Health Organization for Pudendal Education

Hello,

I'm new to the PNE world and looking to accelerate my learning process from you all on this forum.

Background: I am a very fit 48 year old male, who has been active my entire life with many activities including soccer, baseball, volleyball, hiking, skiing, and golf. However, my primary adult life love has been cycling. As I moved through my 30's I migrated from mountain biking to road cycling. As with most cyclists, have had occasional experience with "numbness" however it always resolved itself by standing out of the saddle, or shortly after my rides. For the past 5 years or so I have been riding a split style seat with enough room for my middle parts to have relief. That seat was very comfortable and seldom caused numbness. With this new year I invested in a upscale bike which of course came with a fancy Italian seat. I didn't give any thought to it not being split style as it received excellent reviews from experienced cyclists.

Through Jan/Feb/March of this year, I have been training for upcoming cycling competitions in April and May. In February my daily bowel movement habits changed from one regular movement first thing in the morning, to up to four per day - all of which were reduced volume and leave me not feeling "done." As I had an annual physical scheduled at end of March, I decided I would save it to discuss with my general practitioner. I also started noticing more difficulty urinating with regards to starting and stopping, although believed that to be part of normal male degradation. Within two weeks of my appointment I started feeling a burning sensation in the anus and rectum (mostly left side), accompanied by the feeling of a foreign object in my rectum. My thought was that this was being caused by the bowel movement changes (not vice-versa), and actually started thinking perhaps I had polyps, or even cancer in my rectum/colon. I also started to notice a slightly "numbed" orgasm sensation, but again attributed it to getting older. For about 15 minutes post-orgasm, all symptoms seem to go away - unfortunately only temporarily.

My Dr. didn't find anything unusual in the blood tests and stool sample. When I described my bowel movement changes, he said I should see a colorectal doctor and gave me a name. When I described the pain/burning, he asked about my cycling and said that too much cycling on the wrong seat can cause a crushing of the perineal nerve.

Wow...a light bulb went on with regards to my new seat, training, and symptoms. I immediately rushed home to look at my now 3 month old seat - of course it was not a split seat! That's when I started my research on the internet, found this site, and the symptoms seem to line up.

My wife and I made a decision for me to suspend my cycling training and I have not been on my bicycle since the day of my Dr. appt (i.e. four days ago). The combination of fear of increased permanent damage, as well as potential for impact to future sexual activity made this decision easy.

My level of pain is not debilitating, but rather persistent and annoying. I am finding that the pain is reduced when standing, most intense during sitting, and also noticeable (but reduced) when lying down.

To be honest, I am not sure what questions I should be asking at this point, but have tried to come up with those that will be most helpful. I have done a lot of reading, but am sure I have much much more to do.

If you have other information that you know would help me, please feel free to share.

Questions:
1. Based on my history and activity, does this sound like a PNE (or PN) match?

2. Is it known that continuing with activities that may have caused it, will continue to increase the level of damage? I.e. my decision to stay off the bike is the right one.

3. Are significant change in bowel movement habits common, or should I see the colorectal Dr. to be sure there are not other issues?

4. I don't see many references to nutrition. Are there any foods/nutrients to avoid, or include that will help with symptoms/and to aid in healing?

5. I feel as though I may have caught this relatively early. If you were in my shoes, what would be your next steps? (e.g. wait and see if symptoms persist, schedule phone consult with PNE specialist, schedule appt, etc.)

6. Are there treatments that are time sensitive and known to be more effective early on?

7. If I am able to "cure" the problem and get rid of the symptoms, is it possible that I could return to cycling - with a split seat of course? To be honest, the prospect of no longer cycling is more devastating than the persistent pain.

8. I saw a reference somewhere to avoiding other types of exercise such as weights and core muscle work. This too would be difficult as I am highly dependent on my fitness for overall happiness.

9. Any other good reference material would be appreciated.

Thanks much in advance!

John in Colorado

Hi John,

Your bowel symptoms are exactly as mine were when my PN started. If you're not in any pain right now, I don't think you need to see any PN specialist. Just stay off the bike! And do not lift any heavy weights, as that can also put pressure on the nerve. Walking is okay but in my experience running is not.
In general you should be guided by your symptoms: if your activity hurts or increases your symptoms, don't do it.

Hopefully by taking a break from heavy duty athletics you can prevent the condition from developing into pain. Life without athletics is difficult, but life with the debilitating pain of PN is devastating. Please try to avoid it if you can.

Lernica

Also, no stairmaster. And don't strain or get constipated. Both the stairmaster and straining put pressure on the nerve.

Can you swim? Maybe now's the time to work on your stroke and become a fantastic swimmer. Front crawl is fine but no breaststroke.

