Health Organization for Pudendal Education

Hello,

I haven't been on this site for a while as I have been attempting to get on with things. However, three years out and after a ridiculous amount of investigation I am still none the wiser as to what is causing my pain, so I thought I would ask here again as some people may have ideas. Just to recap, my pain started in my right bottock and then slowly spread to my left bottock and both sides of the perineum and then into my the lateral aspects of my feet i.e. outside toes/side of foot, which now either burn, have pins and needles or go numb on the edges when I sit down. The bilateral nerve pain tends to be worse if I sit or stand in a stationary position. The pain in my bottock/perineum/testicles is probably a lot milder than what many of the people on this site have experienced i.e. I can tolerate sitting at work all day as it remains at 4/5/6 level. Also, oddly, I don't seem to get any pain in bottock or perineum if I go for a run, walk or swim breastroke, which would lead me to conclude that perhaps it isn't pudendal entrapment. Indeed, that is what is so puzzling because on one one level I have the symptons of pudendal entrapment i.e. the tingling/crawling sensation in my perineum testicles but on another level I don't i.e. the classic things that I have read that aggravate pudendal neuralgia don't worsen or aggravate the pain i.e. running up stairs, squatting, doing Yoga, pressing along the pudendal nerve by physios/doctors. I can even do a hard piriformis stretch and it doesn't reproduce any pain. The only thing that can reproduce the testicle/perineum pain is if I break wind - and even then it isn't all the time. I also have non-nerve related coccyx pain that tends to come and go. Unlike people with disc related injuries, my pain symptons always go away at night and tend to kick in within about an hour of getting up.

Since the beginning of this year, I have also started getting nerve pain in both my hands along the ulnar nerve i.e. little finger. I have been swimming a lot (because ironically this temporarily relieves my perinuem/bottock and feet symptons) so perhaps I have irritated my ulnar nerves at my elbows, as my neurologist argues. But it all seems like a remarkable coincidence to me.

I have been tested for everything you can think of:

1. Including multiple nerve conduction studies for lower and upper body which pretty much came back normal
2. MRI's, including 3T with Dr Hollis Potter and in London on the 3T Tesla at the UCLH - all normal
3. 3 Lumbar Punctures - which came back showing just mild increase in protein in the spinal fluid
4. Multiple injections at Ischial Spine/Alcock Canal/Piriformis and Caudal EpiduraL. No relief in symptons.
5. Was also tested for a genetic disease called Heridatory Neuropathy with Liability to Pressure Palsies (HNPP) - came back negative/normal.
6. Thyroid, Magnesium and Vitamin B all normal.

There is one doctor who I have seen who believes my problem lies at the S2 nerve route and sometimes one of the ligaments can get caught on it or something - sorry if the explanation is a bit wishy washy but he was telling me in another language. So my question to some of the pudendal/S2 experts on this site is /are there any clear and obvious differentations in pain distribution between pudendal entrapment and S2 nerve entrapment.

And also does anybody know of/heard of Impar Ganglion syndrome which irritates the S1/S2/S3 roots? I have read about this in Dr Filler's site but almost nowhere else - what he wrote seems to correspond exactly with my symptons but when I asked my neurologist about it he didn't know anything about it - and he is a quite senior, highly respected British neurologist. Does anybody know anything about this syndrome/problem and what can be done about it?

You can google S2 dermatome images to find out what areas would be affected by an S2 nerve entrapment. The pudendal fibers come off of S 2,3,4 so if S2 is affected it could cause some pudendal neuralgia-type symptoms.

Here are links to some images of S2 dermatome distribution area:

http://instruct.uwo.ca/anatomy/530/530notes.htm (scroll down to fig. 52)
http://www.medicalcriteria.com/site/ind ... 80&lang=en
http://sci.rutgers.edu/index.php?page=v ... evels.html (THIS ONE IS GOOD BECAUSE IT SHOWS THE SENSORY POINTS)

I've not heard of impar ganglion syndrome although patients who have tried ganglion impar blocks have come on the forum from time to time and some have had good results. Here is a good article on ganglion impar blocks that you might find interesting:

http://www.painphysicianjournal.com/200 ... 61-666.pdf

Since you are having neuropathy in your hands too, you might want to rule out polyneuropathy. Here are some articles on that topic:

http://www.nlm.nih.gov/medlineplus/ency ... 000750.htm

http://www.nlm.nih.gov/medlineplus/ency ... 000777.htm

I had pathology (now surgically corrected) at S2 which was visible on MRI - so while the pathology cannot be the same if your MRI was negative, The distribution of neuropathy was the same - lower extremities and pudendal. S2 also enervates the piriformis, so if you were stretching it because you have been told it is tight / spastic, do not expect it to release with other treatment if you do in fact have S2 pathology of some sort. I also had neuropathy of the hands as well as vertigo, but for me it made sense because I had cysts on the S2 nerve roots that were full of cerebrospinal fluid, and so there were some alterations in CSF pressure. I did have the same signs of being unentrapped: Able to do all kinds of bendy excercises and postures without pain. So your symptoms do sound potentially like S2 nerve root - but I am sorry, I have no bright ideas about why you would have those symptoms with a normal MRI and normal nerve conduction studies.
There are a series of strange autoimmune disorders such as sjogren's syndrome that I don't know much about, but sound from what little I do know like the symptoms have some overlap with neuropathy...so if you haven't seen a rheumatologist you might want to do that. I don't know how you can have neuropathy and have normal results on multiple neuroconductive studies.

Maybe the slower development of pain and symptoms associated with PN is related to your perception that the 'classic' aggravating factors have no effect on your own symptoms? it often takes some time for symptoms to show that we sometimes can't pin point exactly what has caused them. Just a thought. Your explanation of how your pain develops i.e. don't trouble during the night with slow onset is a classic PN symptom of course.

I wondered if the 'pressing' along the nerve has been internal? Because breaking wind can sometimes reproduce symptoms, if the examinations have always been external maybe an internal examination would be better. Can you get a sense of where the nerve pain is reproduced at all? That info may help with an examination.
The sciatic problems do sound like piriformis if nothing shows with your spine, although the S2 nerve serves that muscle so any S2 problem could cause a piriformis problem. However, pain would normally be produced with a piriformis stretch ??? Have you had a good deep evaluation of that muscle at all?

Are your bilateral symptoms of a similar degree? if so, that may point to a sacral problem which could be this ganglion impar symdrome, but I haven't read anything about it.
It's not beyond the bounds of possibility that the S2 problem descried by one doctor involving the ligament and nerve root could happen but to happen on both sides (and simultaneously?) would be very unfortunate, so I'm not so sure about that. As HM said I think something would have to be visible on imaging for a bilateral S2 root pathology.
Take care,

Helen