My penis is numb... It's been 5 years

[RKay_ildel]

I'm 28 years old. In April of 2013 my left foot started periodically going numb and I began to develop erectile dysfunction. These symptoms progressed into full blown saddle anesthesia and genital numbness by April of 2015. The foot numbness was still periodic at that time. I started to seek answers and initially got blown off by physicians who related it to depression. By the way, my only health insurance is through the VA. I'm a student. Eventually in mid 2016 I got someone to take me seriously and got me to see a urologist through the Veteran's Choice Program (which means I went to a private practice). He poked at my thighs with a bobby pin, which I couldn't feel, and told me I needed a neurologist instead. Soooo... Veteran's Choice got me a neurologist. I had an EMG and an MRI. The MRI shows I have a herniated disc at my L5-S1, most likely because my deadlifting form was just plain stupid. The EMG shows a pinched nerve. You can take a look at those reports here - https://imgur.com/a/s6z1fGd

I've had an MRI of my pelvis too. That came back normal.

So my neurologist gives me epidural steroid injections which makes my foot numbness and saddle anesthesia go away... except for the numb penis. She encouraged me to try another round of injections but Veteran's Choice would not authorize that as I can have those done at the VA. After working my way through the system I finally got to the VA's pain clinic but was turned away. They told me there was no way my symptoms could be produced in the L5-S1. They told me to go get a 2nd opinion from another urologist that specializes in sexual dysfunction (but my penis is numb ALL the time!)

That was yesterday. I was furious to be asked questions that I have been getting for 2 years now. Do you ride a bike? (no) Did you get your blood work done? Testosterone? Thyroid? Hemoglobin? (yes, yes, yes, yes)

I've been doing PT for 6 weeks now but it's not been helping. It seems to be geared toward back pain, which I do not have. For now my case has been kicked back to my PCP who will decide if she wants to kick me to another urologist or another neurologist.

I've also tried various medications, such as gabapentin and duloxetine, with no results.

Here's where my symptoms get weird - I do NOT have erectile dysfunction! I can get an erection just fine! And it's not soft either. I'm just numb whether I'm flaccid or erect. And now it gets weirder - my symptoms seem to be based off pressure. When flaccid my penis is not THAT numb but the numbness is directly correlated with how erect my penis is. In other words, at a full erection I am almost completely numb. Flaccid still feels mostly normal. As for ejaculation - I can still ejaculate! But only with vigorous stimulation. And I do mean vigorous. And it doesn't feel good until orgasm. Orgasms are not as powerful anymore but still feel mostly normal.

[April]

Hi Rkay,

So you are wondering if your numb penis is pn-related? Pn causes pain on the pelvic floor and/or in the penis through its dorsal branch. Do you have those kinds of symptoms? (You can review the home page for a full listing of the symptoms.) What do your doctors think this is from? The saddle anesthesia sounds like the cauda equina syndrome, which can be very serious. Do you have full saddle sensation now?

April

[RKay_ildel]

So you are wondering if your numb penis is pn-related?

Yes, or if anyone has any information that could potentially point me in the right direction. I know it is probably not PN. I did read another post on this forum about the pudendal nerve being compressed from veins.

Pn causes pain on the pelvic floor and/or in the penis through its dorsal branch. Do you have those kinds of symptoms?

No, I'm afraid not. I have only numbness and that numbness is correlated with pressure.

What do your doctors think this is from?

See, it's hard to find a doctor that cares about numbness. Pain, sure. Those docs are easy to find. My most recent development was being turned away from the VA's pain clinic. They told me to go see a urologist that specializes in sexual dysfunction. They also put that recommendation through to my physician. My physician is currently working my case, but I don't know what she's up to. I followed up with her and she said she's trying to find me the proper care.

Do you have full saddle sensation now?

Yes, just about. My buttocks is still a bit numb, but whatever. This is not an emergency. My symptoms are stable. I'm just very depressed about it.

[chenonceau]

Hi RKay,

I feel I share some (well, most of what you described) of your symptoms. What is surprising is the total lack of pain. Didn't you feel pain at some point during these five years ? Back pain, perineal pain, penile pain ? None of these ?

Did you do spinal cord / brain MRI to rule out any type of central nervous system related diseases ?

[fangshi]

Hey dude,
I feel you. I am 32 and I have partial numbness in my penis, I would say like 30% of what it was before. I also have other symptoms which could be CPPS or PN. Its really hard to say. Whats weird for me is that the moment I am about to ejaculate my penishead which is almost numb gets super sensitive, painful even if touching anything. And after such a painful ejaculation my pelvic floor gets more inflammed and tight and I feel really shitty for a few days. When I am flaccid my penis is not painful to touch at all so. Why do I tell you that? Even so my numbness does not change with the erection state of my penis, I get pain around the penishead only when its erect, especially during ejaculation.
My theory is, that the muscles which are involved in erection and the orgasmic spasms are in a unhealthy state of cramp / contraction and it irritates a nerve which goes to the penishead which produces pain and numbness. But well, I can only make my own theories with this problem which is basically like an UFO for doctors.

