Health Organization for Pudendal Education

Hi, i am here as a last resort but am so grateful to find a place to be heard. I am not sure if i am posting this in the right area, but i am new and absolutely desperate for help. I am 27 year old male who has been going through a lot the past year. I have read several of the symptoms of pudendal nerve entrapment, but i am not sure if that is what i have and no doctors here in Florida seem to know much about it. Anyway, i will start from the beginning. About a year and a half ago i was working out my legs pretty heavily and i remember doing some leg presses with my legs spread a little wider, after seeing a trainer do it this way. The next day my abs were incredibly sore. Keep in mind i worked my abs out regularly and they had never been this sore. From there on out, anytime i did anything that seemed to stretch my abs they would be sore for days. Even pull ups could make them sore. I gradually cut down on working out and left my abs alone. After a couple months they seemed to improve but would not dare to work them out again. I did however notice that i was getting a slight tingling sensation in the tip of my penis from time to time, and it began to feel cold when i was active. I also noticed that it began to curve as it was going from soft to hard, not a slight curve, but a significant boomerang like curve, but it would then straighten out when fully hard. I went to a urologist and he told me everything was fine and to quit worrying about it so much. I did and again things seemed to get better for a little while. I then began to get hip and groin pain. They diagnosed me with bursitis after an mri. However, it didn't get better and an orthopedist ordered another MRI which showed some labral tears. I thought i was finally at the bottom of the issue. He recommended surgery, as physical therapy had already been tried. So, i scheduled the surgery for months later so that it wouldnt interfere with school. In this time i got a girlfriend and became active sexually again. After a couple of weeks i began to feel the same vibration that i used to feel in the tip of my penis but now in the area between my scrotum and anus along with some light shooting pains on the left side of my penis. So, again i went back to the urologist.He said my prostate seemed fine and put me on cipro anyway. He also told me to refrain from any sexual activity or masturbation. I listened to him and things never really improved. It finally came time for the surgery with vibrations coming and going still and some shooting pain. I thought maybe the labral tear was causing it since my hip/groin pain was getting worse too. After surgery everything seemed great for a while. About a month into physical therapy Everything was feeling great until i noticed the same pulsating vibration that was in my groin in my foot. I also noticed that i was losing feeling in both of my pinkies and was getting pain in my hands. Doing anything with mmy hands for an extended period of time would cause pain. The physical therapist recommended and MRI of my back. They found a minor disc bulge in the l4-l5 and l5-s1 area. This could explain my feet, but not my groin or hands. I started physical therapy on my back and in this process my hip and groin began to hurt again. I have been to two neurologists annd have been tested for lupus, diabetes, MS and several other things that could cause diffused symptoms. The Nerve conduction study was done on my hands and feet and showed nothing. I have since gotten worse pain in my penis. It is sometimes a dull achy feeling in my scrotum or the base of my penis. Often times when i stand up suddenly i get a quick sharp shooting pain on the left side. It seems to be occurring more often and i am also getting some tingling near my anus and some shooting pain as well. It doesn't seem to be worse when sitting, but it sure sounds like a nerve in the area is affected. Just a couple of days ago i started getting a constant pain on the left side of my scrotum/groin area when i had been sitting down for about 30 min. I stood up and it relieved the pain somewhat but, i could still feel it with every step i took. I got home and took a hot bath and laid down, and felt better. It hasnt come back in a couple days, but i continue to have a cold tingly feeling on the left side of my scrotum/groin and get achy shooting pain feelings in my penis.

I have no idea how much of this pain is coming from my hip issues, or if it is coming from back or possibly a pudendal nerve issue. The neurologist i am seeing now just put me on gabapentin and doesnt seem to know what is causing all of this. I am 27 years old and all of this is making me so depressed. I am afraid every morning to go into work and everytime i have to walk around. It seems to get better as i move more, and some days are randomly better than others. I am afraid of this physical therapy and surgery for obvious reason, but i would like to atleast know what is going on. Does this seem like it could be pudendal nerve damage?? I know i don't have it as bad as some of the other people on here have indicated, but i don't know what else it could be. I can deal with the issues in my hands and feet, but these issues with the penis are making it very hard to get up each day. I have a strong faith in God and know that whatever is happening is happening for a reason, but i am beginning to feel like i will never know what is wrong with me. Does anyone have any ideas?? Could pudendal nerve damgee cause the penis curvature i was talking about?? Can it effect the scrotum/groin area?? Could i have it, but not have the same pains sitting down as a lot of you have?? please help, any response is greatly appreciated. God Bless.

