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Resources for Treating Chronic Pain by the Victoria Pain Specialists (Vicpain) …MY pain team!

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Forgive my bossiness but this post comes from a desperate experience that I lived for 4.5 years. That’s a long time for someone with increasing chronic pain levels and not much hope. I felt isolated and alone in a very foreign world without appropriate treatment, compassion and understanding.

Nine years later, I’m hopeful a situation like mine can be prevented with the knowledge provided in the following resources. Vicpain are leaders in pain treatment and management, I can certainly vouch for that!

Please read the resources, learn them, share them… and if you require information on chronic pain, follow Vicpain. (more…)

Retrainpain.org

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It’s finally filtering through my brain: It’s going to be VERY hard work most days and it’s up to me to keep my butt in gear and stay on the treatment and management trail.

You’ll all be getting sick of reading my badger about this, but the research is out. Patient experiences have been in the making (for decades now), and the biggest sign that the hard work is cut out for people with chronic pain comes from the many who are now drug dependent with either increasing levels of pain or who sadly have lost their lives – not from the medication – but from the battle.

I get sick of filtering through paragraphs and words and med talk that I don’t quite understand (not to mention the pain levels soar for some peculiar reason) and as an artist, I still find it really difficult to present my pain experience to my readers, family and friends in a simple form.

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SBS Insight: Ouch!

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Last night SBS’s Insight program aired Ouch! How much pain can you handle? 

I thought the program was great and provided a great broad definition about pain’s many forms and the varying ways it impacts people’s lives.

As usual, I was waiting for a lead. Waiting to hear that someone with chronic pain had found a way out of it and was cured. Mrs Gleeson, I could have bet you were going to say you were fine, after all, you looked it! And so did Lesley Brydon, Pain Australia‘s CEO… how could she be in any pain?

Tonight was the night I was going to hear about my cure.

It didn’t happen.

That made me want to write this post… I want to write to those that felt the slump and weight of the thought that remained with them at the end of the program that went something like this: I’m never going to get better.

It made me want to write, don’t believe it!

Well I don’t believe it, I don’t accept that my body will remain in this rut as long as I live and I believe this because I can see I’m getting better sloooooooowly. Answering the following questions allow me to come to that conclusion:

  • How am I compared to a year ago?
  • How is my activity compared to a year ago?
  • How does my treatment compare to a year ago?
  • How are my pain levels compared to a year ago?
  • What is my creativity like compared to a year ago?
  • What is my work ability like compared to a year ago?
  • How much help do I need compared to a year ago?

My answers;  I am better, more active, having much less treatment, my pain levels are lower, I am more creative, I have sustained my work ability and I need a little less help. There!

It’s not the best answer, a year is a long time but I believe the thinking ‘It is what it is‘ as stated by Mrs Gleeson, almost allows an acceptance, a kind of peace with pain. I experienced that and from there I personally used that calm to pace me back to life.

It’s working.

I believe in brain plasticity, I believe in healing, and I am very well aware our brains are uniquely wired. I’ve always thought, the harder the task, the more committment, sacrifice and discipline required, and chronic pain is definitely the greatest task of my life. I don’t feel there’s another choice for me but to listen to my self, pave my own unique pain management, take in information from programs such as these and their brilliant guest professionals, and just do my best.

I believe I can make my own conclusion to ‘Ouch’… Chronic pain will not be with me forever.

Robert J. Echenberg, MD

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Dr Echenberg http://www.instituteforwomeninpain.comI don’t think I need to write an introduction for Dr Echenberg or Bridge for Pelvic Pain. The only explanation I feel I need to give is that I was drawn (pardon the pun!) to Dr Echenberg’s fabulous ‘patient expressions‘ web page on his site: www.instituteforwomeninpain.com and had to send him an email.

I landed on The Echenberg Institute website after participating in the Pain Pathways facebook chat. From there I was also contacted by Carin Willis, the Founder and ED of Bridge for Pelvic Pain who also took the time to send me a very touching email expressing her appreciation for The Hurting Strings and requesting that we connect and stay in touch. Carin was also kind enough to send this review:

Soula’s video about her literal fall into chronic pelvic pain (pudendal neuralgia) is one of the most profound short-films about chronic pain and its affects on the patient and their families and care-givers I have seen to date.  I highly encourage anyone dealing with chronic pelvic pain to watch Soula’s video “The Hurting Strings” and to share Soula’s message of patient advocacy, having a good support system, and to focus on the possibility of hope that shimmers through very dark days.

Considering Dr Echenberg is the Founding Board Member of Bridge for Pelvic Pain and a member of the International Pelvic Pain Society and has “seen people from over 25 states in the US and from at least 5-6 other countries”, I’d say many are aware of his work and dedication in the area of chronic pain. Instead of writing more of Dr Echenberg’s achievements, I’d rather paste part of his wonderful, empathetic reply that arrived in my inbox. It gives me immense hope and reassurance for anyone with chronic pelvic pain, and provided me with great appreciation for my advocacy efforts.

