Health Organization for Pudendal Education

(This was my first and old post I suggest you skip it and maybe go to my last post of Oct 2024)

Hi,

Anyone else with the same exact problem (present or past). Any success stories of dorsal nerve entrapment / decompression surgery? Please give comments / details if so.

For the past 2 months I've just been researching and studying anatomy (to just find a solutions, answers and explanation).

I woke up one morning with no feeling in the glans of the penis causing severe ED (no pain or any other issues). After a day or two I felt something was wrong so I even went for massage and I could barely get an erection with the touch of a woman which has never happened to me before.

All urologists prescribed PDE5 inhibitors and said it was psychological (my mistake of telling them I had been dealing with a breakup and feeling low since the past 2 months, but I had gone on dates and was able to get an erection just by even holding a girls hand) so I insisted that something was wrong and that this happened overnight. They all just said give it time.

One Urologist in the US via email suggested peripheral neuropathy and that not much could be done.

The first month I just thought I needed sleep, very healthy diet and it would heal as I had done blood tests, testosterone tests, etc and everything was fine.

The second month it really became clear that something was deeply wrong and it was somewhat related to the dorsal nerve as it connects to the glans.

I read about the TOMAX operation whereby they connect the ilioinguinal nerve with the dorsal nerve to regain sensation in the penis for those with spine related issues so I thought at the time this is the only fix and explanation.
I did an MRI of the spine lumbar sacrum and everything was fine, then I started to get worried.

My symptoms:
I just woke up one morning on the 28th April 2023 with a weird or no sensation in the penis.
Complete loss of sensation in the glans of the penis (i.e. touch or temperature cannot be felt) and severe erectile dysfunction (ED) as a result.
I have never had any problems obtaining an erection in the past (very strong sex drive and libido and very healthy erections every single morning).
No pain or discomfort in any part of the body including my spine.
I do have sensation on the circumcised area surrounding the frenulum (the small area in between the shaft & the glans which is like 1-2cm).I learned that this is connected to the perineal nerve and things started to make more sense regarding dorsal nerve.
I do have sensation on the shaft (I can feel temperature, but the sensation is odd).
I would describe my ability to achieve an erection as with 90-95% difficulty: almost incapable but technically possible if I try really really hard.
I'm relying on the little sensitivity of the frenulum area mainly and some shaft to feel something and get an erection which again requires an immense amount of stimulation.
An erection is possible only with an extremely forceful amount of mental/visual stimulation (this is probably something that confused Urologists and why they did not take this seriously, besides having seen no other cases like this one).
I have masturbated twice in the past 2 months since this started because 3 different Urologists had prescribed PDE5 inhibitors (Cialis and Viagra) and insisted I give this a try and try to stimulate and arouse myself and even masturbate and that the problem I'm having is likely psychological and had not taken my symptoms or my complaints seriously.
PDE5 inhibitors don't really work due to lack of sensation (the problem doesn't seem to be vascular)
So even if an erection is obtained there is still no sensation in the glans or pleasure in ejaculation - whether an erection is obtained with visual stimulation, PDE5 inhibitors or a Trimix injection.
I tried once Trimix at a Men's Health Clinic and the erection was at 50%. It felt very forceful, a bit painful and still resulted in no sensation in the glans.
I do wake up once in a while with a very weak erection (40% erect).

I had those same problems except I had no sexual sensation in the entire penis. I had pudendal nerve decompression and as of now blood flow is a bit better, but still no sensation. How do you think you got this? Also, does your glans inflate?

What do you mean by no sexual sensation in the entire penis? No sensation at all in all parts of the penis? Then it could mean pudendal, mine seems dorsal very specific to the glans. What do you mean by you had pudendal nerve damage? You don't anymore?

Achieving a full hard erection for me requires an IMMENSE amount of stimulation that is so hard to even explain (usually I can only get this visually and it takes a lot of time and effort) almost as if I'm forcing myself to get turned on and get an erection (here the glans do inflate I feel but no sensation in the glans is present). When I wake up with weak morning wood occasionally or I was semi erect during the Trimix injection session, the glans don't inflate much.

I want to have sexual desires / libido, but it's absent - a very strange feeling to describe as well.

