Another wonderful connection I've made on my daily mission for understanding Pelvic Pain, is with the lovely Kathleen Mazzella, founder of GAIN (in Perth). Gynaecology is currently not too connected to Pudendal Neuralgia (and vice versa), but after my own experience, I believe in time they will be very closely connected. After all, there are many cases of nerve issues arising after gyneocolgical procedures, but I can also report that my first issue was in fact a nasty over grown pelvic ligament that my Gynaecolgoist removed (and with it went the extremely high sensory pain possibly releasing the pressure on the Pudendal Nerve). Obviously progress and learning about the brain, pain signals and general medical research, will change the way we tackle pelvic pain today, thankfully! (excerpt from the GAIN website) Kathleen (Kath) Mazzella, Founder of GAIN (Gynaecological Awareness Information Network Inc) Kath has endured the trauma of being diagnosed with, and treated extensively, for a gynaecologicakathl cancer – vulval cancer. From a position of experience, and compassion, Kath created GAIN in response to the needs of these women. Today, a vibrant cancer survivor, she continues to lobby for more awareness, funding and research for gynaecological cancers, pre-cancers and other gynaecological disorders.
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.
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.
"I've got to get to work, it might have been work... I have to get to Swanson Street... I sell The Big Issue". Yes, you read right... and to top it off I was kindly informed, in just a few stops, that I could buy a calendar too! I couldn't help myself, I asked, "Are you trying to sell me something on the tram?" We all laughed.
The condition and existing barriers to management and practice My understanding of a 'syndrome' is that it seems to remain myth-like until serious research is undertaken and repeatedly produces the same findings in many patients. The Research for Pudendal Neuralgia is minimal worldwide, almost non-existent in Australia. Although specialists and therapists are documenting their work Pudendal Neuralgia can't seem to penetrate its existence in Western Medicine's Bible, and so it is unrecognised, misunderstood or ignored. So when my physiotherapist at The Women's Hospital mentioned Alesha Sayner and I heard she was compiling a presentation for her Masters specifically about Pudendal Neuralgia, I jumped at the opportunity to hand over all my experience knowing this is exactly what the issue desperately needed. I was even more enthusiastic that Alesha was interested in documenting WorkCover's understanding (not) and treatment (not) for injured worker's with the issue. Thank you Alesha Sayner and The Women's Hospital for this huge first step, so crucial to Australian sufferers of Pudendal Neuralgia, such therapy for me too!
...I feel I'm exercising my brain when I read an article that sparks more thought and leads me on a hunt for more and more information and the process all results in gold! It might not necessarily be what I was looking for but a lovely surprise nevertheless... It made me think about another possible cure for my issue (I know, very far-fetched but imagine if my brain could be programmed to make me live/dream all the activities my pudendal nerve won't let me do by night?! Imagine?!). So I went to my favorite, most trusting online resource, no, not Google, Body In Mind...
You can't beat it, don't even try and argue with me on this one. The toilet is most certainly THE best seat in the house (well my house for sure, actually come to think of it, any house or place I go to).
Absolutely nothing great about having to live by these rules but it certainly saves me alot of extra pain, I have more up time and, above all, I decided this is just temporary. I'll do what it takes to get by most comfortably (if I can dare to use such a word for a chronic pain site!): •I understand that everything I do counts, even a sneeze (ok they count alot!) so I make sure I pick and choose what I do •I learned and practice the word pace •I'm more selfish •I say "I can't" and recently I've even stopped apologising because "I can't"! •I let go of obligation (actually I need to work on that one) •Keep any visit short, close, soft (not too many parties unless you can walk away) •I email my WorkSafe case manager to eliminate hearing all unnecessary hogwash •I have a daybed and made a 'dayspace' no where near a television or my bedroom •I have a dog, he's one of my biggest aids
avulsion The forcible tearing away of a body part by trauma or surgery chronic A chronic condition is continuous or persistent over an extended period of time. A chronic condition is one that is long-standing, not easily or quickly resolved [...]
...I developed my own pain score which I'm sure when read by anyone without neuropathic pain, will be enough to convince them I'm mad and in fact I must have fallen on my head not my backside. But this site isn't for those people, (go off and play... you don't need to be here and good luck to you).