soula in About
, My pain
, Personal resources
, Tips on July 9, 2012
…So with my returned senses came dreams, with senses and dreams came diagnosis, with diagnosis came, finally, appropriate treatment, and with the right treatment came great pain relief and some much deserved and needed increased capacity. I feel I’ve arrived on a very high mountain but had to crawl all the way up over 5 1/2 years.
So, here we are on the mountain, I mean, in Italy, and boy did we pick the right place! Not only did we have a divine holiday but we stumbled on what feels like a miracle treatment for my form of PN and that was part of the Italian lifestyle: bidets and siestas…
soula in About
, Personal resources on July 4, 2012
As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly….
I began to really struggle 12 weeks after the first block and even during that time I had a few flare ups. I wondered if my implant perhaps had interfered with my nerve block as it’s known to cause pain if you keep it on whilst the pain is at a low-level (yes, try to figure that one out!!) By the time I realised my nerve block was well and truly wearing off I was at the 14 week mark, and having been very excited with what relief I had, Theo and I booked a holiday to Italy. Thankfully the brilliant Dr Courtney was able to fit me in for another nerve block at the 19 week mark which was exactly two weeks before travel time. Why am I mentioning the holiday? Because I believe a nerve block needs support, it needed me to get out of the pain routine and team it up with as much distraction as possible…
I felt my brain would freshen up, have a new shot at life and not have to face my day bed, aids, daily pain routine etc etc. I set off to live a dream in hope distraction would bring a positive change and another step forward…
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!
soula in About
, My pain
, Who can help on April 20, 2012
I can’t adequately define the moment I was diagnosed, it’s just too difficult to explain the 4.5 year scattered hunt that ended with a few seconds and just two words!
Empathy and understanding however, are two words that do explain what I felt when seeking approval to use the research and names of the Pudendal Neuralgia Masters (as I like to call these specialists). Honestly, if words, thoughts and care from complete strangers could heal me I would have been healed twice over by now. These Masters really touched my heart (unfortunately not my stubborn pudendal nerve, but all in good time!).
I wanted to share these comments, especially for anyone suffering with Pudendal Neuralgia as I feel its important that we all know who these incredible human beings are and that they are endlessly working towards our cure and international awareness every day. The other important thing is to know where they are.
ABC 1 Catalyst: The Trouble with Sex
Yay for some recognition and acknowledgment!!
Injury to this nerve can happen during childbirth or with lower back injury, or strenuous exercise. Australian based expert on the pudendal nerve is gynaecologist, Dr Thierry Vancaillie.
Dr Thierry Vancaillie
When they come to see us, they will talk about bowel dysfunction and bladder dysfunction. Maybe talk about pain within the course, but arousal problems, well, they’ll leave that for last, if they’ll talk about it.
…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…
soula in About
, My pain on March 21, 2012
I have nothing nice to say about a flare up. It’s nothing but my injury’s hissy fit and a brutal check point that tells me I’m not my old self yet. But since I like to keep a positive outlook and focus on the good things, I will say that coming out of a flare up feels incredible. I feel I could fly, my brain gears up again…
soula in Funnies
, Personal resources on March 17, 2012
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).
soula in About
, My pain on January 31, 2012
Hello, my name is Soula Mantalvanos and I am a 42 year old Australian (parents from Cyprus) living in Victoria. Thank you for entering my site, I hope my experience can be of great help to you or anyone you may know suffering from chronic pelvic pain, particularly related to Pudendal Neuralgia caused by injury or trauma. My intention for this website is to raise awareness for Pudendal Neuralgia so that it is addressed and treated appropriately, and disperse current descriptions of ‘myth’, ‘syndrome’ and ‘psychological condition’…. Readers will also find me writing extensively about my frustrations, disappointment and the unnecessary and unhelpful obstacles I’ve had to endure as a ‘long term’ injured worker of the Work Cover system.
soula in Learn
, Professional Resources on January 28, 2012
This is truly a brilliant interactive resource that allows the user to view specific muscle groups within the pelvis and locate the larger nerves in the pelvis, including the pudendal nerve. Almost like building a 3d version at your own pace (yes, you can unbuild it!). Be sure to scroll the smiley face up and down the right side bar.