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Pelvic Pain Support Network

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 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

Males with Pudendal Neuralgia in Australia

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I’ve been contacted by a few males who feel their symptoms are similar to the ones I share on my website. There is help for males with Pudendal Neuralgia in Australia:

Sydney

Thanks to Beth Shelly, DPT WCS, for the following info from a LinkedIn pain group):

  • Sherin Jarvis, a physiotherapist who works at the Women’s Health Institute of Australia, which is multi-disciplinary and (I think) the only dedicated pudendal neuralgia/PNE clinic on the east coast of Australia, where they do diagnostic procedures and injections, etc.  
Taryn Hallam is another excellent pelvic floor physio involved in teaching pelvic floor pain, who is in Sydney and treats pudendal neuralgia; she is also in a multidisciplinary clinic called Alana Health Care. www.alanahealthcare.com.au. Hope this helps.

And to confirm the above, a response to my query from the great Thierry G. Vancaillie MD (Belgium), Gynaecologist and Pain Medicine Specialist:

  • I do see men with pudendal neuralgia and so do the other practitioners at WHRIA (physio, osteo and acupuncture). Our offices are located at 97-99 Bathurst street, Sydney (next to Town Hall), the phone number is 1300 722 206

Melbourne

  • Royal Melbourne Hospital Urology Department. Cab be assessed by a Urologist first or referred by a GP to Anne Florence Plante.
  • Dr Peter Courtney. Melbourne Pain Group.  (03) 9566 2733. Currently Dr Courtney is in full time Pain practice with both public components and private components with the Melbourne Pain Group. Dr Courtney’s current interests include use of advanced interventional techniques in the treatment of neuropathic pain conditions and visceral pain, treatment of mechanical back pain, and the use of ketamine as an adjunct to assessment of patients as well as its use in opioid reduction.

Brisbane

Peter Dornan Physiotherapy
13 Morley Street, 4066 Toowong QLD, Australia
Phone (07) 3371 9155 Fax (07) 3871 0301 Email: peter@peterdornanphysio.com.au
www.peterdornanphysio.com.au/pudendal.html

 

 

(Diagram from the Tipna.org)

Chronic Pain Info group on Facebook

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Chronic Pain Info facebook page

Chronic Pain Info is a Facebook group/page. A place to come and learn, share, vent and meet other likeminded individuals who share similar health conditions and concerns.

This is a post from one member (Rachata Brown) from the “recent posts from others” area of the site…

How to understand us… people who are dealing with the pain.
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation. Continue Reading

The Pudendal Neuralgia Masters

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This post has been updated, please visit Pudendal Neuralgia treaters around the world or continue to read this and all the lovely comments from the amazing Pudendal Neuralgia family.

International Pudendal Neuralgia specialist locations

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. Continue Reading

ABC 1 Catalyst: The Trouble with Sex

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Yay for some recognition and acknowledgment!!

Read/see the full program

Excerpt from the program below:

NARRATION
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.

NARRATION
Dr Vancaillie is experimenting with a more permanent solution to this problem. He will use a neuro-stimulator, which is surgically implanted into the base of a patient’s spine. If he can abate the pain, it’s likely he will also abate the arousal. Continue Reading

HowToCopeWithPain.org

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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 (and some excellent resources).

I had one of these info-journeys last weekend. It began by reading Imagine: The Science of Creativity in The Saturday’s Age (Melbourne 7th April) by Jonah Lehrerare, and coming across this quote: Sleeping is the height of genius by Kierkegaard. 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 Continue Reading

Chronic Pain Australia

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We are dedicated to reducing the social and other barriers to living with chronic pain.We are a group of people who are tired of the way things are for people in pain. You may be feeling quite isolated and ‘over it’ and feel that no one really understands your experience. You might even feel that people don’t believe you. Many people tell us about these experiences. Don’t despair, you aren’t crazy! And you aren’t on your own either. Over the years many volunteers have strengthened us so that we can work towards greater community understanding about chronic pain…

Our Mission
To reduce the unnecessary suffering and isolation caused by chronic pain in the Australian community..

