Severed Pudendal Nerve

[A's Mommy]

Allie,

Pain in your buttocks can be referred pain from a damaged nerve or a tense muscle. Sometimes I get electric shocks up my pudendal nerve towards the piriformis and it is so bizarre. My entrapment is on the left so I can feel it "zip" up the nerve.

What exactly does the pain in your buttocks feel like?

Hang in there...

AM

[Violet M]

I have developed NEW symptoms, and I do not know if ANYONE has these:

Pain in my left buttocks.
A vague numbness that goes down the back of my left leg.
HYPER EXTENSION of my LEFT KNEE that started on Tuesday...UNFORTUNATELY I kept walking on it, and I now have EXCRUCIATING pain on the back of my left knee, to the point now where I have LOST the ability to WALK without a limp.

IF I was getting a LITTLE better each day, I MIGHT believe the Dr. who did these pudendal blocks that this situation was TEMPORARY. But, everyday it gets a little worse.

DOES ANYONE have THESE symptoms as well?

Allie,

Yes to the pain in buttocks and down back of leg. That's a typical problem with PN patients because the piriformis muscles goes into spasm.

No to the pain in the back of the knee.

When is your appt. with the neurologist?

[Allie]

Allie,

Pain in your buttocks can be referred pain from a damaged nerve or a tense muscle. Sometimes I get electric shocks up my pudendal nerve towards the piriformis and it is so bizarre. My entrapment is on the left so I can feel it "zip" up the nerve.

What exactly does the pain in your buttocks feel like?

Hang in there...

AM

The pain in my buttocks feels like I pulled a muscle, perhaps from working out too much. HOWEVER, I have done NOTHING as far as exercise goes, since I have been in SO much pain in my vaginal area, I can't even walk. The buttocks pain started first...then I had the "vague" numbness down the back of my leg, and then my knee hyperextended on it's own. When I stand straight, my left leg hyperextends. I had my boyfriend look at the back side of my knees, and I also looked in the mirror at them, and the left side of the back of my knee sticks out, where the my right knee looks normal.

I can no longer walk without a limp, so, I have wrapped my knee with an Ace bandage, and that is helpful.

When I talked to Dr. Westesson, who is the Radiologist who did my Pudendal Block, he said "I have never seen this in a patient. I do NOT believe this is coming from your Pudendal Nerve...I believe this is a NEW problem you have developed." And then I asked him "Does the Pudendal Nerve run through the Buttocks?" And he said "Yes...the Pudendal Nerve does run through the Buttock region." And so I told him I this was NOT a "new" problem..that I NEVER had a problem with ANY of these "areas" (vaginal pain, buttock pain, leg pain) before I had my block." So, he said he was going to email Dr. Antolock in Michigan, who, apparently is very knowledgeable in this area, to see if he has ever had a patient with this problem.

I am SO discouraged. Especially since I can NO LONGER feel urine in my bladder, or even FEEL that I am urinating. Again, the HALLMARK of Interstitial Cystitis is PAIN upon bladder filling, even with just 2 ounces in your bladder. I am now putting out 18 ounces, and NOT even feeling the "urge" to urinate.

Does anyone know if you can develop a Neurogenic Bladder from Pudendal Nerve damage? THAT would be my WORST nightmare. "IC" is BAD enough...a Neurogenic Bladder is SO MUCH WORSE.

Thank you for responding, and if ANYONE has ANYTHING to offer, I would be SO APPRECIATIVE.

~Allie

[Allie]

I have developed NEW symptoms, and I do not know if ANYONE has these:

Pain in my left buttocks.
A vague numbness that goes down the back of my left leg.
HYPER EXTENSION of my LEFT KNEE that started on Tuesday...UNFORTUNATELY I kept walking on it, and I now have EXCRUCIATING pain on the back of my left knee, to the point now where I have LOST the ability to WALK without a limp.

IF I was getting a LITTLE better each day, I MIGHT believe the Dr. who did these pudendal blocks that this situation was TEMPORARY. But, everyday it gets a little worse.

DOES ANYONE have THESE symptoms as well?

Allie,

Yes to the pain in buttocks and down back of leg. That's a typical problem with PN patients because the piriformis muscles goes into spasm.

No to the pain in the back of the knee.

When is your appt. with the neurologist?

Thanks so much for responding Violet...I VERY much appreciate it. I wrote MUCH MORE about my symptoms in the above post.

Are you SURE about the pain in the back of the knee? As I said...the knee is hyperextending on it's OWN.

To answer your question, my appt with the Neurologist is on November 3rd. I CANNOT get in sooner. I am NOT even sure that the Neuro I am seeing specializes or even KNOWS anything about Pudendal Nerve Damage, since, from what I have read, MOST Dr's don't.

VERY discouraging. I was SO HOPING that if the Dr. who did my Block "nicked" the nerve, that this would get better. Again, I NEVER HAD ANY Pudendal Nerve pain or problems prior to the Block. The Blocks were ordered by my Urologist for my Bladder Disease, in the hopes that they would help to relax the pelvic floor, and relax the muscles that help the bladder to release urine. INSTEAD, I have all this urinary hesitancy, I cannot feel myself urinate, and cannot even TELL if there is urine in my bladder.