John, I lived in Colorado many years, did a lot cycling too . I can just see you on your fancy bike, getting ready for a big ride, wearing glacier shades right ? Just a little humor, used to ride around Golden all the time, Vail pass.. lots of mountain riding once upon a time, including 3 months in Europe. Here's my opinion, Where you are at right now, I would first, aboslutley, positively, stay off the bike. Hide it from yourself. Don't even look at it. Just put. it. away. Ok, now, go to this site: www.pelvicpainrehab.com and talk to Stephanie Prendergast or Liz RUmmer. THey are the gurus of PT. it is very possible that this is all early enough that a good week or two week long session with Steph or Liz in PT might significantly help you. They are in San Francisco. Nope, there is no one in Denver as good as them. Based on how you do with them, you can then decide what to do next. Maybe go back and see them every six weeks. Have your wife ( can't remember if you have a wife, gf) anyway, maybe they can learn some PT skills to help you. It really is worth a good effort to see if PT helps you. RIght now, protect your "boys' so if sitting is bothering you, then there are cushions on our site that you can look at and make up to help you. You don't want to compress anymore and alter blood supply etc. Also, don't weight lift right now either, anything that would require deep squatting and lifting heavy stuff. For your discomfort, ice helps and they are other things too that others will offer. A lot of uro docs mistakenly call this prostatitis and a huge per cent, some say 95% of the time, that number is wrong. It turns out to be pelvic floor or PN kind of stuff. Hope this helps. Crazy crazy cyclists in Colorado. Spent a lot of my life out there too. Aspen when I was a tiny kid, before it was Aspen, as in the Jerome hotel was a run down place, and Hunter Thompson ran for mayor. Hope this helps, take it easy, for real. Cora

Hi John,

I too believe my symptoms were brought on by my work (I.T. =Sitting all day) extended rides on my motorcycle and having a thin build. Last year I would suck it up and go out for a quick one hour ride but as my condition seems to be getting worse it looks like I will be selling one of my bikes this year. Good luck.

Thank you Lernica, Cora, and Paulsa!

This is all very good information. I definitely get the message to not mess around and stay away from the bike, as well as other certain activities.

Lernica, thanks for sharing the exercises to avoid and some that have worked. I guess I have a chance to develop a new passion for something!

Cora, I'm glad you mentioned PT, and the pelvic pain rehab website. Coincidentally I came across that the other day and was wondering how good they are. Your recommendation means a lot. Colorado is glorious for cycling and I will definitely miss it if I can't get back to it, but certainly know my priorities.

Paulsa, coincidentally I have two motorcycles as well and was wondering if riding them would aggravate the problem. I had already decided to sell one, but may need to consider selling the other as well.

I guess I just need to look at this adventure as an opportunity to learn and try new things.

And another thing -- If you take up power walking, avoid hills and staircases. Walking on flat surfaces is fine but walking up an incline puts undue pressure on the nerve. Walking down inclines is fine, though. The pudendal nerve is very finicky and easy to irritate.

If you follow our advice and take it easy you will hopefully take another path than me: I can barely walk twenty minutes, I cannot lift a grocery bag heavier than a pound, I haven't been in the gym for about 18 months, I can't run, I can't sit, I can't stand for longer than twenty minutes, and I can't have s*xual intercourse. Oh and I am chronically constipated. At the beginning of this PN journey I would think "what, I can't run anymore?" and now I consider myself lucky if I can take a slow walk around the block. So take care of yourself John while you can! Protect your pudendal nerve at all costs.

Lernica wrote:And another thing -- If you take up power walking, avoid hills and staircases. Walking on flat surfaces is fine but walking up an incline puts undue pressure on the nerve. Walking down inclines is fine, though. The pudendal nerve is very finicky and easy to irritate.

If you follow our advice and take it easy you will hopefully take another path than me: I can barely walk twenty minutes, I cannot lift a grocery bag heavier than a pound, I haven't been in the gym for about 18 months, I can't run, I can't sit, I can't stand for longer than twenty minutes, and I can't have s*xual intercourse. Oh and I am chronically constipated. At the beginning of this PN journey I would think "what, I can't run anymore?" and now I consider myself lucky if I can take a slow walk around the block. So take care of yourself John while you can! Protect your pudendal nerve at all costs.

Welcome John and thanks for your excellent introduction and good questions.
I would emphasize what Cora and Lernica have said above; I'm a little better off than Lernica and you should check out her thread "What would you do differently?" HYPERPROTECT at all costs!
I'm short on time but hopefully can take a stab at your questions later on.

Don

Hi John,

You have gotten some great advice so far on what to do next. I think it is reasonable to try some pelvic floor physical therapy -- if you can't travel to SF to see Liz and Steph you could find out who in your area has taken their seminar and knows how to treat pudendal neuropathy. Did you see the list of PT's on our website?

The symptoms you are describing are consistent with what we hear from PN patients all the time but it's important to get input from professionals who can do an exam and help you pinpoint the problem. The colorectal doc may or may not be helpful depending on whether the physician you see knows much about pudendal neuropathy. There are some good providers in Colorado -- not sure where you live in CO.

javaruke wrote:7. If I am able to "cure" the problem and get rid of the symptoms, is it possible that I could return to cycling - with a split seat of course? To be honest, the prospect of no longer cycling is more devastating than the persistent pain.

You may return to cycling but I think you are right that you will need a special seat and you will have to be careful. Check out the body geometry seat by Specialized. They measure the distance between your sit bones and fit you to the right seat. But first get well! You could also check out KrisG's posts about his recumbent bike or his twike. Do a search using the search function up at the top of this page on the right.

Hi John,
I would echo what Don said above about hyperprotection. Personally, if I had symptoms as you describe, I would try to come around to the idea of a life without cycling and appreciate being able to go out for dinner and a movie. Swimming and power walking are definitely something to consider, There's a good reason that PN was inititially described as cyclist's syndrome. Good luck and keep us posted on your progress.

Best Wishes,

Don