Health Organization for Pudendal Education

Hello everyone. I have lurked around these forums for a year and have decided to tell my story at the risk of adding even more confusion to my mind. Some aspects of my issue are typical, and some are not, but here goes:

September 2007 I was playing recreational softball and experienced a groin pull as I was running the bases. I hobbled back to the dugout and sat a few minutes and when I went to stand up, I had a strong stabbing pain in my penis. I took it easy for a few weeks, but I would still get that stabbing pain when going from seated to standing from time to time. This went on for a year and I noticed that it was worse after I exercised. I would jog, cool down, drive home from the track, and then get the stabbing pain when getting out of the car. The pain usually only lasted a few seconds with some dull residual for maybe an hour.

In 2008 I decided that something hadn't healed right and began the quest to rid myself of the stabbing pain after jogging. Family doctor and Ortho doctor couldn't figure it out. A general surgeon declared that I had an inguinal hernia, which made sense that maybe the hernia was pushing on the pudendal nerve. Needless to say, that surgery didn't make any difference.

Since the pain was tolerable and mainly only after I ran, I continued to just live with it for another year. I did alot of reading on "sports hernias" and contacted the leading expert Dr William Meyers in Philiadelphia. I went in for the exam and had "Athletic Pubalgia" surgery with "adductor release" in 2010. This marks the turn for the worse. I'd give anything to undo that surgery. Within days, I began to get a burning sensation in my penis. I tried to follow the rehab protocol, but it got only worse. After a few months, I settled into the pattern that I am now living with: I don't have the stabbing much anymore, but any time I exercise (especially with lateral movement like soccer), I ache and burn for several days both on the left side of my groin and in my penis. Sitting makes it worse, doing nothing makes it better.

Recent steps:
1) Last summer I saw Dr gajraj who did an injection that made me numb, but didn't really help
2) Last fall I saw Dr Filler for the MRN, piriformis injection and Ischial spine injection- inconclusive
3) This winter I tried PT - it helped mostly because I pretty much quit exercising.

Options
1) Go back to Filler for more tests - I'm leaning this way. I honestly think he is my best shot as far as understanding the issue
2) Go back to Gajraj -not sure what he can do but he is local (Dallas)
3) Live with it and give up on jogging, soccer, etc for the most part (I'm only 37).

My only fear with Filler is cost and distance (my insurance didn't pay for anything last year). I'd be willing to spend the money if I felt nore confident that he had the issue isolated.

My biggest frustration is knowing that this all started from an acute injury, and that the pain is likely the resut of damaged muscles that keep going into spasm. Is there a non surgical option to stretch and strengthen these muscles (Obturator, Piriformis, Levator?)? PT just didn't seem to produce a lasting effect.

Thanks for listening. My issue is far less serious than some of yours, but I can't help felling like the active nature of my lifestyle hangs in the balance.

hi, I am so sorry you are dealing with all this, and that one surgery made matters worse for you.

have you had your hips checked to see if you have a labral hip tear?

I went to Dr. Filler for my first surgery, and it only gave me new plantar fascitis and sciatic like symptoms with no pain decrease. Ask Ezer who went to Dr. Filler how his experience was. Or PM me if you'd like to know more.

Sabot, welcome to the forum and I am so sorry to hear of your troubles. I have not seen Dr. Filler so I will let you draw your own conclusions about how individuals have felt about his treatment by reading through the forum. Read through the threads on Dr. Filler by using the search option with his name. You also might want to check out the TIPNA forum and read posts on individuals who have been treated by him.

Did PT help? If so then coming up with a home treatment plan that you might always have to do is a good option. It sounds like you are in to exercising so coming up with a home program would be something you would do. Have you tried swimming? What about finding a massage therapist that specializes in sports injuries and have them work on you once a week?

As you probably know Dr. Filler is well known for his work on MRN's. There is information on this forum regarding the MRN versus 3T MRI. You should look through the forum on the 3T MRI by Dr. Potter in NYC. She has come up with amazing results and might be able to answers some of your questions. If there is scar tissue around the pudendal nerve then it may show up on the MRI. She will also look at the other nerves in the pelvis. The radiologist Dr. Hibner works with in Phoenix is working on replicating the MRI that Dr. Potter does in NYC so individuals on the west coast don't have to travel so far. I don't know if they have it exactly as Dr. Potter yet.

It is possible and much more likely that you have damaged another nerve such as the genitofemoral or ilioninguinal as they are sensory nerve to the penis and scrotum. One or both of these nerves have been known to get damaged in groin injuries. This might be another avenue to ask a physician about.

I recently saw a Dr. Dellon in Baltimore. He really knows the nerves of the pelvis, more than any of the pelvic specialist I have seen and I have seen a number of them. Sadly, he doesn't take insurance but you can submit to your insurance company for reimbursement. He might be able to figure out which nerve or muscle is causing this pain.

Just typing out loud to give you some suggestions. Not that you want my advice but I would see if the insurance company would pay for the MRI with Dr. Potter.

pianogal wrote:hi, I am so sorry you are dealing with all this, and that one surgery made matters worse for you.

have you had your hips checked to see if you have a labral hip tear?

