Health Organization for Pudendal Education

Dear Elmwood,

I was able to "sit down" and read more of your info. from your original posting.

I hope you kept your appointment with Dr. Conway as I think he can rule in or out PNE.

I am no doctor, but it sounds to me like you may have some sort of obturator internus hernia, if that is even possible. Again, I am not a doctor, but it sounds like a hernia, but in a weird and rare spot. Dr. Conway does seem to be like a good place to start in giving a diagnosis.

If you did cancel your appointment, don't panic! Like I said before, Dr. Conway, is such a fabulous person who truly cares about helping his patients get better. He also understands all our fears and reservations about doctors having been mis-treated by so many for so long. So, he gets it and that is huge!

Let me know.

Take Care.

Annmarie

Elmwood,

A long post I know, please bear with me.

I know what you mean, the tingling can drive me crazy also. My scrotum, like electric current coursing through the lining. Sensations running back and forth through my penis at times, kind of racing. If I sit too long, like last night. I fell asleep sitting, plus today I need to sit to get some things done. So, right now, my scrotum, penis, tingling, racing sensations; drives me up a wall.

I think PN symptoms are so individual specific that it is so hard to assign a specific feeling or sensation to a specific nerve, etc., without, I guess going in there and looking.

My MRI done Jan 4 by Dr. Potter shows "at the pelvic floor and the dorsal margin of the penis (that) there are markedly dilated varices compressing the dorsal nerves to the penis bilaterally," which goes along much of my pain, etc.

Also, my MRI showed "slightly prominent varices coursing with the left ilioinguinal nerve." More pain for me probably testicular in origin.

I have avoided pelvic PT, figuring that any probing, pushing, shoving, etc. anywhere down there is mostly going to confuse the issue as that I am symptomatic in so many areas.

My mantra, nothing invasive. I live a life, maybe not normal, but a close approximation for a 65 year old male.

However, I am going to have an embolization of my pelvic varices March 12. I can see a probable high benefit to cost ratio to doing this.

What can I say to you? Be careful. Remember, when you ask for help, those in the helping profession will want to help you. But, it is so difficult to assess if what anyone can offer will help you or hurt you. There is no easy answer or path out of this affliction. Be careful, assess the cost/benefit to you.

Rick

Elmwood,

I too have these exact symptoms. I noticed my testicles get very close to my body too when I'm cold and actually when I'm exercising.

I'vet yet to be diagnosed with PNE (doctor told me it is prostatisis) but the more research I do the more it seems like PNE.

Hey guys.

Sorry for not getting back to you guys in so long but sometimes I just get frustrated with things and stop coming to the posts.

I did see Doctor Conway in NH and he did some tests with the needles in the perineum. He said things came up normal but that I should go for a nerve block. I'm going for one next week. Tramadol didn't work and I fear that I may have to go back on lyrica. Only thing that ever worked for me but side effects were equally as bad.

Anyway, just wanted to see where things were with you guys. It seems that we have some pretty similar symptoms so I think its important to keep in touch and keep track of each others progress. Who knows what we really have but if one of us finds out maybe the others will too.

Good luck. Hope to hear from you

Good to hear from you Elmwood
I know what you mean about staying away. . . I did for a while earlier this year, as too despondent to offer help, but am happy to be back.
Glad you are getting help. Hope the block works for you.
Take care,
Helen

Hi Elmwood. I'm not a guy so can't commiserate with you on any guy topics but I just wanted to wish you the best with your nerve block.

Violet

Thanks a lot ladies. Its good to have the support