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Sharing Barry’s experience with Male Pudendal Neuralgia

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As many readers to the site will know I don’t encourage contact. I simply can’t maintain it, and most certainly most times I have had contact I can’t help but be drawn back into the dreaded sitting and typing position through feelings of compassion, empathy, or to communicate a new perspective or treatment in the hope of helping others with Pudendal Neuralgia (PN). Barry’s story, I felt was important to add to the site.

Most women with PN have felt lost at some point but as time goes on and word spreads, I believe treatment and understanding is more widely found for women. I’m not so sure for males though. I’ve had a few males battling PN contact me, and although they’re not in Barry’s end of the world I felt this email had to be shared.

Barry it’s been a pleasure to cyber meet you. Thank you for allowing me to share your story and thank you for alerting me to How do I know if I have PN or PNE?

Hi Soula,

Thank you so much for your kind response. If I remember you are not in the US
. Either way I do understand the not wanting to talk. It seems most of my friends have disappeared. I know this is because people don’t want to be reminded about or hear about bad news or pain. Kind of a shame when you need love and support, just like in a divorce, it’s not there.

I have a wonderful 2nd wife now 18 years and without her I’d be gone. 
I use Facebook only to see some family pictures from Florida (my wifes family) 
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.

The first one was supposed to be a well-known Neurosurgeon who claims to have been on Oprah and Dr Oz TV shows. He was once affiliated with Johns Hopkins. Here is where it gets bizarre. He told me that I definitely had PN and I needed to get the Pudendal Nerve Entrapment surgery immediately. With further discussion I learned that he was not on our Blue Cross Health Plan or any Insurance. Then I asked him how many he had done and he replied that he has done extensive research. Further chat revealed that all of his experience was on cadavers. I decided not to be his first live patient. This was so bizarre.

The 2nd, Dr Mark Conway from New Hampshire had been in France working with the Doctor there who pioneered the surgery. He was very compassionate and told me I’d need to have some testing at his office in New Hampshire. I had also contacted Dr. Stanley Antolak in Minnesota. He was much further away and Minnesota in the wintertime is brutal. He also had a whole network set up including a Physical Therapist, which for men there are basically none. This seems to be more prevalent in women.

My wife and I flew to Manchester New Hampshire. Dr Conway was actually an OB-GYN and man was that a weird feeling. When I saw him I asked how many of his patients were men and he replied about 40% from all over the US. He did some testing and diagnosed Pudendal Neuralgia. The same day, he arranged for me to have my 1st Pudendal Nerve block with Dr. Jorge Quesada at Eliot Hospital in Manchester, New Hampshire. We flew back to Maryland the next day. The block lasted about a month, so off I flew to New Hampshire again. In all I hit New Hampshire three times.

On December 2nd, 2011 I was scheduled for a full knee replacement in Delaware, and I was still in agony. There was no way I could do it and I could not get a flight to New Hampshire due to Thanksgiving and no seats available. Feeling helpless and being unable to walk, I had just about given up hope when a small miracle happened. A young lady (actually a Nurse in Virginia) I had been in contact with sent me an email with the name of Dr. Christian Muller, a radiologist that ran a pain clinic in Fairfax Virginia. I called his office and learned that he would do the Pudendal Nerve block. They got me in the day after Thanksgiving and he was a wonderful man. Although he does not believe in the Pudendal Neuralgia diagnosis (he keeps telling me it Non- Bacterial Prostatitis), he did the Pudendal block with a CAT scan for more accurate needle placement. This proved to be the best block yet. It got me thru the knee replacement and Physical Therapy and lasted about 6 months. Since then I’ve had the 5th and 6th Pudendal Nerve blocks with him. Now I have moved to Delaware and there is no one anywhere nearby, even in Philadelphia that will do this block. Dr Muller is a three hour drive, and as I said sitting is the hardest part.

Then I heard about the contaminated Nerve Block medicines that were in Massachusetts and that people were dying even a husband and wife, who had blocks the same day died. I think there had been mold growth in the medicine, and these people died very quickly. This combined with a very cracking lower spine from all these procedures, has me scared and on hold for now. I am somewhat improved, but I need the other knee done. In addition I will need the Interstim battery replaced in about a year, and there again is no one near here that can do it. It was implanted at George Washington Hospital’s Hospitals Pelvic Floor Center in Washington, DC – also a three hour plus ride and with no parking and no place to stay for the follow-up. In addition I have four kidney stones two on each side.

