for marianne

[Guest guest]

nne,

Glad to hear you are doing well. Since you seem to be one of the more knowledgeable about pn, I am going to address this question to you- My pain has always come and gone. Last year the pain was much much worse, but still one day I would be just fine and the next it would be bad. This year although the pain is so much better, it still will be like a muffled burning feeling one day and the next fine. Do you know if this is typical of pn? it makes me think I am dealing with something totally different. Also, the burning urination is pretty much daily although its not consistent everytime I go. Im trying to keep notes, I purchased one of the most expensive gel tec cushions and I could swear since I have been sitting more (on the cushion which was $200) I am getting the subtle burning feelings off and on so I am now going to refrain from sitting on my computer chair to see what effect that has on things. Historically, my pain has come and gone, sometimes for as much as 2 months too, I wonder if it could truly pn since I get a break in the pain alot

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[Guest guest]

thanks for the info nne.

As far as the EMG testing, does anyone know of its availability in or near the Pitts area?

CThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there.

[Guest guest]

Carolyn, I really don’t

know what to tell you. I am not a doctor and I did not have any of the symptoms

that you have. Please read my answer to you on the happypelvis group. You need

to get tested so your fears will be resolved once and for all. It is good that

your pain is so much better this year. You could just have a mild case of IC or

vestibulitis. As I mentioned in my other post, I can sit only a little bit, and

that’s all I can do or want to do. I will probably sit as little as

possible the rest of my life as even though my nerve is decompressed it can

come back. And I don’t know why sitting has so much to do with it, but it

does. Does the gel tec cushion have an opening in it to keep pressure off the perineum

area? When I sit I always use that kind of cushion and take mine with me

everywhere, even to my doctor’s appointment. I just tell anyone that asks

that I have had pelvic surgery and I cannot sit.

I don’t think what you are

describing is typical of PN, and if it is a symptom, it is one I would have

loved to have had when I started out as it is so barely minimal in the scope of

PN. Do you drink a lot of water? Can you tell if that makes any difference in

the burning? Or a particular supplement or vitamin. If I take vitamin C, it

really irritates my bladder and I have burning, so I can’t take it. Do

you have any vulvar pain? LS can cause burning. Try and rule things out, and

get the EMG test to rule out PN. If I just had burning urination I would go to

a urologist. Have you done that?

The cause of my PN was sitting

too much. I use to be a web developer for a large corporation, and it would not

be unusual for me to sit for 18 hours a day without moving. I never had to pee

much and was not a big eater. I was driven by my job, and the constant pressure

on the nerve year after year is what did it in. Also I have a “skinny

butt” as Dr. Conway said. He said he sees a lot of my type.

I am sorry I can’t be of

more help, but I wish you would get the EMG test done, so at least you could

rule out PN or PNE. It really is not typical for PN symptoms to get better as

you described yours did, unless this year versus last year you are doing

something different and you are not putting any pressure on the nerve.

I think you mentioned you went

to PT and it made it worse. For me that was the big clue. Internal PT sent me

through the roof with pain. That is one of the symptoms Dr. Conway uses when he

diagnoses PN. He does the EMG test and then the most thorough vaginal and

rectal exam I have ever had. The pain was terrible, and along with the results

from the EMG he told me I had PNE. I had surgery and it was the best thing I

could have done. Even though I still have a tremendous amount of pain, I am use

to it and it is getting better, and I know the nerve is no longer compressed. But

I am still in treatment – I will have at least two more years of weekly

PT and I am now having a series of five Impar blocks, and if that doesn’t

calm the nerves in the pelvis so they heal faster I will try botox. My

resolution is to always keep trying something – I don’t feel that I

will get well if I don’t have an agenda in front of me. I always have to

have a plan in the works.

Please, please get some testing

done and save yourself some sanity from worrying so much about what could be

the matter with you.

nne

[Guest guest]

Send

an email to Dr. Conway. He could tell you and probably recommend a doctor. I

will ask a few other people I know also.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of Carolyn52192@...

Sent: Tuesday, February 12, 2008 10:40 PM

To: VulvarDisorders

Subject: Re: for marianne

thanks for the info nne.

As far as the EMG testing, does anyone know of its availability in

or near the Pitts area?

C

The year's hottest artists on the red carpet at the Grammy Awards.

AOL Music takes

you there.