Long Time Coming

[R2D2]

Hi All,

I recently just found this forum, and there is some invaluable information on here. Thank you all for sharing.

I would like to discuss my situation (38 y/o M) and see if anyone has any advice:

10/2021 - Severe polyuria (most likely due to stress on pelvic floor - sitting 14+ hours for work w/ little to no movement). Saw urologist - he told me to ejaculate two weeks straight since he thought it was prostatitis. This did not help, and actually feel that made the pelvic spasm worse and started getting pain while sitting.

12/2022 - Began pelvic floor PT from male pelvic floor therapist - Mahmood Shalaby. Excellent results within weeks with internal massage and PT. 75% resolution in 3 months. The provider was going out of the country for an extended time, and I figured I'd continue with an alternate PT that was closer.

4/2022 - Started with another PT. She was not as effective, but not bad. I got to 85% resolution with internal massage alone. Her office was still 35 minutes away, and I figured sitting and driving there was not worth it, since that offset the benefit of her treatment.

10/2022/ - 11/2022 - Switched to a new PT. Went to her a few times, then she thought the progress was not sufficient. On the 4th visit she internally massaged anterior to the rectum, closer to the prostate, and I felt a sharp pain while she was doing that. From the diagrams, I see that the branches of the pudendal nerve, particularly the perineal nerves, are there. I discussed that with her, but the pain went away after she released. It also felt much better once I left. I believe it helped relieve the spasm in the bulbospongiosis and ischiocavernosis underneath. On the subsequent visit, she massaged there again. I again felt severe sharp pain. I had significant tightness in the area where was palpated that night and severe pain in the region since then.

I am unsure what to do. I believe I had CPPS which was 85% better with treatment, and during the 11/2022 treatment with the new PT, she stretched the pundendal/perineal Nerve. I was able to sit for an hour, and now its difficult to even lay on my back.

MRI/MRN for pelvis and prostate - unremarkable
Blood work / Urine - unremarkable

I have flares with sitting and ejaculation - possibly due to spasms...

Can the Pudendal Nerve be injured with PT? Once injured, how does that cause PNE?

Thank you all for sharing!

[Violet M]

Welcome to the forum.

That's pretty disheartening to have your symptoms worsen after treatment. Yes, the PN can be irritated for sure, due to PT. I had some severe flare-ups after internal palpation of the pudendal nerve but it never lasted more than a week. If the PT massaged it very intensely, I can see how it might be injured, especially if she was pressing it against something hard, like a bone(maybe ischial spine) or ligament. Whether or not it could cause an actual entrapment, that's hard to say. Theoretically, if the nerve gets swollen and irritated, if there is a tight space for it to glide through between the ligaments, it might not calm down and the irritation may continue due to constant rubbing on the nerve when you move. So in that sense it seems possible that the nerve could be entrapped. Can you contact your first PT and get his opinion?

Polyuria is not uncommon with pudendal neuralgia. It was one of my early symptoms. Are you able to get an opinion from a physician who specializes in pudendal neuralgia?

Violet

[R2D2]

Thank you so much your input, Violet!

Actually, walking around/using the treadmill helps with the pain. Sitting is unbearable, and lying on my back is difficult.

I believe the PT thought the nerve area had a trigger point. So she pressed down firmly and held it the about a minute. (The area between the rectum and scrotum.)

I haven't contacted the initial PT bc it is difficult for me to travel that far now. I stopped going to PTs all together after the nerve was injured.

I have a pain management MD, but he said this was difficult to treat, gave me refills on my meds, and discussed a PN block. I see there are individuals that have triggers due to the nerve block, so I would rather hold off on that. There are botox injections, maybe I would try that.

I feel the spasms getting better each day, and I do have longer intervals of low level pain periods. I hope that once the spasms resolve, the nerve begins to heal.

In addition to pain meds, I am taking Nervive (600 ALA) and multi-vitamins.

[Violet M]

If you are slowly improving and you can handle the discomfort, waiting is a reasonable strategy. If the pain is seriously affecting your life, Botox would also make sense if you are having spasms and if your pelvic floor is tight. Some people have good results with Botox. It's always a guess as to whether an irritated or damaged nerve is causing the muscles to spasm, or whether the muscles are in spasm for some other reason such as a musculoskeletal anomaly and the spasming muscles are irritating the nerve. So sometimes there is some trial and error in figuring out what the root cause of the discomfort is. Hope you can get this figured out and get back to a normal life soon.

Violet

[R2D2]

UPDATE:

I started back with a new pelvic floor PT for the past several months (since late August 2023). My progress is in the right direction, but slow - very, VERY slow! No longer need the meds (oral analgesics, muscle relaxers, etc.) but I do take baclofen suppositories, they help.

Laying on my back is much better now - I can lay comfortably and even sleep on my back now. Sitting is still a significant issue. Sitting down for more than 20 minutes at a time, even in a cushioned seat, is difficult.

I have not pursued any other treatment modalities - like Botox, nerve block, shockwave, etc.

Another symptom I've noticed, one that has become more prominent since I am not perpetually in pain, is that I get symptoms after eating, which remain until I poop. If I don't poop, its quite uncomfortable. Maybe because there is an excessive response of the pelvic floor/anal sphincter to prevent fecal incontinence? That's just my guess.