I know you will be inspired to read more about Dr Echenberg’s work and feel the hope that I did when I received both his and Carin’s email.

…upon opening my messages just now your site, your book, your story… so much more light here in Pennsylvania even though it is almost midnight.

One of my main missions is to spread awareness and hope about the science and art of dealing with chronic pain and push hard for earlier diagnosis and integrative and effective therapeutic approaches in order to “prevent” the spiraling down of tens of millions of women and men just here alone in the US – the supposed bastion of medical technology.  The training of health care practitioners everywhere in lower genital tract pain is almost nil.  Several of my “projects” and involvements you can find at www.bridgeforpelvicpain.org  which is a new non-profit out of Colorado whose mission is to raise world-wide awareness as a grass-roots organization to engender hope and education at all levels – and another active project is at www.paindownthere.com where a few of us have produced a soon to be released 2 DVD set designed for young women to learn properly about their bodies and give up to date information about ‘connecting the dots”

Thanks again for finding our site and offering your inspiring work.

Sincerely,

Dr. Bob Echenberg
Member:  International Pelvic Pain Society
Co-Author: “Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships
www.instituteforwomeninpain.org

Dr Echenberg http://www.instituteforwomeninpain.comOffice phone:  610-868-0104
paindownthere.com/
www.facebook.com/Paindownthere
twitter.com/painfulsex
instagram.com/paindownthere

Bridge for Pelvic PainCarin E. Willis
Founder & Executive Director, Bridge for Pelvic Pain
Skype/Phone number: 719.445.7040
www.bridgeforpelvicpain.org
Facebook: Bridge for Pelvic Pain
Twitter: pelvicpainB4PP

Pudendal Neuralgia Association, Inc

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(excerpt from www.pudendalassociation.org)

Who We Are

The Pudendal Neuralgia Association, Inc. was established in 2013 as a non-profit organization in the state of Massachussetts. We provide educational services to pudendal neuralgia patients and their families as well as medical personnel in English and in Spanish.

Our wish is to help improve the quality of life of pudendal neuralgia sufferers.

Members of The Executive Board

Dahri I. McFaline, M.Ed.Executive Director, President
MaryBeth Scalice, Ed.D. Coordinator of Psychospiritual Services
Andrea M. Kaubris – Clerk
Rosalyn Feliciano, M.A. IDET – Instructional Designer
Raena Avalon – Consultant
Maureen N. Strong, CPA – Treasurer

Board of Directors:

Kara Moylan MacLean, M.Ed.
Richard P. Marvel, MD
Jose R. McFaline-Figueroa, MD PhD
Jyotsna Nagda, MD
Mickey Nilsen
David Podolsky, JD
Clinton Michael Radenbaugh

Our Goals

  • Establish and maintain a telephone hotline to provide support for pudendal neuralgia sufferers seeking emotional guidance.
  • Identify appropriate resources to assist affected patients and their families in coping with their chronic pain, daily activities, emotional stress and financial burdens
  • Locate medical resources available in the vicinity of the affected patients’ community and facilitate their access.
  • Provide counseling services.
  • Educate patients in new ways to regain their individual and financial independence so that they may once again feel they are contributing members of society.
  • Facilitate training programs for medical personnel in the latest pain management treatments and surgical procedures for pudendal neuralgia and pudendal entrapment patients.
  • Establish a capital campaign to create aHope Centerto accommodate patients and their families who travel long distances for medical treatment.
  • Maintain online information about the latest treatments and medical procedures.Pudendal Neuralgia Association, Inc

Theo, and his ‘carer’s’ perspective

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Team Soula and Theo

The post many of you have been waiting for… Theo’s thoughts, sacrifices and life experience of his daily ‘caring’. I should add that Theo and I have been together almost 20 years, seven of those consumed with Pudendal Neuralgia (PN).

What does PN mean to you?

To me PN is a yet to be accepted condition that sufferers are unable to express and be understood for. I do not claim that I understand it/the symptoms but I believe that it is real. I see my wife live with it every day (and night).

How has PN changed your life?

More so it has changed our (Soula’s and mine) lives. Personally however, I feel I have the lucky end of the stick for I am still able-bodied and there to help my wife. Our ‘arguments’ always revolved around who could do more for the other. I guess I have come up on top in that respect, however, having to see Soula in pain takes a lot out of me. Learning to adjust with things like, walking slower, no sudden tickling, no jumping playfully into bed or sitting through a long dinner has taken time. You adjust. It’s the look in Soula’s eyes though that can see me having to adjust that saddens me most. I can’t help but feel that she feels responsible for me having to change my life. I always say to her, “What would you have done…?”

