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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.
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July 21st, 2021 8:54 pm

I Found My Pain Definition in Lockdown

By |2021-07-22T13:45:53+10:00July 21st, 2021|Categories: The pain|Tags: , |

Lockdown time appears to be crucial for pacing back to whole life. Every lockdown has given me a leap of some kind. I genuinely think lockdown together with my spinal cord stimulation has armed me like never before in this 14-year journey. There are moments I'm so comfortable. Of course, it's seconds and minutes, but it's soooooo freeeeeeeing. I 'just' walk over to get something – nothing is restricting me. No fog, no warning signal; it's just me moving in the space. So I can totally focus on what's in front of me, I can hear the quiet, notice the dust and envisage all the things I plan to do.. to the end! It's an uninterrupted dreamy sequence! If memory serves me correctly, this is a typical experience and a sequence that should be totally taken for granted instead of awed. I haven't experienced this before lockdown. EVER. CHECKPOINT: 14 years, 4 months and 21 days (or 5257 or 172 months, 21 days), I have experienced a short uninterrupted sequence of normality.

June 4th, 2021 11:34 am

Dear Victorian State Minister, Daniel Andrews MP

By |2023-01-24T16:13:28+11:00June 4th, 2021|Categories: Workcover|Tags: , , , |

Dear Daniel Andrews MP, It's wonderful to see that your recovery is going well.  As a 52-year-old person, I like to think that I live and learn from life experiences. I imagine someone in your position would take that sort of approach also and that with your own living and learning and the experience of Victorians you gather realistic references for your ongoing decision making. Taking this terrible recent accident you have had into account (whether a work injury or not), a horrific pandemic and two reports by the Victorian Ombudsman, I have hope and the expectation that you might be in a position to relate far more to Victorian injured workers (of which I am one) than ever before. Being more specific, can you please consider how you would feel: – being questioned about your injury – being told by an insurance company that the reports about your health from your own medical team do not suffice – having investigators photograph you around your home and day-to-day – being sent to an 'independent medical panel to be reassessed and to prove your injury

June 1st, 2021 9:23 am

A (fantabulous) Chat with (the fantabulous) Joletta Belton

By |2023-11-07T11:05:18+11:00June 1st, 2021|Categories: Advocacy, Learn, Online, Personal resources|Tags: , , , |

How I love mycuppajo – the wonderfully beaming human officially known as Joletta Belton. I was introduced to Joletta's blog by a mutual friend, Dr John Quintner (pain educator for Arthritis & Osteoporosis WA and retired pain physician). Jo's experience (science and creativity) makes her documentation about the complex lived experience real, interesting and easy to understand. It's so easy to relate to Jo. Jo and I also share the added frustrating experience of being an 'injured worker' and having to 'defend' our injuries to unjust workers' compensation systems. Her advocacy and achievements are extraordinary – she is a force driving change throughout the world of chronic pain. I'm so happy to be able to chat with Jo and deliver this video to you all. I know it will be inspiring, energising and informing. I also know that much of the way through you will have beaming smiles on your faces. It's just impossible to speak with Jo and not smile! In this video, Joletta and chat about: 1:04 Checkpoint – the meaning of (Jo's) life 3:53 Being the new 'you' 5:13 Purpose: the lived experience 7:55 The power of words 11:00 When there are no words 13:25 Patients & Practitioners 17:05 Science speak 21:13 Pain in realistic terms 26:15 Angry with yourself 28:50 Forced to defend 33:43 Livelihood loss 35:41 mycuppajo.com and beyond 43:33 COVID impact 48:02 Changing system-centered care 51:55 Gratitude

March 23rd, 2021 1:13 pm

On Neurostimulation

By |2023-02-17T10:32:00+11:00March 23rd, 2021|Categories: About, My treatment|Tags: , , , , , |

Neurostimulation has been key in my management of pain. It's also satisfied my wish to find a way to be as self-sufficient with my management as I possibly can be. My first stim was a peripheral stimulation unit (leads under the skin) and that was implanted in 2011. I still have this unit as a backup. In 2015 I had a sacral stim implanted but that fizzed (in my opinion) within three years. So in 2019 I had the sacral stim removed and replaced with a spinal cord neurostim. WARNING: In the video, I talk about my experience and have a few Xrays pop up to demonstrate a little detail. If you're the squeamish type you may not want to see the images – they are small, however. Read key blogs about my stim implants experiences and adventures:

Pain management is unique to all of us and the key to navigating the complex journey (I believe) is gathering as much information as possible. I hope this vimeo is of great help.

My Health Story now in your app store

MHS tablet

Pelvic Sense

GET STARTED (use ‘HELLOPS’ to get a Soula discount).

Soula Mantalvanos created pudendalnerve.com.au to advocate for people living with Pudendal Neuralgia and other invisible and chronic illnesses. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. The website includes topics about chronic pain, pelvic pain, pudendal neuralgia, injured workers, workers compensation, inflammation, chronic illness, patient empowerment, self efficacy, better healthcare, nerve pain, various treatments such as nerve blocks, neurostimulation implants and the courage that is required for self management. All information on this website is a account of Soula's lived experience and should not be taken in anyway as advice or recommended treatment for any other person or healthcare professional. Chronic illness is a unique experience and therefore requires better understanding and tailored care. © Copyright 2023 -    |   pudendalnerve.com.au created by ooi   |
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