Pudendal nerve evoked potentials

Therapeutic Efforts Doctors & Therapists
#1

Good forum, I have been suffering pfs for 16 years, you can read my story. Currently the only symptoms that persist are sexual and urinary, and some more subtle and less unpleasant, such as body odor and a slight intolerance to intense exercise (the latter does not always happen to me and is quite mild, exercise gives me more benefits than damages).
I recently had a test to see the state of the pudendal nerve (evoked potentials) and I was diagnosed with peripheral mononeuropathy of both nerves.
pudendal nerves, of a demyelinating nature, with involvement of the thick sensory fiber and fine fiber, of
mild intensity and left predominance.
This would explain all the sexual and urinary symptoms that I maintain, according to what the doctor told me, even the lack of libido, although not the body odor. I have read in this forum a multitude of threads about herbs and hormones that in the end seem to lead to nothing, and something about pelvic floor therapy, but nothing about recovering the pudendal nerve, nor the test that I have done. I would like to know if anyone else has dealt with this.
My current plan of attack is:

  • Test of evoked potentials of the pudendal nerve (already done)
  • Physiotherapy of the pelvic floor (if this is not enough, which is the safest):
  • Mild surgery (pulsed radiofrequency) + PRP + hyaluronic acid, to recover pudendal.
  • Again pelvic floor physical therapy
  • Shock waves combined with andractim + hcg, to cure fibrosis and try to recover penis size.
    I would like to know if anyone else on the forum is following this approach, it seems strange to me that I have not read any post about damage to the pudendal nerve, despite the fact that there is a study by Melcangi on this.

Thank you and strength to all

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#2

This is a very important post and I thank
You for taking the thought and time

Yes nobody seems to be acknowledging this.
I need a plan of attack as well

Can I ask what are your symptoms in this regard.
Is it pain mostly?

#3

My pelvic floor physical therapist acknowledged that some of my symptoms might be due to something to do with the pudendal nerve. Haven’t yet had it investigated more.

Oddly, and somewhat consistent with others, my left side is more impacted than my right across the board.

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#4

Very interesting. Having this kind of diagnostic is what I’ve been aiming for myself.

Guess I’ll go after it even harder now. My urologist already said he’d send a referral to a neurologist if I didn’t have any success with his treatment.

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#5

For what it’s worth: I had a uro-EMG done twice to test evoked potentials of the pudendal nerve. The first test (low quality however) revealed latency on the s2-s4 bulbocavernosus reflex, but the second test was unremarkable. It did however find slightly higher aesthesia thresholds. But nothing that alarmed the neurologist.

Other neurological testing revealed no abnormalities.

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#6

Well, honestly, I don’t understand it, especially when there is a study by Melcangi. The more I read and ask about the pudendal nerve, the more it fits me with all the symptoms I have, I have also been diagnosed with pelvic floor dysfunction a few days ago, and myofascial syndrome of the levator ani muscle, treating this together with fibrosis of the penis ( pending confirmation), I hope to notice substantial improvements, if not have a normal sexual function.

Apart from the urinary and sexual symptoms, I also have slight pain in the coccyx, especially when I ride a motorcycle or sit for a long time on something hard.
I think any PFS with genito-urinary symptoms, especially numbness and numbness, should look at their pudendal nerve and pelvic floor.

#7

In my case, it is also the left side that is most affected.

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#8

Very interesting post and diagnostic finding.

Part of my symptoms, the empty feeling in my crotch area and the loss of brain-penis connection could very well be a result of pundendal nerve damage.

It is definitely something I’m going to discuss with my doctors.

Imagine if many of us could show we have pudendal nerve damage, this would mean a huge step forward because we would finally have a tangible objective symptom to prove this syndrome actually exists.

We could set up research with PFS victims compared to normal controls. This would really be a break through.

#9

It strikes me that this topic had not been looked at more in the forum, I insist again.
I am from Spain and we have a WasApp group, we have had three tests, and all three diagnoses are the same with a greater or lesser degree of affectation.
by the end of the month another two are going to do it, I’m sure based on their symptoms, that the same thing will come out.
I will comment on news

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#10

“We have presented the first objective evidence
in PFS patients of peripheral neuropathy of the pudendal nerve which is critical
for normal neurogenic control of erection. PN_SEP abnormalities were found in
25% of PFS patients, in spite of normal neurological examination and no prior
history of neurological disease.”

I’m surprised this hasn’t been picked up yet for further research. Imagine a large comparative study between PFS sufferers and normal controls. If there is actually a 25% difference between PFS sufferers and controls, this would in turn be a reason to take finasteride off the market. Especially if these are people without any neurological prior history.

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#11

From my research it seems that DHT and DHP is some of the most important hormones for nerve health.

Interesting enough those two are the ones that have been consistently low in all PFS patient studies and also they are both direct products of 5 alpha reductase…

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#12

I had them done too. Same diagnosis: pudendal nerve mononeuropathy (left) along with myelin damage.

Treatment (still awaiting): Pulsed Radio-Frequency intervention, applying hyaluronic acid and PRP around the nerve.

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#13

I had this done too abt 10 years ago and it is present in some patients with PFS but not all for some reason that is probably of interest. I don’t think it necessarily means there is damage but they just used SSEP test on me which measured nerve function and not necessarily evaluated the structure.

#14

This is interesting
How did you come to know of this treatment?

#15

If a function with an external stimulus has latency, I understand there is damage in the structure. That was the doctor’s interpretation, well-known in his field in Spain. He did a 16-pages report to assess it.

#16

I visited a neurophysiologist and an expert on pudendal neve and chronic pain.

#17

Did all you guys dicks never go back to normal or near normal down the years?

#18

Hi, I think this is a very interesting topic. Any updates from those being in touch with doctors or forming an “attack plan”? Thanks

#19

there’s impaired function as objectively measured by the test but there can maybe be many different reasons or causes of impaired functioning

i wouldn’t jump to the conclusion that there’s structural damage especially irreversible even if impact is long lasting and doesn’t seem likely to reverse without the right intervention

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#20

Idk wtf to think anymore because I’m at a loss for words with this

I hope and pray to Hod every day for this to be healed

Genuinely scared