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.
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.
(In response to my request for information I also included a sentence for busy practitioners: You can reply with ‘yes’ to approve this if you are busy. This will explain the first reply below)
1. Docteur Jean-Jacques LABAT
YES!
Docteur Jean-Jacques LABAT
Neurologie
CHU Nantes
2. Thierry Vancaillie MD (Belgium), FRANZCOG, FFPMANZCA
Dear Soula,
Your website looks fabulous! All the material we use commonly is on our website, feel free to use it. If there is something more specific you need let me know.
Anne Florence is a great asset, I agree and a wonderful human being.
Keep up the good work, well done
Regards
Thierry
Thierry Vancaillie MD (Belgium), FRANZCOG, FFPMANZCA
Gynaecologist and Pain Medicine Specialist
Conjoint Professor, UNSW
Director, Women’s Health and Research Institute of Australia
3. Stanley Antolak, Jr., MD
I am sorry about your problem. It can be successfully treated…
I spoke with Prof. Vancaillie in France a couple of years ago…he seems studious about this problem and very compassionate.
Good luck, do not despair. Hug your therapist from me. She is important to you and your brothers and sisters with chronic pelvic pain.
Best regards,
Stanley Antolak, Jr., MD
4. Fetske Hogen Esch
Dear Soula,
I am so sorry that I forgot to answer you. Have been busy. Of course I allow you to link. It is important that people know there can be something done about their pain problems.
Good luck and feel free to contact me if you have questions.
Warm regards Fetske
Fetske Hogen Esch
5. Jacques Beco M.D
Dear Mrs Mantalvanos,
I understand. It is the same problem everywhere in the world.
I have put all the information I have on www.pudendal.com . You can insert some of my presentation on your website without problem (but refer of course)
No problem. You can use my work on your website.
Keep me informed when it will be ready and I will insert your link on www.pudendal.com for Australian patients.
Best regards,
Jacques Beco M.D.
6. Peter Courtney
499 Springvale Road, Glen Waverley, VIC, 3150
t (03) 9566 2733
Melbourne Pain Group
6. Professor Teddy
(Responsible for my peripheral stimulation device)
Precision Neurosurgery
1300 773 247
info@precisionneurosurgery.com.au
Neurosurgeon, The Royal Melbourne Hospital, Western Hospital, and Northern Hospital
And of course, thank you to my local Masters who offer a mixture of relief and treatment!
Michael Anthony Quinn
Just fantastic!
Director of Oncology/Dysplasia, The Women’s.
9. Lorimer Moseley
thanks for asking soula –
i am happy for that i think – heidi is copied in – she might have a better idea of what that actually means…
heidi?
Professor of Clinical Neurosciences and Chair in Physiotherapy, School of Health Sciences, University of South Australia.
Heidi Allen
You’ve got a great looking site. Thanks for including BiM – we’d be delighted!
Heidi
Digital Strategy, Research Assistant, Body in Mind.
10. Anne-Florence Plante
Good job, great work and energy, well done both of you.
theo you will be made redundant soon, you desserve still an award as a carer…
Soula please make a art gallery or an exhibition that is accessible from your website with your work on pain, your art, your soul … good luck
anne florence.
Pelvic Chronic Pain, The Women’s.
Pam Frost
Wow, Soula, I get home from Adelaide to find the site’s gone live! Congratulations, what an achievement! It looks fantastic, what a great compliment to your persistance, resourcefulness and fabulously curiously mind. I am about to proliferate it throughout my therapist networks – there are many that know of its existence and are waiting impatiently for it!
Remedial Massage, Gertrude St Yoga Centre
Astrid Diercks
I just want to thank you for sending your wonderful news and designer website about pudendal pain and effects.
You have done a sterling journey and I can t even begin to imagine what you have endured and learnt from it all.
Have a lovely day and ‘WELL DONE” HERE’S TO A BETTER QUALITY LIFE FOR YOU!
kindly
Astrid
Director, Pond Massage Water Wellness P/L
Catherine Aurubind
Hi Soula,
Had a look at your website and blog and pleased to know that you are taking the bull by the horns to help raise awareness and education of PN in Australia.
We established HOPE website in 2009 and now have many health care professionals supporting us with providing up to date, accurate information. MRI and flouroscopy imaging has improved so much in recent years. Unfortunately we are faced with a medical world still learning of our problem. Thank you for helping to raise awareness in Australia.
This type of injury can heal by itself in time Soula, so don’t ever give up hope that one day you’ll be pain free again. it is possible.
Kind regards
Catherine
HOPE (Health Organisation for Pudendal Education) in Australia & New Zealand.
Dr Coralie Wales
Hello Soula
Thanks for your message. Nice website, well done! I have read through your website, its got some good content. I am happy to put a link on the CPA website as well.
Dr Coralie Wales
President
Chronic Pain Australia
To the masters not online
Dr Eric Bautrant who made no comment but added me instantly to his mailing list so I can share his information, and other specialists my Pudendal family members have recommended from personal accounts.
8. Dr. Eric Bautrant
L’AVANCEE
25, rue Victor Hugo 13100 Aix en Provence, France
t: 04 42 37 38 07
E-mail: ebautrant@l-avancee.fr
(Following information from Pudendalhope.org)
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.
7. Prof Roger Robert
Neurosurgeon – Multidisciplinary Meeting
Clinique De Neurotraumatologie
CHU Nantes
Hotel Dieu, 1, Place Alexis Ricordeau, 44093 Nantes
France
More information on international specialists can be found at Pudendalhope.org
[…] strength to build the site (which at the time had to be with 15 minutes of capacity a day), was the encouragement from all the professionals who responded to me when I asked permission to use their research on the […]
I had a hysterectomy after being diagnosed with a prolapse. I was fine after the surgery and went home just a day later without even being asked to go back for a 6 week check up. However, 8 years later I had a further prolapse. I couldn’t understand how this could happen as I’d the hysterectomy, which I thought meant it wasn’t possible for it to happen again. Silly me! This time I woke up after surgery in absolute agony. I was told all had gone well, I told the surgeon I was In agony but he wanted to discharge me but I really couldn’t face the 55 mile journey home, so they let me stay another night at this private hospital in Kent, where I’d also had the hysterectomy. The journey home was dreadful. I knelt on my knees leaning on the back seat of the car. My husband drove really slowly and I couldn’t wait to get into bed. I rang the hospital 5 days later to say I’m in agony still but they said 5% of women take as long as 4 weeks before they feel better. The pain went on and on, I went back 4 times over the next 10 months seeing both the 2 consultants at this private hospital, each time they shrugged their shoulders as if it was in my head. I was suicidal, my husband contacted my gp, thankfully he arranged for me to see someone through the NHS but this took time. It took 3 years to get a diagnosis and another year to get an appointment with a pain clinic at an NHS hospital. I am so grateful that I am under a hospital that is at least trying to help me. It’s almost 5 years now since that fateful day.
Sorry for my late reply Penny. What an ordeal… I hope you’re getting appropriate treatment, that’s when my life started to change. Still reliant on daily help but at least I’m not in a 24 hour flare! No one can live like that. Hope things are looking up. Thanks for visiting the site, hope it was of some comfort.