PN or PNE? by stephanie prendegast

[helenlegs 11]

This is such a great article and of course exactly what so many of us want to know. . . . . . I haven't finished reading it yet, thought everyone would want to read it asap
http://www.pelvicpainrehab.com/blog/201 ... pn-or-pne/
Helen

[calluna]

Thankyou for finding this and posting it Helen!

I've just been reading the bit where she describes the sympathetic upregulation symptoms - I've had this for ages and have been told there is no explanation for it. People have hinted it was anxiety-based. Not true! Aaaaargh!

More to read....

[calluna]

I think that everyone should read this article. It is the clearest explanation of our common problem that I have ever come across.

Standout quote: "There is no way to determine whether or not someone has pudendal nerve entrapment prior to surgery."

(And from my own point of view -

"For example, if a patient who had no pelvic pain, had pelvic reconstructive surgery, and woke up from the surgery with shooting, stabbing vaginal pain, then that is likely an entrapment that probably needs to be surgically released."

This is exactly my situation. But unfortunately it has not been possible to either find or release whatever has happened to the nerve.)

The only thing in the article with which I would disagree is her description of pregabalin/(Lyrica) and gabapentin/(Neurontin) as neurolytic drugs.

If something is neurolytic then this means it is associated with neurolysis - meaning either destruction of nerve tissue, or freeing a nerve from inflammatory adhesions, or incising its epineurium for decompression. Pregabalin and gabapentin do not do any of these things.

I am sure she has simply picked the wrong word, easy to do - I am also sure there is a right word here, but I can't think of it. Anyway these drugs are anti-convulsants that are used for neuropathic pain.

[helenlegs 11]

Calluna wrote,

I've just been reading the bit where she describes the sympathetic upregulation symptoms - I've had this for ages and have been told there is no explanation for it. People have hinted it was anxiety-based. Not true! Aaaaargh!

Yes I was very interested in that too. Her explanation of how the pudendal nerves association with the autonomic nervous system, as it has it's own autonomic fibres, does make sense. I am taking it that this is a different thing to a central sensitisation? which can be 'overridden' OR probably re-re-sensitised so to speak, with cognitive therapies etc. If this is sympathetic upregulation of symptoms is connected to an 'automatic system' can it be regulated I wonder??
It is so nice to hear a rational medical reason for something that others describe as purely psychological.
Looks like there will be more interesting stuff to come too. Mind you,I have added a comment asking if she saw many people who had trauma onset other than only post-op (thinking of Violet, me and others) I have added my piriformis bit too , although she is essentially associated with the pelvic floor of course. I didn't want to feel left out

Helen

[birdlife]

Stephanie P says:

If a patient has a slow, insidious onset of pain that eventually becomes burning, then that’s probably not entrapment but rather myofascial pelvic pain that is affecting the pudendal nerve

That's what I've always felt about my own PN, and it's why I think TP massage is so effective in my case. But it's not a cure, got to keep on top of it all the time, the tendency for the p/nerve to worsen is constantly present. In light of Stephanie's great article, I wonder why I've been offered a decompression op. Would very much think that would ultimately add to any pre-existing myofascial pelvic problems
Thanks Helen, very interesting link!

[Jane]

Helen, Thank you so much for posting this article. I have been searching for some answers for ages. It is clear to me now that I have PN following an op that immediately I came round from felt as if I had a bonfire in my pelvic area - obviously something bad had happened! I have had right and left PN decompressions, was not given a lot of information about any findings but now 6 years post op still suffer with daily burning in all the areas listed in the article (female), making me think some branches of the PN are still trapped.

[helenlegs 11]

Helen

making me think some branches of the PN are still trapped

That sounds very possible Jane or it could be due to scar tissue from the ops ??. . . I noticed in another post that you mentioned Dr Greenslade, tbh his team at Bristol are the only ones offering PN decompression surgery in Britain at the moment so it might be worth getting a referral with him to see what he can recommend for you. It is such a shame that the procedures haven't rectified the problem. I wonder if it would be worth trying to contact Prof Carstedt at his London nerve clinic http://www.londonnervecentre.co.uk/ to see if they can provide you with information about your previous op's ie where the problem exactly was and what he found.

Hi LielaRose,
It is true, Stephanie is not a medical doctor, however as so many of us have been let down and mis diagnosed by medical doctors that may not be such a bad thing. I would also think that a good many people here have had their first indication that their problem may be PN from physiotherapists when doctors have been no help at all. I do remeber a blog talk radio show some time ago when Stephanie teamed up with Dr Hibner answering questions on the subject of PN and PNE. It was Dr Hibners veiw that a patients history of onset of symptoms was a huge factor in being able to identify if someone was entrapped and may require decompression surgery. Stephanie did not mention other trauma from a fall etc which is another reason why some people may be entrapped, this was mentioned by Dr Hibner and other medical doctors tho' so I don't think her article does cover everything, but apart from that I thin k it is is well written and I couldn't argue with a great deal of the rest of it. . . Then again I am not a medical doctor either.
What is your particular problem with what she had to say ?
Take care,
Helen

[birdlife]

LeilaRose said

All of the butt and genital pains (etc.) complained of here can be caused by (for example) kidney stones

We are all hacked off by previous misdiagnoses along the way, but kidney stones would be a rare one. Simple blood test/xray would rule those out straight away.
You don't like Stephanie Prendergast's opinion because she's not a doctor? And you don't like doctor's opinions because they all have some kind of personal crusade? Possibly in the States some practitioners might be guilty of that, private medicine and big bucks will ensure that happens somewhere along the line. You have consistent problems spelling SP's name so seems you have a personal crusade too. Many on here have been helped more by PT's than doctors, so give the lady a chance. We none of us KNOW, that's why this forum exists, to deliver all possible advice/support + info available. The choice is yours which you act on, if any.
.

[birdlife]

Simple blood test for calcium levels in the case of calcium stones, ordinary x-ray to see them with if large enough, ultrasound for stones caused by uric acid, and spiral CT-scans that can pick up cystine crystals and very small stones.

To say kidney stones can be mistaken for PN/PNE requires a huge leap of faith to a realm of fantasy. Or to quote your own words - unscientific and illogical and farfetched -- based on totally subjective judgments.

You know, you sound very much like someone else who used to post the same style lengthy 'arguments' on here under another username. .

[Violet M]

Hello LeilaRose. I feel like I know you. Have you posted on this forum before under a different name?

Violet