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Sharing Barry’s experience with Male Pudendal Neuralgia

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I’ve lived here in Delaware since December 2011 and have not had a block since. I already had 6 Pudendal Nerve blocks and this after so many other procedures:
 5 Ganglion Blocks, 6 Caudal Blocks, 2 Botox injections, 2 Radio Frequency Ablations, 2 Neurostimulator Trials, an Interstim Impant, and then the 6 Pudendal Nerve blocks.

Endless research and finally putting the right two words together on Google, opened up the world of Pudendal Neuralgia (Neuropathy) to us. That was near the end of December 2010. On the day after New Years and in response to two letters I sent to two Dr’s names I had found, I got calls from both Dr’s the same day.

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Health Organization for Pudendal Education (HOPE)

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HOPE is probably our best online resource for PN, the forum in particular is full of great advice and information from practitioners and patients, around the world including of course, Australia/NZ.

HOPEBracelets

HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE).  If you have come to this website it is probably because you are in pain or you know someone who is in pain.  Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back.

Visit the website: www.pudendalhope.org or sign up to the forum

MR Neurography, I’d fly for that!

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(Excerpt from Dr. Aaron Filler’s website www.nervemed.com/about/dr-aaron-g-filler-md-phd)

Dr. Aaron G. Filler, MD PhD FRCS

Dr. Aaron Filler is the world’s leading expert in treatment of nerve pain. He has revolutionized nerve-pain treatment by inventing several new technologies. One such technology, MR Neurography, enables doctors to use an MRI scanner to examine nerves, previously a difficult-to-impossible tissue to visualize with MR imaging. Dr. Filler’s research in axonal transport is leading to a whole new generation of advanced pain medications. He has developed many new “minimal access” surgery methods that allow him to treat complex nerve problems with small outpatient surgeries. He has also pioneered the use of the Open MRI scanner to do surgeries and other therapies with the ultra-high precision and safety of the magnetic resonance imaging.

At Dr. Filler’s Institute for Nerve Medicine in Santa Monica, California, the key to success remains a very traditional endeavor: listening to the patient and doing a thorough and expert neurological examination. Dr. Filler typically spends more than an hour with each new patient. The results of the initial examination are then strengthened and perfected with application of advanced technology available nowhere else in the world.

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ABC Radio National thank you thank you thank you

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Finally some accurate coverage and attention. WorkSafe, I hope you were listening, ignore Chronic Pelvic Pain no more! Honestly, I cried listening to this on Wednesday. Nothing like empathy and understanding after years of pain and hunting for diagnosis and proper treatment. So for anyone who’s (understandably) thought ‘is so-and-so really in pain? I just…

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Leon Chaitow

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Leon Chaitow Chronic pelvic pain book cover

Leon Chaitow FB message

(Image left: from Leon’s FB page showing his support for my website)

From Leon Chaitow’s website

Welcome to my revamped website (fully redesigned and built by my daughter Sasha).

Whether this is your first, or a return, visit – please take your time to explore the various sections and to click on individual book titles to visit pages devoted to more detail of each of these, or for links from where they can be purchased – either in dollars or in sterling.

As you navigate the site you will see that books have been grouped into the following categories, viewable through the dedicated “Bookshop” pages:

  • New/current editions of text books
  • Earlier editions of textbooks that are still available
  • General health titles – suitable for the lay-person
  • Classical books (in print for over 30 years, but still in print)
  • Out of Print titles that are still available – used and sometimes unused
  • Books by my wife Alkmini Chaitow

There is also a section featuring downloadable e-books where some chapters are freely available (in pdf format) as well as the entire book being available for purchase at a reduced price compared with the print version  available on Amazon. In addition the site includes the following features:

Please use the ‘contact’ page to send any ideas you may have for improving the content of the site, but please note that I cannot provide individual advice, or answer questions regarding health care.

The purpose of the site is to promote health information and education, but not to provide specific advice, which can, in my opinion, only be responsibly offered in a traditional setting, where a health care provider is able to fully evaluate an individual’s history and current condition. I look forward to hearing from you.