Anyway, I really understand your frustration, even so numbness is not a negging problem like pain, its really scary and depressing, especially if it involves our penis!

[RKay_ildel]

Hey guys,

Didn't you feel pain at some point during these five years ? Back pain, perineal pain, penile pain ? None of these ?

Yes, I have back pain in the L5-S1 region from time to time. Nothing too extraordinary. Feels like the muscles are just tightening as a result of the herniated disc. Other than that, nah.

Did you do spinal cord / brain MRI to rule out any type of central nervous system related diseases ?

I've only had an MRI for the lumbar spine and another for the pelvis. You can read the lumbar and the pelvis came back perfect.

My theory is, that the muscles which are involved in erection and the orgasmic spasms are in a unhealthy state of cramp / contraction and it irritates a nerve which goes to the penishead which produces pain and numbness. But well, I can only make my own theories with this problem which is basically like an UFO for doctors.

This is in the vein of my thinking. I figure my pudendal nerve is compressed for some reason, but I have no idea why. And your symptoms do sound quite similar to mine.

[April]

Rkay,

I see. That doesn't really sound like pn. But, it does sound like a urologist would be a good doctor to see. If nothing else, the urologist may be able to give you another referral if s/he can't help you.

April

[Violet M]

Hi RKAY,

So you were deadlifting? I don't know what kind of PT you are trying but if it's geared toward the back and doesn't involve any pelvic floor evaluation then it seems like you at least owe it to yourself to get evaluated by an experienced pelvic floor PT who can examine you for any tension in the pelvic floor. If you can find someone who does that but can also assess your entire pelvic girdle and lower back for sacroiliac joint dysfunction, pelvic instability, pelvic misalignment, and any other mechanical issues, I think that would be important given your history of weightlifting.

The pudendal nerve is the primary nerve involved in sexual arousal although the genitofemoral is another one that's involved. But with pudendal neuralgia (PN) there is often more than one thing going on. For instance with me, I had PN but also had SI joint dysfunction, pelvic instability, and pelvic misalignment as a result of weightlifting. I also had R foot numbness due to the piriformis muscle pressing on the sciatic nerve. I'm not saying you have any of that, but my point is that it sounds like you have some mechanical issues going on, which is something that urologists and neurologists don't deal with. That would be in the realm of physical therapy, or manual therapy but not all PT is created equal. And there are some mechanical issues that PT's can't fix. For me, the ligaments were shot from weightlifting and the nerve was being pressed on by the ligaments. Ligaments don't heal very well, so it's not like you can just quit weightlifting and magically the ligaments are fine.

I think Fangshi's theory makes a lot of sense but then you have to figure out what is causing the muscles to be overly tense. In my case it was due to nerve compression from ligaments. I had a combination of numbness is some areas and pain in others.

Violet

[Pleasehelpmegod]

Hi RKAY,

So you were deadlifting? I don't know what kind of PT you are trying but if it's geared toward the back and doesn't involve any pelvic floor evaluation then it seems like you at least owe it to yourself to get evaluated by an experienced pelvic floor PT who can examine you for any tension in the pelvic floor. If you can find someone who does that but can also assess your entire pelvic girdle and lower back for sacroiliac joint dysfunction, pelvic instability, pelvic misalignment, and any other mechanical issues, I think that would be important given your history of weightlifting.

The pudendal nerve is the primary nerve involved in sexual arousal although the genitofemoral is another one that's involved. But with pudendal neuralgia (PN) there is often more than one thing going on. For instance with me, I had PN but also had SI joint dysfunction, pelvic instability, and pelvic misalignment as a result of weightlifting. I also had R foot numbness due to the piriformis muscle pressing on the sciatic nerve. I'm not saying you have any of that, but my point is that it sounds like you have some mechanical issues going on, which is something that urologists and neurologists don't deal with. That would be in the realm of physical therapy, or manual therapy but not all PT is created equal. And there are some mechanical issues that PT's can't fix. For me, the ligaments were shot from weightlifting and the nerve was being pressed on by the ligaments. Ligaments don't heal very well, so it's not like you can just quit weightlifting and magically the ligaments are fine.

I think Fangshi's theory makes a lot of sense but then you have to figure out what is causing the muscles to be overly tense. In my case it was due to nerve compression from ligaments. I had a combination of numbness is some areas and pain in others.

Violet

Nerve compression from which ligaments? And were you able to see it on an MRI? 3t or Mr neurography?

[Unfortunate]

You have compressed nerve its clear. Medication's will not help you when the problem is mechanical. Find good corrective chiropractor. Neurologist's and urologist's cannot help you , they just waste your time and money.