Health Organization for Pudendal Education

There are SO many different pelvic entrapments reported on this site now, I can not keep up ! !
I wondered if we could list them, any symptoms particularly specific to that entrapment and who was responsible for the diagnosis.

Imaging advances have shown that there are more areas of entrapment than even some prominent PN doctors have thought.
The unfortunate consequence is that some people are told 'there's nothing wrong' or 'it's all in your head', as some PN medical professionals are not aware of medical advances in this area. They often then can't help the (dorsal root , ilionguinal, perinium) PN patient when there is another doctor who could.
Indeed we have just had this posted about hernias causing entrapment in women http://www.nytimes.com/2011/05/17/healt ... 1&emc=eta1

My entrapment is fairly uncommon here, maybe because this is a pudendal site primarily'.
I have 'complex varient piriformis syndrome with sciatic, pudendal and gluteal involvement' and pudendal entrapment at Alcocks canal. My pudendal entrapment is at the sciatic notch, because of a spasmed piriformis muscle.
I would say that my symtoms are 'the usual' pudendal ones . . . the main differences being buttock pain (piriformis) and sciatica.
I was diagnosed by Dr Filler, who I know has a 'leaning towards' a piriformis diagnosis but given my symptoms, that is the only one that fits.

To be honest I still haven't a clue about the Alcock canal involvement and which pain can (if any) be attributed to that. It just showed up on a 1 Telsa MRN. I know I have ischeal tuberosiy 'contact' pain but don't know what specificaly that can be attributed to. Maybe thats getting too involved. . . .
I think I should be at the bottom of any list actually.

This post is more to help people differentiate between the different areas of pelvic entrapment causing PN symtoms, . . . . . with a view to them being directed to the best treatment for them at that time.
For instance

ilioinguinal nerve
by Ezzl » Thu Apr 28, 2011 6:18 pm

Hi my friends,

Well it looks like my ilioinguinal nerve is entrapped. I will be having the nerve block/injection to see if i can get any relief from the pain the nerve is causing. Has anyone had the ilioinguinal nerve surgery?

Ezz
Sorry I stole your post Ezz, but if you could say if there are any particular symptoms with this, that would be great.

There are many medically able people on this site who may be able to help with entrapments other than their own and that would be great too.

Cheers,
Helen

helenlegs 11 wrote:My entrapment is fairly uncommon here, maybe because this is a pudendal site primarily'.
I have 'complex varient piriformis syndrome with sciatic, pudendal and gluteal involvement' and pudendal entrapment at Alcocks canal. My pudendal entrapment is at the sciatic notch, because of a spasmed piriformis muscle.
I would say that my symtoms are 'the usual' pudendal ones . . . the main differences being buttock pain (piriformis) and sciatica.

Helen, the question is, why is your piriformis in spasm? I also had a piriformis in spasm with sciatic involvement and major buttock pain so I don't see your symptoms as so out-of the ordinary for PNE. Once the pudendal entrapment at the ischial spine and alcock's were fixed the piriformis spasm, sciatic pain, and buttock pain went away without doing a thing to the piriformis muscle except for using a TENS unit for awhile after surgery to calm it down.

Violet M wrote: I also had a piriformis in spasm with sciatic involvement and major buttock pain so I don't see your symptoms as so out-of the ordinary for PNE. Once the pudendal entrapment at the ischial spine and alcock's were fixed the piriformis spasm, sciatic pain, and buttock pain went away without doing a thing to the piriformis muscle except for using a TENS unit for awhile after surgery to calm it down.

That was my experience, too. Although I haven't used a TENS.

Helen,
I have also been diagnosed with PNE due to piriformis compression by the doctor that diagnosed you. It is also true that my piriformis was spasming at times. The piriformis surgery that was performed by that doctor did not help me one bit.
I have received enough PMs subsequently to realize that I am not the only patient having received that same diagnostic and done the same surgery without resolution of PN symptoms.

Thank you Guys,
Yes Ezer, I think that Dr Filler does seem to 'favour' : a piriformis diagnosis.
The reason I said I was possibly unusual is that my piriformis problem is the primary one, in that after a fall I developed an egg shaped lump on/in my RH muscle (haematoma, rupture ? ? dunno) which was there for about 3 months. This is still the site of constant pain and if I press on that spot I get a sciatic pain down my leg. think I have developed scar tissue on that spot which has entrapped the sciatic and perhaps pudendal nerve there.
I would probably say that the LH side is responding TO the pelvic problems but the RH side is definitely a leading factor in them. At least that particular spot is, maybe the muscles remain in spam because of instability ? ? It's a complicated conundrum! If finances were no prob I would come over and get a Hollis Potter scan.
So where the majority of people seem to develop piriformis syndrome because of pelvic instability and/or pudendal problems, I'm, pretty sure that I need the Piriformis op as that spot is my primary problem. Oh yes and I didn't have pudendal problems until a bit later. . . .
Pudendal entrapment has been seen at Alcock too (MRN) so it may be that I need surgery for that too BUT I didn't have any problems before the fall and subsequent lump. I am hoping that piriformis surgery will sort the lot out but I have yet to meet the surgeon to discuss what will be involved.
Cheers all,
Helen

Thanks for your explanation Helen. I see now why you feel your problem is a bit different and I hope your surgeon will be able to sort things out for you.

