Health Organization for Pudendal Education

For privacy reasons, I shall keep this short, to the point, and vague. I am a male that developed PGAD in May of 2017. After much struggling and little help from doctors, I finally found DR IRWIN GOLDSTEIN who is doing PGAD research out at San Diego State University. He has cured multiple patients from PGAD by having his neurosurgeon, Dr. Choll Kim, preform laser endoscopic spinal surgery. PGAD, in most cases, is caused by an annular tear in the lumbar/sacral spine which causes the persistence of the symptoms while very tight pelvic floor muscles contribute to the symptoms (as well as a tight psoas major, iliacus, and other hip and thigh muscles). I had surgery with Dr. Kim in January and my PGAD symptoms are 80-90% better and are continuing to improve with physical therapy and dry needling. Please get a hold of Dr. Irwin Goldstein; he is very encouraging and really wants to help cure PGAD. If you have any questions, don’t hesitate to message me. I know how much PGAD can destroy our lives, so I truly want each of you to find some relief.

May God bless you.

Thank you so much for the info. And what good news for you!! I have heard of both of those doctors, and I know that they work together. Dr. Kim did surgery on the lumbar spine of another pgad patient that I know, and her pgad is almost entirely gone too. Do these doctors see patients with pn that is not on the dorsal branch? My pn is only on the perineal branch, but I have a bad back and have been trying to determine if there is a connection. Did you (or do you) have back pain? What part of the spine did Dr. Kim work on?

April

Ab17, this is wonderful news for you and hopefully for many others who are suffering from PGAD.

How did they know you had an annular tear? Did it show up on an MRI?

Violet

April and Violet,

I had an annual tear in my L5-S1 disc which showed up on an MRI. Goldstein told me to get both a lumbar and sacral MRI since I have had back pain all of my life. Initially my doctors back home didn’t see enough evidence to think that’s what was causing my pgad, but Dr. Goldstein and I looked long and hard, and sure enough there was a decent size tear in my disc. Dr. Choll Kim did the procedure and it turns out there was a much bigger tear than expected! Although I am not completely free from symptoms, there are finally weeks were I have little to no symptoms and some weeks that my symptoms are bad, but when the symptoms are bad now, they always occur after I have some muscle spasm or knot in my piriformus or iliospoas, so I am guessing that is compressing my pudendal nerve. I had surgery a little less than 6 months ago, so my back hasn’t completely healed yet. Both Dr. Goldstein and Dr. Kim agree that it could take over a year for my nerves to completely heal since they were compressed for so long.

I hope that helped,
ab17

It took me awhile after surgery for the symptoms to calm down so I agree there is a good chance you will continue to see improvements.

Violet

AB17,

That is very helpful. I've already set up a phone consults with both doctors and am now trying get new MRIs done, so I can send them recent images. I have annular tears at both L3-L4 and L4-L5 and other problems at L5-S1, so I am very much hoping my back is the source of my pn. Thanks again!

April

Hi ab17
i was going to send you a PM but thought, we as a forum would benefit if I asked my question out in the open for all of us to share your answer . i am hoping you are much better . If I have this right, you are about 10 months out from your surgery with Dr. Kim and I was hoping you could share with us how things are going? So glad you found, and had the means, to see both Dr Irwin Goldstein and Dr. Kim and wish you the very best for 2019.
Sadie

Dear April,
I noticed you posted right under ab17 in June of 2018 and seemed interested in his post, so wondered if you ever went to see Dr. Goldstein and Dr. Kim and if you do not mind me asking ...did you end up having any success with either doctor? I really hope you did and continue to pray for all of us. Sadie

Hi Sadie,

I did not see either one of them. I got an MRI of my pelvis when I did the back MRI (I asked the MRI place to use the Potter protocol, and I made sure it was done on a 3T MRI), and the pelvis MRI showed a 3.7 cm area of edema in between the STL and SSL, which the radiologist said was "highly suggestive of pudendal nerve entrapment." By contrast, my back MRI was not that bad---it showed only mild bulging and moderate arthritis, and the lowest bulge was F5-S1. Everything below that was fine. So, I switched my focus from back surgeons to pudendal surgeons. I now have left side decompression surgery scheduled with Dr. Hibner for December. I did talk on the phone with Dr. Goldstein (his phone consults are free) just to get his take on the MRI results, but I did not find the conversation useful. He dismissed the idea that I could have pne. He later reviewed my back MRI with Dr. Kim and sent me an email saying he could help me if I came for more testing, but it just didn't make sense to pursue that since my back MRI did not show any serious problems.

I think I might remember reading that you had decompression surgery. Is that right? How did yours go? Do you also have back problems?

April

Related journal article:
https://academic.oup.com/jsm/article/20/2/210/6985898#