Health Organization for Pudendal Education

Wow, after reading that it sounds like he has it down to a science! How much is fact or opinion is my question?

What I found interesting was this comment,

THE PUDENDAL NERVE DOES NOT GO TO THE BUTTOCK OR THE ISCHIAL
TUBEROSITY, AND SO PUDENDAL NERVE PROBLEMS CANNOT CAUSE PAIN IN
THOSE AREAS.

From the same paper,

NANTES CRITERIA FOR PUDENDAL NERVE ENTRAPMENT*
Essential Criteria
1. Pain in the territory of the pudendal nerve; anus to penis/clitoris
2. Pain is predominantly experienced while sitting
3. Pain does not awaken the patient at night
4. Pain with no objective sensory impairment
5. Pain relieved with diagnostic pudendal nerve block
Complementary Diagnostic Criteria
1. Burning, shooting, stabbing pain, numbness
2. Allodynia or hyperpathia
3. Rectal or vaginal foreign body sensation
4. Worsening of pain during the day
5. Predominantly unilateral pain
6. Pain triggered by defecation
7. Presence of exquisite tenderness on palpation of ischial spine
8. Clinical neurophysiology findings in men or nulliparous women
Exclusion Criteria
1. Exclusively coccygeal, gluteal, pubic or hypogastric pain
2. Pruritis
3. Exclusively paroxysmal pain
4. Imaging abnormalities able to account for the pain
Associated Signs not Excluding the Diagnosis
1. Buttock pain on sitting
2. Referred sciatic pain
3. Pain referred to the medial aspect of the thigh
4. Suprapubic pain
5. Urinary frequency and/or pain after sexual intercourse
6. Pain occurring after ejaculation
7. Dyspareunia and/or pain after sexual intercourse
8. Erectile dysfunction
9. Normal

Oh well, then......I must not have ever had pudendal nerve entrapment if I go by Dr. Dellon's quote or the Nantes criteria.

I had pain in the buttocks and near the ischial tuberosities, and believe me, PNE woke me up at night -- the shocks especially!

My guess is that while these criteria, etc. may be helpful in the diagnosis, they do not necessarily hold true in every case. The reason I say that is that when the pain becomes severe it can be referred all through the pelvic region causing many muscles to go into spasm and it can be difficult to localize the exact source of the pain.

Violet M wrote:Oh well, then......I must not have ever had pudendal nerve entrapment if I go by Dr. Dellon's quote or the Nantes criteria.

I had pain in the buttocks and near the ischial tuberosities, and believe me, PNE woke me up at night -- the shocks especially!

My guess is that while these criteria, etc. may be helpful in the diagnosis, they do not necessarily hold true in every case. The reason I say that is that when the pain becomes severe it can be referred all through the pelvic region causing many muscles to go into spasm and it can be difficult to localize the exact source of the pain.

hahaha!! I know what you mean! I was told my pelvic pain was "referred pain" for years, because I was diagnosed with interstitial cystitis (IC), and told that my bladder was causing the pain in my vulva instead of the other way around.
When I was finally diagnosed with PNE by Dr. Jerome Weiss in 2006 it was a revelation. Instead of my sick bladder causing nerve pain, it was the damaged nerve causing bladder pain! Specifically, the perineal nerve, which branches off the pudendal nerve after it exits Alcock's canal and goes to the urethra and base of the bladder.
And now I am wondering if everything we call "pudendal nerve entrapment" can sometimes be other things, such as entrapment of one of the cluneal nerves? I keep hearing about the "posterior femoral cutaneous nerve." A friend of mine who had surgery on this nerve with Dr. Dellon is now sitting, walking (even uphill) and getting back to a full life. I am thrilled for her! On page 4 of the chapter it says: "Injury to these inferior cluneal nerves is one of the main causes for pain with sitting, in addition to pudendal nerve problems."

I wonder how much more we are going to know in just a few short years, and how much it is going to change treatment options.

