Health Organization for Pudendal Education

Hello, my entire history is in Welcome center, it is entitled "Pudendal neuralgia from 12 years".
Today I was in Zurich for a visit with Prof. Mark Possover. He is sure that I haven't Pudendal Neuralgia!

These are the summary of this experience:

Clinical examination:
- Abdomen, inguinal and renal areas inconspicious
- Renal-Sonografy: Incospicious
- Neurological examination: no senso-motoric dysfunction of the lumbosacral nerves. Cremaster reflex normal.
Achilles/Patellar reflex normal. No troubles of motion de lower limb. anal sfincter tonus normal.
- Rectal examination: no pain at allby the palpation of the PN at the Alcock's canal; also no pain induced by the palpation of the sacral nerves root.
- Ultrasonic testing: Postmicturition, residual from about 30ml. No pre- or laterosacral varicosis veins.
- Urodynamic mit Urethraprofil & pelvic-floor-EMG: Bladder normosensitive, normotone, normoactive.

Recommendation:
I exclude a pathology as well of the pudendal nerve as of the pelvic sacral nerves. So I do not see any indication either for a neurolysis of the PN, or for a laparoscopic exploration/decompression of the sacral plexus. Also pulsed radiofrequency therapy makes no sense.
Therefore, the pain is produce more centrally. Because the pain disappears over the night, and reappears over the day, I should advice a neuroMRI of the conus medullaris to exclude a spinalcanal stenosis at this level, but also to exclude a vascular spinal malformation (fistula, aneurism) -> Prof.Dr. Vito Chiantera/Palermo.
As a first line treatment, I should advice Xatral.

Gabriel, I'm not sure whether this is a disappointment to you or if you are relieved. You have certainly suffered for too long. I wonder why they mention the Alcock's canal but say nothing about the ischial spine. The ischial spine is one of the most common points of entrapment and was where my worst pain was on palpation via the pelvic floor. I wonder if they palpated there. Are you going to have the neuroMRI of the conus medullaris?

Violet

I don't know about ischial spine, I can ask him via mail... Yes I 'm planning to do conus medullaris neuroMRI.

I am very relieved even though I've already been at other times in the past and then to suffer disappointments...

The RM-neurography doesn't show anything abnormal in medullary cone, I copy the report (traduction form italian):

"MR imaging of the lumbosacral spine showed the presence of a small median subligamentous disc herniation at L5-S1, causing obliteration of the anterior epidural fat, but without an overall effect on S1 roots.
The roots of the cauda equine appear regular in course and caliber. No signal alterations of the medullary cone.
Intraspongious hernia in the upper somatic plate of D11. Another small intraspongious hernia in the upper somatic plate of D9.
The study of the lumbosacral plexus, performed using the MRI Neurography technique did not show any abnormalities in the size and signal intensity of the lumbar and sacral roots.
There is no evidence of expansive intrapelvic injuries.
The femoral nerve in the intrapelvic seat and the sciatic nerves, explored starting from great sciatic foramen to the roots of the thighs, appears normal.
The internal piriformis obturator muscles are bilaterally normal in size.
Not alterations in the signal of the large muscles and middle left buttock. The bilateral internal piriformis obturator muscles are normal thickness. The ischial spines are normal in morphology and size. The profile and thickness of the sacred-spinous and sacred tuberous ligaments are regular.
The images of MRI Neurography show a slight asymmetry in the size of the pudendal nerve vascular bundle, from right> left near the Alcok canal, probably part of the anatomical variability.

CONCLUSIONS: No pathological aspects relating to the medullary cone and the lumbosacral plexus. No signs of entrapment of the pudendal nerve, except for a slight asymmetry of the size of the pudendal neurovascular (right > left), that could be due to anatomical variability."

I am very tired and depressed.

Possover can't help me, he said (via mail) that we could do a laparoscopic investigation but he not recommend it.

I want try to deepen the L5-S1 problem as I thought to do a few months ago (I posted about the relative De Bisshop study), perhaps "obliteration of the anterior epidural fat" may be a spinal canal compression sign.
I contacted Rajeshree Nundall de Bisschop via email and after explaining the case she told me that the only way to find nerve entrapment is the investigation with "staged sacral réflexes and specific pelvic ultrasounds" because there are many possible locations. I have seen that In the specific article is also mentioned the L5-S1 location.
Now I'm tryng to fix an appointment in Aubagne clinic...

Hi Gabriel,

I'm very sorry to hear Dr. Possover cannot help you. I'm sure this is a huge disappointment and I can understand why you are tired and depressed. I don't know anything about your history/symptoms but I think it makes sense for you to continue searching for answers through other physicians until you find one who can help you. It is exhausting though. Please keep fighting and searching for answers. If you have central pain maybe you want to consider reading Ezer's posts on this forum about the mindbody connection. If that doesn't match your situation, maybe you could try ketamine infusions.

Take care,

Violet

Gabriel I also think that it is rather kind of general pelvic myoneuropathy in your case, I am struggling more than 6 years with similar problems. Pain is probably a summary from several nerves, although pudendal nerve might play a prominent role in this havoc. I was also almost sure that I have PNE /pain in groin, scrotum, penis etc./, but block didnt delivered any change in pain pattern and I did not have any Tinel sign when pudendal nerve was palpated. My problems started as post-ejaculation pain, never immediately but day or two later...almost 15 months my pain were on and off before chronification. I think that the initial strain was muscular, inflicted by clenching/edging during climax, but then the cascade of neuropathic processes started so now we are struggling with psychomusculoneurological condition, which is hard to beat. I had substantial relief from PT, but am not cured. Operation is out of question because I dont believe that there is one place where the nerve is severed/damaged. Your case seems to be similar.

Flyer28, what kind of diagnostic exams have you done and where?
In my area there aren't specialized physical therapists, I made some attempts in the past spending money and travelling but I never believe very much in PT and then its hard to be constant in home exercises if you are depressed and don't believe in it...

Hallo gabriel, sorry for late reply.
Diagnostic tests>
1. 3Tesla MRI - according to dr. Aszmann in Vienna, there are some fibrotic thickening in right dorsal canal (my right side is worse) they might or might be not the underlying reason.
2. Palpation on the course of pudendal nerve - no Tinel sign anywhere
3. Distal pudendal nerve block under ultrasound control - no change in sensation pattern.
4. Digital rectal examination - many times, pelvic floor full of trigger points.
I am sure that I have some kind of pudendal neuropathy (because my chronic pain in groin, penis, scrotum, perineum is rather neuropathic in character), but not sure about entrapment (no place with higher sensitivity along pudendal nerve). After 2 or 3 rather good months when I was able functoning with rather low pain levels, since 3 weeks I am struggling again. Yesterday I had PT session, on 24.4. I am scheduled for Dry Needling and another PT work-up and hesitating whether I will try another block before summer.