Health Organization for Pudendal Education

Hi Violet,

Just to clarify maybe, it is my girlfriend who is going through this. But i try to find doctors and set up appointments for her and go with her.

dr Bollens thinks it is entrapped at the piriformis level, because she has some sciatic pain occasionally and difficulty walking/standing now. Pure PN would not give those symptoms he said. He did no internal exam though.
He said if botox doesnt help to relax the piriformis she should have surgery. He did no examination for this though, only clinical diagnosis based on what we tried/symptoms.
Saw another surgeon who did an internal palpitation. At one point he touched a spot pretty deep and she started crying from the pain. He also assumed it is at the level of the piriformis.

An EMG was done to see if the nerves are damaged but they say it looks fine, which leans to an entrapment. The nurse said it's easier to treat if there is "damage" rather than entrapment.

I massage her every day and she does osteopathy every week. Not that much progress. Maybe it takes a really long time, i'm not sure, nobody seems to know.

All these experiences tell us that it is probably an entrapment, but nobody can say where and be 100% sure. Thats the risk, should we operate and believe the surgeon who says he has 80% success rate?
Recently she developed lower back pain also which i find weird but could be explained by the hypertonic muscles that dont relax because of the pain. Or does the pain come from hypertonic muscles the other way around? Who knows...
Like you say, there will be a point when it's becoming too much, we only have so much time to live. If this misery keeps on for too long you have to take an educated guess and hope for the best.

Hi jvdd,

Several things came to mind as I read your post because you are describing some of the things I experienced. My first question would be -- is the pain worse on one side? And secondly, has she been evaluated by a good PT for pelvic misalignment or instability, including SI joint dysfunction?

Often when someone has pudendal nerve entrapment, it is not the only thing going on. I had sacroiliac joint dysfunction which can cause lower back pain and pelvic misalignment that can lead to various pelvic problems. I had both piriformis syndrome with some sciatic-type symptoms, mostly on the left side, and I had pudendal nerve entrapment, worse on the right side. If you have SI joint dysfunction the pelvic ligaments may not be holding things in place like they should which can cause impingement on nerves. Also, when you have pelvic pain, it can cause the pelvic floor muscles to go into spasm and over time more muscles start complaining and pretty soon your whole pelvis is on fire to where you don't want anyone to touch you and you develop central sensitization to where you jump when the phone rings.

From what some specialists have said, if you don't have improvement from PT within 6-12 sessions, you aren't likely to improve from it. I don't know if that would apply to osteopathy or massage too, but it seems like she should be seeing some improvement soon if it's going to help. If it's PNE, my experience was that internal vaginal massage caused major flare-ups so I quit doing that type of PT pretty quickly.

For the internal vaginal pelvic exam, the pudendal nerve is located on either side of the vagina and can be palpated at the ischial spine, slightly posterior to about 3 o'clock and six o'clock about a finger's length in (not precisely and could vary slightly from person to person), so when someone presses on it, if you have pudendal neuralgia it can be painful. I wouldn't say I jumped off the table on examination but it was tender.

I had difficulty walking and my PNE was primarily at the ischial spine, but Dr. Bautrant did nerve release along alcock's canal and cut away a bit of the sacrotuberous ligament at the falciform process on both sides, in addition to cutting the sacrospinous ligament at the ischial spine. So, your surgeon could be correct that the pudendal nerve is entrapped at the piriformis level, however, I just wanted to let you know I had piriformis syndrome with sciatic symptoms and I still get that occasionally on the left if I sit too long, but it is not at all the same as the pudendal neuralgia pain that I used to have. It is completely different than pudendal neuralgia. The piriformis symptoms were in the butt cheek -- not the perineum. That's not to say the piriformis muscle couldn't entrap the PN but maybe an MRI of the lumbosacral plexus (which is anterior to the piriformis muscle) could tell you if that might be the case. Anyway, I can walk for miles now and hike without any additional pain. Here's in interesting article on the anatomy. https://practicalneurology.com/articles ... l-syndrome

I hope some of this helps.

Violet

jvdd wrote: ↑Tue Jul 02, 2024 12:34 pm Hi Deborah,

Would you mind sharing your experience with dr. Jottard here or via pm(can be in french/dutch/english)?
I'm from brussels and have had an appointment with dr Jottard a year ago (CHU Brugman). In short she just referred me to the pain clinic because even if it was PN, she couldn't do anything about it she said. Which i found weird.
In the pain clinic they don't do injections because the doctor there doesn't believe it works. They give medication like amitriptyline and lyrica, say you need a psychologist and to massage the area with lavender oil... which is of course ridiculous because the pain is unbearable, not sure what lavender oil will do when only strong painkillers give some effect.
Suffice to say the experience there was really bad.

The following procedures that i tried in different hospitals/cabinets around Belgium are:
Kinesitherapy, Osteopathy, dry needling, cupping, massages, external radiofrequency sessions(for vulvodynia related pain), internal trigger point massages, Prolotherapy(sugarwater injections), pelvic wand, EMG scan, MRI scan, RX scan, Blood tests, Cortisone injection in the alcock canal, Cortisone injection in the piriformis, TENS machine, Botox injection in the piriformis, Pulsed radiofrequency on the sacral root nerves(which form the pudendal nerve).
All without much improvement. If you have any info/resources you can share(or anyone else reading this) or if there is someone who reads this and has further questions, please send a pm.

Also had appointments with Dr Beco and Dr Renaud Bollens for anyone interested in how that went.

sadly for a pn and not pne a surgeon can t do anything.surgery will make it worse....that s why is so complicated