If you have gotten this far in this long email, I thank you for that. The frustration of being male, having few Doctors that believe in the diagnosis, and the inability to find a Physical Therapist that will work on a man, has left me with incomplete treatment and knowing there is no real cure. My family (other than wife) are not helpful as my brother constantly reminds me that at least it’s not cancer.  I’m in my late 50’s and he is a 62-year-old Attorney with very few health issues.

I  continue to hang in there. I am on Social Security Disability, and don’t get out much. My wife who is older is patient with me, but she has her own issues and recently retired.
 We sold our house in Maryland for a very low price and moved here to Delaware to what was a vacation type home. We love living here but finding Doctors is a huge problem.

Again, thanks for your time, and if there is ever anything I can do for you, please contact me.

Warm Regards

Barry

Health Organization for Pudendal Education (HOPE)

Author:

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. (more…)

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 don’t understand’, please listen to the following 38 minutes.

The world of pelvic pain specialists have jumped on this wonderful exposure, Wednesday was a day that will be marked in medical history. It’s given all sufferers a voice and most importantly an audience. I have a hunch it’s going to take WorkCover a while to acknowledge the issue but I’m going to do my best to change that. I know it’s a long shot but there are people with this pain at home, unable to get up and feed/dress themselves without support because WorkCover have chosen to eliminate ‘chronic pain’ from their assessment guidelines.

None of my treatments have been supported, my support for the rest of, what would have been my working life ended, my impairment found to be 0% (even with an implant scar). I’ve been investigated (poorly I might add) and now left with about 9 hrs of scattered up time a week, having invasive treatment, and completely reliant on Theo’s undivided attention and help, with 0$ support. Of course I’ll do it, but I paid a WorkCover premium and expected it to support me if I hurt myself at work.

Please feel free to share the email. Thank you ALL for your support (well except for WorkCover).

Listen now or Download audio
Broadcast: Wednesday 6 February 2013 9:05AM (view full episode)

Imagine not being able to sit down, go to work or look after your kids because of an overwhelming pain in your pelvis. One of our guests, Vanessa Watson, experienced excruciating pelvic pain for several years and it’s radically altered her life. Vanessa’s story is not uncommon but as the causes for pelvic pain are complex; some women don’t receive adequate medical treatment. So what is known about the causes and could medical treatment and services improve?

Guests

Bettina Arndt
Social Commentator
Dr Susan Evans
Gynaecologist and Pain Medicine Physician
Vanessa Watson

Credits
Executive Producer Julie Browning

Presenter Natasha Mitchell

Read more…www.abc.net.au

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:

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)

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 (more…)

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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Healing at Boboli Gardens (Porcelain Museum) FlorenceBlock!!! Absolutely, completely, totally but only if you know where…

I have to stress this post completely relates to my condition and my personal issue with Pudendal Neuralgia. I also have to state that while I document my treatments and their effects it is difficult to know whether the effects will last. That also explains why my post is written so much later than my first nerve block (Dec 2011) and will end with ‘stay tuned’.

December 7, 2011

If you’ve been following my story then you’ll know by 2011, four years post accident, I had discovered, what I’m quite sure is, the second main culprit of my injury (the first being a nasty pelvic ligament), the Pudendal Nerve. A sequence of events found me in Dr Peter Courtney’s hands who suggested we block this nerve (bilaterally) and also inject both Sacro-Illiac (SI) joints with some cortisone as they were quite bulgy, especially on the opposite side of my injury (overworked poor darling!).

Nerve blocks affect us differently but the trickiest part about the Pudendal Nerve block is that it is quite painful and ideally requires a full anaesthetic which means the blocks must be a minimum of 12 weeks apart. So if my nerve block didn’t give me relief it either meant we missed the spot (hardly unlikely in my case) or that this treatment wasn’t going to work for me. I didn’t get 12 weeks of complete relief but certainly it reduced my pain and I had many moments of total relief and some random full days too. 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.

The main aims for a nerve block are pain relief, diagnosis and obviously a cure. Cure happens, research tells us, if the block gives long-term relief and the nerve relearns how to behave during that time (or as I prefer to believe finally gets its sedative, has a long rest and recovers).

I feel quite lucky to be tuned in to my body and able to explain how I’m feeling and what pain I have and where. During this first block I noticed the rectal branch of the nerve was not affected so sitting back, completely on my behind with my back to a chair (not supporting my upper body on a table or my hands) would trigger the pain immediately. I’d feel a heat begin, a zinging then eventually I’d have the flare up. I explained this detail to Dr Courtney and it gave us a huge lead for my second nerve block… (more…)

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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