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Experience with pudendall nerve damage? consequences, results, riding outcome?

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Experience with pudendall nerve damage? consequences, results, riding outcome?

Old 06-16-21, 09:12 PM
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MinnMan
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Experience with pudendall nerve damage? consequences, results, riding outcome?

(I am looking for information from people who might have been down the road I'm about to describe. I do not want advice from people who have not had this condition/diagnosis about what I should do, whom I should consult, what I should try, not do, etc.- unless of course, you have professional medical expertise that pertains)

I have long-standing pain in the left hip/groin area. It's not arthritis and though there is a labral tear, the hip expert (big shot - operates on professional athletes including at one time, Greg Lemond) is sure it's not my hip.

Finally got a referral to a neurologist who on the basis of an office examination. has given a preliminary diagnosis of pudendal nerve damage. Follow up tests are scheduled.

His advice was, "retire from cycling and find some other way to spend your time."

Negatory. Not going to happen.

Possibly this will lead me to a 'bent, which wouldn't be the worst thing in the world (I already own a Catrike),

But if there's anybody out there who has had a similar diagnosis:

a) have you continued to ride? Saddlled bike or bent?
b) adaptations (such as different saddle) that have helped? Or failed to help?
c) Did you take medications and did they help? I have a script for one, but the warnings are scary (from drowsiness to suicidal thoughts) and I'm not sure I want to go down that road.
d) Injections? Helpful?
e) surgery?

thanks.
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Old 06-17-21, 03:17 AM
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Yeah, it's frustrating when doctors dismiss the concerns of older active folks. I get that all the time from my doctors. Most of the patients they see who are my age are obese, heavy smokers and drinkers, in wheelchairs or walkers. So to my doctors I'm in great shape and shouldn't have any complaints. But they don't really listen. I might try a specialist or sports medicine clinic outside of my primary provider.

As soon as I've experienced any numbness or pain in the perineum and surroundings I've adjusted the saddle position, seat post, handlebars/stem, etc. I always carry a multitool and often stop to make adjustments whenever I install a new saddle or make any ergonomic changes.

When that doesn't work, I swapped saddles. I have a few saddles in a junk box that just didn't work for me no matter how many adjustments I tried.

The most common fix preferred by some cyclists nowadays, especially for triathlons and time trials, is a "nose-less" or split nose saddle like those made by ISM. I have an older Cobb saddle, once the favorite of tri-folk, but it's no different from the many conventional saddles by many manufacturers using a bit more padding and a cut-out for perineum relief.

I haven't tried an ISM yet but it's on my list for a bike with aero bars I'm putting together.

Currently my favorite saddle is a conventionally designed older Selle San Marco, probably from the early 2000s. Solid top, no cutouts, no split nose. Very thin padding. But the plastic shell is very flexible and suits me perfectly. It doesn't flex so much that it feels like a hammock, and I don't bounce while pedaling, but it flexes enough to conform and be comfortable.

My next favorites are Selle Italia, both similarly shaped to the Selle San Marco, but a bit stiffer shell. One has a cutout that seems okay.

I tried a slightly wider saddle with cutout designed for gravel bikes, but the extra width and cutout caused extra pressure on my sit bones. That's a risk with split nose or cutout saddles: without the perineum supporting any weight, that extra weight has to go somewhere else -- the sit bones, or soft tissue on either side of the perineum.

But hip angle is crucial too. A saddle that feels uncomfortable on an upright bike might be perfect on a drop bar road bike, and vice versa.
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Old 06-18-21, 10:50 PM
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BTW, another saddle to consider -- the Moon saddle. I've met one cyclist who used one and she loved it. I think she rode a hybrid but I'm not sure, it was a couple of years ago. The saddle was well worn so she'd ridden it for a long while.

I has no nose, and resembles a crescent shaped swing seat. That would require some adaptation for those of us who are accustomed to "steering" by leaning our thighs against the long nose of the typical saddle, or bracing against it while leaning into curves.
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Old 06-19-21, 02:49 PM
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I'm sorry you had so much trouble getting a diagnosis.

I started riding again in 2013 at 68. I started getting numb in my groin with an Avocet Touring saddle that had been great for a decade. At my age, I didn't not delay addressing the problem, so I sustained virtually no damage, so I may not meet your qualifications for responding, but I'll still respond.

