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  1. #1
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    Pudendal Neuralgia??

    My perineum is a nightmare.

    I keep getting SHOOTING pains in my perineum. Sometimes for one second and sometimes lasting hours.

    My perineum has always been an issue, but had been doing alright for a while with my Vulvodynia and PFD treatments. But lately it has really been bothering me. Today, I was walking in the neighborhood and could barely walk home.

    I have met a friend in real life who has PNE (what are the odds right...that a Vulvodynia and PNE girl would encounter each other lol) and I really don't think I have PNE. But today we were talking about Pudendal Neuraglia. A lot of the symptoms fit...especially the part about a "forgein object" feeling.

    A lot of times when I am having perineal issues i feel like there is a fake ball in my perineum.

    Does anyone have V or PFD and also have Pudendal Neuralgia?? Do u need to find a different doctor for the Pudendal stuff??

    I was guessing mentioning the issue and my research to my V doctor would be a good start.

    I appreciate any info or tips. Thanks!
    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

    My Pelvic Pain Blog

    FB Fanpage for My Pelvic Pain Blog

  2. #2
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    Hey there,

    Haven't had a chance to respond to a post of yours for awhile! :-> I am really glad that at least some of your symptoms are doing better.

    I just got home from seeing one of the offices on the PN/PNE and Pelvic Pain Society websites. I don't want to talk about that part right now...still processing...but just wanted to say I'm sort of in the same boat right now as are a couple of other posters I've noticed. I think you're on the right track mentioning your increased symptoms and research to your doctor. I know that you have already been through a lot of PT but it might be worth it to find a PT whose knowledge of the pelvic anatomy and pudendal nerve you are very comfortable with, at least to get an assessment. This might be worth a trip if you can swing it. It doesn't commit you to anything.

    As for your questions on people having multiple problems, well, I do. And all those things can look similar, occur together, and aggravate each other. You can see from the info Kara provides why differentiating might be difficult. So you just have to keep doing what you're doing, and work out the best treatment plan you can where the pieces fit together and help out. And I bet you'll do really well!
    "When fear seizes, change what you are doing..." --Jean Craighead George, Julie of the Wolves

    --Dx: IC, PFD, V, PN irritation, yeast, and "IBS-like symptoms" that includes a lot of difficulty with gluten...in that order. Pleased to report that "it's something new every day" includes great things as well as painful things.

  3. #3
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    Thanks for your response.

    I have an appointment with my Vulvodynia specialist Jan 11th and i guess I will go from there.

    You make a good point about more PT. I have only done biofeedback. I was originally supposed to do internal massage, but had trouble finding a place.
    DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

    Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

    My Pelvic Pain Blog

    FB Fanpage for My Pelvic Pain Blog

  4. #4
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    I really hope you'll let us know how it goes and wish you the very best of luck. If you can't find a PT, maybe one can set you up with a home program? Or tell you where to find even more treatment if you need it?

    Go forth and conquer!:-p :->

    Did you ever try nortriptyline instead of Elavil? There are some days the Elavil gives me a little too many side effects.
    "When fear seizes, change what you are doing..." --Jean Craighead George, Julie of the Wolves

    --Dx: IC, PFD, V, PN irritation, yeast, and "IBS-like symptoms" that includes a lot of difficulty with gluten...in that order. Pleased to report that "it's something new every day" includes great things as well as painful things.

  5. #5
    ICN Member Kara29's Avatar
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    If there's anything I can do....

    If there's anything I can do to assist our support you right now you can Private Message me if you'd all like.

