Health Organization for Pudendal Education

Hi Kate,

Thanks for your reply. To be honest i don't know what the answer is. The back surgeon is hesitant to perform surgery without intense investigation. I had injections into my spine last Tuesday in the L5/S1 area i think which is the worst area having slipped out of line. But to be honest it hasn't really done anything for my Penis pain or Bowel issues. In fact it has seemed to make them worse? My Penis is hurting again almost like in spasm or tension, which causes it to hurt and ache. I sometimes lose feeling down there, more so when sitting. It sounds strange but it is also like the reaction to extremely cold temperature when it just tries to retract!! I know you probably cant understand this!! I have never suffered like this before unless it is really cold? I think it is something to do with the circulation in relation to muscles and my nerve?

I have had horrible pain and funny sensations for three days in the bum area and Penis. This is also causing problems with my Bowel movement. Like i said i am convince i have an issue with my Pudendal nerve, but i am not sure of the cause. I was convinced that their was a link to my spine injury and it seems to link together with reaction to movements. However, i hear different stories, originally everybody claimed it is not possible that my spinal injury is linked to my Penis pain. however, the more i read and investigate i find others with the same injuries and symptoms. In fact some of the best Pudendal specialist have linked Pudendal pain with L5/S1 injuries?

I am not sure if it is due to Pelvic tension, particularly in my bum area, such as the Piriformis Muscle. I have a lot of pain in the bum area and aching and have been told by a massage therapist that my bum muscles are in spasm. Maybe this is pushing or trapping my Pudendal Nerve?

Like i said i am at a loss at the minute. I am sure i have problems with my Pedundal nerve, but don't know what is causing it.??

I understand your frustration. I am now constantly avoiding most things i used to enjoy in fear of pain. It is also having very bad psychological affects due to the area of pain and relationships.

I hope things get better for both of us Kate.

Hi all,
Can I approach your problems from a slightly different angle. . . . with regard to spinal problems, of course you would have back pain with any disc herniation stenosis etc. BUT actual nerve entrapment(s) showing on MRI, would have to be part of the pathology for nerve pain, numbness etc.
It seems like all of you here have had some accident/trauma to induce these symptoms you are experiencing?? and the pelvic area and the spine may have been damaged in the first place, or subsequently. BUT!. . . . . I am very skeptical about the spine being responsible for my bum/pelvic/saddle/+++ problems now.

I also know that muscles will often go into spasm (I suffered this in a major way after a fall) almost to protect your body from movement and further damage after an accident. I was 'locked' in bed face down for 3 days and I'm sure it was my body saying just keep still! Unfortunately then muscles can be prone to spasms from then. I would also add especially the pirimormis muscle but that may just be in my case.

I used to have a back problem and did have a microdiscectomy L5/S1, 9 years ago now. I'd had a issue with my back for 3 years before that. The first MRI I had in 2000 showed a herniation L5/S1 but I decided on conservative treatment to try and fix the problem, it worked to some extent, although I did have pain but could manage it. However, it then just got worse and worse (house renovation) until an MRI, 3 years later, showed a large prolapse impinging my sciatic nerve.
I had the op and bingo what a relief. These days they offer diagnostic/treatment nerve blocks at this level of course.

Since a fall nearly 5 years ago I have experienced quite a different type of pain, well different in many ways, similar in some. A lumbar MRI showed no nerve impingement although slight disc degeneration (which I think is more of an age thing) This is when I was 'locked' in bed with muscle spasms. Once able to mobilize, I found that sitting was a problem and I had constant saddle area numbness + pain which I hadn't experienced before when I had a bad back.
Every specialist I saw wanted to put these problems down to my previous lower spine problems (which hadn't been any problem for at least 5 years, worked full time + no medication, excellent social life) I kept telling them it was my bum but was told that this was referred pain.
I doubt that referred pain can be so painful to touch!! I also had a hard lump for about 3 months after my fall at the point that was so sore. I have subsequently found out that this is where my piriformis muscle is (didn't know I had one before that )
I (and some speciatists) now think that my nerve problems are from this piriformis area. I have sciatica, pudendal pain and post femoral cutaneous nerve (PFCN) pain too. ALL of these nerves run in/under/near the P muscle.
This muscle is always tight any p stretch hurts me. Pressing on the spot where the lump (haematoma) was, initiates sciatic nerve pain. That wouldn't happen if it was a spinal entrapment issue. I can press certain areas to bring pudendal pain on and PFCN pain too. Any amount of pressing above my piriformis muscle would never initiate any nerve pain. (maybe it never would ?? not sure, didn't try it when I had back issues.)
I may be wrong but I would say that all of my nerve issues now stem from my P muscle. Dr Greenslade and Dr Filler both agree.
Interestingly ALL of my numb areas are below where the P muscle is situated, none above that line.
I would say that other features (no benefits for any salespeople out there ) to differentiate back nerve impingement from Piriformis nerve impingement is that a straight leg raise is possible, maybe not 100% comfortable at 1/2 way up but possible, even if you need help guiding the leg up (my leg is 'too heavy' to lift myself) With a lumbar impingement the pain for this action is EXCRUCIATING!!
Similarly touching toes, impossible with a back problem and getting back up from where you can painfully stoop to, requires an edging bit by bit with hands, slowly up thighs.
Mornings were the absolute worst with my back pain, I had crawl out of bed on my hands and knees to make it to the shower whilst the pain killers kicked in.
I'm quite (stupidly sometimes) a tough person and I actually went to work (shakes head at the memory, idiot!) Just so you know that I'm not a whinger/hypochondriac at all .

