Health Organization for Pudendal Education

Fabio I can relate to you. My pelvic pain started as s post-ejaculatory pain day after, and lasted several days. Later I had some better years, when I avoided the pain but the ejaculation was always risky (though not always connected with pain). Thus year I am struggling again, neuropathic burning, pinching pain at the base of penis, scrotum, groins etc. I think this pain is not attributed to pudendal nerve only but is more a kind of general neuromuscular origin. Once the pelvis get prone to neuromuscular inflammation, it tends to repeat and repeat. I am also taking Amitryptilin, with questionable effect. Lyrica did not work for me. Only help is clonazepam or diazepam, i try to avoid to consume it regularly. I think the key is lowering the upregulated autonomous nerve system.

Dear friend, thank you for your reply. I'm sorry to hear your condition but also very excited to find someone like me! It's the first time. Yes, the neurologist who examined me back in December and whose specialty is pudendal nerve also wrote that mine is rather a "muscular problem". He prescribed me amitriptyline/perphenazine (traded as Duo-Vil, Etrafon, Triavil or Triptafen in english-speaking countries). That did nothing, not even side effects. After reading your story I'm even more confident that Lyrica is not going to work either, but will give it a (short) try in order to tell doctors that I did that too.

I'm finding some relief by working on my mind/perception but now it's too early to tell, I promise I'll relate soon.

I'm also experimenting with Tens, have you tried? It appears to give me some benefit but only during pain (not before or after). I'm still trying different placements, so far the key appears to be the tingling delivered by the pad that's directly applied on the perineum. Maybe Violet has tried too?

Do you also find it *physically* difficult to abstain from sex? Like a pee-like urgence to orgasm just after a few days?

And most important: what DID work for you?

Yes, I tried a TENS unit. Before my pudendal nerve decompression surgery it caused the pain to increase when I used the TENS unit so I couldn't use it then. After the nerve was released and was starting to heal, I used the TENS unit to get the muscles relaxed and it helped quite a bit. The physical therapist should be able to tell you where to place the electrodes based on which muscles are in spasm.

Violet

Dear Violet, thank you for replying. I used to have a PT but she unfortunately has not been useful. I don't have anyone to advise me at the moment so I'm trying different placements on my own. A friend of mine, urologist, told me I can safely place one electrode directly on the perineum.

If you have obturator internus muscle tension, you can read my post on where to place the electrodes for that.
viewtopic.php?f=36&t=5266

If your piriformis muscle is involved, you can read my post at the following link:

viewtopic.php?f=32&t=4015

Violet

Thank you Violet! I will try both.

Hello Violet! Today I've been given the results of pelvic electromyography. Everything seems ok and functioning, even if I did it while in pain. Am I on the wrong forum? I don't know what to think...

Hey pudendo,

Have you tried any pudendal nerve blocks yet? Might be a good at least diagnostic option if not.

I know you mentioned disc degeneration and lordosis. Do you remember exactly where you had disc issues?

This is a total shot in the dark. But even though you don’t have “back pain”, I would get maybe get someone to have another look at those. And perhaps consider lumbar nerve blocks and/or ganglion impar nerve block and see if those provide any relief. This is all something to discuss with your pain doctor, etc of course.

There is a test called a “discogram” that can check for the existence of something called a “toxic annular tear” which do not really show up on MRIs. These can leak chemical fluid down into the sacrum and cause many potential issues.

I’ve seen several pelvic floor PTs at this point that can’t really find anything wrong with me. I saw one on Monday with over 20+ years of experience and also used to work in sports medicine. She even said she’s seen several male patients over the years that received pudendal nerve decompression surgeries yet were still symptomatic. Their main issues ended up being due to the lower spine.

I also listened to an interview the other day with some pudendal doctor (don’t remember, will try to find the video). He was attempting to answer the issue of high surgery failure rates. He is of the opinion that a pudendal surgery should work damn near 100 percent of the time in theory. IF the patient has true pudendal issues. He suspects many pudendal patients do not truly have issues originating in the pudendal nerve and that this is a big diagnostic problem. And there are also many other nerves to consider (iliolingual, genitofemoral, hypogastric, etc).

Research Tony Mork’s annular tears. And Dr Irwin Goldstein on lumbar issues as potential source of many genito-pelvic disorders.

I’m of course not saying the back is the case for you. As Violet said, it is very strange that you are only feeling post ejaculatory pain (and not pain all the time and in other areas) if it were due to a spine issue.

But it is another avenue to consider if you have not found any relief or cause with your current therapeutic options. Perhaps something during post-ejaculation is causing a particular irritation. Again, total layman non-medical non-doctor shot in the dark. Many doctors will brush-off “spine” issues because they are so common and often asymptomatic. But if someone presents with symptomatic issues in the absence of any other known cause, I feel these must at least be considered and triple-checked imho. We have to be our own health advocates.

I hope you find some relief soon.

Dear friend, thank you. You have an interesting and useful hypothesis here. I have actually suspended my PT sessions some months ago. The therapist did find some contracted "trigger points" but since I wasn't improving she concluded I needed psychological support. Now I'd like to visit another therapist who practices the "Stanford Protocol". I met him last year, he's a nice and committed guy, I'll show him the exams and also ask him about the spinal hypothesis. I confess I was a little puzzled by the results of the pudendal EMG, it looks like my nerves are perfectly functioning in that area. There must something with my muscular response but again, I will ask the physiotherapist.

I'm researching about Tony Mork’s annular tears but haven't found mentions of sexual dysfunctions yet.