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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…

Jacques Beco M.D

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Anyone in Belgium? Going to Belgium?

Dr. Jacques Beco is a perineologist that is located in Verviers, Belgium. Dr. Beco specialises in the diagnosis and treatment of pudendal neuropathies (pain, urinary and incontinence).

Google his name, many sites come up and you will also spot an email address. The links below provide lists of his publications.

This is a Jacques Beco publications link with pdf download option.

The Society for Pudendal Neuralgia offers, Jacques Beco publications.


This video presents the differents steps of a transperineal pudendal nerve decompression realized with the help of a resectoscope under saline irrigation. You will see how the nerve can be stretched at the exit of the Alcock’s canal during defecation or compressed on the sacro-spinal ligament while sitting. You will understand how the different entrapment levels are treated step by step by this mini-invasive method.
This video has been realized during a workshop organized by ICS-IUGA in Toronto August 2010. Read more…

Women’s Health and Research Institute of Australia (WHRIA)

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The following information is from the Women’s Health and Research Institute of Australia (WHRIA) website:

From Discovery, And Research Innovation To Reality

Pudendal Neuralgia: Pelvic & Perineal Pain

Associated with the Pelvic Nerve

Your symptoms & history indicate that the nerve in the pelvis, the pudendal nerve, may be responsible for all or some of your pain and other symptoms. The pudendal nerve runs from the lower back, then passes between 2 ligaments, then runs along the top of the pelvic floor muscles, then through to the base of the pelvis the pelvis and out to the perineum. Adjacent to the ligaments are muscles: the pelvic floor muscles (PFM) at the front and the obturator and piriformis at the back.

What is Pudendal Nerve Pain (Pudendal Neuralgia)?

Pudendal nerve pain may be associated with either irritation of a branch of the nerve, or with compression of the pudendal nerve itself by fibrosis of the surrounding tissues or the bulky PFM or tight ligaments. The symptoms of this problem are mainly expressed by pain (burning, electric shock like, raw feeling etc.) in the vagina, penis, scrotum, perineum, anus and pelvis and difficulty sitting for prolonged periods of time. Pudendal Nerve Pain may be related to childbirth, vaginal surgery, cycling, excessive abdominal & pelvic exercise, past pelvic/perineal trauma and straining or it may have no obvious cause. You may also have associated bladder, bowel or sexual problems.

What can be done about this?

You will be assessed by a doctor and physiotherapist to determine whether your pudendal nerves and pelvic floor muscles indicate that pudendal neuralgia is a possibility.

You may have a pudendal nerve block performed as a diagnostic procedure; local anaesthetic is injected into the canal through which the nerve travels.

You may be prescribed some medications to clam down nerve pain.

Early treatments aim to relax the pelvic floor muscles and decrease the pressure on the nerve. You will also be advised not to strain especially during defaecation & voiding. If appropriate you will also be given bowel & bladder management strategies. You may also need to manage painful trigger points in the PFM. You may be suitable for trigger point injections or Botox injections into the PFM if deemed appropriate.

Sitting: The aim is to avoid pressure on the entire perineum from the pubic bone to the tail bone (coccyx).Try sitting on 2 rolled towels or a cut up pool noodle. Clarke Rubber have “stadium seats” which can be cut into an appropriate shape.

What should you NOT do?

Prolonged sitting; straining; cycling (stationary, road, racing); rowing; abdominal strengthening exercises such as sit-ups, Pilates & intense core stability work; high level dance classes; heavy weight lifting; any other high level intense training which causes marked abdominal strengthening; pelvic floor muscle strengthening exercises. You will be taught how to RELAX & maybe stretch your PFM by the physiotherapist.

What can you do?

If you are able & inclined: general cardio work such as walking, swimming (not breast stroke), gentle running, soft sand running, light weights, gentle exercise classes, yoga (stretching & gentle toning not high level strengthening). If any of these activities flares your pain please cease & discuss with the physiotherapist…

Here are some quick links to the website’s resources.

Body in Mind

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bodyinmind.org

Research into the role of the brain in chronic pain.

Who are Body in Mind

The relationship between the body, the brain and the mind is complex and magnificent, which is why lots of people are investigating it. This website focuses on attempts to better understand the way the body, brain and mind interact. The lead scientist, Dr Lorimer Moseley, is particularly interested in the role of the brain and mind in chronic and complex pain disorders. Through collaborations with clinicians, scientists, patients and thoughtful friends, the team is exploring how the brain and its representation of the body change when pain persists, how the mind influences physiological regulation of the body, how the changes in the brain and mind can be normalised via treatment, and how we can teach people about it all in a way that is both interesting and accurate.  This website includes links to published articles, current projects, teaching resources for clinicians and lecturers, Lorimer’s books, seminars and conferences and other info that the team thinks is intriguing, important or irresistible.

The Body in Mind team includes collaborators in research experiments and clinical trials, bloggers who are kind enough to contribute to the BiM blog, and our research team here at Neuroscience Research Australia (NeuRA) and University of South Australia (UniSA). Read more…

Below is a complete list of presentations.  Clicking on the list on the right will bring up a particular presentation to view. BiM also has additional explanations and abstracts that go with some of the slides – click here for a list of blog posts which explain some of the slides. ©GL Moseley BodyInMind.com.au.

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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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