Here I am again...

[MC1000]

So, here I am again, after 2.5 years.

I'm a racing cyclist, male, 28yo.

Initially I noticed penile numbness at the bottom of the shaft in October 2014. Went to a doctor, she was very confused, just suggested I get a saddle with a cutout. That's exactly what I did.

Between October 2014 and November 2015, approximately 9000 miles of cycling on saddles with cutouts, there was a subtle worsening of numbness, until I realised I had erection problems. Saw the GP again in November 2015 who referred me to a urologist. Urologist said that a different saddle MIGHT help, but generally it's best to take a long time off the bike to ensure that it doesn't worsen or become permanent. I tried a new saddle just to see... my erection returned within days. The numbness remained, but it was still only partial and there were genuinely no discernible worsening of symptoms. So I thought it was fine to continue.

Between November 2015 to May 2018, I have done nearly 20,000 miles on the same saddle without issue. I've been riding most days. My lidibo in that time has come and gone - however, as of a month ago or so, I was able to become aroused without too much difficulty, so just put any libido issues down to psychological reasons and the fact I'm now in my late 20s and not 18 any more.

Importantly, in this time, the numbness did not spread. It was confined to the base of my penis and scrotum.

However, right at the beginning of last month, that suddenly changed, seemingly overnight. I lost sensation on my foreskin and a bit of sensation on the glans.

I had been led to believe that this was because of my saddle - so I continued to train, but stood up the whole way thinking that this would alleviate the problem. I did about 500 miles of this. It didn't get better, it got even worse - and became impotent again, as of 5 days ago. After 5 days of walking, driving to work, and sitting at work, I can become erect and aroused again as of last night - but certainly not 100%. And it feels very odd for the entire penis to be numb...

In addition, I've now got a near permanent urination sensation.

I'm staying off the bike permenantly now - which is painfully difficult as I'm good at it, I did a lot, it forms most of my social contact, and it's the main part of my identity. And coming into summer it's even more difficult...

I saw a doctor a few days ago, who referred me to a neurologist. However, being in the UK, the trade off for free health care is waiting times of many weeks - so in the meantime I'm hoping to get any kind of reassurance here.

I have some questions...

1. Given that the increased numbness only appeared suddenly about a month ago, is it possible that latest flare will merely be temporary?

2. I can still feel pinch, and still have SOME feeling, albeit very little. It also varies a lot throughout the day, and appears to be unrelated to sitting or anything like that. Might this partial sensation indicate anything in particular about the way the nerve is compressed and the recovery potential?

3. I was under the false impression that my problems arose from sitting on a saddle. Increased symptoms from standing up the whole way proved that this wasn't the case. I have since read that this can be caused by enlarged muscles in the pelvis - and indeed, I do have quite strong, large chunky muscles in that area. Is it likely therefore that this is a muscle entrapment issue as opposed to a sitbone issue? Would there be any other giveaway signs?

4. If the above point is true, would it be likely that my problems will alleviate when my leg and pelvic muscles lose strength?

7. I've noticed a section on stretching the pelvic muscles. If the above is true, is this likely to help?

5. I also tried running, but this contributed as well. I cannot let myself waste away so I need to do something outdoorsy, just for my mental health and sanity. Would something like hiking be particularly high risk?

6. Failing that, how about swimming? Any risk factors there?

8. Aside from all of the lifestyle changes, I have so many questions about the science behind it all. I've identitied issues of neurapraxia, axinotmesis, etc etc. Is there any kind of indication of which of these it's more likely to be, given my symptoms? (in which it's chronically compressed but still have SOME feeling, and a constant slight annoying urge to urinate)



I have many more unanswered questions, but I'll leave it there. Would be extremely grateful for any help!

Thanks
Matt

[janetm2]

Welcome back Matt,
I can't answer much but maybe provide a few ideas. First so sorry this is happening to you. Definitely endorse staying off the bike, especially since this is a cyclist syndrome. As for hiking that could be problematic because of the uneven ground, which is something we try to avoid. Swimming is the best bet but just avoid frog kicks, there should be a section off the home page about lifestyle changes or in FAQs about specific swimming.
For the possible muscle entrapment and pelvic muscle exercises I would see a physiotherapist that is PN knowledgeable. There is a list off the home page and in the UK section.
Good luck.
Janet

[April]

Hi Matt,

Sorry to hear about these problems. I think that activity makes my pn worse, so I actually stopped all exercise a few months ago. But, I think most people are able to swim and walk without a flare. So, I think gentle swimming and walking are the safest. I don't know if your pn will go away when the muscles become smaller. It's possible, I suppose. I think, as Janet suggested, it makes sense to start by seeing a pelvic physical therapist.

April

[Violet M]

Wow, I'm sure it must be hard to give up what gives you a sense of identity and social contacts. I wish there was a way to predict if the damage is permanent or temporary and if things will improve. It seems like you have already seen some improvement with lifestyle changes so hopefully that will continue. If you just have muscle tension, stretching should help but if you have a nerve entrapment, it could pose a problem causing a stretch injury to the nerve. That's what happened to me when I was doing the stretches that the PT advised. She wasn't knowledgeable about PNE and I had never heard of it. Stretching seemed to help at first but then I got worse significantly worse, even though I had pretty much stopped weightlifting and the elliptical. So, my recommendation would be to proceed with caution on the stretching. I can't say for sure about hiking. I can hike now but there was a time I couldn't. You could try it and see if it aggravates things.

You might want to try a tricyclic antidepressant medication to relieve the urinary symptoms if they are really annoying.

The pudendal nerve runs between the levator ani and obturator internus muscles so if those are enlarged they could be pressing on the PN. Some of the PN docs cut away part of the obturator internus muscle if it's enlarged when they do PNE surgery. But obviously you wouldn't want to consider surgery at this point. Myofascial release of those muscles might be helpful if they are in spasm.

Good luck,

Violet