You don’t like yourself being referred to as Soula’s ‘carer’, please explain why.

I care for Soula however, I never consider myself her carer. A carer to me is someone somewhat detached. Soula is my wife, my life! If she were to catch a cold and needed a few days off her feet whilst I made her soup and tea, I would take that as caring for her but not as being her carer. I think this may be a language issue but I wanted to clarify. (more…)

Reality posts on my Chronic Pelvic Pain Story Facebook page

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Recoup Off To The ParkI thought it might be a little more realistic to post ‘status’ reports as I battle on with PN. Most often I try to be positive and hopeful but the reality is PN is nothing but hardship, sacrifice and loads of pain.

Instead of bombard my website with these status reports I chose to write these on my Facebook page. It also makes it easier for me to provide support in the form of  ‘live’ communication. I can keep posts short and they can be posted from the phone more regularly. The website tends to have ‘major’ status updates, I felt I needed to comment about the day-to-day struggles.

To followers who aren’t aware of my FB page I’m posting today’s ‘Reality update: Shopping (if you can call it that)‘ so you can decide if you want to follow these ‘reality posts’. If my memory serves me correctly you won’t need an FB account to see what I post on this page. (more…)

Festive cheer or is it festive fear?

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Christmas WrappingI’ve come to another checkpoint, the end of the year always seems to call for a summary and with PN I won’t be summarising any grand bonuses, monumental achievements or any other events that suffice to the amount of days and hours that passed. In fact, the biggest blocks of time go on rest, treatment and wondering if this pain is actually ever going to end.

When I hear ‘festive cheer’ I can’t help but rhyme it with ‘Festive fear’, are you terrified at this time of year? Festivities call us to get out of the safe daily zone, step into marathon entertaining, baking, wrapping, socialising, a time to move away from our therapists and their treatments (Lord knows they need a break!) and jump! It’s impossible not to wonder, how will this end for my pelvis?

I know that sounds negative for someone that managed to finally get back into the studio, made Christmas wrapping (above), who contributed to her design company, who directed Art and Chronic Pain – A Self Portrait, and who wound up planning a documentary to create awareness for the very issue that holds her up day in day out, but, I’m slowly realising although I progress, PN is consuming my life more and more (and Theo’s!). PN has infested into my creativity, it’s become a monster outside my body as well. A monster now guiding me to forget my privacy, suck up the imposition and ego, and play a lead role in the name of PN awareness. How on earth did it come to this? And where on earth is it going? (You won’t believe what’s next!!) PN is truly fixated on me, in me, around me, it’s becoming the PN never-ending story. I can’t help but wonder at times, at what the point did this become my job? (more…)

Australian Pain Management Association (APMA)

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APMA LogoLiving with pain can be a miserable existence, but the Australian Pain Management Association (APMA) gives hope that with the right treatment and life skills, your pain will improve and you can enjoy life again. APMA is a non-profit organisation which supports the one in five Australians who live with persistent (chronic) pain. Their Pain Link helpline (1300 340 357) assists people all around Australia with information and options to help manage their pain.

APMA has launched a local pain-support group in Surrey Hills and they are inviting everyone in the community who lives with persistent pain to attend. The new pain-support group will base its program using  a new self-management strategy each month to teach people essential skills to manage their pain.

Meetings take place the 1st Monday of each month at the Holy Trinity Church located on 187 Union Road, Surrey Hills. APMA is a three minute walk from the train station and there is lots of parking right near the church.

There is also a facebook group if people need to chat.

Hayley and Marika are pain advocates and members of APMA and are available for communication on FB or you can call them directly:  Marika  0406450317 or Hayley 0457 172 090.

 

The Hurting Strings, my crowd funding campaign

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Campaign message

Now here’s something I didn’t see coming, my pain journey being transformed into an educational documentary about Pudendal Neuralgia (PN). And I have to warn you, there won’t be much smiling and hiding of pain if this happens.

One of those strange-but-true occurrences in life found me introduced to handmadefilms.com.au and I now have a unique opportunity to help with my PN message. The intended outcome is to have a documentary film made that will be free for practitioners, therapists and people in pain around the world, and for them to share for educational and therapeutic purposes.

Early diagnosis of PN is crucial for quality of life, in fact if I had been diagnosed sooner, I believe I would not have such a serious life long pain issue now. I want to change this bad life experience into something good… into Pelvic Pain education. I’m hoping you can help me raise some of the production costs.

Watch below and contribute via PayPal. Follow our progress by subscribing to The Hurting Strings feed.

Thank you.

The Hurting Strings, an artist’s story of pain from Soula Mantalvanos on Vimeo.

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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 aggrevated 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.

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