An old fizik Aliante was better than the Avocet, but not good. Brooks B17 Imperial was better than the Avocet and fizik, but still not good. The low end ISM road saddle completely solved the numbness, but put all my weight on my pubic rami, which caused a saddle sore; it quickly became unbearable. That happens to some but far from all ISM users.

An SMP TRK did the trick for me. The pubic nerve and artery fit into the slot and the crucial bits hang over the nose. There's a diagram in Selle SMP's patent application, but I can't find a copy. SMP makes a number of seats with different seats working for different people. They think it's the level of padding, but I think it's the length of the pubic rami that makes a bigger difference. The TRK works for me. A taller person would do better with one of their other models, I think.

If the SMP hadn't worked, my next try was going to be a Rido saddle (rido-cycling.com), then maybe a Cobb. There are also some low volume $300+ saddles that have very little surface area to put pressure on the pubic nerve and artery (Infinity Seat is one example, but I think I've seen others). If I had been unable to find a saddle that worked, I was going to look for a used 'bent.

Good luck.
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Old 06-21-21, 02:04 PM
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Thanks for the suggestions and support.

Had one test today - an injection of lidocaine and steroids into the nerve. The "test" is based on whether the lidocaine eliminates the pain in the hour or so after the injection. The only way I could think to make this a valid test was to ride, as that what incites the pain. It was 18 miles to the clinic from my house, so I rode over there and back. The people at the front desk of the clinic were very nice and let me bring my bike into the waiting room.

Anyway, I think that the pain was helped by the shot, but I'm not completely sure. It felt weird riding home b/c parts of my leg were numb and that made made me feel kind of unsteady. And about 15 miles into the ride, the pain returned. Was that the lidocaine wearing off? Or was it the usual thing I experience in which the ride starts out pain-free, and then builds as the ride goes on?

A different test on Wednesday....
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Old 06-22-21, 02:27 AM
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The lidocaine injection would last an hour or two. However if it worked at all for awhile, you might consider discussing with your doctors some other options, including local injection of anti-inflammatories, or perhaps a course of oral anti-inflammatories.

You might also try some over the counter anti-inflammatories. While aspirin is generally a good go-to for this sort of thing, I can't take NSAIDs long term due to an auto-immune disorder. If I take aspirin or ibuprofen daily I wind up with psoriasis and psoriatic arthritis. So I take resveratrol (mostly from grapes, sometimes other plants, orally and in topical analgesic cream -- Ted's Pain Cream), bromelain (from pineapples, mostly good for bronchial and upper respiratory inflammation) and bee propolis (mostly for sinus inflammation).

Incidentally -- not entirely related -- a few years ago while waiting at an urgent care dental clinic to have a tooth pulled, I had a severe headache. It was unrelated to the tooth issue -- the tooth was dead and cracked, no nerves to cause problems, but I was concerned about a gum infection. However since childhood I've had severe headaches, variously diagnosed as migraines or cluster headaches. Like most of those, this was on one side of the head and felt like a corkscrew in my right eyeball, with pain radiating along the entire right side of the head toward the base of the neck and shoulder.

The dentist couldn't get to me immediately, but when the nurse told him I was in severe pain he got me into the chair just long enough to inject lidocaine, xylocaine, whatever they used. When I described the pain and he took a look at the tooth he agreed the headache probably wasn't related to the tooth. But when I mentioned the headache was dissipating he suggested injecting a bit more of the analgesic elsewhere in the gums. I agreed. The headache completely vanished within minutes. The entire right side of my head was numbed, without actually injecting xylocaine/lidocaine anywhere other than the gums.

The dentist suggested I be evaluated for trigeminal neuralgia. While he was cautious because it wasn't his specialty, dealing with the trigeminal and vagus nerve complications *was* part of his specialty for pain control.

After pulling the tooth and sending me home with a small supply of hydrocodone, I still felt so good I stopped along the way to check out a springtime street carnival. Unfortunately the lidocaine/xylocaine wore off after an hour or so and I was in misery again. So I headed home and popped one of those hydrocodones -- which wasn't nearly as effective as the local anesthetic injection.