    Happy Holidays,

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  6. #6
    ICN Member chia's Avatar
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    pnc

    kara; so glad you are still on here..it has been forever since i have been on here. you are the exact person i need for this subject..i am starting my journey to look for a dr. about my pain may be a nerve thing going on. where do i begin besides my family dr. i will go to her of course but she is learning about i.c. and nerve pain as we go..in case you forgot..i had my bladder removed in 2000...pain returned in about a mon..it has been there 24/7 but livable with pain meds untill last mon..now my rectum is also hurting , pressure..ect..i am cluelss..i have read so much i am more confused than ever.i would love yr help..i read you had surgery..did it help????..am going to look at yr videos also...thanks..deedee

  7. #7
    ICN Member Kara29's Avatar
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    Good Luck to you and wishing you find some answers here!

    http://www.pudendalhelp.com/List_Of_PT'S.html

    This is a list of Physical Therapists that deal with PNE

    Here are the Doctors:

    Dr. Mark Conway is and ob / gyn that is the head of the obstetrics and gynecology department at St. Joseph's Hospital in Nashua, New Hampshire. Dr. Conway has made multiple trips to Aix in Provence to learn the TIR surgical technique from Dr. Eric Bautrant and to learn Dr. Eric deBisschop's technique for EMG study of the pudendal nerve (pre-operatively and intra-operatively). Dr. Conway has partnered with Dr. Quesada (an anesthesiologist) and Lynne Assad (a physical therapist) to create the first comprehensive pudendal neuralgia treatment center in the country, offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

    OB / GYN Associates of Southern New Hampshire


    30 Daniel Webster Highway, #30
    Merrimack, NH 03054
    Phone: 603-883-3365


    ------------------------------------------------------------------------------------------------
    Dr. Aaron Filler is a neurosurgeon that offers a pudendal neuralgia diagnosis as well as surgical treatment in Santa Monica, California. If you are interested in making an appointment, you can contact Dr. Filler directly through this appointment request form on his website.

    Institute for Nerve Medicine
    Center for Advanced Spinal Neurosurgery
    2716 Ocean Park Boulevard, Suite 3082
    Santa Monica, CA 90405
    Phone: 310-314-6410
    Toll Free: 866-41-NERVES
    Fax: 310-314-2414


    ------------------------------------------------------------------------------------------------

    Dr. Allan Gordon, a neurologist with offices in Toronto, Ontario, performs guided nerve blocks to treat PN / PNE.

    The Wasser Pain Management Centre
    Mount Sinai Hospital
    600 University Avenue, Rm. 1160
    Toronto, Ontario, CANADA MSG 1X5
    Phone: 416-586-5997


    -------------------------------------------------------------------------------------------------



    Dr. Michael Hibner is a surgical gynecologist St. Joseph's Medical Center, Phoenix, Arizona. He is also an Assistant Professor of Clinical Obstetrics / Gynecology at the University of Arizona, College of Medicine.

    Arizona Center for Chronic Pelvic Pain

    St. Joseph's Medical Center
    800 W. Thomas, Suite 800
    Pheonix, AZ 85013
    Phone: 602-406-6017
    Fax: 602-406-4011


    -------------------------------------------------------------------------------------------------

    Dr. Sheldon Jordan is a California based neurologist that performs guided nerve blocks and performs the pudendal nerve motor latency test.

    2811 Wilshire Boulevard, #800
    Santa Monica, CA 90403
    Phone: 310-829-5968, ext. 244

    -------------------------------------------------------------------------------------------------


    Dr. Stephen Irving Mann, based in California, performs the pudendal nerve motor latency test.

    2801 K Street
    Suite 410
    Sacramento, CA 95816
    Phone: 916-733-5024



    ------------------------------------------------------------------------------------------------

    Dr. Eduardo Quesada is an anesthesiologist in Manchester, New Hampsire. Dr. Quesada manages medication, performs CT guided nerve blocks, and does localized injections. Dr. Quesada has partnered with Dr. Conway (an ob / gyn) and Lynne Assad (a physical therapist) to create the first comprehensive pudendal neuralgia treatment center in the country, offering conservative therapies, medication management, EMG studies, a surgical solution to treat pudendal nerve entrapment as well as comprehensive post-operative care.

