Penile numbness/pudendal nerve injury - 8 months post injury

[AL456]

I’ve posted on here before. 8 months ago I had a bad fall on the buttocks that resulted in a fracture injury involving the coccyx and immediately suffered from genital numbness (glans are numb to an ice cube) and numbness to the anus. Other symptoms include very weak orgasm feeling, and pain when sitting or laying on the buttocks region, as well as an on and off “electric zap” feeling in the glans (the zaps have dropped considerably now). These symptoms remain 8 months later.

What I’ve done so far:

- Pelvic PT (5 months)
- 3T MRI of pudendal nerve/pelvis with a special protocol used by an expert in the pudendal nerve which didn’t detect any compression of the nerve. (I’ve heard this doesn’t totally rule it out)
- MRI’s of spine ruling out any issues.
I’ve decided against nerve blocks and Botox as they won’t fix the sensation and functional issues.

I’ve consulted with two surgeons specialising in the pudendal nerve.
One of them saying that I absolutely have a compression of the pudendal nerve from the impact and most likely require surgery saying to leave it no longer than a year as this numbness may become permanent.
The second surgeon saying that due to a clear MRI and the fact that there are many risks with the surgery that they don’t necessarily think I should do nerve release surgery but will do it anyway if I absolutely wanted to but gave me a 50/50 in regards to recovery from the symptoms as there is apparently not a lot of data regarding numbness according to their numbers. He also said it may be the case that there’s no entrapment of the nerve but instead the nerve was stretched or crushed from the impact of the injury.

So.. has anyone recovered from genital numbness and the other issues I’ve raised without surgical intervention in similar circumstances?.
So many different medical opinions too can make decision making difficult and also not knowing if the nerve is compressed or directly damaged from impact.
At 8 months I start to wonder if it’s possible for natural healing, but also understand the risks of surgery but am trying to weigh up all options and looking to hear some stories from people who have overcome this issue.

And also In regards to surgery, has anyone done the surgery and had success in restoring penile sensation and the functional issues I’ve mentioned?.

[Violet M]

Hi AL,

I can't speak from experience, but you might want to read the section in the Nantes Criteria article that has the heading: Pain with No Objective Sensory Impairment

https://www.pudendalhope.info/wp-conten ... iteria.pdf

The article was written a few years back so, I don't know, maybe the surgeon who is recommending surgery knows something new.

Does the surgeon who says you absolutely have a nerve compression have any statistics on how many surgeries he's done to relieve such suspected compressions for loss of sensation, and what the success rate is?

I know it's always difficult weighing the risk vs. the benefit when considering surgery. Is your quality of life so bad that you willing to risk possible worse symptoms as opposed to permanent numbness. It can be an agonizing decision.

There's a guy who posted about some success a little while back with username Staypositive. You might want to do an advanced search on his posts (in the upper right corner). I think he posted 19 times.

Violet

[AL456]

Hi Violet,

When they say "pain with no objective sensory impairment", they are referring to numbness as not being part of the criteria?

The surgeon who recommended surgery is Bollens who I believe has a fair bit of experience with cases that involved numbness. I'm not sure of the numbers though.

The other surgeon wasn't sure as he doesn't have the data on numbness, he is in my country Australia.

It's a terrible decision. I think the numbness has such an affect on my quality of life that id consider surgery.
Both surgeons have said they'll do the surgery. One being local, and the other being overseas.
The factors that weigh on my mind are experience, cost, accessibility, risks etc etc

Also the question of is the nerve just numb from damage or is it compressed. from Trauma from a fall its hard to know, but compressed seems logical at 8 months of no recovery.

Very tough.

[Violet M]

When they say "pain with no objective sensory impairment", they are referring to numbness as not being part of the criteria?

That's a good question. If you read farther down in the article It does list numbness as one of the complementary criteria. So, I'm not sure what they mean by no objective sensory impairment but apparently it doesn't include numbness.