Anyway, the point of this anecdote -- sometimes the actual source of pains may not be obvious or due to problems in the immediate area where we feel the pain. "Referred pain" can come from injury, illness or damage to other parts of the body. Sort of like that itch we can't scratch until we figure out to scratch where we don't actually feel the itch.
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Old 06-22-21, 02:29 AM
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Oh, and besides the other saddle recommendations, consider the Selle Anatomica saddles as well. These are pre-softened leather with perineum relief cutouts, made in the US. Most users describe them as feeling like a hammock. I've tried one, borrowing a friend's bike to ride around the block, and it does indeed feel like a hammock, and quite comfy. No idea about long term use, but most Selle Anatomica owners say these are very comfortable long term too.
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Old 06-26-21, 10:31 AM
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I developed a shaky left hand after years of road and mountain biking. Diagnosed as a pinched ulner nerve.
- six months of physical therapy didn’t help. No meds available for it.
- I gave up drop handle bars, but otherwise I just live with it. A “bent” bike may help.
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Old 06-28-21, 08:36 PM
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Soo, as is usual for me, it seems, I'm further down the road with no certain diagnosis.

The nerve injection was both lidocaine and corticosteroid. Based on riding over the last week, the cortisone didn't do anything. Later, there was another llidocaine injection into the hip, just to rule out a variable, and indeed, that did nothing.

Whereas I have a few minor symptoms of pudendal nerve damage - lack of sensitivity in certain areas, I don't have any of the classic symptoms - incontinence (thank heavens) and numbness. I think I do have some minor nerve damage, but I don't think it's the source of the groin/hip pain. Next investigation is to see if it is tendinopathy at the hip adductor insertion point.

Meanwhile, I had another bike fitting today - this time with somebody who I think really knows what he is doing. My last bike fitting (a couple of weeks ago) was with a PT who, it turned out, isn't mostly a bike fitter. It helped with some things but caused other problems. This fitting (PM me if you are in the Minnesota area and what a recommendtaion) is from a PT who is also a highly experienced bike fitter and a serious cycling enthusiast himself. Though I won't know for sure until I get a few hours on the road, the fit seems excelllent, with a better placement of my weight on the saddlle.

[General comment - I've had bike fittings from people who are basically bike people - bike shop people or coaches - and from physical therapists who aren't true bike enthusiasts. The best way to go, IMHO, is to find somebody who is both.]

More appointments to come (follow up with neurologist, another appointment with an orthopedist). Meanwhile, I keep riding as best I can. It's my life.
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Old 06-28-21, 08:42 PM
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Originally Posted by canklecat View Post
The lidocaine injection would last an hour or two. However if it worked at all for awhile, you might consider discussing with your doctors some other options, including local injection of anti-inflammatories, or perhaps a course of oral anti-inflammatories.

You might also try some over the counter anti-inflammatories. While aspirin is generally a good go-to for this sort of thing, I can't take NSAIDs long term due to an auto-immune disorder. If I take aspirin or ibuprofen daily I wind up with psoriasis and psoriatic arthritis. So I take resveratrol (mostly from grapes, sometimes other plants, orally and in topical analgesic cream -- Ted's Pain Cream), bromelain (from pineapples, mostly good for bronchial and upper respiratory inflammation) and bee propolis (mostly for sinus inflammation).

Incidentally -- not entirely related -- a few years ago while waiting at an urgent care dental clinic to have a tooth pulled, I had a severe headache. It was unrelated to the tooth issue -- the tooth was dead and cracked, no nerves to cause problems, but I was concerned about a gum infection. However since childhood I've had severe headaches, variously diagnosed as migraines or cluster headaches. Like most of those, this was on one side of the head and felt like a corkscrew in my right eyeball, with pain radiating along the entire right side of the head toward the base of the neck and shoulder.

The dentist couldn't get to me immediately, but when the nurse told him I was in severe pain he got me into the chair just long enough to inject lidocaine, xylocaine, whatever they used. When I described the pain and he took a look at the tooth he agreed the headache probably wasn't related to the tooth. But when I mentioned the headache was dissipating he suggested injecting a bit more of the analgesic elsewhere in the gums. I agreed. The headache completely vanished within minutes. The entire right side of my head was numbed, without actually injecting xylocaine/lidocaine anywhere other than the gums.

The dentist suggested I be evaluated for trigeminal neuralgia. While he was cautious because it wasn't his specialty, dealing with the trigeminal and vagus nerve complications *was* part of his specialty for pain control.

