Potential Cause of Symptoms??

[outdoordreamer]

Hello all!

New to this forum - I'm hoping someone could provide a guess as to where symptoms are coming from, as doctors have given me frustratingly little info or help. I'm a 28 y.o. male, and almost exactly 2 years ago, I started having a rhythmic "buzzing" sensation in my penis immediately following orgasm during masturbation. It's like a light switch was thrown on - I never had any pudendal symptoms before that day. Nothing was super unusual about the orgasm, except I remember I was clenching my glutes really hard. Also around that time, I was aggressively stretching my hamstrings too. The buzzing wasn't painful, but annoying as hell and would come and go every few seconds consistently. This lasted a couple of weeks, and since then the constant buzzing has gone away, but I still have intermittent symptoms. I'll have stretches of time (sometimes weeks and up to a month) where I have NO symptoms, but then my symptoms will always return. Recently, my symptoms have been flared for more than a month and are extremely uncomfortable, which has me increasingly worried as I have never had a flare last this long and been this intense.

Symptoms:
- Intermittent electric like buzzing in penis - I would describe it as feeling like hitting your funny bone, but less intense. I feel it when my underwear brushes against the glans, and the left side shaft. It feels like it travels "through" my penis if that makes sense.
- Lower back pain that started on the same day as the buzzing, mostly on the left side right above the buttocks. It should be noted that I had a traumatic back injury skiing 1.5 years prior to this in my lower back area, but had no nerve problems after the accident.
- A similar buzzing feeling in both of my feet, on the sole of the foot mostly.
- Anus sometimes feels "hot" for a few seconds.
- Raw skin feeling/pins & needles around the pereneium/groin area.
- PT's say I am extremely tight
- I have no numbness, loss of erection, loss of sexual function, loss of bowel control, acute pain, feeling of needing to go to the bathroom constantly, or feeling like a "ball" is inside me.

Things that make it worse:
-Excessive sitting. Sitting on hard surfaces seems to be worse, but sitting on any surface for a long period of time is bad in general
- Orgasm seems to make it worse when flared.
- Any activity that involves the glutes - skiing, hiking, squatting, excessive sitting, lots of stairs.
-Stretching hamstrings
-Shoveling snow

Things I have tried:
- Activity modification: I try to stand mostly at work now instead of sit, and have cut out any sort of activity that involved the glutes as mentioned above. Reducing sitting seems to help the most.
- Not masturbating/orgasm for a month or so - this didn't do anything.
- PT for both my lower back and pelvic floor - This didn't seem to do anything.
- Medications - amitriptyline, gabapentin, muscle relaxers, duloxetine, rectal suppository. These seem to take a little of the edge off the symptoms but doesn't help a ton.
- Sacral nerve block at S2-S3 - this offered no relief.
-Pudendal nerve block - I've had this done twice - the first time I don't think they did it correctly as nothing was numbed after it, but the second one they got more of the nerve and it seemed to help, but didn't last long.
- MRI of both my lower back and pelvis. Pelvis was unremarkable, lower back revealed some minimal disk bulge at L4-L5 & L5-S1 and some facet atrophy, but minimal. None of my doctors think these bulges contribute to my symptoms.
-Acupuncture - this offered no relief.

Does anyone have any guess where these symptoms could be coming from or had a similar experience?? Doctors and PT's haven't been able to identify any cause, and I've seen multiple with no success. They say it's in my head, pass me off to someone else, or don't take me seriously as I'm a big guy who looks fine outwardly. I'm getting increasingly frustrated and depressed at the lack of help and progress, and is starting to affect my job and relationships. Does this sounds like symptoms of PNE or pudendal neuralgia? Anyone have any recommendations of a specific doctor to talk to about this? Thanks!!

[Violet M]

Hello,

Welcome to the forum. I doubt very strongly that this is all in your head. Many people on this forum have been told similar things. I was told to go see a psychiatrist at one point.

I think you are right that the first block didn't work. When I got my nerve blocks from Dr. Antolak, he always checked after the block to make sure it hit the correct area. Unfortunately, doctors don't always check afterward. He said that you should have a loss of sensation in the distribution area of the pudendal nerve. That would be the genitals, perineum, and possibly the anal sphincter area, although the anatomy of the inferior rectal branch of the pudendal nerve that innervates the anal sphincter varies for different people. It may come off higher up in the pelvis than the site of the pudendal nerve block in some people. Since you had some relief from the second block even for a short time, that suggests possible pudendal nerve involvement. I know of very few people who have had long term success with nerve blocks but they can be helpful in the diagnosis. This article https://www.pudendalhope.info/wp-conten ... iteria.pdf gives the criteria for determining whether you likely have pudendal nerve entrapment as opposed to just pudendal neuralgia. I met all of those criteria, except that contrary to their criteria, the pain woke me up or kept me awake at night.