Our Vision
No Australian living with persistent pain should suffer alone or without access to resources and information which help them effectively manage their pain in a manner promoting dignity and self respect, regardless of age, gender, culture, belief, socio-economic or compensation status.

Our Core Objectives
Chronic Pain Australia’s key aims are to:

  • Improve knowledge and understanding about chronic pain across Australia
  • Promote better understanding amongst health professionals about what it is like to live with chronic pain; and
  • Work towards supported self-management of pain.

Read more on the Chronic Pain Australia website

Resources I have found

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File downloads and links
Physiotherapy management of pelvic pain and sexual dysfunction: Clinical Application. Pdf 3.2mb
Anal Pain Caused by Entrapment of Nervus Pudendu, Ahmed Shafik. Pdf 150kb
Transperineal Pudendal Nerve Decompression, Jacques Beco M.D. Pdf 180kb
How can we win the war against pudendal neuropathy? Jacques Beco M.D. Pdf 1mb
Complex Pelvic Pain Syndromes, Charles W. Butrick, M,D. Pdf. 1.5mb
Pudendal neuralgia, a severe pain syndrome, Benson JT, Griffis K. PubMed.gov link to extract
Chronic Pelvic Pain, Dharmesh Kapoor. Medscape link
Management of Chronic Pelvic Pain, James E. Carter. Obgyn.net link
New Method for the Treatment of Pudendal Neuralgia, E. Bautrant, E. de Bisschop, V. Vaini-Elies, J. Massonnat, Aleman, J. Buntinx, J. de Vlieger, M. Di Constanzo, L. Habib, G. Patroni, S. Siboni, B. Ceas, V.,Schiby, M. Uglione-Ceas. Pdf 330kb
The urogenital and rectal pain syndromes, Ursula Wesselmann. Elsevier link to extract

Website links
The International Pudendal Neuropathy Association website link
Jacques Beco M.D. website link
Stanley J. Antolak, Jr. M.D.  Center for Urologic and Pelvic Pain (CUPP) website link
The Pudendal Nerve website link (this is a huge resource)
International Continence Society and International urogynecological Association meeting Toronto (Aug 2010) webcast
Women’s Health & Research Institute of Australia website link
Medifocus, Peripheral Neuropathy page link
Pelvic pain help website link
Health Organization for Pudendal Education (HOPE) website link
The Pacific Center for Pelvic Pain and Dysfunction, Jerome M. Weiss. website link

Video links
Transperineal Pudendal Nerve Decompression You Tube video link (if you can tolerate it!)
Pudendal Neuralgia, Dr Eric Bautrant (part 1), You Tube video sound file link
Pudendal Nerve Entrapment 3d demonstrational You Tube video link
Interview Prof. Thierry Vancaillie Assoc. Prof. of Gynaecology. NSW You Tube video link (Part1)
Prof. Thierry Vancaillie Assoc. Prof. of Gynaecology. NSW You Tube video link

Chronic Pelvic Pain Clinic at the Women’s

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The following information comes from the Women’s Chronic Pelvic Pain Clinic webpage. This page also provides a fact sheet available for download as a printable PDF.

The clinic offers an alternative approach for women who have tried other treatment options but still have a high level of pain. The staff in the clinic come from a range of health professions. Together we will work with you to explore the range of possible causes for your pain and to offer ways to treat or to help you manage your pain.

There is good evidence to suggest that this approach to chronic pain is beneficial.

Our aim is to work with you to increase your quality of life.

What is chronic pelvic pain?

Chronic pelvic pain is pain that you have had in your pelvis for more than six months. The pain may be there all the time or it might come and go. There are many possible causes for chronic pelvic pain, but sometimes the cause may never be found.

When a cause cannot be found for your pain, treatment is aimed at helping you to manage it so as to improve your quality of life.

What do we do?

Pain can be influenced by physical, social and psychological factors. Our team is trained to look at the things in your life that may be adding to your experience of pain.

Because every woman’s history or experience of pain is different, we begin by doing a very thorough assessment of your pain. After a full assessment by all the health practitioners, we will meet to decide a treatment plan for you.

Some women may also benefit from a group program which runs for two hours, each week, for 12 weeks. The program aims to reduce pain and more importantly improve function.

Read more…

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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…

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