After pulling the tooth and sending me home with a small supply of hydrocodone, I still felt so good I stopped along the way to check out a springtime street carnival. Unfortunately the lidocaine/xylocaine wore off after an hour or so and I was in misery again. So I headed home and popped one of those hydrocodones -- which wasn't nearly as effective as the local anesthetic injection.

Anyway, the point of this anecdote -- sometimes the actual source of pains may not be obvious or due to problems in the immediate area where we feel the pain. "Referred pain" can come from injury, illness or damage to other parts of the body. Sort of like that itch we can't scratch until we figure out to scratch where we don't actually feel the itch.
I take tylenol and naproxen together, and they help my pain some. (aside - you can't/shouldn't mix NSAIDS - aspirin, naproxen, ibuprofen - but you can mix tylenol with one of those). These OTC medications scare me, as the risk of organ damage is significant. I take as little as possiblle and as infrequently as possible - only for my longer rides, so maybe 1-2/week at the moment. Also, if I am in a phase when I am repeatedly taking Tylenol I reduce my alcohol intake to zero. I would like to keep my liver. The medications do help. But in the long term, it's not a way to stay healthy. I appreciate your mention of alternatives.
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Old 06-28-21, 08:44 PM
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Originally Posted by canklecat View Post
The lidocaine injection would last an hour or two. However if it worked at all for awhile, you might consider discussing with your doctors some other options, including local injection of anti-inflammatories, or perhaps a course of oral anti-inflammatories.

You might also try some over the counter anti-inflammatories. While aspirin is generally a good go-to for this sort of thing, I can't take NSAIDs long term due to an auto-immune disorder. If I take aspirin or ibuprofen daily I wind up with psoriasis and psoriatic arthritis. So I take resveratrol (mostly from grapes, sometimes other plants, orally and in topical analgesic cream -- Ted's Pain Cream), bromelain (from pineapples, mostly good for bronchial and upper respiratory inflammation) and bee propolis (mostly for sinus inflammation).

Incidentally -- not entirely related -- a few years ago while waiting at an urgent care dental clinic to have a tooth pulled, I had a severe headache. It was unrelated to the tooth issue -- the tooth was dead and cracked, no nerves to cause problems, but I was concerned about a gum infection. However since childhood I've had severe headaches, variously diagnosed as migraines or cluster headaches. Like most of those, this was on one side of the head and felt like a corkscrew in my right eyeball, with pain radiating along the entire right side of the head toward the base of the neck and shoulder.

The dentist couldn't get to me immediately, but when the nurse told him I was in severe pain he got me into the chair just long enough to inject lidocaine, xylocaine, whatever they used. When I described the pain and he took a look at the tooth he agreed the headache probably wasn't related to the tooth. But when I mentioned the headache was dissipating he suggested injecting a bit more of the analgesic elsewhere in the gums. I agreed. The headache completely vanished within minutes. The entire right side of my head was numbed, without actually injecting xylocaine/lidocaine anywhere other than the gums.

The dentist suggested I be evaluated for trigeminal neuralgia. While he was cautious because it wasn't his specialty, dealing with the trigeminal and vagus nerve complications *was* part of his specialty for pain control.

After pulling the tooth and sending me home with a small supply of hydrocodone, I still felt so good I stopped along the way to check out a springtime street carnival. Unfortunately the lidocaine/xylocaine wore off after an hour or so and I was in misery again. So I headed home and popped one of those hydrocodones -- which wasn't nearly as effective as the local anesthetic injection.

Anyway, the point of this anecdote -- sometimes the actual source of pains may not be obvious or due to problems in the immediate area where we feel the pain. "Referred pain" can come from injury, illness or damage to other parts of the body. Sort of like that itch we can't scratch until we figure out to scratch where we don't actually feel the itch.
Oh yes, referred pain. I've had plenty of it and it can be very confusing. There are times when my present pain seems to be manifesting in the knee, calf, and ankle, and I really have to think about it to recognize that it's not the actual source
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Old 07-13-21, 09:30 AM
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Well, the saga continues. Consult with ortho and an MRI says that the hip adductor tendon is healthy (good, I guess). Ortho says source is probably a nerve problem.

