Looking for Something?
Posts Tagged for

advocacy

Dr Susie Gronski: How One Artist Used Her Hurting Strings To Stitch Back Her Life

Author:

I can’t recommend Dr Susie highly enough. I wish I had online physical therapy advice when I felt lost, unable to commute and in need of someone who could understand my pain experience.

Dr Susie really gets pelvic health issues and especially for males – oh hoorah, finally someone to help the boys!

Don’t hesitate to organise an online skype session, Dr Susie has a load of support and experience on offer.

(Post written by Dr. Susie Gronski, DPT, PRPC. Doctor of Physical Therapy. Expert pelvic health advice without the jargon)

Soula Mantalvanos has been dealing with pelvic pain for over nine years. She’s an aspiring creative living in Australia. An artist who battles Pudendal Neuralgia through her words & artwork. Soula’s a die hard advocate for persistent pelvic pain sufferers.

She’s also the author of our newest blog post – How One Artist Used Her Hurting Strings To Stitch Back Her Life.

Save

ADF campaign: Losing Yourself in Pain Medication

Author:

The Alcohol & Drug Foundation (ADF) has been working to enhance awareness about the way Australians consume pain killers.

My understanding of the campaign is that the ADF in no way suggests pain killers are not necessary – many Australians require their medication to manage their health issues – but patients should investigate other options and be informed about the effects of taking these medications long-term. They should not be recommended as a first resort.

Within a few months of taking chronic pain medications, I realised it was not a long term plan for me and was thank full to be able to find other forms of treatment that could help me survive chronic pain day-to-day.

I’m part of Bridge For Pelvic Pain’s Advisory Committee

Author:

Bridge for Pelvic PainAnd I’m most honoured! To be recognised for my pelvic pain advocacy is one very exciting aspect, but to be invited to be part of a committee with a global vision, is quite an additional excitement. It appears my pain experience will definitely make a difference to others.

About Bridge For Pelvic Pain

Mission: Our mission is to connect the global community of chronic pelvic and sexual pain patients to resources, education and hope through an integrative approach. Vision: To bring hope, resources and knowledge to the pelvic and sexual pain community worldwide. Continue Reading

Soula Mantavanos…Inside her home and her passion to help others!

Author:

ShowAndTellHeader
Show and Tell online interviewed me about art and my advocacy for chronic pain and injured workers… thanks guys!

Let us introduce you to Soula Mantavanos…an inspiring artist with a passion for helping others deal with chronic pain. Today we are trying to help her spread the word as far as we can reach to help all those in need…but also, she is an incredible artist with an incredible home…so we thought you might not only like to hear from her but see where she spends most of her time. These pics were photographed by the wonderful Sean Fennessy and produced by Lucy Feagins of The Design Files.

Soula has been forced do deal with crippling pain since her fitball burst and caused her to fall on a concrete floor. She is now dealing with chronic pelvic pain which is more specifically known as Pudendal Neuralgia (PN).  Soula is now advocating and working tirelessly to help others through her website.

We sat down with Soula to hear all about it, check out the links she has provided and share where you can! Ohhhh and enjoy her gorgeous home!!

Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain?

 

“I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37.
Continue Reading

Social Media for Pain Education, Pain Australia

Author:
Pain Australia Logo

Social Media for Pain Education by Linda Baraciolli. Published on Painaustralia enewsletter, August 23, 2013

Pain Australia Logo

Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website Pudendal Nerve.

Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.

Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online

“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”

After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.

He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.

“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.” Continue Reading

The Design Files

Author:

Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So I’ll clarify now, this post is a very positive one. It’s about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn’t have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. Continue Reading

My_Space, My facade, living with Pudendal Neuralgia

Author:

Sunday Style My SpaceWe don’t usually love media, but a little attention after some lengthy hibernation from work was bound to be very valuable for our (Theo’s and my) 12 or so year old business, Origin of Image. The lovely Sunday Style (Herald Sun) offered an interview in their ‘My_Space’ feature… hmmm, quite funny for us as there’s nothing ‘my’ about ‘our’ life. We share work, living, we even share Pudendal Neuralgia (PN). Continue Reading

Pelvic Pain Support Network

Author:

 Pelvic Pain Support Network Banner

My Pudendal Neuralgia family continues to grow… I’ve just met this wonderful charity group all for raising awareness and, most importantly, existing to represent sufferers with pelvic pain. They are based in the UK but their efforts and voices span the world. So lovely to be associated with you guys! Thank you for the advocacy pelvic pain sufferers so need. Can you also talk to our Governments so that injured workers have their injuries recognised? Continue Reading

Subscribe to my newsletter

Subscribe to my blog posts

Enter your email address to subscribe to new posts by email.

Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

Pain Train my online health record. New SPECIAL price $14.95 per year

Save

Save

Save

Save

Save

Order my book $31 (inc. postage)

Archives