The kindness of the pain world just keeps on delivering… The time and effort specialists take to email and share their resources and offer advice for pelvic pain / Pundendal Neuralgia (PN) is astounding and something that moves me so much. Having the website setup to be able to pass the information on is the ultimate. The chronic pain world is hellish, but like many of life’s screaming contrasts, for all the hellish qualities of pain comes a community that offers warmth, understanding, support, sacrifice, and the utmost kindness.
I can go on but my point is, I’ve found another brilliant pain centre and I want to share it. Quickly. Are you in the Netherlands? I believe you’re a phone call away from changing your pain situation (and participating in a ping pong game after your appointment!).
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 [...]
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!).
HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.
HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment [...]
soula in About
, Pudendal Neuralgia on February 6, 2013
Finally some accurate coverage and attention. WorkSafe, I hope you were listening, ignore Chronic Pelvic Pain no more!
Honestly, I cried listening to this on Wednesday. Nothing like empathy and understanding after years of pain and hunting for diagnosis and proper treatment. So for anyone who’s (understandably) thought ‘is so-and-so really in pain? I just [...]
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 system
, Work & The System on August 28, 2012
I’m forever searching for a decent explanation as to why the AMA Guidelines used to assess injured workers in the WorkCover system are so poor and out of date, especially when it comes to assessing chronic pain (and in my case of pudendal neuralgia measures a total score of 0!!).
Along my social media travels, searching for answers and researching for treatment or updated information regarding my condition, I have met John and had the pleasure of some great discussions. Dr John Quintner is a consultant physician in rheumatology and pain medicine and has kindly offered to share his published opinion on the matter. Thanks John!
Personal injury compensation: lessons from Talmudic law, by John Quintner
…This article examines some of the principles upon which our personal injury compensation systems are based, in order to better understand why the process of tort litigation has itself become such a major factor in healthcare in modern societies…
soula in Learn
, Professional Resources on August 24, 2012
The study and treatment of persistent pelvic pain is a growing area needing robust discussion and critical thinking. The pelvis isn’t weird and mysterious. It is merely complex, with multiple social implications and psychological/biological complications. A good portion of the fine research on CRPS and CLBP may be just the thing we need to help these patients.
soula in Learn
, Professional Resources on August 22, 2012
A brilliant lesson on nerves and how they work. I found this through the wonderful body in mind website. Read the forum going or head over to TedED to find more brilliant lessons.
Thank you to these forward thinking brilliant people. And to the creatives that put the presentations together.
By Educator, Elliot Krane and Animator, Franz Palomares
“At any moment, there is an electrical storm coursing through your body. Discover how chemical reactions create an electric current that drives our responses to everything from hot pans to a mother’s caress.”
soula in About
, My pain
, Who can help on July 17, 2012
Chronic Pain Info is a Facebook group/page. A place to come and learn, share, vent and meet other likeminded individuals who share similar health conditions and concerns.
Rachata Brown wrote:
How to understand us… people who are dealing with the pain.
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.