Consult with neurologist and he says first injection into the nerve probably missed the nerve and wants to do another one. Also keeps pushing me to take Gabapentin , but having read the warnings label, I'm not going to do that. I'm not even sure if pudendal nerve damage is the problem - as noted above, I don't have the classic symptoms. Neuro also, says again, "the solution is to quit bicycle riding". Very frustrating to have a doc who totally doesn't understand.

Meanwhile, the new bike fit is helping a lot. No change in saddle, but a very different position (saddle set back and angle) Pain is reduced. I even did a century last Saturday (with the help of someTylenol).
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Old 07-20-21, 01:05 AM
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I'm always skeptical when doctors recommend Gabapentin. There's no evidence that it works for generalized pain, headaches, or even most nerve pain other than nerve pain related to shingles and one or two other causes.

The main reason docs and nurse practitioners suggest Gabapentin is as a placebo, and because their hands are tied regarding most prescription pain relievers. They used to offer hydrocodone or Tramadol for 2-4 weeks to relieve most chronic pain that didn't respond to NSAIDs. But no more. I doubt the docs actually believe Gabapentin works but they don't have many options if they want to keep their license and avoid being prosecuted for prescribing opiates.

If you want to try something else, consider GABA, the amino acid that's chemically related to Gabapentin. It's not a substitute for Gabapentin, but has similar action on a limited number of symptoms. I find it helps in pretty much the same way as my prescription muscle relaxers. The problem is that large doses of GABA tend to make me feel sluggish, pretty much the same as prescription muscle relaxers. So if I take the 500 mg capsules of GABA, I can pretty well write off the next day for anything other than an easy walk. Usually I'll pry open the capsule and sprinkle about 1/4 of the contents into a protein shake.

I also got a TENS unit a few weeks ago. It's much better than the last home TENS unit I got about 10-15 years ago. This little thing works as well as the commercial grade TENS units used by some chiropractors. I have to be careful with it, though. It doesn't produce a stinging or pinprick sensation like the old home TENS unit I had. As the setting is cranked up it can really contract and relax the muscles. I overdid it a few weeks ago on my neck and shoulder. Within a day or two the muscles were sore like I'd been lifting weights.

At lower settings I suspect all the TENS unit does is to mask pain, or stimulate the body to produce natural pain relieving chemicals. The relief lasts for 1-4 hours for most folks. While that doesn't sound like much, it beats Gabapentin for me, without the side effects of feeling sluggish the next day.
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Old 07-20-21, 05:40 AM
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Originally Posted by canklecat View Post
I'm always skeptical when doctors recommend Gabapentin. There's no evidence that it works for generalized pain, headaches, or even most nerve pain other than nerve pain related to shingles and one or two other causes.

The main reason docs and nurse practitioners suggest Gabapentin is as a placebo, and because their hands are tied regarding most prescription pain relievers. They used to offer hydrocodone or Tramadol for 2-4 weeks to relieve most chronic pain that didn't respond to NSAIDs. But no more. I doubt the docs actually believe Gabapentin works but they don't have many options if they want to keep their license and avoid being prosecuted for prescribing opiates.

If you want to try something else, consider GABA, the amino acid that's chemically related to Gabapentin. It's not a substitute for Gabapentin, but has similar action on a limited number of symptoms. I find it helps in pretty much the same way as my prescription muscle relaxers. The problem is that large doses of GABA tend to make me feel sluggish, pretty much the same as prescription muscle relaxers. So if I take the 500 mg capsules of GABA, I can pretty well write off the next day for anything other than an easy walk. Usually I'll pry open the capsule and sprinkle about 1/4 of the contents into a protein shake.

I also got a TENS unit a few weeks ago. It's much better than the last home TENS unit I got about 10-15 years ago. This little thing works as well as the commercial grade TENS units used by some chiropractors. I have to be careful with it, though. It doesn't produce a stinging or pinprick sensation like the old home TENS unit I had. As the setting is cranked up it can really contract and relax the muscles. I overdid it a few weeks ago on my neck and shoulder. Within a day or two the muscles were sore like I'd been lifting weights.

At lower settings I suspect all the TENS unit does is to mask pain, or stimulate the body to produce natural pain relieving chemicals. The relief lasts for 1-4 hours for most folks. While that doesn't sound like much, it beats Gabapentin for me, without the side effects of feeling sluggish the next day.
Thanks for the info - especially about Gabapentin
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