Again, if ANYONE has more information to offer, I would be EVER SO GRATEFUL.

Thank you ALL again...

~Allie

[Allie]

OKAY, now I am REALLY SCARED:

TODAY, for the FIRST TIME, I had pain on my RIGHT side.

Started out with pain on my inner thigh. As the day progressed, SUDDENLY, the RIGHT side of my vagina is NUMB, and, I HAVE PAIN GOING DOWN THE BACK OF MY RIGHT THIGH (hamstring) just like on the left side, and, my RIGHT KNEE IS HYPEREXTENDING!

I am at a COMPLETE LOSS. I cannot get in early to see the Neuro. I see my Uro on Thursday, but I doubt he will have any answers.

Has THIS happened to ANYONE?

PLEASE...I am losing ALL HOPE.

Thank you, and God Bless...

~Allie

[Violet M]

Allie, do you have incontinence?

The pudendal nerve controls the bladder sphincter. It seems like if PN can cause you to feel like you need to urinate all of the time the opposite could also be true -- to lose the feeling of needing to urinate. Some people have pain with PN, some have loss of sensation.

Have you had an MRI of the lower back yet to check the sacral nerve roots? What about the cauda equina area? Sometimes nerve crosstalk can cause pain on the other side but yours seems pretty extreme. If you haven't already, it could be important that you have the MRI.

[Allie]

Allie, do you have incontinence?

The pudendal nerve controls the bladder sphincter. It seems like if PN can cause you to feel like you need to urinate all of the time the opposite could also be true -- to lose the feeling of needing to urinate. Some people have pain with PN, some have loss of sensation.

Have you had an MRI of the lower back yet to check the sacral nerve roots? What about the cauda equina area? Sometimes nerve crosstalk can cause pain on the other side but yours seems pretty extreme. If you haven't already, it could be important that you have the MRI.

Thanks for responding Violet...I appreciate it.

I did have an MRI done, and am waiting for a call back on the results. Going to have an EMG done too, but from what I understand, finding out if the pudendal nerve is damaged is not easy.

Went to the ER on Wednesday. No one could find any "neurologistal" problem. But, I went to the same ER where the Dr. who did the blocks works...wondering IF they found anything wrong if they would tell me.

Saw the Urologist who recommended these blocks to begin with. Suddenly, he knows NOTHING about the nerve.

Again, I NEVER had ANY pudendal nerve pain PRIOR to the blocks. The pain, on BOTH sides of my buttocks is SO EXCRUCIATING, I get no relief from standing or laying down. No one gave me any medication either.

I am just at a loss. I think, when the Dr. did the block, that he hit the nerve. I am starting to think this is going to be permanent. NOT at ALL sure why it is NOW on both sides. Again...goes DOWN to my knees. I am losing sensation in my feet. Did he hit ANOTHER nerve?

I am at a COMPLETE loss and VERY TERRIFED...absolutely terrified...

[Karyn]

Hi Allie,
Where and when are you having the EMG done? Are you seeing one of the docs from the PN list?
I know this is all very scary and I'm so sorry for what you're going through. You're very first step should be getting hooked up with a knowledgeable PN doctor, either to confirm or rule out PN.
Warm regards,
Karyn

[Violet M]

Allie, I have not heard of this happening to anyone -- I wonder if you are just super-sensitive to the steroids in the blocks. I'm not sure what to suggest although I think it's important to get the pain under control before your brain gets into a cycle of pain and other areas of your body start to become involved. Have you seen Dr. Howard, the doc who works with Dr. Westesson about any of this? Can he recommend a pain doc who will prescribe some medication to control the pain until the nerve calms down?

[Allie]

Well, NOW things are just getting CRAZY......

Since I last wrote, the numbness has spread to both my hands, the back of my neck, up the back of my head and to my forehead and lips.

Monday, I developed trouble breathing and had excruciating chest pains.

I went to the ER and was advised that Peripheral Neuropathy (which is what pudendal neuralga is) CAN affect your Autonomic nervous system...which is what controls your heart rate, breathing, etc. While my breathing at the ER was fine, and so was my heart rate, they did admit me.

I saw 2 Neuro's, who just did the REGULAR "knee jerk" type tests that ALL the other Dr's have done. THIS IS FRUSTRATING, as my problem is NOT external...it is INTERNAL. WHY can't I get a Dr. to understand that? They have me follow their finger with their eyes, etc. THAT is not my problem. My problem is I can't feel my feet, or my hands, or the back of my neck, or the top of my forehead.

Has THIS ever happened to anyone?

I am TERRIFIED I will die, or end up paralized.

I had NO idea that nerve damage to a Pelvic nerve like the Pudendal nerve could indeed travel up the spinal cord, but, if you look at http://en.wikipedia.org/wiki/Peripheral_neuropathy you can see that it CLEARLY can.

Can SOMEONE please advise me on what to do? I KNOW no one here can give MEDICAL advice, but at this point, I am at a COMPLETE loss, and so is my entire FAMILY!

PLEASE HELP ME!

THANK YOU SO MUCH!

Bless you all...

Allie