Male Cyclist - Do I have PN?

[bdyer50]

I’m a 46 year old male and have been diagnosed with pudendal nerve neuropathy by my physician, and I’d love to get the feedback from the group as to whether this sounds like PN or something else as well as which physician I should reach out to.

My History
Purchased mountain bike in April 2012. Did 2-hour rides 2x/week for 18 months. Noticed a pronounced reduction in libido over that period of time. Attributed the symptoms to the OTC medication I was taking (Prevacid) for my recently-diagnosed acid reflux. Noticed that the reduction in libido was also beginning to come with a reduction in the ability to obtain an erection. After 18 months I realized that the problem was my biking – not my stomach meds. I purchased a new bike and got a professional bike fitting to be sure that the seat was correct for my body. Turned out that the seat from my first bike was too narrow, such that I was sitting on my perineum as opposed to my sit bones. Biked for another six months 2x/month with the new bike. Noticed that the symptoms got worse, such that I was unable to obtain an erection. Went to the urologist, who gave me Cialis and suggested that it was OK to continue to bike. I biked one more time and noticed that the left side of my left testicle began to tingle at nighttime. Then, a day or two later the muscles in my lower abdomen (above the genitalia and below the belly button) went into major spasm, such that I felt like I was giving birth. My urologist put me on 3 Advil 3x/day for 2 weeks to deal with the pain and inflammation of the muscles. Within 3 days my symptoms had more or less disappeared, and I felt largely cured.

My urologist attributed the problem to pelvic floor disorder and sent me to PT. I found that the PT was not helpful at all. After 3 months of PT I was discharged. My symptoms had returned now that I was off the Advil, but they were relatively moderate. I found that the right side of my body was fine. I noticed some continued tingling on the left side of my testicles and what felt like consistent muscle tightness on the left side of the lower abdomen. The erectile dysfunction symptoms did return once I went off the Advil, such that I continue to have low libido and generally feel disconnected from my penis. However, I continue to be able to achieve erection unaided by medication. At one point my symptoms subsided to the point that I thought that I may be able to bike again. I did stop into a bike shop one day to try out different bike seats and decided that it was just too risky, as I was unconvinced that PFD was really the correct diagnosis. I feared it was something else. A few days after sitting on various bike seats my lower abdomen again went into major spasm, and I again went on the 3 Advil 3x/day for 2 weeks. The flare up went away pretty quickly, and I haven’t sat on a bike seat since.

Since that time two years ago, I went back into PT for PFD a couple of times with no improvement. I did not find my symptoms had worsened, and in fact they probably improved a little bit. In January 2016 I visited my urologist and told him that I was sure that PFD was not the correct diagnosis and that I was tired of the ED and constant tightness on the left side of my lower abdomen. He didn’t know what the issue was and referred me to a neuro urologist, thinking that it could be a nerve issue. The neuro urologist said that I definitely did not have a nerve problem but rather likely a problem in my back that was transferring the problem to the forward part of my body. He warned me that it could be tough to find the problem and referred me to a physiatrist to try.

The physiatrist narrowed it down to a hernia or more likely PN (specifically pudendal nerve neuropathy). I underwent an intensive ultrasound on my groin, which was negative for hernias. Therefore, PN was the diagnosis. My physiatrist put me on 300 mg of gabapentin 1x/day. After one day on the meds my symptoms largely went away completely. I felt completely connected to my penis, and the tightness in my lower abdomen was pretty much gone. However, I found that I couldn’t sleep and worse became morose with feelings of depression. After 3 days of sleepless nights I decided that I couldn’t live on gabapentin and stopped. Over a 6 week period my PN symptoms gradually returned. I have tried lower doses of gabapentin on two other occasions – 100 mg/day and 50 mg/day. Both provide benefit, though neither dosage is enough to eliminate the symptoms. But I experience mild to moderate depression with both dosages, such that I went off the meds quickly in both cases. I have spoken to my physiatrist about trying topical gabapentin or gabapentin suppositories to attempt to get the benefit of the meds without the side effects. I will try this over the next few weeks.

