Walking

[helenlegs 11]

With a piriformis issue I think it depends on what is wrong there. It should be an easy fix with physio and other conservative treatments.It depends on how the muscle is affected (and I suppose for how long)
I have tried tens, heat, ice, acupuncture, botox and stretches of course but the only thing that worked slightly was botox.
It eased the piriformis band of bum pain fantastically, but didn't do a great deal for the nerve pain, so the conclusion is that scar tissue, which the botox can't relax, has hold of my pudendal, sciatic and possibly post femoral cutaneous nerve. I did have a lump (probable heamatoma) on my P muscle after a fall which seems to be a classic way for scar tissue to develop there. A physio that I saw a couple of years ago was treating a guy who'd had PS for about 40 years, she could feel the spasm'd bumps in his muscle, but managed to treat him over a number of months (heat/massage etc) until he was almost fully recovered. Unfortunately I didn't respond similarly. TBH I didn't respond at all! except in pain.
The acupuncture was one of the worst things I have experienced. Just the needle into the muscle. . . it simply would not go in at first and then wouldn't come out again! almost thought I would have to stay with a porcupine'd piriformis! That sort of reaction shows a P muscle problem anyway, just a shame it didn't fix it.
Just the fact that P muscle stretches set your pain off seems to be a pointer in that direction, definitely worth exploring; and as you say one muscle is smaller than the other which can be a classic PS symptom too. That's not to say that you couldn't have PN further down the nerve (sorry).
I guess a Potter scan could give you some answers. A botox shot into the muscle could be a diagnostic tool either, to see if it helps anything, sometimes that can be a cure (so they say)
Anyway I wish you lots of luck, and hope you get some answers.
take care,
Helen

[paulette]

Jackie,
I have had pudendal nerve decompression surgery and piriformis release, and I still develop pain when I walk very far. I am so glad to hear of someone who has the same thing happening. The scary part is that I still develop the pain you describe and have had two surgeries. I wonder if there is entrapment in the Alcock's canal, ie the perineal nerve. Or is it just referred pain from the damaged nerve at the clamp? I don't have any answers, just wanted to say my pain sounds just like yours. I even have to lie on the couch several days to calm things down after too much walk. I have read on this website that Violet had knife-like in the same area. She said it was one of the first pains to disappear. I wonder how long it took??? Of course, she went to Beautrant, and he opens up the Alcock's canal and finds out what is going on in there!

[Violet M]

I have read on this website that Violet had knife-like in the same area. She said it was one of the first pains to disappear. I wonder how long it took???

Paulette, if I remember correctly it was less than 3 months but it's been over 8 years ago so I don't remember the exact time frame.

[JackieOUCH]

Thanks so much Paulette for sharing your experience.

I was so hoping my problems were not pudendal related, obviously because it's so hard to treat.

Still wondering if I should have the Potter MRI in July? Wondering what I will do with the results? I don't want to have surgery....But could it help pinpoint the exact area for nerve blocks? Or is there some other advantage?

Has anyone else received useful information from the Potter MRI, and gone on to find a successful treatment other than surgery?

I'll post this in the testing area as well.

Thanks everybody.

Less pain,
Jackie OUCH

[Robyn K]

Jackie, Just logged on to see if there were any new forum imputs. I too have Pudendal Neuropathy, I get what you mean about the walking, I am two and a half years into it now and more than a year ago, I started experimenting with the friction thing. I wouldn't go anywhere now, without the Vasselline (white petroleum jelly), it has saved my life, well not exactly, but it makes life a lot better. Now it does soil your undies, but washes quite well, ie doesn't affect other articles in the wash. New undies every now and then is a small price to pay. I apply whenever I feel the friction drag. I think you will find it amazing, it is very slippery which is what you want. I tried other creams, but this works better than any other. Please try it and I hope others see this as it is truly a Godsend . Cheers, Robyn Kirkman
1

[JackieOUCH]

Excellent advice Robyn K, thank you.

Actually, the friction aspect is not my problem.....it's the deep, deep, deep pain where my leg meets my body.....right where the elastic on my underwear wraps around the thigh area. I believe it has to do with my obturator inturnus muscle.

The never ending quest for relief continues.

Less pain,

Jackie OUCH

[Karyn]

it's the deep, deep, deep pain where my leg meets my body.....right where the elastic on my underwear wraps around the thigh area.

I have that same, exact pain, too (creases of my legs). More often than not, it will radiate to my anterior thighs in a shocking, stinging line. I have no idea what it is. I know I have adductor tendinosis. Not sure about the obturator. Usually, that effects the inner thighs.
Any lower abdominal pain, Jackie-O?
In my humble opinion, if you can get the MRI at HSS - I'd go for it. It's kinda hard to answer your questions right now, without knowing what the results of your scan would be.
Best of regards,
Karyn

[Alli]

When you have the pain in the creases of your legs what exactly does it feel like?? I have had pudendal like pain for a year now and just recently this symptom of pain near my underwear line has creeped up. It really only hurts when I walk and it feels like a pin is pricking me. Is your pain more of a burn??
This symptom is not here everyday but it's a new and scary symptom because now I am uncomfortable when I walk. I never had that before.

Thanks for your help!!

[JackieOUCH]

Hi Alli,

There are several aspects......The pain where the leg meets the torso is very, very deep in the body....this pain is like a tooth ache. When things are really kicked up, I have a sharp, pulling pain in the labial region (same side of the body, just not as deep ....feels like about a half inch under the skin).....It feels like someone buried an axe and left it hanging.....LOL.....thats' the best way I have to describe it.....The reason I picture an axe is because the pain is in a perfectly straight line...and about 3 inches long....about 1 1/2" up from the leg crease area....

I hope this helps, and that you just have a temporary problem.

Jackie OUCH

[Karyn]

The reason I picture an axe is because the pain is in a perfectly straight line...and about 3 inches long....about 1 1/2" up from the leg crease area....

Yup - mine feels like it goes in a straight line, too.