Chronic Pelvic Pain and Dysfunction: Practical Physical Medicine

by Leon Chaitow with Ruth Lovegrove

(Churchill Livingstone – 2011)
ISBN – 978-0702035326

Leon Chaitow, ND, DO, Registered Osteopath and Naturopath; Honorary Fellow and Former Senior Lecturer, School of Life Sciences, University of Westminster, London, UK; Fellow, British Naturopathic Association

Dr Ruth Lovegrove, PhD, MCSP, Physiotherapist and Lecturer: External Lecturer at Southampton University, UK; Former Research Specialist at Stanford University California, USA

Clearly written and fully illustrated throughout, Chronic Pelvic Pain and Dysfunction: Practical Physical Medicine offers practical, comprehensive coverage of the subject area accompanied by a range of video clips on a bonus DVD.

Prepared by editors of international renown, the book provides clear anatomical descriptions of the structures relevant to the genesis of pelvic pain followed by the current perspectives on the neurological basis of pain, including the influence of psychophysiology. Chapters then address physiological mechanisms for pain generation; including musculoskeletal causes and the role of sport in the evolution of chronic pelvic pain and the influence of gender on pelvic pain syndromes including hormonal imbalance, pregnancy and labour.

Having guided the practitioner through a clinical reasoning process to help establish the differential diagnosis of chronic pelvic pain, the volume addresses the range of therapeutic options available. This includes medical management, the role of nutrition in the control of inflammatory processes, the use of breathing techniques in the relief of pain and anxiety as well as the involvement of biofeedback mechanisms in diagnosis and treatment. The use of soft-tissue manipulation approaches, pelvic floor manual therapy release techniques and osteopathic approaches are also considered along with the use of dry needling, electrotherapy and hydrotherapy.

Leon Chaitow Chronic pelvic pain book coverChronic Pelvic Pain and Dysfunction: Practical Physical Medicine offers practical, validated and clinically relevant information to all practitioners and therapists working in the field of chronic pelvic pain and will be ideal for physiotherapists, osteopathic physicians, chiropractors, manual therapists, acupuncturists, massage therapists and naturopaths worldwide.

Read more… www.leonchaitow.com/bookshop-europe/

Males with Pudendal Neuralgia in Australia

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male_symbol

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:

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Naomi Wolf’s enjoyment sex nerve needed repair

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(Excerpt from the Daily Mail’s newspaper)
Feminist Naomi Wolf finds enjoyment in sex again after her nerve ‘wiring’ is repaired by surgeon
• Author felt something different was happening after sex
• ‘I felt I was losing somehow, what made me a woman’
• Doctor found she had been born with mild spina bifida

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Challenge the Uncomfortable Silence

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Read Sandy Hilton’s full article here: www.bodyinmind.org/persistent-pelvic-pain/

Every patient you see is likely to have a pelvis.  Roughly 1/4 of women will have had some pelvic pain in the course of sport, childbirth, sex or urinating.  Men are harder to pin down for exact numbers as it gets poorly diagnosed along with back pain and prostate problems but they have pelvic pain as well.  Jane Bowering did a great job pointing out the need for health professionals to ask the difficult questions and screen for pelvic pain in her write-up following the NOI2012 extravaganza found here: Pelvic Pain: all the fun stuff. (more…)

To block or not to block…

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….
As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly….
I began to really struggle 12 weeks after the first block and even during that time I had a few flare ups. I wondered if my implant perhaps had interfered with my nerve block as it’s known to cause pain if you keep it on whilst the pain is at a low-level (yes, try to figure that one out!!) By the time I realised my nerve block was well and truly wearing off I was at the 14 week mark, and having been very excited with what relief I had, Theo and I booked a holiday to Italy. Thankfully the brilliant Dr Courtney was able to fit me in for another nerve block at the 19 week mark which was exactly two weeks before travel time. Why am I mentioning the holiday? Because I believe a nerve block needs support, it needed me to get out of the pain routine and team it up with as much distraction as possible…
I felt my brain would freshen up, have a new shot at life and not have to face my day bed, aids, daily pain routine etc etc. I set off to live a dream in hope distraction would bring a positive change and another step forward…

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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

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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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