Cyclist Syndrome?

[G6612]

Hello,
I am an avid cyclist and would like to get some advice on how to proceed with treatment, Here is my story. I am 45 years old male and an avid cyclist and workout with a trainer a few times a week. A little over 3 years ago (December 2013) I woke up and had a burning sensation at the tip of my penis (urethra). I started out seeing my family doctor and then a urologist and they believed it to be prostatitis which after several rounds of antibiotics proved that it was not. My pain worsens as I sit and it is always there to some degree if I am up and active it feels the best. After 3 urologists the third one suggested some PT which I did for several weeks. I can say it came down to some skin rolling on my glutes and thighs and I would get some relief but it was short lived for about a day. Then I went to a pain specialist and received a nerve block that did absolutely nothing no change and if you ask me it made it worse for a few weeks. Over this three year period I did stop cycling for about a year and noticed no changes in my symptoms they were the same. Got a new saddle and had a bike fit and to be honest I feel no different if I ride or not, actually feel pretty good after cycling. I believe that it is caused from sitting for long periods at work at my desk and cycling probably has not helped. I have also went to a chiropractor for a few weeks and again I did receive some relief but short lived and learned that my pelvis is tilted a little so really not sure that was the answer I was looking for. I live in Pittsburgh, PA and I really can't find any Doctors that I should being going to or what type of doctor I should be seeing. I would appreciate if anyone can give some advice and advise on what type of Doctor I should be seeing or what should be my next plan of action. At this time I have rode my bike a few times this spring but I have decided that I will not ride or do any physical activity as weight training until I can get this under control. I would appreciate any thoughts on how to move forward with treatment and what questions I should be asking.

Thank you.

[Violet M]

Hello G,

Just wondering if the PT checked your pelvic floor muscles (via the rectum) for tension, or if they checked your SI joint for dysfunction and pelvic ligaments for instability. When I was about your age I was weightlifting and developed pelvic instability from chronic ligament strain. As people start to age, the ligaments can become hardened and sclerosed which is what happened to me. Some people who do weight training have thickened ligaments. If you do have some ligament strain, prolotherapy might be helpful.

When you had the nerve block do you know where they placed the block (pudendal nerve? which branch? etc.) and did you have loss of sensation/numbness in the distribution area of the pudendal nerve with even a few hours of pain relief? For diagnostic purposes, the block has to hit the right target which can be determined by whether or not you have loss of sensation and numbness in the distribution area of that nerve and in addition there should be at least some short-term pain relief from the anesthetic. If there was also steroid in the block it's not uncommon to have a flare-up in symptoms for several weeks afterwards. I experienced a flare-up after a pudendal nerve block into Alcock's canal.

Is your pain primarily on one side or both sides? Pain one one side can be associated with nerve entrapment.
http://www.pudendalhope.info/sites/defa ... iteria.pdf

You might want to read konedog4's posts on this forum. He has been treated successfully by Dr. Kirk Andrew in Canada. Since you are in Pittsburgh that might not be too far for you to travel.

I don't really know enough about your situation to advise you but you do have a lot of options. It just depends on which direction you feels is right for you. If you feel like your symptoms are at all related to stress or anxiety you might want to read Ezer/Nonsequitur's posts on the mindbody approach.

There is always the option of traveling to one of the pudendal neuralgia specialists if you can't find anyone locally who can give you a proper diagnosis. You may have already seen the list of specialists at this link: http://www.pudendalhope.info/node/58 In the meantime, for symptom relief you could try something like amitriptyline, lyrica, or benzodiazepines to see if they help.

Violet

[nyt]

I agree with all that Violet said. I don't know what location of your body they performed your block. If you had a guided pudendal block done without any relief you might be interested in the abstract in this thread.

http://www.pudendalhope.info/forum/view ... =23&t=7327

You might want to consider the Vincera Institute in Philadelphia. They specialize in core injuries and work with all levels of athletes plus non-athletes like me. I've recently been seen there and have been quite impressed.

[G6612]

Violet,
Thanks for the response, Here is what I can tell you and what I remember. They did check my pelvic floor muscles via my rectum for the first couple times my left side was very tight and painful after a few sessions no pain from them doing it but it appeared not to effect my current condition. SI joint was never checked as I can remember. The nerve block was for the pudendal nerve it was done on both sides of my butt not sure on which branch, I noticed no different in my pain it did not change after the procedure it was still there. As I can remember he used a steroid and I think my pain did intensify for a short time after. As for pain, it is at the tip of my penis my (peehole has a burning sensation) Always there to some degree. Do you think something like this may be caused by stress or anxiety? For three years? Appreciate your thoughts!

