Health Organization for Pudendal Education

Hi, all.

I am so happy (borderline emotional) to find this community after a year of issues.

Around April of last year I was training for my first Ironman. I had done shorter races and was ready for a long one. I got a new bike and started to have testicular numbness in my right testicle only that would linger days/weeks after my rides. I tried different seats and all sorts of modifications under the guidance of a fit specialist. Unfortunately, I had to give up the sport after having consistent testicular numbness, again only on the right side, and occasional penile numbness, again only on the right side. This was on and off and there have been times were my penis is mostly numb (maybe 20% feeling).

Currently, my right testicle is almost always less sensitive than my left and my penis has on and off sensitivity issues. I do not have ED but during sexual intercourse can notice a difference - sometimes there is more sensitivity than other times. All of this is accompanied by varying pain and discomfort, generally on the right sight of my pelvis and lower bag. Sitting is terrible for me and leads to more numbness ASAP.

I have seen a physical therapist, pelvic floor specialist, holistic kinesiologist, spine doctor, and urologist. All but the spine doctor and uro had treated similar conditions but nothing "stuck". I can't really do much physical activity without creating more pain and numbness. The pain discomfort lately has been at the bottom of my right glute and right abductors. I do stretches daily as prescribed by the holistic kinesiologist but again, nothing has really helped.

I'm currently going "all-in" on this. It is starting to affect my life. I can't do any physical activity and sitting is terrible for me. I'm going to see a new pelvic floor therapist and urologist that she works with. This is all going to be in Seattle where I recently moved to.

I've never sought any true medical options outside of the urologist who didn't charge me and said he had never seen this. I got two MRIs of my pelvic region but both I was told didn't show any issues. I am grateful for any advice/help anyone can provide.

Hello mate. Welcome to the site. I recognise a few if those symptoms, so can empathise with your situation. If you have any questions then dont hesitate to ask. I wish you luck on your journey.

Andy.

Hi jhw,

Welcome to the forum. Sounds like you are on the right track seeing the pelvic floor PT and getting the MRI. Sometimes healing will take place just with lifestyle changes and avoiding activities that increase your pain. Dr. Jason Attaman is a pain doctor in the Seattle area who treats patients with pudendal neuralgia. He has posted some on this forum and he is listed on the pudendalhope website under the list of doctors. I don't know if you want to pursue any procedures yet at this point though. Hopefully you will see improvements just with lifestyle changes and the proper kind of PT.

Violet

Sorry to hear about your symptoms. The good news is that it sounds like you may have gotten off the bike in time to prevent any truly lasting damage. I wouldn't be surprised if you just have pelvic floor disorder, which is muscle spasming/tightness and is much more common than PN. If you stay off the bike and get some PT for it, you may find you'll be good as new in pretty short order. If you press on your perineum, does it feel sore? For me it does not. If it does for you, then it's quite possible that you have PFD, which is applying pressure to your pudendal nerve, which is causing the tingling and lack of sensation. If you relax the muscles with PT, you may be back to 100% very soon.

I rode for a couple of years and didn't really notice any symptoms other than a reduction in libido, which I didn't attribute to the bike right away. Then, one day -- BAM -- the ED hit hard, and lots of pain/tingling/muscle spasm came on as well. In my case, the damage to the nerve caused the muscle spasms --- not the other way around. Unfortunately, the nerves, once damaged, often don't heal. The saving grace for me is that sitting has never been an issue for me. So while my sex life is very bad, I can still work.

My initial onset was 3 years ago. Gabapentin works awesome for me. Clears up pretty much all the symptoms, including the ED. Unfortunately, it gives me panic attacks and thus sleepless nights, so I can't take it. I'm looking for other options, but the progress has been very slow and I'm losing optimism. I hope that you are finding relief of your symptoms. I would strongly encourage you to stay off the bike. I LOVED my bike but dropped it cold turkey. It's been gathering dust for 3 years now. A real bummer.

I m having penile numbness similar since 20 month.
Please help me..
I visited psychiatrist, neurologist, urologist, gynaecologist. .....all only councelled and asked to run...
MRI spine normal
Vit B12 was low ..on injury since 3 months
Testesterone...Lower limit of normal
Started running2 km and vit B12 .no improvement till.feels like increasing numbness.

Very much depressed...

Sharvar, do you have any idea what might have caused this problem to start 20 months ago?

Violet

20 months ago one night, while masterbating I first got feeling of erectile dysfunction....but no numbness..
About 4-5 months later this I realized that I have decreased sensation in my glans.. Ed was also present sometimes. All above-mentioned Dr advised me to ignore... but how can I?.
I have no / decreased feeling even while micturating...
Please some one help..whom should I contact?

Sharvar, I don't know what country you live in so it's hard to make a suggestion on where to go. I think some diagnostics to help isolate where the problem is coming from might be helpful. For instance, do you have tight pelvic floor muscles or any musculoskeletal anomalies that could be corrected by some physiotherapy? Are your symptoms similar to the Nantes Criteria listed on the symptoms page at pudendalhope.org? You have to consider small fiber neuropathy as well as branches of the pudendal nerve being affected. Do you have any doctors in your country who specialize in pudendal neuralgia?

Violet

Hi jhw,

Have you managed to get any further progress and found a solution at all? Did you try an Ergonomic seat without the front part of the nose?

Seems I'm might be having similar situation, I think i was caused from doing triathlon training as well on the road bike with tri bars on it. On a normal bike ride for a long time after about 30min or so would go numb in all the under carriage. I wasn't smart enough to think I should change it. After year or so then progresses to a stabbing pain at start of ride and then went away, could ride for few hours okay but still with numbness. After a few months of stabbing pain not going away, It prompted me to change to USM seat which helped, no more numbness but the pain progressed. By the time I went to see a doctor it was taking a minute or two to go away still at the start of the ride.

8 months later and spending about $5,000 with various visits to different people, the recent physio seemed to think it could be PDE, first I've heard of it and found the forum. Thanks by the way for creating the forum and website Amanda, Stephanie, and Violet, much appreciated. Only found it tonight and haven't read a lot yet so still a lot to learn and see what treatments there are and the success rates.

Any advice or help would be sensational?

Thanks
Dave

Hi Dave,

Welcome to the forum. Not sure.....did you mean PNE in your above post? Does the physical therapist think they can help you or what are they recommending? I was actually diagnosed by a physical therapist when none of the docs knew what I had. I sort of pushed through exercising just like you did so you are not the first to wish afterward that you had realized earlier the significance of the pain. I hope you can find some valuable information here on the forum and on the website at pudendalhope.org.

Violet