Problems with masturbation and pudendal neuropathy

[Vladlen]

Hello everyone!
My name is Vladlen, I'm 22 years old male, live in Moscow, Russia.
Sorry for my bad English.

Less than 10 years ago, I began experiencing intense burning in the glans penis that would subside after masturbation but return within 3-5 days. When abstaining, the burning persists and intensifies to about 4-5 on the pain scale until the next masturbation episode, after which it drops to 1-2 - creating a vicious cycle. About a year ago, I developed left-sided perineal burning that gradually worsens when sitting.

Initial testing ruled out urethritis (urethral swabs/urinalysis), and prostate exams were normal (renal/bladder ultrasound, TRUS prostate exam, semen analysis). Penile ultrasound also showed no abnormalities. Temporary relief occurred with Midocalm, Combilipen, and Arcoxia, but symptoms returned after discontinuation.

Nerve conduction studies (ENMG) showed bilateral slowing. Lumbosacral MRI was unremarkable. Current treatment with Duloxetine 60mg and Gabapentin 1800mg daily (about 6 months) slightly reduced left-sided burning but didn't affect penile symptoms. Pudendal nerve ultrasound revealed left-sided adhesions to the sacrotuberous ligament and Alcock's canal deformation, plus fibrotic changes and singual calcinates in the thickened left obturator muscle. The left piriformis is also thickened, while the right shows only mild thickening of right obturator muscle.

I've undergone:
• Special exercises;
• Magnetic therapy;
• Acupuncture with pharmacopuncture;
• Osteopathic treatment including transrectal massage;
(While the osteopath achieved significant muscle relaxation, burning persisted unchanged).

This condition - particularly penile burning - has severely impacted my mental health. Masturbation has become compulsive, creating post-orgasmic lethargy, yet the unrelenting burning makes normal functioning impossible without it. As a religious person considering this activity sinful, but haven't any other way to reduce my pain, my psychological distress compounds.

A week ago, I received left pudendal nerve blocks at four different locations. Initial numbness brought mild relief, but burning returned by day 3. My neurologist and I are considering surgery, though I'm hesitant now given the prolonged recovery after surgery and uncertain of it's outcomes.

Has anyone experienced similar? Any thoughts on my situation? Thank you immensely in advance.

[Violet M]

Burning is a pretty common symptom of pudendal neuralgia and pudendal nerve entrapment, although often it is aggravated rather than relieved by sexual activity. So, I don't know what would account for the temporary relief of pain after masturbation, unless it somehow relieves some muscle tension that could be aggravating the nerve.

Whether or not to have surgery is always a difficult decision. One of my criteria in making the decision to have surgery was that my quality of life was already so bad, I was willing to take the risk. But only you can decide if your quality of life is already so bad that you are willing to take that risk. Some PN physicians have reported that younger people are more likely to recovery well from surgery.

The fact that you had some temporary relief from the nerve block, and that your pain is somewhat unilateral, suggests that you meet the criteria for a possible nerve entrapment that might respond to surgery. (According to the Nantes criteria). But unfortunately, it is impossible to know for sure ahead of time whether surgery will relieve your symptoms. And the recovery time can be lengthy, although looking back on it over 20 years ago, I have had a great life since my recovery and it was worth every minute of going through the long recovery time to have had so many good years since.

Sometimes if you write out the list of pros and cons on a piece of paper it becomes clear which outweighs the other. Since you are a religious person, I pray that God will make it clear to you what is the right decision.

Violet

[Vladlen]

Thank you very much for your response, Violet! I apologize for not replying sooner, as I've been swamped with studies.
I consulted with my neurologist, and he said that first we need to perform a series of pudendal nerve blocks. Only if there's no effect from these, we can consider the possibility of surgery.

[Violet M]

Did they say how many nerve blocks they are recommending? Professor Robert cautioned against more than 3 if they contain steroids - due to possible nerve damage.

Violet

[Vladlen]

Did they say how many nerve blocks they are recommending? Professor Robert cautioned against more than 3 if they contain steroids - due to possible nerve damage.

Violet

I have already done 2 blocks, and I plan to do 1-2 more, but I need to discuss this with my doctor.

[Gauxa]

From experience and what I’ve seen in others, conservative treatments usually only help a little once the nerve is physically compressed. If the block gave some relief, even for a few days, that’s actually a strong diagnostic clue that surgery might help. But yeah, recovery’s slow

[Vladlen]

Dear Vladlen,

I'm so sorry you're having these issues - nobody as young as you should have to suffer this much.

I can only share with you my own story. My RIGHT pudendal nerve became entrapped between the sacrospinous and sacrotuberous ligaments in-or-around 2009, and remained that way until Michael Hibner unentrapped it (and de-scarred it) in 2022. Ironically, I never (or almost never) noticed any problems in my genitalia before surgery - the pain was very focused at the point of entrapment (and also the perineum itself). However, after the surgery (which I consider a major success, although I have other pelvic issues I'm still addressing), I did notice a lot of numbness - for the first time ever - on the right side of my glans. I honestly didn't care because the reduction in pudendal neuralgia was well-worth it. This lasted perhaps a year (I'm just guessing), and slowly became normal again - I guess the nerve took awhile to regenerate. There was never any pain in the glans; just unilateral numbness.

This sounds impossibly simplistic, but the next time your pain spikes, try a cold pack on your perineum (or maybe sitting in a cold bath), for as long as you can stand it. It almost sounds like a combination of muscle tension and pressure which may be somewhat reduced by this. It's unlikely, but it's worth a try since it's so easy and inexpensive.

I don't know if this helps, but it's what happened to me. My advice to you, if it's possible, would be to keep getting diagnostics (have you tried Botox?), perform pudendal-centric physical therapy (which Dr. Hibner makes you do anyway before he'll operate), and then get yourself the best surgeon you can afford - your entire life is in front of you, and pudendal neuralgia is one of the worst chronic conditions there is.

Kind regards, feel free to write back with any questions, and ни пуха, ни перa,
FC

Thank you!

[Vladlen]

From experience and what I’ve seen in others, conservative treatments usually only help a little once the nerve is physically compressed. If the block gave some relief, even for a few days, that’s actually a strong diagnostic clue that surgery might help. But yeah, recovery’s slow

Thank you! I think the same way you do.

[tompster]

I think you should seriously consider taking Cialis daily (5mg or more).

Dr. Bollens recommended that I do this and it is quite helpful in reducing my discomfort.

He theorizes it helps patients because it increases blood flow around the pudendal nerve, which may be the reason masturbation helps relieve you of your pain. It can take a few days to notice a change however.

I believe the medical tern for this situation is that the nerve is "ischemic" (lacking healthy blood flow).

Also a breathing queue that seems to help me, is to breathe into my lower back on the side that is burning. I do this when I am not taking cialis.