Health Organization for Pudendal Education

More issues with my cycling induced pudendal neuropathy! Basically, i haven't ridden a bike since May, when the numbness in my penis spread all the way to the tip. In that time, I've been trying to figure out exercise options, and have sought advice from many NHS urologists and neurologists, and also a private physio. I've had two mri scans - spinal and pelvic - which both came back normal. Until recently, I did feel that sensitivity was slightly returning. But it fluctuates... A lot.

Initially I saw the physio. She identified a very tight pelvic floor, and indicated that this would be a contributing factor to my numbness.

However, some weeks later, i had a medical consultation with a leading penile and erectile dysfunction specialist. He has performed many penile reconstruction surgeries, is head of an NHS department, and has a lectureship in a world class university, so you'd think he knows what he's talking about. He checked my pelvic tone, and said it was good; i then asked him about what the physio said — that the tight muscles would compress the nerve further. His response : “no, that's complete nonsense“. Then when I asked about exercise, he said running and standing up cycling would cause me no issues.

I also had a nerve conduction test with the neurologist. It was normal, although this doesn't really tell us anything as it only tests the intact nerve fibres. He did however say that my chance of recovery is good as it appears that only certain fibres have been damaged.

Now, with these consultations in mind, i did try running for a couple of weeks and it seemed to slightly worsen the problem. I couldn't put it down to running necessarily - it could be psychological and related to my paranoia that exercise is doing harm - but i quit running nonetheless.

Instead, I've just bought a hand bike. Now, what can possibly be wrong with that?! I'm literally lying down - no nerve compression whatsoever, and none of the jolting that you'd get from running. Harmless, surely. Just a fantastic upper body workout. And yet, after a week of strenuous hand cycling my penis is more numb than it has been in months, and I'm getting no more spontaneous erections.

This makes me think one thing : it must be a muscle tightness issue worsened by exercise that engages the core.

And yet...

A leading urological surgeon said this is nonsense
I have no symptoms of muscle tightness or numbness anywhere else in my body
I've done very little exercise compared to the 300 mile weeks I was cycling over four years without noticing significant problems.

And on top of all this, I don't think I've seen any medical journals that indicate the role of muscle tightness in pudendal neuropathy. Just saddle compression, but nothing about muscle tightness.

So, in consideration of what the expert urologist told me, is there any irrefutable scientific evidence out there that can explain my strange ongoing symptoms?

MC1000,

I have found that almost all forms of exercise (including walking) can flare my pn, so I gave up on trying to exercise. But, I think I can exercise my arms (e.g., lift weights) when I'm lying on my back without a flare. Is that what a hand bike does? If your upper body is all that's moving, I think it should be okay. Everyone is a little different, though, so it sometimes takes a little trial and error to figure out what you can and cannot do.

April

April wrote:MC1000,

I have found that almost all forms of exercise (including walking) can flare my pn, so I gave up on trying to exercise. But, I think I can exercise my arms (e.g., lift weights) when I'm lying on my back without a flare. Is that what a hand bike does?

Yeah, pretty much. Only uses the biceps, triceps, pecsand lats. I suspect there's some ab engagement as well, but certainly it shouldn't be engaging the upper legs or pelvis. It's designed for parapalegics after all!

What confuses me is none of this should be causing a sensory deficit - unless of course it is just a tight pelvic floor. That's the only thing that would make sense to me.

But then, a leading urologist told me that this is bullshit - and who am I to argue with that many years' experience and that level of intelligence?

And from the evidence I've seen, there's no scientific consensus for the role of the pelvic floor in muscle tightness and nerve compression...

I wouldn't think that a tight pelvic floor could create a sensory deficit, so I would guess (based only on reading this forum) that the doctor is right. But, sensory deficits are not common among pn patients, so I don't know much about that. It could be that people with a tight pelvic floor tend to have another pelvic problem that does create the sensory deficit (so it could be correlated with it but not causing it). What does the urologist think is causing this? Can s/he do more tests?

April

All I can tell you is that the pudendal nerve runs through the pelvic floor in the Alcock's canal, a tight space between the obturator internus and levator ani muscles that make up the pelvic floor. You will have to draw your own conclusions as to whether tense muscles could impinge on the pudendal nerve as it runs through Alcock's canal.

From my own experience, I can tell you that exercise caused flare-ups in symptoms. I also had piriformis syndrome with the piriformis muscle impinging on the sciatic nerve causing numbness down my leg. So from first-hand experience I can tell you that tight muscles impinging on a nerve can cause numbness.

I went to the "best" obgyn in my state -- someone who performed many reconstruction surgeries. She had never heard of PNE. Doctors don't know everything. I don't know if that doctor is right in your case. I'm just telling you my own experience.

Violet

Thanks for your respective comments.

I'd make the comment that this was definitely brought on by 4 years cycling in one way or another. Most likely saddle compression - my perineum and back passage are fine; it's only the penis that isn't. I'd imagine tight muscles in the pelvis would be located further back, and thus cause deficits in the other locations as well — which doesn't appear to be the case. So nerve compression from the saddle seems most likely.

The MRIs didn't show anything either - but I'm very much a layman, and don't know how much an MRI can tell about muscle tightness.

From my experience, PN is well recognised among the specialists. Not the GPs, but the consultants.

In conclusion, I'm sure muscle tightness in general can contribute to numbness - piforimis syndrome is real, and it's pretty common for hand numbness due to muscle tightness in the upper part of the arm. But penile numbness due a tight pelvic floor? I don't think a leading penile surgeon called that nonsense for no reason...

I'm not trying to say that in your case a tight pelvic floor is the primary cause of your symptoms. Even though I had tight pelvic floor muscles, that was not the primary cause of the symptoms. The tight muscles were a of result of the nerve being compressed which caused the pelvic floor muscles to tighten up. I have never heard of an MRI diagnosis of tight pelvic floor muscles.

If penile numbness is your only symptom then it seems like you would have to consider a problem with the dorsal nerve. Dr. Dellon published an article awhile back describing an area of entrapment for the dorsal nerve. Have you seen it?

So did the penile expert surgeon have a good explanation for what is causing your symptoms?

Violet

Oh, I think everyone's in agreement that it's saddle compression that caused the issue - especially given that the spinal and pelvic mri scans showed nothing. But that doesn't explain why standing up cycling, or handcycling, would cause problems.

Also, it's definitely my dorsal nerve alone that's been affected - the perineum and back passage are fine. More evidence that the nerve compression is quite far forward.

It could be a multivariate issue, but none of the reasons for worsening symptoms with mere activity add up, in my case. Imagine a flowchart on which everything leads to a negative - that's the way i see it.