soula in About
, My pain
, Work & The System on May 9, 2013
We don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN).
However this media attention and the snap of me in Sunday’s weekend paper had me staring at my portrait (thank you Marija Ivkovic) with curiousity at that captured second of my able life. I looked incredibly independent, active, like I was working full-time and like the issue I confessed to was clearly easy to live with.
We are all judged on our facade… and although it was stated in the article that I have PN, I often wonder: can it (or any other invisible issue) ever be understood by my friends, family or community at a glance? The answer is obviously ‘no’. I myself battle to understand this conflicting issue with its high sensitivity, on/off maddening, screaming and confusing signals and failing functions, and that’s no surprise because even I can’t see it! Theo puts it well, “I can’t understand Pudendal Neuralgia but I believe Soula”.
soula in About
, My pain on April 23, 2013
Closure really is something. Feeling like a niggling concern is finally put to rest can be so satisfying, it brings me such calm. Slowly, my pelvic chronic pain niggles are finding their place and providing me with the peace my body and mind needs so I can let go, move on and most of all feel my injury is clearly understood.
I had another session with the wonderful Raffaele who continues to treat me fortnightly. I was ready to call the next nerve block last week but after yesterday I’m hopeful again and thinking I was in some kind of a flare. I can’t expect (but I will!) that with my effective management flare ups will cease to happen. As I test my capacity and lift my full litres of milk occasionally, walk the dog and go out more often, I’ve got to expect at some point the body is going to say, ‘hang on love, you’re lifting too much milk!’
As you may have read I’m a little suspicious as an injured worker, about my WorkCover assessments over the last six years.
No one has ever documented or treated my condition appropriately, no one seems to know Pudendal Neuralgia, it seems like it’s not part of the guidelines that Independent Medical Examiners are required to assess [...]
Another year gone by since the pop! Now I know what practitioners mean about peeling onion layers. My onion layers have gone something like this:
Removal of pelvic thickened ligament Peripheral stimulation device implant Diagnosis Nerve blocks Medication … Could it be my Traditional Chinese Medicine?
soula in About
, Pudendal Neuralgia on February 25, 2013
Well it’s hardly a birthday celebration! But certainly a time to reflect and assess myself and the achievements of PudendalNerve.com.au. The total visits in 12 months total an astounding 21,500 and the search terms are a clear indication that still, so little is understood of Pudendal Neuralgia worldwide.
The first note must be of thanks and of course, has to go to my husband Theo. Without Theo’s daily help this site simply wouldn’t be up and running…. neither would I!
Second note worthy thank you, and certainly something that can be celebrated, has to be the beautiful connections I’ve made in the past year. I’ve met the most inspiring, energising, kind, compassionate people, whether practitioners, therapists, chronic pain sufferers, or people attached to the pain system, you have been my encouragement and empathy. Your pain and/or knowledge inspire me to continue and get to the bottom of this dreaded pain issue (in the hope of resolving it not only for me but for all of us!), and/or try to voice my improvements for an ignorant WorkCover system.
As far as my personal 1st year status goes, I definitely have ‘progress’ to celebrate; I’m running on Nerve block no. 3, refreshing my pelvis as required with a newly installed bidet, taking minimal amounts of Endep, in much less pain but still much limited with capacity and in need of daily help. Although I still need regular massage, I’m able to work a little from an accommodating home setup, thinking a lot more, delegating-delegating-delegating and finally, but not least, have taken a plunge into the wonderful world of Chinese Medicine which I believe may finally be able to reach my pain. Stay tuned for another update on that soon.
(image) Nerve Block Cake & Candle
To sum up, here are some stats that may be of interest to my subscribers and visitors (and my very loyal spies!).
soula in Professional
, Who can help on January 26, 2013
Pudendal Neuralgia practitioners around the world.
I’m sure there are more practitioners and therapists helping with Chronic Pelvic Pain but these are the ones I have been in touch with or have been referred to from other specialists. Please let me know if you have been treated appropriately so I can keep my resource up-to-date. I do particularly want to hear personal recommendations.
Pelvic Chronic Pain,
The Women’s. Physiotherapy Department
499 Springvale Road, Glen Waverley, VIC, 3150
t (03) 9566 2733
Melbourne Pain Group
(Responsible for my peripheral stimulation device)
1300 773 247
Neurosurgeon, The Royal Melbourne Hospital, Western Hospital, and Northern Hospital
Thierry Vancaillie MD (Belgium), FRANZCOG, FFPMANZCA
Gynaecologist and Pain Medicine Specialist
Conjoint Professor, UNSW
Director, Women’s Health and Research Institute of Australia
From London UK & Corfu, Greece
“I’m now retired from the University of Westminster & semi-retired from private practice. I live in Corfu, Greece most of the year and make periodic visits to the UK to see a few patients, do a little teaching, & catch up on what’s happening in London’s art and theater [...]
soula in About
, My pain on December 31, 2012
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.
soula in Work & The System on December 28, 2012
Increasing employment opportunities for people with disability.
Minister Shorten seeks proposals on ways to boost employment participation for people with disability, discussion paper seeking public views on how best to achieve reform.
The discussion paper, Improving Employment Participation of People with Disability, seeks public views on how to best achieve reform, including:
• how to promote and improve equality for people with disability in employment and in the workplace
• how to support employers to identify and remove barriers to full and equal participation of people with disability
• how to promote the removal of all forms of discrimination on the basis of a persons’ disability
• how to improve workplace consultation between employers and employees on issues concerning people with disability in the workplace
• how to improve the productivity and competitiveness of Australian business through the advancement of people with disability in the workplace.
The Government would like to hear from all interested parties, including:
• people with disability, their families, carers and community representatives
• employers and employer representatives
• current Employment Service Providers
• state and local governments
• unions and other employee representative groups
soula in About
, My pain
, Personal resources
, Tips on November 28, 2012
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.