Welcome to the forum.

I don't know about the hands but some of the other problems you are experiencing have been mentioned on the forum before. I'm not sure what type of physical therapist you saw but there are some listed on our website who treat pudendal neuralgia specifically. You can check out the ones in Florida here: http://pudendalhope.org/node/63#FL If one of them is near you they might be able to at least give you an evaluation and provide some further insights into your case.

I wonder if your original ab pain had anything to do with the psoas muscle going into spasm. You can see the relationship between the psoas and the pelvis at this link: http://en.wikipedia.org/wiki/Psoas_major_muscle

You can have an irritated pudendal nerve without having an entrapment. Entrapment is associated with pain while sitting. In my case I was working out and initially sitting wasn't a problem but as the nerve irritation progressed it became a problem.

Keep your courage up and keep searching for answers.

Violet M

Thank you for responding Violet! It is no nice just to hear from someone that can relate to what i am going through. I think I will look into seeing one of the specialist listed in the link you gave me. I appreciate the response more than you will ever know, thank you soooo much.

Hi There, welcome
As Violet mentioned, starting with the home pages and maybe some physio will be able to help. I do hope so. What about medication? Is there any in place for you at the moment. It can help such a lot, calming symptoms down. Let us know how you get on.
Take care,
Helen

Hi Helen,

Thank you for your response! As far as medication goes i just started gabapentin and b-complex 2 days ago. I take ibuprofen 800 along with some tylenol daily. Sometimes it is not enough, but i really want to stay away from any narcotic or possibly addictive substance. I am a former opiate addict. I have been completely sober for 6 years now, but i still don't want to chance it with any possibly addictive substances. It is getting to the point now where i may need something, but i want to be totally sure that i am not rationalizing me taking something i can survive without. If the pain indeed does get bad enough, i do have people that could hold medication for me and dispense accordingly, so that i am not tempted to abuse it.

My addictive nature makes it hard in dealing with this pain, because i want more than anything to stay clean and Sober. 12 step fellowships and supportive friends are the only thing getting me through this tough time. I have been tempted to drink or get high because of how bad things have got lately, but i pray and i know that God wants me to be sober and will protect me. I also can't emphasize enough how nice it is to have this forum to come to. I am feeling more hopeful already, so for that i thank you all from the bottom of my heart.

-Tim

Good luck with all this Tim, I applaud your sterling efforts, hats off to you.
At least you have another additional support mechanism here now too.
I know that Dr Andrews on the last blogtalk radio show with Jessica did say that he would always advise people to take omega 3 supplements/tablets (not sure, any would work I guess) Of everything available he would recommend that for everyone.
Take care,
Helen

Hi Tim,
I think you are getting the advice you need so I just wanted to let you know we care and understand how tough things are. You are obviously strong as evidenced by what you have already done, congrats on the 12step and hope we don't send you backwards on that. Friends and family and even co-workers have been a great support system for me. Not sure if it could be addictive but Tramadol is a non-narcotic painkiller that works pretty good for my flare ups. Hang in there and good luck.
Janet

So i got in contact with someone today who is at least knowledgable about PN. She said she is an occupational therapist though and not a physical therapist. I know they are pretty much the same thing, but should this matter? I have to get a prescription too i am hoping my neurologist won't have a problem prescribing for me. Thanks for all of the help!

Would an MRI of the sacrum be a good idea before checking for PNE? Would it show misalignment? could it explain the symptoms i have described? sorry for the 8 million questions i just havent had any people with experience to ask before.

Hi Tim,

You're not alone here -- I've heard other guys mention issues with penile deformities on this forum. I don't know if it has anything to do with a neuropathy or if it could be due to tight muscles. You could try myofascial release of the pelvic floor and see if it helps.

Yes, you should have an MRI to check for tarlov cysts or anything else that could be impinging on sacral nerve roots unless the MRI you already had is clear. You have to request specifically that they check for tarlov cysts or they might consider them insignificant. An MRI won't necessarily show a misalignment. You might want to read this thread started by Shawn before you have another MRI. http://www.pudendalhope.info/forum/view ... =69&t=2490

Tramadol is considered addictive even though it is a synthetic opioid. You could try cymbalta or a similar drug along with gabapentin. Neither are considered addictive. Some people find lyrica more effective than gabapentin even though they are related drugs.

Not sure about the occupational therapist -- it depends on what types of therapies they use. Did they tell you what they do to treat PN?

Violet