missinglink

I was wondering if anyone here has had any experience with this.

I haven't been diagnosed by a doctor yet. My symptoms match perfectly though. My PCP is unavailable for the foreseeable future, and I'm not sure what kind of specialist to seek.
Thanks for any input.

https://www.webmd.com/pain-managemen...5e818ef0a7-2-5

MoAlpha

I would suggest a neurologist for diagnosis and, if that’s what it is, a pain specialist (usually an anesthesiologist) for local injections.

zandoval 

If it is in fact your pudendal-nerve then a simple steroid injection could help with recovery. In the old days this was not difficult. We would palpate to find land marks then using a 6" needle inject Depo-medrol into the area. But of course now days you need a Sonogram Guided injection. A Sports Medicine Doctor or Pain Management Doc should be able to handle it easy. I will PM ya a provider...

https://centenoschultz.com/pudendal-nerve-injection/

missinglink

Thank you all for the replies here.

Wanted to update. I've been to my PCP, and he agreed that it's Pundendal Neuralga. He referred me a specialist that has started me on a 'taper down' dose of Prednisone and a nightly dose of Gabapentin.
He did say that the nerve block procedure may be necessary if meds don't work. They seem to have helped a great deal at this point. Keeping my fingers crossed. The symptoms are very uncomfortable. A bike ride is still out of the question at this point though.

Thank you all again....

MinnMan

Unfortunately, I have. See this thread. https://www.bikeforums.net/pills-ill...g-outcome.html
(Maybe your search didn't find that b/c there's a typo in the thread title, and only mods can edit thread titles.)

As an update to the saga in that thread, I had a pretty good run - more than 6 months, where the pudendal nerve thing was nothing more than a minor annoyance. This corresponded to a period of much reduced training load, including longish periods off the bike. My unprofessional interpretation is that damaged nerves do heal if given enough time.

Recently, it's been back, and I can pinpoint the recurrence to one particular ride where I was foolishly trying to maximize short power burst at high cadence. The bouncing on the saddle likely injured the nerve again, and that night that familiar ache in my groin signaled its return.

Injections didn't work for me. I declined to take Gabapentin b/c I want my head to be clear and it didn't promise any theraputic benefit beyond short-term pain relief. I'll go back to over the counter pain relief if I need to, and I'm going to keep riding as much as I can.

The severity of my problem comes and goes, but years into this, it doesn't get a lot worse and it never goes away completely.

I hope you have a good outcome.

missinglink

Wow, that's a very helpful discussion. Thanks for pointing it out.
I'll update how things are at this point:

I'm still dealing with this, but to a slightly lessor degree. Any lengthy bike rides are completely out of the question at this stage. I can ride a few miles around my neighborhood, but that's about it. And I'll have mild symptoms after 3 - 4 miles.
BTW, this all started after a 17 mile ride in mid February. Nothing unusual about it other than the first decent ride of the spring. Everything on my Allez was the same as it's been for years.

There are other types of activity that will also kick the discomfort into a higher gear. Any type of 'squatting' position will do it depending on how long I stay in that position. I can tie a shoelace with no problem, but squatting in the yard for an hour pulling weeds set it off pretty bad. So I've learned to avoid that position as much as possible.

My discomfort is on the left perineum area only for some reason. My milder discomfort symptoms are a burning and/or aching sensation in that area. The worst one is what I see described as the 'pins and needles' sensation. I suppose that's the 'medical way' of saying it feels like crotch hair being pulled, along with burning and aching. I've come to call it 'setting things on fire'.

I've stopped taking Gabapentin completely. It didn't help that much, and I didn't care for the side effects.


The 'specialist' my PCP referred me to is a physical therapist, which surprised me a bit. The PT discussed nerve block injections, but for now, he wants me to do some physical therapy designed this specific injury. The PT has prescribed something different if I want to try it, but I haven't fill the scrip yet. A muscle relaxer called Methocarbamol.

My first session is May 10th. I was given a couple of exercises I could do at home in the meantime, but I get just a tad of aching after I do them. Not sure whether I should continue with those or not.
And I've considered a recumbent. I'd like to do some test riding just to see if it would set things on fire or not. I suppose it may depend on the PT outcome.

I'll try to update this thread as it may help others with this unusual issue.
Thank you again very much.......

MoAlpha

If you didn't like gabapentin, which is actually indicated for neuropathic symptoms, you will hate methocarbamol, which is not and is even more sedating. In my long-ago and limited experience as a neurologist prescribing gabapentin for nerve symptoms, the tradeoff tended to be worth it for moderate pain or worse. I took it for a few weeks for a disc fragment squishing a nerve root, but my leg felt like it was giving birth and I would have settled for complete unconsciousness!

missinglink

Ok, good to know. Thank you.
I'm glad I didn't get that filled now. I'm actually thinking about taking a gabapentin this evening.
I've done a few short test rides in the neighborhood with little to no discomfort, but for some reason, today it acted up more than expected.

missinglink

I had my first round of PT yesterday morning. I'll share some thoughts on the experience in case it might be helpful for others.

First of all, It seemed apparent that the therapist was unfamiliar with PN and had likely needed to 'study up' on it before yesterday's session. The actual PT was stretching and limbering techniques for the entire hip area. Much of it was resistance exercises. Some I could do at home, and some not. His 'goal' according to him was to enable the nerve to heal by giving it as little entrapment as possible. I'd seen some of these exercises on U-tube and even tried a few, but they'd caused some discomfort, so held off doing more for fear that I was doing more harm than good.

At one point in our conversation he made the comment that the nerve would heal at a rate of ~ 1 inch per month. Interesting, but without knowing how much damage was done, little help.

He suggested that if this PT didn't help, that I might seek a pelvic floor specialist. Looking back, I wish my PCP had done this in the first place. If I don't feel like I'm making progress in another month or so, I may ask him to refer me to one.