My symptoms today are low libido and moderate ED. I also have persistent feelings of muscle tightness on the lower left side of my abdomen and occasional tingling on my left scrotum. The muscles feel relatively soft to the touch, so I’m not certain that the muscle tightness is real. It could be just the nerve sensation I’m feeling, but I’m not sure. I also experience occasional muscle twitching in the lower abdomen – above the genitalia and also left of the genitalia. Those twitches are real, as the twitching is perceived by touch. During the daytime the symptoms are muted. I’m moving around, so I can ignore them. I am able to sit without discomfort and find no correlation with activity and symptoms. I am able to exercise without issue, though I do avoid lifting heavy weights. My real problem is at nighttime. It’s much harder to ignore the tingling, tightness, and twitching at night. The muscles between my genitalia and belly button feel like they tighten through the night, which makes me feel like I need to visit the bathroom. I get up 3-5x/night to go to the bathroom. And I can’t sleep on my stomach, as putting pressure on my lower abdomen is very uncomfortable. I have learned to live with the ED and moderate discomfort, but the utter lack of sleep is my fundamental problem. I have no problem falling asleep at night. My problem is staying asleep. So I take Advil PM before bed to try to maximize my ability to stay asleep in hopes of getting a decent night’s rest. Some days it works better than others.

Is this PN?
As I read through the posts I do wonder if I have been diagnosed properly. Unlike most folks in the forum I don’t find that sitting is an issue. And I don’t experience pain. My symptoms appear more muscular, or at least that’s how they feel to me. I do understand that PFD usually comes with PN, so the muscular issues I have seem logical, but folks on the forum don’t note muscular issues as much as straight pain. My experience with gabapentin also seems a bit unique to the posts I’ve read. The gabapentin seems to more or less cure my symptoms, as opposed to just stopping the pain. I’d also be curious to know if any others have experienced the same side effects as I have had to gabapentin. If I could find a way to benefit from the gabapentin without the side effects, I’d be very happy indeed. Any reactions would be greatly appreciated.

In the meantime, lots of folks on the forum have mentioned Dr. Potter. I’ll continue to work with my physiatrist but will reach out right away to Dr. Potter to see about getting a more confident diagnosis. Does that sound like the right physician to reach out to, or is there another you’d recommend? Thank you in advance for any suggestions.

Bill

[Andy_Pablo]

Hello Bill. I am a fellow (former) cyclist who had an incorrectly fitted, hard & narrow seat & some of your symptoms are familiar. Low libido, ED, tingling, pain etc... However, by the sounds of it, & this is in no way an attempt to minimise your condition, but it seems like you are able to manage your pain quite well. As things stand, you are in a good position to investigate less invasive treatments & hopefully that may help you with your recovery. My mistake was heavy lifting & my symptoms became far worse than they were before & that was life changing. So my advice to you is to be very careful about the physical activities you attempt. I genuinly hope you can find a treatment that works for you. If you have any questions, please dont hesitate to ask. Andy.

[Violet M]

Bill, I used to get shocks that woke me up at night, causing muscles to twitch. I don't know if that's the same thing you are describing.

You might want to try Lyrica which is a drug related to gabapentin. Many people on the forum have found it helpful when gabapentin wasn't. It might give you the same relief without the depression. May be worth a try, anyway. You could also try clonazepam at bedtime for sleep. It helped me to get a few hours of sleep at a time and lessened the shocks/twitches.

Violet

[bdyer50]

Thank you Andy and Violet for your kind input and assistance. Reading through the forum there are a bunch of physicians that seem to have expertise in PN. It doesn't sound like there is one single test that can diagnose the condition with 100% confidence, so getting to an expert seems more productive. Is there any one expert that you'd most recommend? As Andy points out, I don't consider myself a candidate for surgery or more aggressive treatment options. A confident diagnosis and prognosis would be great. I'm hopeful that with time my nerves can grow back, and the discomfort will pass. Thank you again.

[Violet M]

Your idea of having an MRI makes sense just to be sure to rule out any obvious impingements on nerves in the sacral area or any other areas of the pelvis. Just be sure they image the lumbosacral area, lumbosacral plexus, and the pelvic region. As far as MRI's to diagnose pudendal nerve entrapment -- that is a bit more "iffy" as far as accuracy. At a conference I attended I saw an image of an MRI from the Potter team showing narrowing in the Alcock's canal. It looked pretty convincing but some of the surgeons are saying that the MRI reports aren't necessarily showing what they find in surgery as far as nerve entrapments. The nice thing about MRI's is they are risk-free as far as causing a worsening of symptoms so it can't hurt to have one and it may provide you with valuable information.

Violet

[wendy7]

Hi,

You can also get a nerve conduction test on the pudendal nerve. Getting a correct diagnosis, before finding treatment is so important. I wish you the best with this.

Take care,
Wendy