Re: Big Whoop!!! pudendal neuralgia

[Guest guest]

Hi Molly and Arline and all, You have both hit on why this is so frustrating. I guess almost anyone with vulvar pain has pudendal neuralgia so it doesn't tell us that much - or it could tell us volumes. It all depends on what is causing the nerve irritation. Is it Lyme that is irritating the nerves with neurotoxins? Is it gluten sensitivity that is causing an autoimmune response and attacking nerves? Is it tight pelvic floor muscles that are impinging on the nerves? That is what drives me crazy and why I go in circles. I went to Beyond Basics and saw that they have a great approach to PT and Nazneen will use some techniques like skin rolling that will be new to me. She evaluated me and noted that I have severe muscle problems, especially with the obdurator. But then it is like a chicken and egg mystery. Did the

Lyme/spirochete cause the pain which then caused the pelvic floor to go into spasm or is it the pelvic floor itself that went into spasm and the initial cause went away? If the Lyme is my true problem will treating the pelvic floor w/o treating Lyme help me? WIll treating Lyme w/o treating the pelvic floor help me? Do I need to do both simultaneously? No wonder why getting well is so difficult!!! This has cost me a fortune and it looks like going out of network for PT and the Fibro Center for Lyme treatment will be a fortune in itself. It is sooo frustrating that this is so outside standard medicine. One shouldn't have to go out of network to get PT and one shouldn't have to go out of network to be treated for Lyme properly. OK, enough venting. I guess I have Lyme and pudendal neuralgia and have to treat both at the same time. I just hope that I can withstand the herxing enough

to get my bottom to PT in NYC. That will be a challenge in itself. Sandi __________________________________________________

[Guest guest]

Neuropathy (nerve damage) if bad enough can cause the pelvic

floor muscles to spasm.

I found this out from some of my friends who have some similar

issues.

I'm fortunate that I don't have a lot of problems with the

pudenal nerve. My problem area for nerves are the genitofemoral

and illioinguinal (this is the one that is starting to become

pretty evident as far as trouble) when it comes to nerve damage.

And it was caused by the surgery to my vulvar area. How

extensive the damage is I don't know but I do know that both of

these nerves are peripheral nerves. I'm hoping we can find out

how much damage is being done to these nerves.

As for the issue of Lyme, I will have a discussion with my

rheumatologist about this along with this new twist to my

vulvodynia that is tying in to the nerves I just mentioned.

But one thing I do know is that the cause when it comes to

symptoms is not the same for everyone.

Sandi, I wish you the best in trying to get the answers you need

so you can get some relief.

Kristy

__________________________________________________

[Guest guest]

Neuropathy (nerve damage) if bad enough can cause the pelvic

floor muscles to spasm.

I found this out from some of my friends who have some similar

issues.

I'm fortunate that I don't have a lot of problems with the

pudenal nerve. My problem area for nerves are the genitofemoral

and illioinguinal (this is the one that is starting to become

pretty evident as far as trouble) when it comes to nerve damage.

And it was caused by the surgery to my vulvar area. How

extensive the damage is I don't know but I do know that both of

these nerves are peripheral nerves. I'm hoping we can find out

how much damage is being done to these nerves.

As for the issue of Lyme, I will have a discussion with my

rheumatologist about this along with this new twist to my

vulvodynia that is tying in to the nerves I just mentioned.

But one thing I do know is that the cause when it comes to

symptoms is not the same for everyone.

Sandi, I wish you the best in trying to get the answers you need

so you can get some relief.

Kristy

__________________________________________________

[Guest guest]

It's funny we're discussing this PN thing...my PT discussed PN with me today and said I most likely DO NOT have PN or PNE based on my set of symptoms. Lindsey __________________________________________________

[Guest guest]

Don't rely on everything your PT says - get a doctor's opinion. The

one symptom that my doctor said indicated PN was primary pain on one

side. It can hurt all over, but when pressed on a specific spot it

usually is on one side. Burning/painful urine and BM's was another

symptom.

nne

>

> It's funny we're discussing this PN thing...my PT discussed PN with

me today and said I most likely DO NOT have PN or PNE based on my set

of symptoms.

> Lindsey

>

> __________________________________________________

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