It's extremely hard to say what caused it, I was dealing through a lot of emotional/mental issues 3 months ago which also led to some physical issues.
For about 2 months I literally slept about 2 hours per night max 3 hours (the rest of the hours I was resting in bed but no deep sleep, strong heart palpitations would wake me up and I would not be able to go back to sleep - I never took any sleeping pills or drugs just once or twice Melatonin (but it didn't work) and the melatonin was after the this had happened also. The lack of sleep obviously lead to physical weakness.
I took a DUTCH test and all my hormones and cortisol (stress) levels were just messed up. I took this as I thought my lack of sleep was causing ED and that with enough rest eventually things would go back to normal.That doctor prescribe magnesium as she said this is very important for your body, especially if its under stress and it would help with my sleep. My Vitamin D came deficient so she also gave me liquid supplement of it.
High DHEA, high cortisol levels, relatively high oestrogen levels but testosterone levels were fine (quite high actually).
I just thought I needed some rest and everything would be fine.
Because of the heart palpitations I thought stress or insomnia might be the cause. Then perhaps lack of vitamins.
One urologist a few days after this happened said the loss of sensation is common and its psychological (I now think this misled me but it was just the start of this so I didn't think too much), take PDE5s see if you get aroused and give it take (3-4 weeks) is what he said.
I even started to eat very healthy (eliminated pretty much all junk food, soft drinks etc and I was even taking about 5-6 different supplements such as Vitamin D, Magnesium, Omega3 and many others, also lots of fruits and vegetables).
Much later I just put something very cold and hot on my glans and couldn't feel a thing and that's when it struck me something is definitely very wrong and it has nothing to do with my sleep (which is now almost back to normal), heart palpitations which I don't have anymore, nor vitamin deficiency etc etc

By had I mean I had pudendal decompression surgery, and my symptoms are improving. It sounds that may be your case because your symptoms are extremely similar to mine. By no sensation I mean I have no erogenous sensation in entire penis.

How long did you have to wait to get the surgery?

Who diagnosed and performed the surgery and how long has it been? Hopefully it will continue to improve with time or do results from other people suggest it happens immediately?

I just don't feel the head of the penis (glans) but I can feel the other areas of the penis which indicates it's about the Dorsal nerve of the penis specifically.

''(Pudendal nerves) It divides into the deep and superficial perineal nerves, the dorsal nerve of the penis or clitoris, and the inferior rectal nerve.''

''The DNP provides sensory innervation to the glans penis''

Has anyone checked your pelvic floor muscles for tension/tightness? A good physical therapist should be able to assess you for any musculoskeletal abnormalities that could be contributing factors. Do you have any history of frequent exercise or injuries?

Since this is really concerning to you, understandably, what are your chances or your ability to see someone who specializes in pelvic neuropathies, including pudendal neuropathy?

Violet

I can look into it, thanks! But since my problem is specifically in the glans (and nowhere else), we can pinpoint the problem at the dorsal nerve.

I contacted Dr Aszmann, excellent plastic surgeon specialising anything nerve related. I've just regained a very tiny bit of sensation in the glans pretty much a day after microsurgery so far. It still feels funny down there but I have sensation and I guess the nerves need a bit of time to heal properly.
After emailing him he took a few days or a week to email me back indicating that this is most likely my problem dorsal penile nerve compression, I told him that I suspected dorsal nerve compression as in my case for 2 months I had no glans sensation and this is pretty much the only explanation (and I have no spine issues, diabetes no testosterone issues). He scheduled a webex call 2-3 weeks and a consultation fee of EUR500 after replying to my email. During the email reply I asked how soon could I have surgery as I was 100% sure this was my problem (its very specific just ED and no sensation in the tip of the penis the glans) and he was able to schedule me for surgery a month after our webex call.
Surgery was quick 90 mins, full anestesia, not really too invasive, not painful in my case. Nurses asked me if I needed painkillers after surgery and the pain was very bearable like 2/10. I was able to walk the next day around the hospital and released that next day at night, and was in Vienna post surgery for a few days as per his recommendation (not that it is needed just as a precaution being in the country to make sure I'm fine - unlikely there would be any complication but let's say there was it would be inconvenient and a big hassle to return back from my home country and get checked by him) so I was chilling in my hotel and I was walking around slowly and fine around the streets.

Thanks for that positive report. I have heard good things about Dr. Aszmann and I am glad to hear you are doing better.

Wishing you a full recovery.

Violet

Hi everyone
Just my advice, please don't even bother with this forum, it's alway "doctor Violet" trying to tell everyone what to do and what they might have. Look just stay in touch and work with the real specialists who actually operate and know about these types of issues. I have no doubt that Violet will be on this forum for the rest of her life telling others what to do. Someone complaining about complete numbness and she says to see a physio? You must have a very very low IQ Violet.
I hope the moderators on this website delete my account as it's disgusting how stuff just gets assumed and guessed on here when there treatment options out there. Please delete my account moderators and also violet please stop telling everyone what they might have wrong, your not a specialist okay?
John