Blogtalk radio with Dr Hibner and Stephanie Prendegast

[helenlegs11]

I have just listened to this very interesting show blogtalkradio.com/show3.asp...

Which deals with pudendal nerve entrapment (PN/PNE) or "pelvic pain sydrome" as Dr Hibner is terming it.

Of course most people who have been diagnosed or suspect they may have PN will be interested but I would advise everyone with pelvic pain to listen to the show, it is just over an hour long.

During the interview Dr Hibner and Stephanie Predegast relate how quite a few pelvic patients diagnosed with endo and/or IC go on to develop pelvic nerve problems because of muscle spasms etc, or maybe have some nerve compression as well as other more recognisable gynaecological and urological pelvic problems simultaneously.

They talk about reflex sympathetic dystrophy (RSD) symptoms and how complicated the whole pelvis and pelvic problems can be.

Dr Hibner actually stated that there is a huge overlap of symptoms with IC and PN and if a patient has been diagnosed and treated with IC for some years with no improvement they actually have PN!

Some women who had been diagnosed with IC for 10 years plus, then tested positively for PN as well, and sometimes exclusively.

At last with this correct diagnosis he was able to help with appropriate treatment.

They also talk about many neurological symptoms being helped with physiotherapy when they are of myofascial origin and not true nerve entrapment, especially if they are 'secondary' problems due to other pelvic issues.

The programme covered many other pelvic pain subjects including the struggle for diagnosis, nerve compression, surgery, recovery and more. . .

I was particularly interested in Dr Hibners newer selected, guided blocks to try and determine exactly where the pudendal nerve is compressed which is so important for any following surgery and his other advancements or tweaks to his surgical procedure since his training with Prof Robert in France.

The man actually gave his time while on holiday which shows how passionate he his about his work.

The shows host asked everyone who listens to print something from pelvic pain.org site or similar and take it to their GP or other clinician to help pelvic awareness in the medical community.

I took an excellent letter ( HOPE Letter to Medical Professionals.pdf ) in to my GP explaining about pudendal entrapment, she glanced at it fleetingly and shoved it in my ever expanding file. I could think of somewhere better for her to shove it.

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Helen,

I know both of them and will listen to the programme if and when I've got a free hour !

Some of the developments are really about pain management before, during and after surgery and interest in this from the medical community is increasing. R Riant ( Nantes ) did an excellent presentation about this at the recent congress in Istanbul.

M Hibner was meant to be there but didn't make it. It may an idea to take our pudendal neuralgia and/or nerve blocks for CPP leaflets to your GP because it has the Information Standard accreditation which is a recognized kitemark for quality patient information that is evidence based. He was one of the reviewers for this information along with other clincians from France and Australia who were all at our original meeting about patient information which was at the ConvergencesPP congress in Nantes in 2009. Rachel Z who has started a PPSN community blog on here did the presentation for us about patient information "What do patients want and what do they get ?" at the congress in Nantes. I think doctors will take notice of information that has the IS because it is recognized by NHS Evidence which is part of NICE. This is important because if it's just something printed off the Internet, there's no way to know how reliable it is without a quality kitemark.

[helenlegs11 Volunteer]

Yes Judy, it would be ideal to have that whole package as you say before,during and after any surgery, including provision of good pelvic physiotherapy.

It's not an impossible task. I'm sure we have excellent people here who are just as committed and could work in synchronicity.

Fortunately you don't know my GP, she won't be my GP for very much longer.