Health Organization for Pudendal Education

I recently saw Dr Greenslade about my long term pudendal neuralgia. He recommends that I have surgery and has given me the details of Dr Wong.

One thing he said I have not heard before and I wondered whether others could express a view? He said that my pain was only going to get worse over the years if left untreated. I had thought up until now it would simply remain at the current level but apparently not. As I get older the ligaments will continue to calcify causing the pressure and pain to increase.

The surgery will stop this in its tracks. The pain will either stay the same as it is now or possibly the pain will lessen if the nerve recovers. It will never get worse as the cause has been removed. Both ligaments entrapping the nerve will be cut. It will be completely free and apparently I don't need either ligament to lead a normal life?

This makes the surgical route very attractive but apparently Mr Wong hasn't done that many operations. I am tempted to see if it is possible to go to France if the prognosis of certain deterioration really is true?

Any experiences or views would be enormously appreciated.

Thank you.

I saw Mr Greenslade last Nov and he said exactly the same thing to me, told me I had bilateral entrapment and needed surgery asap. I was in such chronic pain that I had surgery 5 weeks later Mr Wong was the surgeon. He cut and removed both ligaments and was told I didn't need them. However post surgery through contact with people on the forum there is some evidence to suggest this type of surgerical approach can lead to further health problems so do your research. Since surgery I have not received any after care as promised was told by Mr Greenslade sec after surgery when I tried to book an app with him that I was no longer his patient and was not allowed to see him, strange as I was paying for it privately.
I don't want to sway your decision as its a personal choice but many people have spoken highly of excellent after care if you went to nante. I've been ignored and out on a limb.
If you want any more details regarding surgery I'm happy to help. The surgery is tough but the body does heal quickly but sadly the nerve pain doesn't, I'm still in chronic pain 4 months post surgery.
Take care and do your research this forum is invaluable and can help you make the right decision for you.
Good luck

Positivepoppy

I am sorry that you have been treated in this way especially if you were promised aftercare. I am not sure how long you have been on the forum but a similar thing happened to Andrea (Chillijava) after her private surgery in Bristol. Andrea doesn't seem to post anymore but you may be able to find her old posts if you wanted to pm her.
I have had gallstone and anal surgery done privately with the Bupa insurance i had at the time -although i was able to contact the surgeon both times afterwards for any questions through a secretary i don't think going private necessarily means 'better' if you follow my meaning. I was able to queue jump with my gallstones and not wait for 16months in pain which was a main reason for me.
Will your GP be able to get you into some pain management locally ? There is a lady called Doreen (Quilter) on the forum who at one time posted a list/protocol of things to do and not to do after surgery from a surgeon to help recovery . Have you found it on the forum ? I think Karyn may have put a list somewhere too from Dr Conway - i will try and find it for you.

found it http://www.pudendalhope.info/forum/view ... =44&t=1375

Rosemary X

Thank you rosemary for your advice and kind words. I've had everything done privately including the hysterectomy that was the beginning of this nightmare. I'm fortunate I have an excellent GP and now referred through NHS and started physio sessions with a lovely lady that has shown real empathy and concern.
How are you, have gallstones been sorted and are you well?
I'm not a cynical person quite the opposite but have felt like a "cash cow" , parted with over £12,000 and no care from any of them, makes me sad but have faith in humanity and being on this forum restores my trust.

Thank you for the link, thankfully I stumbled across after surgery but more luck than judgement!!

Thank you for the link, thankfully I stumbled across after surgery but more luck than judgement!!

Positivepoppy

My gallstone problem was in 2000 and i am well recovered from that - but thank you for asking - i didn't mean to concern you with that at all - please take care of yourself.
My problem is now vulva nerve pain which is why i am on this forum looking for answers.
I am glad that you have a good GP - i read that you got quite emotional when you saw the physio - it is just nice when someone shows some empathy and kindness when you are going through this personal battle to get well again - i felt the same when someone just touched me at acupuncture.

Rosemary x

Hi holly
How are you feeling, have you managed to research surgery in more detail. If I can help to answer any questions please post
Take care

Hi rosemary
Thank you for your kind words, glad gallstones not a recent problem on top of nerve pain, that's more than enough in itself.
This condition is quite unique in that the emotions can have a direct impact on the physical . When I get mentally stressed it can cause a flare up in pain, when treated with care and compassion it helps to ease the electricity and stinging! Would not have believed such a thing possible until experienced it first hand.
Take care, hope pain is more manageable for you