Hello! Welcome to my website, pudendalnerve.com.au
I hope you’re not in ongoing pain but if you are, this website was created to provide resources to people who are experiencing chronic pain and/or trying to manage it.
My Advocacy & Helpful Resources
My Story
My name is Soula, and I literally fell into the land of pelvic chronic pain – specifically Pudendal Neuralgia (PN), on March 1, 2007 when a fitball I was sitting on burst and I fell to a concrete floor. At the time, I was working at ooi, my art & design studio that I run with my husband Theo.
Since 2007, I’ve learned alot about chronic pain – especially that you can manage it. I want people to learn from my experience because I believe my ongoing chronic pain could have been avoided. I was undiagnosed for 4.5 years and that was THE biggest trigger to my chronic pain experience.
You’ll need to learn alot about yourself and make some serious changes to your life (hopefully temporary and minimal) in order to be the best possible version of the new you.
I am an artist and now I also consider myself an advocate for people with chronic pain and Australian injured workers.
It’s been an overwhelming emotional journey since 2007. As well as the endless hunt for treatment that might lead to recovery, I have:
Life Blogs
Four Corners… More like One.
I’m so disappointed in Adele Ferguson and Chris Gillett. I can’t believe this is an ABC story. Firstly, I do want to express my sadness for the people in the story whose lives were taken, destroyed and affected. Apparent to me from my life experience (sorry, only real life data available!) and [...]
Aussies Turn To Online Advice To Try And Get Off Their Antidepressant Medication
I really can’t believe this story. Stories like this one leave me feeling healthcare is still so miserably failing people. Our voices are not being heard. I began this website in 2011 because the lived experience of Pudendal Neuralgia and the management and treatment of chronic pain for individuals by healthcare professionals [...]
The 17th Anniversary Post
In 2013, when I began making progress with pain management, I had the idea to make a marionette of myself. Theo and I had just travelled to Italy (masks and Pinocchios everywhere!), and returning on the plane I watched the film, Marilyn. It dawned on me how seriously invisible many illnesses are. As much as I would have loved to make the marionette myself, at the time, any self-portraits I was drawing or painting were horrifying. They were brutal, disturbing, and sad to the point where I had to ask Theo to wrap them up one day – I couldn't look at them anymore.
Are you there yet?
Are you ready to punch the next healthcare professional you see who asks, 'Tell me your story'? Are you sick of asking for your health information, searching for it, collating it, or sending bits and pieces of yourself all over the place?
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Hi there, wow so there are more people out there with the same issue as me. Very comforting to know. I have Neuromas caused from cutting away of extremely bad adhesions during a hysterectomy. I have been suffering for two years now, with no end in sight. I take a ridiculous amount of drugs & am addicted to the Endone. I’m off to a pain clinic next week, who knows they may help, but it’s unlikely. I can’t wait to follow your story. Good on you for trying to get help for others. Cheers Annette
Hi Annette, I’m sad you had to find this site. Yes, there are many of us but I’m adamant to find a way out and so far I’m making great progress despite a 4.5 year misdiagnosis hold up. Good luck at your appointment, stay hopeful. xx
So glad to have found you Soula…first on the PN Support Facebook page and then at your website and then on Twitter! I am a fellow PN warrior….have been in pain since 2008…live in Connecticut USA…looking forward to connecting with you all…God bless you for all the work you’ve done to help us all : )
So glad you found me too Kathleen! What a beautiful message although sad to hear you’re also battling this issue. We are warriors INDEED. xxx
Hello, I’m sorry you are in chronic pain that is no way to live. I wanted to let you know about Scenar Therapy and to tell you it works but don’t take it from me do your self a favor and find a Scenar Therapist today and experience Scenar for your self. I have been using Scenar in my clinic for 11 weeks now and my clients love Scenar, I have overwhelming results with Scenar, I have been out of pain for 11 weeks after I had Scenar used on my sponderlitious in my back. So please look into it I can’t tell enough people about Scenar. Please email me for more information robsmassagegingin@gmail.com
Reg Robyn
What about men?
Even less help for men. Here’s my post for men and what I’ve found for Australian’s with PN: http://wp.me/p20brX-qV
i am so sorry, I have pudendal neuralgia from a gynecology surgery, deep LEEP (LLETZ) conization. Thank you for creating this website.
I am so sorry too Iris. Always terrible to hear someone else has this awful condition. It’s difficult to say ‘a pleasure’ when in regard to pain but your thanks is very heartfelt and I hope it has been of some support to you. Take care of yourself.
Arlene Jones
YES to all your questions. Thank God others understand or I would go crazy!
Ariene there are a few great networks on Facebook if you need more support (or are you on there already?).
IRIS, PLEASE ANSWER ME, i need help…which are your symptoms???? pleas
I feel that I may have the same problem with a few different issues. Mine seems to stem from a vaginal hysterectomy 7 years ago,now the symptoms have ramped up and I feel like there is something stuck in the rectum all the time and a very sore coccyx. This condition is changing who I am and causing me to find no pleasure in life at all with no motivation to do anything but try and get comfortable. Are you still getting treatments? I live in the country, my closest major ity is Melbourne, so am hoping to come down after going to the dr AGAiN.. Thank you
Bec
Hi Bec, I’m sad to read your comment. This pain certainly does change who we are. Are you able to book in to The Womens Hospital Pelvic Pain Department? Ask for an appointment with Anne-Florence, you’ll need a referral from your GP and to book way in advance. Also, if you feel like joining a great forum, head to pudendalhope.org. You will find much empathy and understanding there. Good luck, stay positive, this is treatable and you will recognise yourself again… I have!