    Pain Management Center

    The Elliot Hospital
    One Elliot Way
    Manchester, NH 03103
    Phone: 603-663-6730


    -------------------------------------------------------------------------------------------------

    Dr. David Redmond is a physiatrist that performs pudendal nerve motor latency tests in South Carolina.

    1910 Blanding Street
    Columbia, SC 29201
    Phone: 803-256-4107
    E-mail: mdredmond@prodigy.net




    -------------------------------------------------------------------------------------------------

    Dr. Ken Renney is the diagnostic physician and coordinator for patients wanting to have treatment in Houston, Texas. Other members of the Houston Team include Dr. Charles Popeney (Neurologist), Dr. James Murphy (Radiologist), and Dr. Lee V. Ansell (Neurosurgeon).

    Houston Orthopaedics Sports Medicine Associates, P.A.

    2500 Fondren Road
    Suite 209
    Houston, TX 77063
    Phone: 281-565-8800
    Fax: 281-565-8808


    ------------------------------------------------------------------------------------------------

    Dr. Jerome Weiss is a urologist in San Francisco, California that is a leader in conservative treatments for pudendal neuralgia. He performs nerve blocks, physical therapy, trigger point injections and heparin injections.

    The Pacific Center for Pelvic Pain and Dysfunction

    1199 Bush Street
    Suite 650
    San Francisco, CA 94109
    Phone: 415-441-5800
    Fax: 415-441-4946



    -------------------------------------------------------------------------------------------

    Dr. Richard Marvel is an Obstetrician/Gynecologist. He is currently able to provide diagnosis and treatment for pudendal neuralgia. He is able to provide pudendal nerve blocks and also has been trained in the Transgluteal Approach to surgery. He also is currently offering Botox injections as well.

    6569 North Charles Street
    Physicians Pavilion West Suite 705
    Towson, MD 21204
    Phone: 443-632-0200

    -------------------------------------------------------------------------------------------

    There is a Dr. Fred Howard who diagnosis PN and is able to provide pudendal nerve blocks. His information is:

    Dr. Fred Howard, Jr., M.D., M.S.
    Professor of Obstetrics & Gynecology.
    Telephone: (585) 275-4004
    585-241-3210
    http://www.urmc.rochester.edu/obgyn

    --------------------------------------------------------------------------------------------------

    Dr. Octavio Calvillo, is a Board Certified Anesthesiologist, with an added qualification in pain management, in Texas. He is currently performing the pudendal nerve blocks. He is also able to provide medication management, for neuropathic pain.

    Dr. Octavio Calvillo, MD, PhD
    Interventional Pain Management
    6560 Fannin, #1612
    Houston, TX 77030
    713-979-3190 office
    713-979-0132 fax
    Website: www.paindiagnostics.org
    Email: www.painmodulation@yahoo.com




    -------------------------------------------------------------------------------------------------------------------------------------------------

    Dr. Westesson, is providing CT guided nerve blocks, in the NY area.

    Per-Lennart Westesson, MD, PhD, DDS
    Director, Division of Diagnostic & Interventional Neuroradiology
    Dept. of Imaging Sciences - PO Box 648
    University of Rochester Medical Center
    601 Elmwood Avenue
    Rochester NY 14642
    Phone: 585-275-1839
    Fax: 585-473-4861
    E-Mail: perlennart_westesson@urmc.rochester.edu
    http://www.urmc.rochester.edu/smd/Rad/neurorad.htm

















    International Physicians


    There are also a limited number of physicians around the world treating pudendal neuralgia and pudendal nerve entrapment:

    Dr. Gérard Amarenco is a neurologist that administers nerve blocks for PN patients.