Hi All,
I feel my pain or entrapmenet is different as well. I don't get burnign or pinching, or numbing etc...My pain is throbbing severe on contact pain as soon as I sit no matter what cushion I use. the pain is on the ishial tuberositites, gluteal area and at times the perineum (r0ight side) It is so disabling that I cannot drive. I also can't stand up for more than a few moments without pain ih these areas begining.. I also need to lie on a special temperpedic bed or my gluts hurt...
Dr Dellon examinined me and diagnosed the inferior cluneal nerve rather than the pn, I did have a postive blockl and I waiting for Dellon to get back to me on a surgical decision,... no response for some time from his office or email either
Anyhow My pain began with IC/blladder issue which I still have and over time the sitting pain began. I suspect the several nerve blocks I had made things much worse..
I am in agony daily.
Anyway any thoughts of what type of entrapmebnt this is? It doesn't sound like classsic PN ...everyone gettng surgery of any kind always seems to mention burning
I just want to ensure I dont get surgery for nothing.. I did have a 3 T Potter MRI in Dec. She advised me to get my pelvic varicosities emboliized. I did so, and no releif after 3 weeks time.. will see but I dont think they are the source of my sit pain...
Pls help! I am in so much pain and just despereate for relief, I can't drive or eveb and take of my family...My sanity is on its way with this constant pain.
Pls Pm me if you like as I cannot locate my replies on thies boards. If not I will try to find ur response on the boards under this topic..
Thansk so much folks.... you are great!
Kathy

Hi Kathy,
You sound very low, understandably so.
In this post 'different entrapments', I was hoping to try and list separate established ones, to help people and perhaps dirirct them to the doctor best for their specific symptoms.
To be honest I think the whole problem is just too complicated. However, I think it is worth pointing out that nerve pain can manifest itself in one or many different ways. There are a whole list of symptoms on the home pages and if someone suffers from 1 or 2 or several, it means that there is very probably some nerve involvement. Everyone doesn't need to tick off all of those symptoms to have a nerve problem.
I did look at the cluneal nerve on here http://home.comcast.net/~wnor/glutealregion.htm and could see what your Doctor is saying because of the area affected.
Have a look at this http://www.ncbi.nlm.nih.gov/pubmed/18305887 It is definitely saying that the inferior cluneal nerve can be 'conflicted' at the bottom of the ischeal tuberosity and it serves the areas you described as giving you pain especially when sitting.
Everyone will chime in now, 'stop sitting' Have you tried cymbalta at all btw?
Hopefully Dr Dellon will get back to you soon with an appointment for some further treatment.
Take care,
Helen

hi Helen.
Thx for the links and the suggestions. Its true that neurological entrapments can manifest in different ways, which is why it is so hard for us to determine if we fit the picture. The pubmed article mentions cutaneous areas and burning, in areas which correspond to where I feel the pain, but mine is more of instantaneous throbbing, "toothache like" sensation as soon a as I sit, and lasting for awhile after...
I have heard briefly from Dr Dellon saying that my short term relief means "Im a candidate...he will be in touch again shortly so Im trying to get on his schedule asap...
About sitting, I actually never sit unless there is no choice ...and then I jump up constantly... as it is impossible for me, even a recliner hurts...
I have stood sooo much over the past couple yrs that is probably why I now have pain when standing...
Do you all have any meds that work for sit pain? Cymbalta unfortunatley has anti-cholinergic properties which mean in my case it inhibits the muscles in my urethra, makiing it super hard for me to pee...many of the serotonin type meds do have this propterties and effect... so I'm always looking for meds that don't....
I take Nucynta but its doesnt do much...
Anyone have any thoughts on meds that help with aching throbbin butt and perineum pain...
Thanks again Helen for your kind thoughts....hope ur feeling okay
regards,
kath

I don't know whether my 'entrapment' is relevant really, as it is almost certainly caused by mesh. May be due to surgical trauma of some sort, of course - maybe a misplaced suture or a retractor held too long in the wrong place, but the mesh is prime suspect.

My symptoms are pretty straightforward now. Pain over the whole of the pudendal distribution. This was initially only on the left side, I now get this on the right side as well. Initially I had 'foreign body' sensation in the rectum, that has now subsided. BMs are a major pain trigger, so is sitting, and walking especially uphill.