soula in Blog
, Print on October 7, 2014
It took nearly five years of chasing answers, of tests and interventions, frustration, grief, and constant, unbearable pain to reach a diagnosis. The fall caused nerve damage in the pelvic area, very real but invisible on MRIs, examinations, X-rays and CT scans.
“It is still a primitive time in pain. Being told for four and a half years ‘this is chronic pain … go home and live with it, there’s nothing that can be done’ is brutal not to mention primitive.”
Hallelujah! Pardon my pun here, especially as I’m preaching sexuality on a Sunday morning but finally, here is some thorough research and attention for the clitoris. Thank you Louise Smith for sending this link to me.. I think it’s essential info for everyone, not just women with PN. Thank you melodiousmsm for writing this and thank you to artist and sex educator, Betty Dodson for the fabulous artwork.
soula in About
, Online on May 18, 2014
Excerpt from Sullivan Physical Therapy‘s Sara Sauder. Read the full interview on her blogspot.
Soula Mantalvanos is an Australian artist living with pudendal neuralgia. She runs a website and a blog that chronicles her life since developing pelvic pain. These mediums are helping people around the world learn more about pudendal neuralgia (PN) and how [...]
soula in Blog
, Media on January 4, 2014
In Art and Chronic Pain – A Self Portrait, artist Soula Mantalvanos shares her experience with chronic pain, which has been a debilitating presence in her life for almost seven years. Soula suffers from Pudendal Neuralgia, a painful nerve condition that developed following an accident where a fit ball that she was sitting on burst, causing her to drop violently to the concrete floor beneath.
Early on in the book Soula describes that split-second, and the devastating effects that followed. A highly active yoga-loving woman before the accident, throughout the book Soula gives a deeply personal account of the psychological, emotional and physical impacts of living with chronic pain for so many years. These negative effects were compounded by the fact that her condition Pudendal Neuralgia baffled her doctors, and took four and a half years to even diagnose.
soula in About
, Read on October 30, 2013
Yes, I’ve found another medium to express my pain and you can own your own copy of it!
I didn’t see the point of creating a long description of my living with pain, sharing my tips, turning journal entries into a pain story. I am, first and foremost, before the pain life, an artist… so my book had to contain many pictures and few words, just 32 pages in fact, but I believe it’s a complete story. It doesn’t hold the solution for PN but it’ll allow you to explain it to someone else, leave it on the coffee table, and it will be light enough to carry around. Above all I created it to express my experience so far and so that it is a bit of a companion to another PN family member. The idea was for the reader to feel empathy in a world where no one seems to understand, and to ease the pain as you look through it.
soula in Professional
, Who can help on October 28, 2013
This is a brilliant website! Have you ever been in so much pain you found it too hard to speak? Dumb question, of course you have, you’re on a PN website. Well the mypainfeelslike.com website includes a pain questionnaire where you can either select from relevant various answers people have entered about their pain or [...]
soula in Blog
, Professional Resources on October 2, 2013
Here is my attempt to gather all references I’ve come across or refer to on my website for Chronic Pelvic Pain. Clearly nowhere near all the references that exist but at least one ‘library’ location with a bundle of great material (and one organised website!). If you’ve come across a resource that you think should be included, please contact me and if you are an author and have an update or other information to provide, I’d love to hear from you.
I know how frustrating it is to have to sift through pages and pages of the internet, thought this might be of help to pain sufferers who simply don’t have the up time.
And a huge thanks to everyone who replied and supplied me updated material. Obviously I plan for this page to grow and somehow I will keep it in some kind of legible order. Currently in alpha order by author and title of their publications, perhaps as it grows, we can list by subject.
soula in Learn
, Professional Resources on September 3, 2013
I’ve made some great friends in cyber space throughout this PN pain journey (and developed quite a library along the way!). One friend I consider a favorite is John Quintner. He’s one of my most reliable sources when I need an honest opinion. We bump into each other over two main mutual ‘interests': the (primitive) WorkCover assessment methods, and pain definitions. John doesn’t just know what he’s talking about, he’s upfront, honest and calls it how he sees it. And when someone has these credentials, I’m all ears, not to mention I become much wiser!
the PELVIC PAIN report “Pelvic pain, while common, is often a hidden burden to the lives of many women. With emerging national and international knowledge about pain and the heavy toll it poses on individuals and society, it is timely that this report ‘The $6 Billion Woman and the $600 Million Girl’ raises pelvic pain [...]
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!).