Of course now mornings are the best for me, apart from the fact that I feel as if my pelvis is welded to the bed then, not anything like the pain tho' . I crawl into bed at night now, unless I pace my day.
I find climbing stairs horrible, my legs and pelvis are heavy. but I can touch my toes and only feel a stretching type of pain when doing it.
I have absolutely NO bounce??
I do have a very tight Si joint (no spring on worst side) and every physio I see puts that right, although I feel no better?? only to go to another physio who says 'oh one of your legs is longer than the other and your pelvis is up and tipped on one side', They 'fix' it but. . . . . . .6 times I've been 'fixed'
This SI problem is consistent with me falling onto my bum (more on the worst side) which is where the P muscle problem is too. Delayed pain is another BIG difference from back pain. Back pain was instant, a sneeze, WOW! but although my pelvic problems 'allow' me to do things, doing them just brings misery later.
Given that my lumbar MRI shows only age degeneration and no nerve impingement, nothing too much different from an MRI years earlier, when my disc was out, I can only blame my pelvis for all of these problems I now have, and mostly possibly exclusively, my piriformis.
I would like to add that the medical community do tend to put more emphasis on spinal problems, these are better understood due to imaging etc. However, before imaging was available the pelvis was thought to be the main culprit for lower torso nerve pain.
Once spinal impingement's could be seen, the pelvis was forgotten but I think that (slowly) it is being given more recognition in neuro pain.
Maybe because my back problem was fairly acute (my surgeon said it was the largest prolapse he has taken out and there wasn't much disc left) I have a different perspective on the pain. Pain is so subjective anyway. This isn't a throw away statement, but I would have ended it if I'd had to stay with that back pain. Fortunately there are people who specialize in that area and there is an abundance of help for spinal problems which I took full advantage of
Unfortunately the pelvis has SO few pelvic/nerve experts it isn't even on the periphery of medical knowledge in even specialist nerve pain (neurosurgeons) specialists. This is shocking in my opinion. It allows sufferers to be made out to be malingerers or or attention seeking nutters. I am neither.
Hopefully this is being repaired. Unlike us.
Btw In the Nantes criteria it is reported that cauda equina does give saddle numbness (and continence issues) but no pn type pain if i understand it correctly that is.
I don't know if this account does help at all, but I would put money on my problems being exclusively pelvic. Sorry to go on and on and think this is officially my longest post.
Take care all,
Helen

Hi Helen,
Thank you for your post.
I agree with you to some extent. I too feel that my penile pain may be due to my Piriformis muscle trapping my Pudendal nerve. However, i have so many pains i am not sure which is responsible for what. I think my leg pain in my right leg into my ankle is due to my back problem. And obviously my back pain is due to my spodylolysis in my lumbar spine.
However, i am not sure why i am getting pain in my stomach and oblique area. Could this be due to Pudendal nerve / Piriformis Muscle, or tight psoas muscle or is it due to my bad lumbar spine issues? I have heard that lower back injuries and pain can cause stomach pain?
Obviously i am sure that i have some type of Pudendal problem because i cannot think of anything else that would cause pain in my penis shaft. I also experience discomfort and pain in my urithra some times and in my right testicle.
This is my biggest problem, trying to work out what pain is caused by what promblem??
I know that i suffer with bad muscle spasm in my bum area, stomach area, whole back and legs.

So Helen what is your outcome. Have they confirmed that your Piriformis is the culprit. If so will you need surgery to release the nerve. If not what is the answer?

Thank You
Gary

I have been diagnosed with 'a complex variant of the piriformis syndrome involving the sciatic and pudendal nerves', but the post femoral cutaneous nerve is speculated now as also being involved too.
I only have this on one side (rh) and probably have a more 'normal' piriformis syndrome on the other side with a less problematic sciatic involvement on this side. This happened a few months after my fall and although I also have numbness on that side the pain is much less. I haven't had botox on that side, unfortunately, but I do think that a shot of that, may even sort that side out.
I would like to try ESWT at Cornwall, but it's impossible cash wise, and because I've had just about every conservative treatment except the shock wave stuff I think an op is my only other thing left to try. I will choose very carefully if I ever do get to that stage.
I didn't have any stomach/abdomen problems with my S1/L5 BUT the knock on (wind up) pain effect from one pain problem escalating to another can happen. I would add especially in the complicated pelvic area.
I'm sorry i don't know enough about the anatomy to help you with what you describe. Maybe you could check this thread out? http://www.pudendalhope.org/forum/viewt ... 8264292312
Trying to work out what causes each pain is SO difficult, if not impossible. I wish you luck. I think that even in the Nantes criteria it is almost admitted that the surgical procedure is when an only actual true diagnosis of PN can be made when visualized."
From the Nantes Criteria. . .. . . . In fact,
only the operative finding of nerve entrapment and postoperative
pain relief6 can formally confirm the diagnosis of
pudendal neuralgia due to nerve entrapment (except for a
possible placebo effect of surgery)".
Take care and good luck.
Helen

Thank you Helen,

I will keep pushing for answers.

I hope things work out and improve for you too.

Take care
Gary

Yes it can!
If it is a central disc prolapse it can affect the fibres of the caudal equina that form the pudendal nerve. In me this lead to dribling ejaculate rather than a jet, loss of sensation in the penis and non event orgasms. You are particularly susceptible if you have either congenital spinal stenosis, acquired spinal stenosis (calcific build up) or a large disc prolapse causing stenosis.

Hi Ostheopath, can you tell us a bit more about your case ?

How can you be sure that it's coming from the disc prolapse ? From an MRI ? How big is the prolapse ?