About Soula Mantalvanos

“I felt I had lost my independence, I could not communicate and express my personal experience and that no one understood me.” Soula combines her many years of chronic pain with her professional design experience to advocate about misdiagnosis and injured Victorian workers. Soula founded pudendalnerve.com.au and PainTrain My Health Summary to help raise the quality of care for those enduring and treating chronic pain.
February 25th, 2013 9:18 am

(Hardly) Happy 1st birthday pudendalnerve.com.au

By |2017-12-11T16:51:16+11:00February 25th, 2013|Categories: Blog, Living|Tags: , , |

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!).

January 17th, 2013 2:22 pm

Talk to me!

By |2017-12-11T09:17:00+11:00January 17th, 2013|Categories: contact|Tags: |

I don't encourage contact as it's difficult for me to manage the communication but If you feel you're going to burst if you don't tell me something, then please feel free to [...]

January 15th, 2013 4:27 pm

Vulvodynia. Yes, you read right… women get pain ‘down there’.

By |2017-12-11T09:42:19+11:00January 15th, 2013|Categories: Learn, Personal resources|Tags: , |

Pain in the pelvis can include pain 'down there' too... sometimes 'back there' as well! True! Just follow the path of the Pudendal Nerve and see where its extremities are... I have cyber met many women who suffer with this awful condition called, Vulvodynia. The Pudendal Nerve branches extend to the Vulva, and so the condition is certainly 'related' to the whole Pelvic Chronic Pain issue. I personally relate to the condition after having extremely high sensory signals (almost maddening like I had my own 'hoo-ha' stuck in a power point!!), up until an oversized pelvic ligament was found and resected. Thankfully that high sensory pain (and associated issues) ended for me there. Of course my Pudendal Nerve and I are still in a personal battle over its insistant pain tune. But... I'll leave my personal details there and concentrate on some much needed awareness for my pain sisters who are out there telling their story and providing a voice to those who can't bare to speak about this awful issue, Vulvodynia. Firstly, a wonderful and supportive cyber friend, Vanessa Watson who lives in Perth and helps run the Pelvic Pain Support group with Catherine Aurubind for HOPE (Health Organization for Pudendal Education). Vanessa's story was also recently published in The Sydney Morning Herald. You can also find us chatting on Facebook. Secondly, Esther runs her 'Mad Peach, living with chronic pain in the hoo-ha' blog, and might I add with a great sense of humour. Read her account and many other accounts from her followers at: madpeach.blogspot.com.au. And thirdly I'll add a recent story, Privacy around private parts hurts women's health, which went to air on the ABC'S 7:30 report last week. It is certainly difficult to speak of this very personal pain but the more documentation and the more we share our stories, the more courage we give to our sisters to speak up. Speaking up means we share our treatments and knowledge and bring pain relief and quality of life. Silence will take us nowhere. Please share this post and related links.

December 31st, 2012 3:36 pm

Do I dare put it in writing…?

By |2017-12-15T15:53:55+11:00December 31st, 2012|Categories: About, Blog, Living, The pain|Tags: , , |

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.

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