Did any of your MRI's include the lumbosacral plexus? Just wondering since you are having symptoms in your feet also. Dr. Antolak typically recommended that people have the lumbosacral plexus checked as well as the lumbosacral spine. Sometimes people on this forum have symptoms in their feet and it's pretty common for people with pudendal nerve symptoms to have more things going on than just pudendal neuralgia. When I had PNE, the underlying cause was pelvic misalignment, pelvic instability, and SI joint dysfunction leading to an impingement on the pudendal nerve. These types of mechanical problems wouldn't necessarily show up on an MRI. You might also want to consider getting an MRN from Hollis Potter in NYC. https://www.pudendalhope.info/united-st ... icians/#NY There are some other places in the US who use her protocol for the MRN - you could call her office to see if they can tell you who around the country does.

I have heard that Dr. Hibner does telehealth visits so you might want to consult with him. You can access the list of doctors from our homepage at pudendalhope.info. There might be others on the list closer to you who you could consult with. Since you seem to have some mechanical issues going on, you might want to contact the Hesch Institute to see if there are any PT's near you who are trained in the Hesch method. https://www.heschinstitute.com/ It might be helpful just to get an evaluation to see if they can determine any possible mechanical issues. Some PT's are better than others at figuring out mechanical issues. But I agree, PT isn't always the answer either. You should know within 6-12 sessions if PT is going to help and for some people, like me, it just made things worse because the additional activity and rubbing on the nerve just irritated it more.

It can be exhausting going from doctor to doctor trying to figure things out. Hopefully you will find someone who can help you sooner rather than later. Let us know how it goes for you.

Violet

[stephanies]

OutdoorDreamer,

What kind of back injury did you have? That could be a factor in your PN pain. I have found that having different doctors review imaging sometimes leads to different information. What one doctor disregards as insignificant, another may connect to your symptoms.

Stephanies

[Aristocat]

Hello,

I have just read something about the spinal cord. It is written that the "Cauda equina" is the end of the spinal cord. This sends impulses to the legs and the feet. I don't know if this part of the spinal cord has anything to do with the pudendal nerve??? I don't think so. However, I do know that there is a small gland at the end of the coccyx, the coccygeal gland, which is not considered in medicine, but which is supposed to release neurotransmitters. You find this gland prescribed in birds but not in humans.
Perhaps you can find a doctor with whom you can discuss this hypothesis. Perhaps a neurologist would be the best option.
I'll try to find the German post about this gland and will post the link.
Wish you all the best
Aristocat

[Aristocat]

here is the link to the German report:

https://www.spektrum.de/kolumne/von-der ... ese/963639.

That is all I could find on German sites about this gland.

I only know, in Yoga this gland is well known and it is important to activate the nervous system in meditation.

And I know that most of the people suffering from PGAD have pain in the coccyx.

[stephanies]

Aristocat,

The pudendal nerve originates at S2, S3, and S4. One of my doctors calls PN "Chronic Cauda Equina Syndrome."

Stephanies

[Balenul]

Aristocat,

The pudendal nerve originates at S2, S3, and S4. One of my doctors calls PN "Chronic Cauda Equina Syndrome."

Stephanies

I am not sure Pn is same with Cauda Equina but what i know is a neuromodulator in that area could fix Pgad

[Balenul]

Hello,

I have just read something about the spinal cord. It is written that the "Cauda equina" is the end of the spinal cord. This sends impulses to the legs and the feet. I don't know if this part of the spinal cord has anything to do with the pudendal nerve??? I don't think so. However, I do know that there is a small gland at the end of the coccyx, the coccygeal gland, which is not considered in medicine, but which is supposed to release neurotransmitters. You find this gland prescribed in birds but not in humans.
Perhaps you can find a doctor with whom you can discuss this hypothesis. Perhaps a neurologist would be the best option.
I'll try to find the German post about this gland and will post the link.
Wish you all the best
Aristocat

This thing you read about spinal cord has any connection with that doctor Kruger interview you saw ? Or is different ?

[Violet M]

Cauda equina syndrome can include S2,3,4 so yes, it can affect the pudendal nerve distribution area. Here's a good picture of the areas potentially affected.

https://cmglaw.com/articles/cauda-equina-syndrome/

Sudden new or acute cauda equina syndrome is typically considered a medical emergency, especially since you lose bowel and bladder function.

https://my.clevelandclinic.org/health/d ... a-syndrome

Pudendal neuralgia isn't generally a medical emergency but is usually considered more of a chronic problem.
That doesn't mean you shouldn't have it treated though because nerve damage can occur over time.

Violet