Penile numbness/loss of sensation.

Dr Thierry Vancaillie
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AL456
Posts: 13
Joined: Fri Sep 20, 2024 9:07 am

Penile numbness/loss of sensation.

Post by AL456 »

Penile numbness

34M with 3 months of numbness in penis and scrotum.
The circumstances in which it came on are confusing. I was in the middle of a mycoplasma pneumonia infection that had me bedridden for days. One of the nights during the mycoplasma pneumonia I lost consciousness and fell onto my tailbone (which resulted in a coccyx fracture to the 1st segment).
Over the next few days I had intense pain in the lower back, with tingling and numbness to the legs, and numbness to the penis and scrotum. I presented to hospital who eventually did:
- MRI of spine
- CT of lumbar spine.
- lumbar puncture.

Nothing of importance was detected other than mild disc bulges and mild bilateral ligamentum flavum hypertrophy or mild left neural foraminal narrowing with no nerve impingement which was deemed not to be associated with my symptoms. I have since been seen by a neurologist who ordered a further MRI of the Pelvis, which only detected a fractured coccyx, yet nothing to any of the nerves in the pelvic region (including the pudendal nerve).
I also had Nerve conduction studies to the legs and hand, and EMG on leg which showed no abnormality.
He believes it isn’t related to the fall or the coccyx fracture but possibly due to a “para infectious” disease that has attacked the nerves such as GBS or the likes. I will note that I have a history of autoimmunes symptoms (scleritis, pains in joints, rashes etc).
Got an MRI of brain done yesterday (awaiting results).

Anyone been through this? And has anyone had numbness in this region ever return??

Can’t feel any sensitive touch and also have near no orgasm feeling. Anus was numb too.
I will note that prior to this injury I had numbness and buzzing and tingling in my feet and legs with reduced sensation and was already being looked into for neurological problems, but nothing is ever found.
Have seen Pelvic floor PT who believes it has to be the pudendal nerve causing the loss of sensation and dynsfuction.
I honestly am gobsmacked and have no idea what has happened! Anyone gone through this and had recovery?
What I do know is that the pudendal nerve is definitely impacted and I have no answers from anyone really.
April
Posts: 635
Joined: Fri Jun 19, 2015 9:59 am

Re: Penile numbness/loss of sensation.

Post by April »

Hi Al,

That sounds really difficult. I have read posts from a few different men on here who had numbness in their penis, so I think it can be a symptom of pn. Do you have pain anywhere? Has there been any change in your numbness over time? Your fall and the compressed discs made me think of the cauda equina syndrome, but that creates numbness in the seat area (backs of legs, buttocks, etc.). Have the doctors you've met with talked about pn as a possibility? I think Hibner treats men now, so you could set up a telehealth appointment with him to see if he has ideas. I would try to send him all your MRIs and other scans in advance so he has that info when he meets with you.

April

Update: I see you posted this in another section and Violet responded to that post, and she (as always!) has lots of great ideas and suggestions.
AL456
Posts: 13
Joined: Fri Sep 20, 2024 9:07 am

Re: Penile numbness/loss of sensation.

Post by AL456 »

Thanks for the comment April.

Cauda equina syndrome was the first suspicion when I presented to hospital.
MRI of spine, mri of lumbar spine as well as CT scan ruled it out according to the hospital.
There was then a further pelvic mri which only picked up a fracture to the coccyx, with no nerve damage detected.
I did have numbness to the buttocks and thighs and legs as well initially. It’s now primarily to the penis and scrotum. They have not shown any improvement in numbness whatsoever.
There is mainly only pain in the coccyx region (where the fracture is), and I’m not getting stinging in the urethra in the penis, but this may be due to pressure applied to that region and the lack of sensation. It’s absolutely bizarre that I’m 3 months in and no one knows. The loss of sensation is crazy.
Do you know if the pudendal nerve can heal on its own if that were to be the case?. Currently there’s no proof to diagnose anything other than the fracture.
The neurologist is of the belief that it isn’t physical because the pelvic mri was clear. But the pelvic floor pt thinks it’s possibly a compression somewhere and that mri isn’t always effective at picking everything up.
Then I wonder if it’s just straight out damaged nerve and needs time to heal. I don’t know, most confused I’ve ever been in my life!
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Violet M
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Re: Penile numbness/loss of sensation.

Post by Violet M »

AL456 wrote: Mon Sep 23, 2024 3:48 pm

The neurologist is of the belief that it isn’t physical because the pelvic mri was clear. But the pelvic floor pt thinks it’s possibly a compression somewhere and that mri isn’t always effective at picking everything up.
Based on what some of the PN surgeons have said, I have to go with what the PT said. If there is something compressing the nerve, you don't want to wait too long because my understanding is that the longer you wait, the less chance there is of recovery. So, I think what April suggested about talking with a PN surgeon for an opinion would make a lot of sense. Whether or not it would heal on its own could depend on whether there is a compression or not.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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