    Rééducation Neurologique et Explorations Périnéal

    Rothschild Hospital
    33 Boulevard de Picpus
    75012 PARIS
    France
    Phone: +33 140 19 36 41
    E-mail: gerard.amarenco@rth.aphp.fr

    -------------------------------------------------------------------------------------------------


    Dr. Andrew Baranowski is a urogynecologist that performs nerve blocks. He generally is in the practice of diagnosing and treating uro-genital pain related issues.

    National Hospital for Neurology and Neurosurgery
    Queen Square, London WC1N 3BG
    Phone: 020 7837 3611


    -------------------------------------------------------------------------------------------------

    Dr. Eric Bautrant is a pelvic surgeon in France who performs the trans-ischio-rectal fossa approach to pudendal nerve decompression surgery. This approach requires a small vaginal incision in women and a small incision between the anal area and scrotum for men. Usually the sacrospinous ligament is partially severed to relieve the compressed nerve but the sacrotuberous ligament is spared. To read more about his procedure click on this link: http://www.perineology.com/files/pne_bautrant.pdf

    It is best to contact him through e-mail.

    Dr. Eric Bautrant

    L'AVANCEE
    25, rue Victor Hugo
    13100 AIX EN PROVENCE
    Phone number: 04 42 37 38 07
    Fax : 04 42 26 60 76
    ebautrant@l-avancee.fr
    chir.gyneco@l-avancee.fr

    -------------------------------------------------------------------------------------------------



    Dr. James Beco is a perineologist who performs pudendal nerve decompression surgery using the perineal approach. As a modification to Prof. Shafik’s perineal procedure, Dr. Beco opens the “clamp” between the sacro-spinal and sacro-tuberous ligaments. It is not a true “clamp” but actually a space closed by a fascia called the “fascia lunata”. After opening this fascia from the coccyx to the ischion there is a large space between the 2 ligaments where the nerve can move freely. He does not believe it is necessary to cut the ligaments to free the nerve. At the end of the surgery he separates the pudendal nerve from the sacro-spinal ligament which can be a difficult procedure. Link to overview of Dr. Beco’s procedure: http://www.perineology.com/files/iug...oster-beco.pdf

    Dr. Beco’s contact information:

    HC Clinique Sainte-Elisabeth
    Rue du Naimeux
    B-4802, Heusy
    Belgium

    Office address:

    9a Avenue Hanlet
    B-4802 Heusy
    Belgium
    Phone: 00 32 / 87 23 01 69
    Fax: 00 32 / 87 23 04 69
    E-mail: Jacques.beco@skynet.be



    -------------------------------------------------------------------------------------------------

    Dr Jean-Pierre Spinosa practices in Swizterland and uses Prof. Shafik’s technique for PNE decompression.


    FMH gynécologie et accouchements
    Médecin Chef adjoint Hôpital de Morges
    Anc. Médecin associé, Unité de périneologie, Hôp. Univ. Genève
    Rue des Terreaux 2
    1003 - Lausanne - Suisse
    00 41 21 3290980
    spinosa@deckpoint.ch

    -------------------------------------------------------------------------------------------------

    Professor Roger Robert leads a team of physicians from Nantes, France that diagnose and treat pudendal neuralgia. Prof. Robert developed the trans-gluteal technique for surgical release of the nerve. This team of physicians includes Dr. Labat, a neurologist that performs EMG, pudendal nerve motor latency testing and other tests to confirm the presence of PNE. Dr. Riant is an anesthesiologist that performs nerve blocks and assists in the diagnosis effort. Dr. Guerineau is a Kinestherapist and physical therapist that through his techniques, reduces muscle spasm thereby decreasing a patient's pain level. Since contact is only available via mail, please include your name, date of birth, address, phone number, a history of your symptoms, treatments that you have tried, and an e-mail address, if available.

