Health Organization for Pudendal Education

Hello,

I'm very glad to have found this forum, and I apologize for the graphic nature of my subject line. However, one of my relatives has a terrible symptom which is likely caused a pudendal nerve entrapment. He has a sensation -- a persistent urge feeling in which he feels that he needs to ejaculate. He unfortunately has this feeling 24 hours/day and it has become debilitating. He has had multiple blocks and even a denervation surgery, but nothing has worked. He has seen many top doctors, but nobody has been able to help. We are starting to feel desperate to find something to help him.

Has anyone experienced this persistent urge or know someone who has had it?

Thanks in advance for any comments/assistance.

Linda

Does he have any pain ever?

Linda,
please search on PGAD to see that thread it may be issue and more info would be there.Janet

Hi Linda,

Yes, this is one of the possible symptoms of PNE and one that many people say is the most distressing (even worse than pain) although persistent genital arousal disorder (PGAD) seems to be more common in women -- or else maybe they are just more willing to talk about it but I have known some men with it. Here is a link to the thread where there is an ongoing discussion of it. http://www.pudendalhope.info/forum/view ... =48&t=1590

Do you know specifically what type of surgery he had as I'm not sure exactly what you mean by denervation surgery-- and what nerve was involved in the surgery? Some people have been mostly cured from PGAD, including myself though pudendal nerve decompression surgery although that is not the treatment option I would start with. Could you give more of a history of how this started? Has he tried myofascial release physical therapy yet? Are there any accompanying problems such as pelvic instability or SI joint dysfunction? Has he had an MRI yet and if so was it targeted toward imaging the pudendal nerve as done by Dr. Hollis Potter? Do you know what medications he's tried? Sorry for so many questions but it helps to have more info before giving tons of advice on things he may have already tried.

Thanks, everyone for your comments and questions.

Yes, he has pain as well. He reports that his penis and testicles are tender/sore.

Thanks, Janet and Violet. I will check out the PGAD thread. He was told that he most likely has PGAD. What complicates it a bit is that he has an idiopathic peripheral neuropathy (has some pain and other sensations in his feet), which was probably caused by many years of biking. We aren't sure if the biking caused the PGAD or an incident that occurred 2 years ago. He was carrying some suitcases and slipped on the stairs. One of the stairs hit his buttock very hard and he thinks that may have caused the PNE. (That was two years ago.)

He's on gabapentin for the peripheral neuropathy. He didn't have pelvic physical therapy for the PGAD-- a urologist examined him and said that he doesn't have something that would be helped by that. She seemed to know her stuff, but perhaps she is wrong and he should try physical therapy by a PNE specialist. The surgery he had was robotic surgery (in the Orlando, FL area) that apparently cut some nerves in the spermatic cord. Based on a diagnostic block, they thought there was a good chance that it would help with the urge feeling, but it did not. He may try pulsed radiofrequency therapy next. I saw one abstract that said this therapy helped in a case of refractory PNE, although the patient didn't have PGAD. Incidentally, I don't think he has pelvic instability or SI join dysfunction. Prior to this issue, he was very active. An MRI at Hopkins (not Dr. Potter) apparently revealed a PNE. However, they weren't able to do a successful block. I'm not sure that the lesion they apparently saw is the culprit but it's possible.

He's currently on Percoset, and Ativan at night, in addition to the gabapentin. He tried adding Lexapro, but thought it sedated him too much. Perhaps he should try that again. He also has an appointment in mid-January to see a therapist that does biofeedback since I thought it might help. Perhaps others have experience with that.

Thanks again!

Linda

Linda, your relative is blessed to have you helping them research all of the different possibilities. It sounds like you have done a lot of homework on this.

Do you have any idea where the entrapment is seen on the Hopkins MRI?

The theory behind the use of lexapro or similar SSRI's for PGAD is that SSRI's are notorious for making it difficult to achieve orgasm and are sometimes helpful in dampening the symptoms of PGAD although unfortunately, they don't help in every case.

The urologist who saw your relative might have been correct although I have to say that I went to "the best" urogynecologist in my state and she did not have a clue about the pelvic floor muscles. It was a physical therapist who was educated about PNE who figured out my diagnosis and also figured out that I had pelvic instability due to my very active lifestyle prior to PNE. Given the history of the fall that you are describing, I think that pelvic injury is a very real possibility and an evaluation by a PT knowledgeable about PNE and SI joint dysfunction/pelvic misalignment might help solve another piece of the puzzle for your relative. At least it's something he may want to have ruled out before heading into anymore invasive procedures.

Biofeedback is helpful for some people and is worth a try but if there is a nerve entrapment it may not be effective because if the nerve is irritated and sending the wrong signals, it may be impossible to relax the muscles. I tried biofeedback but it did not work for me. Unfortunately, that therapist was not educated about PNE and had me do things that damaged the nerve even further and it really pushed me over the edge from minor pain to major problems. So hopefully the therapist he is seeing for biofeedback also knows how to treat people with PNE.

Take care,

Violet

Hi Violet,

Thanks so much for all of your insightful words. I did speak with a physical therapist in Philadelphia who apparently specializes in male pelvic disorders. He, however, was fairly non-responsive and we didn't pursue it further. My relative is in Maryland. I will look at the PT list and see if I can find someone near by to evaluate him. Perhaps it's worth a try, despite what the urologist said. We will also probably pursue the pulsed radiofrequency treatments as a possibility.

Thanks again,

Linda

Linda, I wish him all the best with his treatments. Please let us know how things go for him.

Violet