VVS and PN

[Holly]

Hi Mary Jane,

I was told it was PN (actually PNE not PN) from having numbness for an hour or so after a pudendal nerve block. It made the whole area numb including the bit that actually hurts and this seemed to be sufficient as "proof".

I do wonder whether this is correct. at the time just having a diagnosis meant so much I trusted the professionals and assumed they were right. As all avenues have now been exhausted bar surgery it would be great to think there might be another angle to explore.

HX

[Violet M]

Holly, I'm not sure I would agree with the assessment that if a PN block relieves your pain that is proof that you have PNE. According to Prof. Robert in the Nantes criteria article for a diagnosis of PNE it seems that he would also disagree. That article states the following:

"Pain Relieved by Diagnostic Pudendal Nerve Block
Anesthetic infiltration of the pudendal nerve9 significantly
relieves pain for the duration of local anesthesia. This is an
essential criterion, but is not specific as it simply indicates
that the pain is situated in the territory of the pudendal
nerve; pain related to any perineal disease (e.g., anal) would
also be relieved by pudendal nerve block and other types of
nerve lesions would also have a positive diagnostic block
when they are situated distal to the site of infiltration. A
negative block does not formally exclude the diagnosis when
it is not performed with sufficient precision or when it is
performed too distally (e.g., in the pudendal canal, while the
pudendal nerve lesion may be situated at the ischial spine)."
http://www.pudendalhope.info/sites/defa ... iteria.pdf

So, if you go by what that article says, a positive diagnostic block would just mean your pain is coming from the area of the pudendal nerve. It would not mean you have an entrapment (PNE). I don't know what all the avenues are that you have tried. There are a lot of different options besides surgery.

Violet

[Holly]

Thanks Violet,

I share your scepticism and am very aware that my pain is far less extensive than others' as it affects only the vulva rather than being an internal pain. I suspect the inability to sit has confused those trying to diagnose me as this is common to PN and vulval pain evidently!

I have had the spectrum of drugs as well as nerve blocks, PRN, pain physio sessions and pain psychology sessions. I have seen both the London and Bristol teams in the U.K. as well as corresponding with Prof Robert in France. The Bristol team were keen to operate as I must have PNE... London team said don't operate as you have PN and in any case they are totally against operating... Prof Robert said I met his criteria to operate but I still have doubts.

Cryoablation appeals as all I need is a small area not to feel and away I go! The London team is very against cryoablation however, they claim they stopped doing this years ago as it doesn't work. Hearing about what is happening in Atlanta does not change the view on this for them.

I would find it all easier if the professionals could simply agree but certainly in the UK there are some polar opposite views.

Thanks though for your thoughts. They are always valued.

Holly x

[Violet M]

Holly, I don't blame you for not wanting to risk a major surgery. Another consideration is whether there is pain and tenderness right on the pudendal nerve during a pelvic exam. It not, and if there is just some localized damage from having a little spot removed surgically, than maybe some massage of the area and some hot and cold sitz baths will help heal the damaged nerve endings over time if that's what the problem is. Also regular exercise to increase blood flow to the areain order to promote healing might be helpful but you would want to avoid any type of exercise that irritates the nerve. Since it's localized pain, does something like lidocaine or extra strength vagisil with 20% benzocaine help? You could also try cold laser therapy to that local spot.

Violet