Severed Pudendal Nerve

[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.

Violet...I am not aware of Dr. Howard...do you know how to reach him? Perhaps he is in the directory on this site? I will look...

I did have an MRI...it was normal. I do believe it included the sacral routes, but I will double check. I think my nerve was hit and now permenently damaged, per my above post...

Thanks for your post.

Allie

[Violet M]

Allie, here is the contact info for Dr. Howard -- he is the gyn who works with Dr. Westesson and he is knowledgeable about pudendal neuropathy but yours isn't exactly the typical case of PN so I don't know if he will be able to help you.

Dr. Fred Howard, Jr., M.D., M.S.
Professor of Obstetrics & Gynecology.
Telephone: (585) 275-4004
585-241-3210
http://www.urmc.rochester.edu/obgyn

I have heard of other people with PN developing numbness or pain due to chronic regional pain syndrome in other areas of their body but never quite to the extent that you are experiencing. And I’ve never heard of anyone developing polyneuropathy or autonomic neuropathy from a nerve block. I'm sorry Allie, this sounds very scary and I wish I had some answers for you. Maybe you can contact all of the PN doctors on the list and see if any of them have heard of this.

[Karyn]

OMG, Allie! (HUGS)! (HUGS)! (HUGS!)!!!!
I'm sorry, but hugs and support are all I have to offer you. I've never heard of this happening before. I sincerely wish I had insight to share with you, but I don't. I don't blame you for being terrified. I think Violets advice is excellent. Please try to contact someone who is knowledgeable about PN and let us know how you make out.
Warm regards,
Karyn

[A's Mommy]

Allie

I can hear the desperation in your voice (even though you are "online", so to speak.)

Please get to someone who knows about PN as soon as possible.

I am praying for you.


A's Mommy ((((HUGS))))

[Allie]

Thank you all....

I JUST don't know where to go.

I DON'T think Dr. Howard will help me...he is affiliated with the same Hospital as Dr. Westesson.

I have CONSTANT high heart-rate...even at rest. I KNOW this has affected my "autonomic" nervous system, and I CANNOT believe it. HOW could this happen? I do NOT understand. I was IN the hospital, and they let me go. Just "regular" neurologists looked at me, but the problem is on the INSIDE, and this is SO RARE, I do NOT know where to go for help.

WITHOUT sounding MELLOW DRAMATIC, I am afraid that I am just going to pass away. I have NEVER felt this way in my life. I am TIRED all the time. I am USED to not getting any sleep, since I have had my "IC" for a year now. But now, when I void, I cannot tell if I have emptied or not...such an unusual feeling.

I NEVER thought I could get sicker than I am, but I am. I am numb in my hands and forehead and on the back of my neck. Again, my heart RACES, even at rest.

I am seeing ANOTHER Neuro on Monday. I HOPE he knows SOMETHING about Perpherial nerve damage. If he just "taps" my knees and arms and looks in my eyes, just like FIVE other Dr's have, I will just be beside myself.

Did I tell you all I had a fasting blood sugar of FORTY SEVEN on Saturday? NEVER had that in my life! My Dr ordered it, to see what was going on, and I got a call from them...that's another symptom of this affecting your autonomic system...the inability to feel hypoglycemia.

Hope you all can learn by my experience, if nothing else.

Please keep on praying and hoping for me, and, thanks for all your help.

~Allie

[A's Mommy]

Allie,

I can hear the desperation in your voice. I know at my most confusing moments, an anxiety medication such as Ativan has helped me get over the "hump." I am not a doctor by any means, but you may want to check with your doctors if this might be an option for you. It honestly may take the edge off, and remember, it's not necessarily a life commitment. As far as the bladder sx you describe such as not feeling if you're bladder is empty, this can be common with PNE.

Continue to hang in there.

Hugs,
As Mommy

[calluna]

Allie, I wish I could just give you a hug. I would if I could reach you! I can hear how desperate you are.

Please remember that most of the pain and the bladder symptoms you describe are common for people with PN. And if the nerve has been nicked, or irritated, then that can cause PN symptoms. And, if the nerve has been nicked, or is irritated, it can heal. There are many of us (me included) who have pain in the buttocks and down the legs. It is also quite common for the pain to be the same on both sides, even though we know that the damage was done on the one side only. There are many of us in this situation.

I understand that you have not had these symptoms before, and yes it can indeed be very scary when new symptoms start. But please don't give up.

Neurologist test your reflexes because that gives them information on the integrity of both the central and peripheral nervous system. Doing 'knee jerk' tests does not mean that they aren't taking your problems seriously, not at all.

But please do try to get to see someone who knows about PN - your best bet may be a gynaecologist or similar. I don't know Dr Howard - I am in the UK - but Violet says that he knows about PN and I would take her word for that.