Lottanerve, you are absolutely right with how much more we will know in a few years that will improve treatment outcomes. It is also great about your friend who had the PFCN surgery that is doing great. I am so happy for her.

nyt wrote:Lottanerve, you are absolutely right with how much more we will know in a few years that will improve treatment outcomes. It is also great about your friend who had the PFCN surgery that is doing great. I am so happy for her.

Thanks nyt....
I need to look up the PFCN - posterior femoral cutaneous nerve - I still am not clear about its location or the area where it refers pain.
I know someone who thought they had PNE - pudendal nerve entrapment - who actually had PFCNE - posterior femoral cutaneous nerve entrapment!
That is quite a lengthy acronym!

Does it seem like PNE has become a catch-all term for pathology with any of the nerves that could be causing pelvic pain?
(I know I need to improve my knowledge of other nerves besides the pudendal nerve.)

I'm fortunate because I get curious and want to look it up. If it was like studying for a test I wouldn't want to do it!

I've learned on this journey that I have to take control of my own care, which means knowing enough to make good decisions.

Lottanerve, I think that is an excellent point that there are many nerves in the pelvis and we can't just settle on the PN as the source of the problem. It's great that your friend is doing so well and I am glad there are docs like Dellon who are thinking of possible new sites of entrapment. I guess I am lucky in that PN release surgery was successful even though I didn't fit the exact published criteria for PNE.

Lottanerve,
The following drawing shows quite well the post. fem. cutaneous branch (in relation to the pudendal and the sciatic nerves):

LottaNerve wrote:

nyt wrote:Lottanerve, you are absolutely right with how much more we will know in a few years that will improve treatment outcomes.

Thanks nyt....
I need to look up the PFCN - posterior femoral cutaneous nerve - I still am not clear about its location or the area where it refers pain.
I know someone who thought they had PNE - pudendal nerve entrapment - who actually had PFCNE - posterior femoral cutaneous nerve entrapment!
That is quite a lengthy acronym!

It's fantastic that all of this newer information is coming in as you say in a few years time a diagnosis will hopefully be more exact, improving treatment outcomes.
I don't think that every medical 'expert' in this area always knows about these separate areas that can cause problems as their own clinical tests for PN are usually concentrated on entrapments from the distal end of Alocks canal and upwards. In fact it is probably too difficult to remain an expert with all of the emerging information.
Unfortunately, this can lead to a 'not PN' diagnosis which can be devastating as people are usually at the thin end of the medical wedge by this time. (It may be that listening to a patient and the history is the most valuable diagnostic tool.) Nerve pain is so singular, those symptoms can not be attributed to anything else the question remains why is that nerve pain happening and which god damn nerve is it ??
That's where HOPE is invaluable, with such a participation from interested people willing to advance their own and others medical diagnosis and treatment . I wish that everyone with pelvic nerve pain or an interest in it will be able to find us.

LottaNerve wrote:Does it seem like PNE has become a catch-all term for pathology with any of the nerves that could be causing pelvic pain?
(I know I need to improve my knowledge of other nerves besides the pudendal nerve.)

I'm fortunate because I get curious and want to look it up. If it was like studying for a test I wouldn't want to do it! Ha Ha I relate to that so much, I do find the whole thing rather interesting too, just wish we didn't have it!

I've learned on this journey that I have to take control of my own care, which means knowing enough to make good decisions.

That's probably partly due to the fact that you have become more of an expert than many of the medical community .

Ezer, after looking closely at the diagram you posted it seems to me that anyone who develops piriformis syndrome could have pudendal, sciatic and posterior femoral cutaneous nerve pain and probably even cluneal nerve pain. I know my piriformis has had some improvement on the operative side so some of my sciatic and PFCN pain has been slightly improved. It just shows the complexity of diagnosis, how one problem can lead to another, and figuring out the origin of the problem is key.