    Professor Roger Robert
    c/o Dr. Maurice Bensignor
    Centre Catherine de Sienne
    2 Rue Eric Tabarly
    44202 NANTES CEDEX
    France

    -------------------------------------------------------------------------------------------------

    Dr. Bruno Roche leads a team of physicians from Geneva, Switzerland. Dr. Roche is a surgeon specializing in coloproctology and perineal surgery. He was trained by Professor Robert in the trans-gluteal technique of surgical decompression. He works closely with Dr. Alex Cahana, an anesthetist and chief of the pain clinic. Dr. Cahana specializes in pain evaluation and infiltrations. Dr. Joan Robert-Yak performs pudendal nerve motor latency testing and handles any neuromodulation treatment that may be required.

    Unité de Proctology
    Hopitaux Universitaire de Geneve
    1211 Geneve 14
    Phone: +41 22 372 79 34
    Fax: +41 22 372 79 09
    E-mail: Martine.Martelletta@hcuge.ch



    ------------------------------------------------------------------------------------------------
    Dr. Eric de Bisshop is a pelvic neurologist who pracitices in Aubagne close to Marseille, France. He performs EMG’s and does EMG guided pudendal nerve and ilioinguinal nerve blocks. He works with surgeon, Dr. Thomas Perez who performs PNE decompression surgery using the trans-vaginal approach for women.

    Dr. de Bisshop works with his wife, Dr. Rajeshree Nundall who uses angiology to assess the pudendal blood vessels. If there is a pudendal nerve entrapment the blood vessels will also be entrapped since they travel alongside each other. Angiology confirms EMG testing and gives information about tissues including scar tissue after surgery. This is a link to Dr. Nundall’s scientific paper: http://www.perineology.com/files/doppler-nundlal.pdf



    This is Dr. de Bisshop’s contact information – the best way to contact him is through e-mail:

    55, avenue des Goums
    13400 Aubagne,
    France
    Phone 00 33 442 163 395
    rajeshree@free.fr

    ----------------------------------------------------------------------------------------

    Prof. Thierry Vancaillie is currently doing PNE surgery after working with Dr. Bautrant in France.
    Prof. Vancaillie has an International reputation for innovative procedures in gynaecology. He is Assoc. Professor of endogynaecology.
    The clinic is known as the Pudendal Nerve Diagnostic and Treatment Unit


    Royal hospital for Women, Randwick, NSW.
    Prince of Wales Hospitals.
    Tel: = 02 9382 6557 (if calling from Australia)
    - +61 2 9382 6557 (if calling from outside Australia)


    ----------------------------------------------------------------------------------------------



    Dr. Les Roberts is a neurologist in Melbourne Australia. He is available to conduct the pudendal nerve motor latency testing.



    Dr. Les Roberts
    St Vincent's Health
    P O Box 2900
    Fitzroy
    Victoria 3065
    Australia
    Tel: (03 94191933)
    http://www.svhm.org.au/



    -----------------------------------------------------------------------------------------------

    Dr. Tim Pavy is a PN aware doctor and is the head of the Anesthesia and Pain Management at King Edward Memorial Hospital.

    Dr. Tim Pavy Head of Anaesthesia & Pain Management
    King Edward Memorial Hospital
    Subiaco
    Western Australia
    Tel: + 61 8 9340 2222 (if outside Australia)
    08 9340 2222 (within Australia)

    --------------------------------------------------------------------------------------------------------------------------------------------------

    Dr. Peter Courtney is a Pain Management specialist who also is very PN aware. His practice includes General Pain Medicine utilising diagnostic and theapeutic injections of spine and sympathetic nerves. Radiofrequency neurotomy, trigger point therapy and hypnotic relaxation techniques.

    Suite 14
    166 Gipps St
    East Melbourne, Victoria 3145
    Australia
    Telephone: (03 94176625)
    email: petercourtney@asag.com.au
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  8. #8
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    problems with perenium

    I've been having difficulty with my perenium and would like to see a PT and wondered if anyone could recommend one in the Buffalo, NY area. Should I see a doctor for PFD also? I see a urologist for IC already. If so, is there one in Buffalo that anyone could recommend?

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