I am wondering what pain medications you are on? Because being in intense pain for a prolonged period of time is bound to be very difficult for you to cope with. It is very important that you get some help with the pain. In the meantime have you tried ice packs? They are a very simple remedy but a vital help for most of us on here. You can use a packet of frozen peas, wrap it in a cloth and place it on an area of pain - 10 minutes in each hour.

Hang in there!

[pianogal]

allie,
my heart is breaking with you and freaking out with you right now. I am going to pray for you like mad.

fyi, when my pain first started, I did get strange shooting pains (like electric rain drops) and they went in some of the places you describe, in addition to typical pudendal sites. Here's where I felt them. backs of knees, heels, all through my legs, inside my elbows, behind my eyeballs...

I am wondering... for the urinary retention thing, this is a really really stupid suggestion, but maybe do an AZO test strip to make sure there's no UTI? Cause that would make urine be held and hard to push out even moreso... though it sounds like nerve problems really. forgive my not knowing more.

Try getting onto some neurontin, go to a pain management doc asap, all docs asap... oy vey! this is not fair you have to deal with this. I will be praying for you!!!!

I will ask my hubby who is a PT if he has heard anything more about this kind of thing.
ok...he says:
it could be:
-a systemic reaction to your injection ( but that should have passed by now)
-muscle spasm due to pain, causing piriformis tension thus creating psiatic pains down legs.
-as far as numbness in hands etc... it is impossible for the damage to the pudendal nerve to damage the spinal cord upwards.
-it's possible for an autononic nervous system disfunction caused by the pain and damage
-also possible that because of the obvious psychological effects of your suffering, that there would be anxiety which could elevate the heart rate, causing neck tension and various sensations in the hands, head, etc. he is not calling you crazy, just trying to understand this. sometimes the stress of pain causes pain to cascade and build
-but you need a specialist helping you asap.

My guess for a strange possibility? chronic lyme disease? lyme often presents without the traditional bullseye rash.

http://en.wikipedia.org/wiki/Lyme_disease (basic lyme info on wikipedia)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1886652/ (lyme disease causes Interstitial Cystitis in infected mice)

you might not have had any signs that you were bit, but Lyme disease can cause peripheral neuropathy:
http://peripheralneuropathycenter.uchic ... ease.shtml
(the above link is from a peripheral neuropathy center in chicago, has lots of other helpful info there)
best testing for lyme is with Igenex (highest rate of correct testing) http://igenex.com/Website/
My doctor who phone consulted and got me tested for lyme: http://www.harmonywomenshealth.com

If it's lyme, then there's treatment... long term antibiotics...

I know you don't have the emotions to handle this guessing around. I will pray for a quick answer.

it does sound like everything got worse with your injections, so it makes sense that they aggravated or started something. praying for you... hugs!

[Allie]

Allie, I wish I could just give you a hug. I would if I could reach you! I can hear how desperate you are.

Please remember that most of the pain and the bladder symptoms you describe are common for people with PN. And if the nerve has been nicked, or irritated, then that can cause PN symptoms. And, if the nerve has been nicked, or is irritated, it can heal. There are many of us (me included) who have pain in the buttocks and down the legs. It is also quite common for the pain to be the same on both sides, even though we know that the damage was done on the one side only. There are many of us in this situation.

I understand that you have not had these symptoms before, and yes it can indeed be very scary when new symptoms start. But please don't give up.

Neurologist test your reflexes because that gives them information on the integrity of both the central and peripheral nervous system. Doing 'knee jerk' tests does not mean that they aren't taking your problems seriously, not at all.

But please do try to get to see someone who knows about PN - your best bet may be a gynaecologist or similar. I don't know Dr Howard - I am in the UK - but Violet says that he knows about PN and I would take her word for that.


I am wondering what pain medications you are on? Because being in intense pain for a prolonged period of time is bound to be very difficult for you to cope with. It is very important that you get some help with the pain. In the meantime have you tried ice packs? They are a very simple remedy but a vital help for most of us on here. You can use a packet of frozen peas, wrap it in a cloth and place it on an area of pain - 10 minutes in each hour.

Hang in there!

I just started Methadone for the pain. But I am VERY concerned as to WHY this is "moving" into my "upper" extremities, when MOST people on here with PN have it ONLY in their LOWER......I AM SCARED!!!!

[Violet M]

Allie, I was reading back through your posts and I was wondering more about your history before the pudendal nerve blocks. You said you had interstitial cystitis (IC). Did you have it for very long before the nerve blocks and do you remember how the docs came to that diagnosis?

The reason I'm wondering is because some people are diagnosed with IC who actually have pudendal neuropathy -- in other words, IC and PN can have similar symptoms and it's possible for the wrong diagnosis to be made. Also, some of the PN docs think that IC can be caused by pudendal neuropathy and feel that some people are wrongly diagnosed with IC who actually have PN. I'm not saying that's the case with you -- just brainstorming and trying to think of all possible scenarios. So have you had any other procedures such as epidurals, etc. recently that could have possibly contributed to this problem you are having?