Health Organization for Pudendal Education

calluna wrote:Hello John - I have just been replying to a post from you on another thread!

I too felt that I had found a lifeline when I discovered this site - well, the old site actually, but you get my meaning. I would echo what gracie says about seating - I have got so used to the fact that I do not sit except with my cushions, that I have almost forgotten about it. And it is very important! I am one of those who uses cushions, either a doughnut cushion, or a soft pillow, or a boppy or widgey pillow (I got mine from Amazon).

I think it is interesting that both you and I have immediately found doctors who are familiar with PN - maybe there is greater recognition of this in the UK? The Pain Clinic have told me that they've dealt with it several times.

I hope that all goes well with your nerve blocks, and I hope that you are soon referred to a good Pain Clinic, too!

Hi calluna, I just read your response to my post in the other thread also. You will see from my reply to Gracie that I have now got one of those doughnut cushions, and early experience of it is good.

As you say calluna, it is interesting and encouraging that we both immediately found doctors who are familiar with PN, so maybe there is greater recognition of it over here. Whilst I am sorry for others like you who have the problem, it does at least give a degree of comfort to know I'm not the only one!

Roll on Monday, let's get the nerve blocks done and see how we go from there. I'll let you know how it goes.

Thanks for replying.

John.

calluna wrote:Hello John - I have just been replying to a post from you on another thread!

I too felt that I had found a lifeline when I discovered this site - well, the old site actually, but you get my meaning. I would echo what gracie says about seating - I have got so used to the fact that I do not sit except with my cushions, that I have almost forgotten about it. And it is very important! I am one of those who uses cushions, either a doughnut cushion, or a soft pillow, or a boppy or widgey pillow (I got mine from Amazon).

I think it is interesting that both you and I have immediately found doctors who are familiar with PN - maybe there is greater recognition of this in the UK? The Pain Clinic have told me that they've dealt with it several times.

I hope that all goes well with your nerve blocks, and I hope that you are soon referred to a good Pain Clinic, too!

Hi again calluna, can you read my post "Help please" I am hoping you might be able to give me some names of Specialists, as I just had a bombshell dropped on me when my Insurance Company say the Specialist I was referred to is not covered by them. I can't afford the treatment privately, and after all that's why I have Insurance.

Kind regards,

John

the hospital in Queens square is very experienced in PN problems, you can have your nerve blocks on NHS. Also Greenslade in Bristol. Presumably you are having an injection for diagnostic reasons? Why is it thought you have PNE? What are your symptoms? I think the injections are about £900 so the other option is to save for one?
Hilary, also in UK
Carlstedt is the surgeon in UK but you are obviously a way off that yet.

Hilary, apologies for the delay in replying to your post, just trying to deal with this thing is challenging enough as you all know. I am booked to see Dr. Branowski and thankfully they had a cancellation which means I get to see him on 21 Dec. instead of Feb 2011. I intend going the NHS route for treatment, but in the short term I will pay for my consultation and hope that NHS treatment won't be too long in coming, we'll have to see.

I did go to see Prof. Carlstedt and explained my symptoms, rectal burning, pain when sitting and he told me that PN is the likely problem but I must see Dr. Branowski for a confirmed diagnosis. I have had various other tests to eliminate other things, Ultrasound, 2 MRI scans of pelvis and lumbar spine, and a Colonoscopy, all of which have shown negative.

I have resigned myself to the fact that a cure at whatever level is a long way off, every day is just an existence really, and not a great one at that. Trying to stay positive, but reading some of the posts on here and the difficulties people face is really quite scary.

John

Hi John - don't forget that some of us are doing ok, though! Life should not need to be 'just an existence' - pain management is available and it does usually work pretty well.

My pain is under control, and has been for a while now. For instance, today things have been pretty close to normal. I have done the weekly supermarket shop, including driving myself there and back, and I've also taken the dog for a good walk.

I'd hope that being 'normal' again - through management as opposed to 'cure' - would be within reach for you, too. Are your doctors not considering a pain management programme for you? At least in the interim?

Hi John

I too am managing very well on pain management with my PN prescribed by Dr Greenslade. I take a combination of Lyrica and Venlafaxine, which works well for me. I'm not even on the full dose of Lyrica and I still manage to hold down an office job. I have had to adjust my working environment and have now got a height adjustable desk and a Orangebox Giroflex chair (also recommended by Dr Greenslade) and stand for most of the day.

Dr Greenslade is an excellent pain management consultant and has a special interest in PN.

My employers have been very good following the recommendations and your employers can actually get some help with the cost of equipment you need to stay at work under the 'Access to Work' scheme in the UK.

Let me know how you get on with your nerve block, and Dr Barnowski.

Believe me you are amongst friends here and there is endless sources of information and support on this website.

I could not have got as far as I have without it.

Cheers
Peaches

Hi John
Good to hear from someone else in UK. Im in West Yorkshire. Had PN for some time now, but didn't know what it was for many years. I had to go all the way to Bristol for a diagnosis. Your story sounds similar to mine (had all those tests too) and I also do a desk job. However I now have a height adjustable desk and reclinable chair as recommended by Dr Greenslade in Bristol and it working for the time being.
I know what you mean about depression. I think sometime it goes hand in hand with this condition and please be assured you are not alone there. There are many of us who have felt this way at one time or other. My only advice on that matter would be to get the despression treated soon as you will feel much more able to cope. If you're stronger you think more positively, so forget any stigma attached to treatment and spk to you GP. This site (and the old one) have helped me enormously and I wouldn't be where I am today without it. Take care and stay strong. Feel free to ask questions.
Cheers
Peaches

John,

How did the nerve blocks go? I'll be seeing an anaesthetist for my first nerve block next month.

Regards,

Lernica