MoAlpha

I hadn't heard of this either and the entity seems rare and somewhat controversial, but nerve damage and/or some degree of scarring in the surrounding tissue seems entirely plausible. The main issue affecting recovery is really the state of the nerve sheath and the tissue it passes through, plus any sources of ongoing trauma (entrapment). Nerves do indeed regenerate at a rate of something like a mm/day or an inch/month, but regrowth requires an intact sheath and an unobstructed path back to the target.

The unpleasant "positive" symptoms are most likely due to abnormal activity in the spinal cord caused by faulty input from the partially damaged nerve. This kind thing is often caused by blocked regrowth, which leaves active nerve cells unable to reattach to their targets and generating bad input.

I know nothing about fixing nerves in the perineum, but there are lots of very clever surgeons out there, some small group of whom probably specialize in fixing issues like this. I imagine most of them operate on women with problems following delivery, where nerve damage is common.

missinglink

I feel like I'm very slowly making progress on this nerve problem. It's a slow process, and day to day improvement is hardly noticeable. But going back a month or so, it feels much improved.

I'm surprised we don't see this subject discussed more often here on Bikeforums , as it's most commonly known as "Cyclist Syndrome". A google search of that will present pages of hits on pudendal neuralgia.

Thank you again for your input. It's been very helpful.

missinglink

I wanted to post an update to this discussion as it may be of help to others.

To recap - my first doctor's visit was with my long time PCP in Late February of this year. He, in turn, referred me to a physical therapist, which was a bit surprising as I expected a pelvic floor specialist, neurologist, etc.
The physical therapist shuffled my medications around a bit, but never mentioned, or offered, actual physical therapy until I asked for it.

Once the PT was over, (six sessions spread over a couple of weeks), I felt somewhat better, but still had symptoms of nerve entrapment.

At the end of PT, the physical therapist doc sent me for an MRI. I'm not sure why this wasn't done from the beginning, but it would have saved months of precious time.

I received the report yesterday and this is the jist of it:

"There is a large T2 intermediate mass seen along the left pelvic sidewall which measures up to 8.7 x 4.8 x 6.1 cm (series 5, image 14). The mass encases the left external iliac artery and and vein and cysts along the anterior medial margin of the left
iliopsoas muscle. There is some additional suspected intermediate intensity soft tissue outlining the distal aorta and the common iliac vessels bilaterally with extension into the left lateral retroperitoneum (series 5, image 1)."

I am being referred to an oncologist and waiting now for when and where.

I had classic symptoms of pudendal neuralgia beginning in mid February. I was given medications, offered nerve block procedures, went through physical therapy, etc.

The reason I write this followup is to encourage anyone with PN symptoms to first ask your doctor for a pelvic MRI. This allows you to (hopefully) rule out the worst that could happen, then work backwards to the cause and recovery from it.

Thank you to all who have contributed to this discussion.

MoAlpha

Ohhh, ****. So sorry. I'm glad they finally got the MRI. A careful exam might have found other nerve involvement, given the extent of the mass, but in a cyclist I too might have been lulled into complacency for too long. I hope the pathology is relatively benign and please let us know what happens.

missinglink

I wanted to offer a bit of an update for others that may eventually experience PN.

It's been right at 5 months now since I first experienced symptoms. Burning, and 'pins and needles' sensation in the lower pelvic area.
After doing PT exercises and staying off the bike, I have no sensation of PN at all now. I'm able to squat/stoop without it flaring back up.

I'm riding some short loops around the neighborhood several times a week now, and so far, no discomfort. One of the changes that I believe has helped is moving my saddle as far forward as possible. At least for now. I saw this mentioned several times on 'cyclist syndrome' searches.
I'm sure it will take some longer rides to know for sure. But with the heat in Tx right now, I think it will be a while before I want to even attempt a longer ride.

As to this 'mass' that was discovered on the MRI - I've since has a CT scan and needle biopsy. The biopsy results will tell the story naturally, but the cancer specialist's comments on the CT seem to suggest that he thinks it's benign.
It's located well out into my hip area at about belt level. Nothing out there for it to disturb other than my iliac artery, which feeds blood to my left leg. I was asked if I ever had weakness in that leg while walking or biking, and I haven't. I'm not sure what will be suggested about what to do about this, if anything.

The anxiety of the unknown has worn me down. I've never had a serious health matter in my entire life.

Thank you for the help and support.

missinglink

After needle biopsy results, looks like I will be dealing with a form of lymphoma.

MoAlpha

Better than some things, but sorry to hear.

missinglink

I wanted to post an update in case it might be helpful to others.

After a recent PET scan, looks like this mass in my outer left hip is the only thing I'm dealing with. Which is very good news.

It is cancerous, but slow growing and a mild form of it. There was discussion (from me) of just doing nothing. I have no discomfort. I'm 75 years old - why put myself though this. But the doc says it could slowly grow large enough to cause pain/discomfort. He strongly suggests treating it now. Not when I'd possibly have a more difficult time with it.

I have complete confidence in the cancer doc that's treating me. He's scheduled me for 4 chemotherapy treatments, (which are actually 2 day treatments it turns out).
He'll then do a CT scan when those are completed. He expects it to be shrunk down to 'next to nothing' but will do 2 more treatments if there's much of it left.

He had originally wanted to do radiation, but this tumor is tucked so far up under my outer left hip, he doubted he could reach it all without damage to surrounding areas.

I'll go in Wednesday morning to have a "Port' installed in my upper chest for the Chemo.

I still cant feel this mass at all. Just got back from a 15 mile ride since we had some clouds that knocked the heat down a bit.

I'd be grateful to hear other forum member's experiences with Chemo treatments.

Thanks all........