does anyone know how many people suffer with pudendal neuralgia in britian? (estimate)

[catfish]

[helenlegs11 Volunteer]

Good question catfish. What ever the answer is, if there is an official one (which I very much doubt! as officialdom hardly accepts that it exists) It can easily be doubled or trebled due to the number of people who are misdiagnosed.

[catfish]

hi helen, thanks for your comment. surely there must be some stats. how can so little be known about PN/PNE.

[Kitty12]

Hi Catfish

I've asked this question too ! I live in Ireland and have to travel to the UK for treatment as there are no consultants here that know what it is/can treat it.

That may partly answer your Q, quite literally is such an unknown disorder that there are no stats. I hope you are getting the necessary treatment and meds. Feel free to ask me any Q's, I've had 3 nerve blocks and am doing physio, and trying some new supplements : )

Kitty

[Sheilam in reply to Kitty12]

Hi Kitty, Wkhat a journey from Ireland to England for reatment for a condition suffered by so many! I don't find the doctors seem to take my description of the severity of my 'bottom' pain seriously, but I still cannot find any connection between the descriptions of PN on the internet and mmy, very much bowel related, symptoms. What treament are you getting from an English consultant? I have been on Pregabalin for some years, and I am sure that this should be available in Ireland. It is a ddrug specifically developed for treatint neuralgic pain. (I'm not sure that it helps me very much, however.) Where to you have to go to see a PN Consultant? What physio are you having exercise or actual treatment? I don't find my GP interested or sympathetic to my exdeavours to make her understand the severity of my pains. I was amazed to read how many cases are recorded in the USA. Did you have your nerve blocks with Dr. Baranovski? I had 2 CT guided ones with him fter 2 x-ray guided ones by Dr. Curran. BUt no tests have been done at all. I must get off my bottom - I know you know what I mean. All the best, Sheilam

[ezz1 in reply to Kitty12]

Hi...I have been in so much pain for over 3 years and I cannot believe I have nearly all the symptoms for pudendal neuralgia. I felt great when I came across a website as I thought I was going mad as none of my doc tors are listening as I have another medical condition. I was doing fine but then had a car accident and my life has been he'll since. Can you let me know who to see in ireland my gp not listening and my consultants either they think it's all to do with my illness even though they can't find anything wrong...Please help as I don't think I can cope much longer...

[pelvicmessenger]

There is not a specific number- anywhere. I can tell you as the National Patient advocate here in the USA for the IPPS(international pelvic pain society) that there are 30 million people in the USA alone suffering from CPP- chronic pelvic pain. This term CPP is inclusive of PN/PNE

Also- my Internationally known show "The Pelvic Messenger" has shows dedicated to PN/PNE with famous Doctors, such as Micheal Hibner, Dr. Dellon, Dr. Jerome Weiss and many more..

simply go to

blogtalkradio.com/pelvicmes...

click into On-demand/archive shows and read through the guests and descriptions. This will give you a TON of information.

Here in the USA we spend in direct healthcare costs for CPP 880 million dollars...

there is not currently any clinical trials in regards to PN/PNE-

[catfish]

thanks kitty12 & pelvic messenger for your replies.

[PPSN_JudyB Pelvic Pain Support Netwo]

It's not a large number of people, in fact it's probably a "rare" condition. The most work on this has been and is being carried out in France. The figure for all chronic pelvic pain (CPP) conditions in the UK is 1 million women. This is published research based on work done in primary care. If dysmenorrhoea is included the figure is higher. There is no data for Europe as a whole.

CPP has usually been omitted from much of the chronic pain work but PPSN ( including this message board ) is working hard to get it included by contributing to and participating in National and European events on chronic pain to make it more "visible". We would love more people to get involved and to help us with this.

Please get in touch with your ideas.

[Kitty12]

Hi Sheilam

I'm seeing Dr Greenslade in Bristol. Just got lyrica last week and seems to be helping. I've had 3 nerve blocks. The physio I am seeing is working on my general posture and helping release tension in the pelvis. Does help !

Best wishes

Hetty