Seeking input on mysterious condition!

[happyman]

Hello everyone,

Thank you to the mods who created this forum!

I come here today because I have not been able to get an answer from the medical system, and I am running thin on places to look.

I am a healthy 22 year old man who is fit and has never suffered from any sort of notable condition in the past.

I injured my penis during sex about 4 years ago. Since then I have seen numerous urologists and neurologists, who all insist that they dont know how to help me. My ultrasounds and mri are clean. It is quite the mystery.

My symptoms include:

-a chronically turtled penis (similar to when one get out of a cold pool, however mine is like that all the time)- this one drives me the most crazy

-numbness

-my glans is not able to erect

-i have a tingling throughout my penis, perineum and anus- this one comes and goes

Alpha blockers relieve me of the chronically turtled state but only temporarily. I seek the input of this wonderfully bright community.

Thank you!

[benraycamp0]

You likely have hard flaccid syndrome, and likely not pudendal neuralgia or nerve entrapment

Check out the hard flaccid subreddit

[happyman]

I was really hoping you didnt say that. In my opinion this is a copout answer. 1) i shouldnt have to go to a reddit to get help 2)that reddit is not helpful and full of depressed 16yr olds 3) doctors do not recognize "hard flaccid" other than one in san diego and his only suggestion is to get a nerve block

I understand you are trying to help benray, but thats not a helpful answer

[benraycamp0]

Gotcha. Sorry about that. Wish you the best brother.

[happyman]

Im just curious. What was the intention behind asking me to go to the hard flaccid reddit page? Its not like there is any answers or solutions there. You were essentially sending me on a wild goose chase

[benraycamp0]

Oh simply because your symptoms match that condition than what we typically see pudendal issues presenting as.

I didn’t know if you even knew of the hard flaccid subreddit or not. I saw this was your first post here so I assumed you didn’t (I guess my mistake) and just wanted to let you know about it.

I think you’re reading into this too much as if I planned this or something haha, or as if my words hold any other weight other than just being my opinion. I saw you were a new poster, you mentioned symptoms in line with the hard flaccid paper by Dr. Goldstein, you mentioned that alpha blockers helped (again not typical of pudendal issues), so I simply thought you might benefit from the knowledge that there is a community for that condition. I’ve not read too much on the hard flaccid subreddit, I just know it exists. It seems you know way more than me (again I didn’t know that since this was your first post here).

You could have simply said that you’ve seen that community already and I would’ve said “oh ok” lol.

But apologies if you felt I was trying to divert you away from the forums. Not my intention.

[happyman]

Its okay. I was being unnecessarily rude for no reason. I apologize. I ask going forward that you do not suggest the hard flaccid subreddit however, because its just a hub of frantic people who are all venting with random theories.

[Violet M]

Hello Happyman,

Since you have tingling and numbness in the distribution areas of the pudendal nerve besides just the penis (including the perineum and anus), I don't think you are totally off base to be suspicious of a pudendal nerve issue. What diagnostics have you had so far? MRI's? Nerve blocks? PT evaluation from a PT specializing in pudendal neuralgia? Exam by pudendal physician?

Violet

[happyman]

I have just been to multiple urologists and multiple pelvic floor therapists. They were unable to help or even deliver a diagnosis for me.

Ive had an mri done on the pelvic floor which the radiologist said showed nothing wrong.

I am not sure what the next step is. Is there a pudendal neuralgia doctor you recommend here in LA. I know i saw some people talking poorly about dr filler (who charges an exorbitant amount anyway out of pocket i might add) and stephanie predengast. I actually went to stephanies clinic for help for over a year but never met with her specifically- probelm is that we were not able to make the problem better despite any internal work or stretching work.

I am so mentally exhausted at this point. Every physician has just run me for my money and wasted my time. I absolutely dont know what to do next

[Violet M]

If there were any doctors in your area who treat PN, I expect Stephanie Prendergast's clinic would be able to tell you who they are. I'm sorry, I don't know of any besides Dr. Filler. PT most likely would have helped you by now if it was going to. Are you able to travel out-of-state to a doctor who treats patients with pudendal neuralgia?

Violet