[Violet M]

Well, G, given your history of heavy exercise and prolonged sitting, I would be inclined to think it was related to that rather than stress/anxiety but I don't know you at all so I can't say for sure. There are serious minded people on this forum who do believe their PN symptoms were related to stress anxiety. For me it was caused by heavy exercise and was not caused by stress/anxiety. I just like to brainstorm and throw a lot of ideas out there to newbies and they can decide what fits them best.

I don't know the experience of the doctor who gave you the nerve blocks but the fact that they didn't give you any relief makes you wonder. It sounds like you don't really have a confirmed diagnosis yet and you are searching for a diagnosis at this point as well as effective treatment. I guess if you can't find help locally you might have to travel to a specialist as many of us have. If you see someone on our website's list of physicians it might be a good idea to do a search on this forum for what patients have said about the particular doctor. You can use the search function in the upper right corner. In addition, you might want to try seeing a manual therapist as opposed to someone who does skin rolling because they work more on the mechanics of the pelvis including alignment and SI joint function. You could check with Jerry Hesch to see if he knows a therapist in your area who uses the Hesch method. You can find his contact info at this link: http://www.heschinstitute.com/

Violet

[nonsequitur]

G6612, I do indeed believe that my decade of pain was due to a somatoform disorder. The pain is self-maintained even if the source of anxiety is gone. I also think it is not unique here. For many, pain was triggered by a physical incident during or shortly after a stressful period.

Stress lowers the pain threshold. That is well understood. It is enough to start a self-maintained pain cycle that is hard to break.
Some doctors believe that 95% of low back pain cases are due to a somatoform pain disorder. That seems pretty high but I can't comment.

Did your pain start shortly after or during a stressful period in your life?

http://www.webmd.com/mental-health/soma ... -treatment

[Ray P.]

I rode for 5 years after I had PNE. I regret it very much.

[Tisdale294]

Riding a bicycle for exercise was the beginning of my pnudendal nerve pain. Attempting to massage the nerve by sitting on a tennis ball only made it worse: excruciating, stabbing pain like electric shocks to my scrotum. Here's what has helped me: First, ditch the bicycle. Continuing to ride, in my uneducated opinion, is the wrong thing to do. Second. convert to a standup/sit down computer desk. Third, buy a good cushion. The Oval Thera Seat cushion seems to work best for me. Fourth. If you wear jeans: don't. Even the relax fit style was too tight on me and brought on stabbing electical shock pain. And finally, don't think going a few months pain free has solved the problem.
Best to you.
Tisdale294

[Nooly]

Riding a bicycle for exercise was the beginning of my pnudendal nerve pain. Attempting to massage the nerve by sitting on a tennis ball only made it worse: excruciating, stabbing pain like electric shocks to my scrotum. Here's what has helped me: First, ditch the bicycle. Continuing to ride, in my uneducated opinion, is the wrong thing to do. Second. convert to a standup/sit down computer desk. Third, buy a good cushion. The Oval Thera Seat cushion seems to work best for me. Fourth. If you wear jeans: don't. Even the relax fit style was too tight on me and brought on stabbing electical shock pain. And finally, don't think going a few months pain free has solved the problem.
Best to you.
Tisdale294

Cushioning helps a lot. Also, I have been thinking about getting a stand-up computer desk since sitting down on my desk chair for long hours (working) has become more like torture.

[bdyer50]

This email chain is a bit older, but it does speak to bicyclists, which is what brought on my PN. I rode for 2 years until I realized that biking was causing my newfound significant ED. I stopped riding right away, which was 3 years ago. In addition to ED, I developed discomfort in the groin area you sit on and the front pelvis that you don't. In 3 years I haven't really gotten much better. My MD tells me that my biking compressed the pudendal nerve and thus caused neuropathy (not neuralgia) --- i.e. cyclist syndrome. My understanding is that nerves can sometimes grow back, but often they don't. I have conflicting info that says that nerve growth may take years, or that if it doesn't happen in 2 years, it's never going to happen. Does anyone have knowledge of this?

Also, for 3 years my ED I would characterize as moderate. My libido was very low, but the equipment worked. In the past few weeks it has gotten much worse than moderate. Do any of you have significant ED with your condition, and does it get worse and then better? I'm hoping that this recent flare up tapers off, but frankly I don't know anymore. This has been a difficult journey. Thanks, Bill