I went to Dr. Filler for my first surgery, and it only gave me new plantar fascitis and sciatic like symptoms with no pain decrease. Ask Ezer who went to Dr. Filler how his experience was. Or PM me if you'd like to know more.

I am really intrigued by your post! Dr Meyers who did my sports hernia surgery suggested this exact same thing, but here is what happened:

I saw an ortho in early 2009 who did an MRA of the hip and stated that it looked normal. When I sent that MRA to Dr Meyers, he concluded that I did have a small tear and referred me to a different ortho, Dr Freeman. Dr Freeman did a physical exam and reviewed the old MRA and declared I DIDNT have a labral tear...who should I believe? Should I get another MRA?

I'm still not sure I understand exactly how a laberal tear results in my penis hurting, but apparantly there is a relationship.

TO NYT: I have read extensively about different folks experience with Dr Filler. My personal experience was pretty positive. While he doesn't have the warmest disposition, he took alot of time with me and seemed to be listening intently to everything I said as he formulated his opinion. Is his staff inefficient - YES! Is he expensive - YES! I guess the thing that made me choose to see him was the possiblity of a less invasive surgery after getting a diagnosis. In my case, the MRN wasn't super conclusive.

I am wide open to suggestions and appreciate the idea of seeing the Dr in New York. My biggest question there is whether or not the test and doctor is covered by insurance? My MRN wasn't covered at all, and I can't afford to keep flying all over for testing. Second, if Dr Potter finds an entrapment, what does she do to repair it?

Your othre suggestions about home PT are dead on, and I need to be more diligent, because it does help some. I am very grateful that my probelm is somewhat intermittent and somewhat predictable, but very frustrating because I used to be so active.

Thanks much for the comments.

Hi Sabot,
Dr. Gajraj is my Pain Medical doctor as well.What kind of injection did he do?Has a done a Botox injection in your Obturator internous muscle.On another note ,tell him to do a dorsal nerve block as well as illiongional nerve block.

Dr. potter is a radiologist and she can visualiae the Pudendal nerve or dorsal nerve scarring or entrapment.If that's the case then you can wither go to Hibner for a PNE/dorsal Nerve decompression surgery or Dellon in Baltimore or Aszmann in Austria.

PM me if you need more information.

Kind Regards,
Ali

UPDATE:

My Athletic pubalgia surgeon said a year ago that I had a hip problem even before he operated. Here is what I've done since my last post:

1) Saw Dr Gajraj to get a referrral to Dr Potter for MRI (insurance hasn't approved it yet)
2) Saw an OS and had MRA of my left hip
3) Scheduled an appt with Dr Catellano (sp?) in Hibner's clinic for May 11th.

The OS confirmed today that I have a labral tear and that I have FAI in my left hip. I will be having a steroid injection to the hip next week to see if it helps with the PN or not by relieving the hip. They are trying to confirm that my nerve pain is indeed related to my hip being messed up. My gut tells me that there may be some relationship, but I am still not sure how the burning and stabbing pain in my penis is related to my hip.

Before I have hip surgery, I am hoping that someone can shed some light on the probability that fixing the hip will set the pelvis back in alignment and stop the nerve pain. Otherwise, I will have the surgery, go through a lenghty recovery, and still have to push ahead on the PN front.

Thoughts anyone?

I looked up some more information on FAI and here's a link in case anyone is interested in learning more:

http://tinyurl.com/698h25r

These are the symptoms associated with FAI:

Symptoms

There may be no pain or symptoms
Pain or aching (usually located at the inner hip, or groin area), usually after walking, or prolonged sitting (such as in a car)
A locking, clicking or "catching" sensation within the joint
Pain sitting for long periods of time, like in a car
Difficulty putting on your socks and/or shoes
Difficulty walking up hill
Low back pain.
Pain at the SI (sacroiliac joint on back of pelvis), the buttock, or greater trochanter (side of hip).
It is often confused with other sources of pain, such as hip flexor tendinitis, pain from the back (disc or spine), testicular pain, sports hernia.


I guess the possible relationship I can see would be if you were having pain in other areas of the low back or pelvis that caused your pelvic floor muscles to tense up or caused you to guard one side and develop a pelvic misalignment causing impingement on the pudendal nerve.

UPDATE:

It is NOT PNE!!! My penile pain apparently comes from a dorsal nerve entrapment. I saw Dr Potter yesterday, and i cannot recommend her more highly! The whole staff at the HSS was fantastic and helpful. She also confirmed my FAI and labral tear, so I am planning to address the hip first in hopes that a return to proper pelvic symmetry will reduce irritation on my dorsal nerve. If not, i am going to have a dorsal block and possibly dorsal decompression.

Thanks to all for your thoughts and help. I see Hibner's group next week.

Sabot, I'm glad to hear you have some answers now and wish you the best of luck with your treatment plan.

Since the dorsal nerve is a branch of the pudendal wouldn't an entrapment there still fall into the category of PNE?