
With Pudendal Neuralgia, or any other pelvic chronic pain issue, it can be impossible to sit pain free (let alone get away without a flare up). Of course, I'm no pro when it comes to seating, but I've learned a lot from my own experience and from listening to the 'ouch' in my pelvis. The seating I needed, was most often hand-made! (Have a look at the one my gorgeous father in law made, it's the stool with adjustable foot rest!) Although I've worn out, thrown out, tried and tested so many more seating aids, I'm showing the ones that have lasted or worked for a while. These are the ones I often resort to.
Performance ‘fit for modified duties’
Did you all hear I'm back at work part time? Much thanks to our flexible home/office setup and Theo's immense help. Regardless, how lucky am I hey? But oops, hang on, I have to correct myself. It's not lucky for me, it's lucky for the WorkSafe Agent. And I must clarify because from their point of view I didn't get myself back to work, it had nothing to do with my research, the practitioners I found, their treatment and great therapies (or my hip pocket!). Nope, nothing to do with nerve blocks and medication, but rather, my high activity levels. Yeeees, I have been a full time artist and I've been caught red-handed!!! Well I'm sick of this crap! And this time, the story isn't going to end with me feeling anxious and swallowing those bits of paper, while the Investigators excuse themselves gutlessly with a letter marked 'Private and Confidential' that they send to the WorkSafe Agent. It's going to end here, on my blog. And I'm even going to have some fun while I'm at it! ...And if you're an investigator wanting to comment, don't bother! Your comments will be deleted. As I said, this time the story ends with me.