Anyway, I wonder if anyone that has felt their PN was due to direct injury to the nerve (very during a procedure/exam/sport) had luck with pelvicrehabilitation.com? My PT had pointed that out.

My PT also mentioned "dry needling." I have not tried that either. Has anyone with direct pudendal nerve injury had luck with dry needling?

[Violet M]

I think dry needling is often used if there is a lot of muscle involvement with tense muscles. Like everything else, it has mixed reviews but if you have tense muscles it could be worth trying for symptom relief.

Looks like the treatment at pelvicrehabilitation.com is geared towards a series of pudendal nerve blocks and trigger point injections. I don't know what their success rate is. Can they point you to any peer reviewed literature that supports their protocol? From the many people who have posted on this forum over the years, I do not know of many who had long-term improvement from nerve blocks, but most people don't get permanently worse from them either. It can happen though, so there is always a risk/benefit analysis you have to do. For that reason, I see pudendal nerve blocks as primarily valuable for diagnostic purposes. If your pain is ruining your life and non-invasive treatments aren't helping, then it could be worth it to move to the next level and try some more invasive therapies such as nerve blocks/trigger point injections, and dry needling.

If you have a nerve injury without a nerve entrapment, theoretically it makes sense that some steroid nerve blocks could potentially bring down the inflammation and promote healing, but too many steroids could possibly damage the nerve. Prof. Robert's publication recommends no more than 3.

Violet

[AhmedRamadan]

Hi there,

I anticipated from your first PT's name that you live in Egypt... not sure if I got right though. If that's the case, I'd be more than grateful if you can exchange your latest PT's contact.

It all started in Nov '23 with severe burning sensation in my pelvic floor (testicles, scrotum, and penis) which used to spread to my inner thighs, lower back, and weirdly enough my arms & shoulder locks. Burning / pain worked more as cycles when off pain was only in my pelvic floor and bearable. Post going to 4 urologists, I was diagnosed with prostatitis although I'm still 27 yo till one day in Dec unbearable pain was felt in my buttocks feeling like hemorrhoids and sitting / sleeping on my back became no longer an option. At that point, I already did pelvic & testicle sonars, semen, urine, urice acid, blood picture tests which came out super normal needless to mention the amount antibiotics I kept taking and injections till early Feb with zero impact.

At this point my urologist recommend a pain specialist for me who asked for both lumbosacral plexus and prostate MRIs. Prostate was fully healthy ... while the other mri showed that my Ieft pudental nerve was swollen which might be due to my intense crossfit lifting. Following that, I had a nerve block injected with cortisone & lidocaine but sadly it failed... turning into a real frustration then I went to 2 neurologists who recommended a urologist knowledgeable with pudental neuralgia. This guy prescribed gabapentin and a supplement for me and I started feeling 20 to 30% progress for over a month but things suddenly got harsh again over the last week after traveling by car 2 consecutive days going back to point zeros and meds are doing nothing.
I'm now confused whether to go for another block with a different pain specialist with some PT sessions or go back to my current urologist.

At this stage, I think I became mentally stronger but I just want to go back to my normal life.

Appreciate your support.

[Violet M]

Ahmed, if you are in Egypt, are you aware of Dr. Ismail Shafik, son of Dr. Ahmed Shafik who was one of the early pioneers in publications on the pudendal nerve? I wonder if he could help you, or recommend who you could go to.

https://ismailshafik.net/

Violet

[AhmedRamadan]

Thank you Violet
I didn't expect to find a solution on the forum here.

This looks very promising! I'll contact Dr
. Shafei right away with high hopes

If I may ask you, how did your surgery go? Is it better than nerve blocks? Multiple doctors here in Egypt warned me of surgery saying that in a nerve my get hit or damaged while releasing the entrapment which would lead to unwanted outcomes.

Thanks again

[Violet M]

Hello Ahmed,

My surgery went very well - almost 20 years ago. The recovery was slow and took about 9 months before I could go off pain medications and about 18 months until I could sit for very long, but I have had a great life since. But I think it is fair to take the warning from your doctors seriously because not everyone who has pudendal neuralgia has a nerve entrapment that can be surgically fixed. And they may have seen people who got worse from surgery -- which can happen.

I was pretty sure I had a nerve entrapment because of my history of intense weightlifting, pain much worse on one side, pelvic hypermobility with ligaments chronically strained, short-term partial relief of pain from nerve blocks (several hours of improvement), tenderness when the nerve was pressed on via pelvic exam, worsening of symptoms with activity (movement), pain with sitting, and worsening of symptoms from internal work from PT.

On this forum, there are almost no people who post of long-term or permanent relief from nerve blocks. But I think they are a valuable tool in determining a diagnosis, and your doctor may know of people who had relief from them. But occasionally people get worse long-term from nerve blocks and some doctors don't recommend more than a series of 3 steroid nerve blocks because the steroid can potentially cause nerve damage. If you have a nerve entrapment from the nerve passing through tight ligaments, nerve blocks are not likely to fix it.

Unfortunately, there isn't a 100% foolproof way to determine for sure if you have a nerve entrapment before trying surgery, but this publication can be helpful in determining if you have an entrapment. https://www.pudendalhope.info/wp-conten ... iteria.pdf

Violet