Re: new member Debbie - PN

[Guest guest]

Hi Debbie, Welcome to the group! Sorry you have PN, too! I was diagnosed last yr., though I know I've had it for several years now. I flew to NH and had EMG testing and I also had two rounds of the PN blocks. I was really bad last yr. I didn't drive for over 9 months, but the last 3 months or so I've been doing better. I'm able to finally sit and actually tolerate it for awhile. So, hang in there and don't give up! What are you using for the vulvar pain and were you diagnosed with anything specific? I have generalized vulvodynia that I believe is a result of the PN and then I also have localized vestibulitis that was caused by using the birth control pill. I have come a long way with the vulvar pain. I am now wearing jeans and my sex life has been

better the last four yrs. than it has my entire marriage (15 yrs. now). I use topical estrogen cream on the vulvar area and that has helped more than anything. Sounds like you must have a good updated PT if you are being treated for PN. There aren't many qualified PT's to treat pelvic pain, but thankfully word is spreading and things are getting better. Don't worry about how much you write! If you go back and look at my posts...you'll see I write a lot pretty often! ;-) If you need any specific help, just let us know...we'll do our best to help. Just know, though, that you are NOT alone! Hugs, ChelleHi, ChelleI just joined this group

yesterday. I am a bit older then you are. I am 53 and a grandmother. I am so thankful for this group. I also suffer from pudendal neuralgia which I am seing a specialist for and doing PT. My husband and I did not have intercourse since February. We were finally able to twice last month. I used Astroglide. It sure does not feel the same as it used to. I told him to go slow and I wonder if it will ever feel as good as it used too. I ordered some Slippery Stuff but I don't know what color label it has. I have suffered from vulvodynia for four years. It finally got to the point where I could not sit down comfortably. I told my doctor to either admit me to a hospital in Birmingham Alabama or to refer me somewhere else. It was getting to the point where I wondered if the pain was worth it. So I was referred to a Pain Management and Reconstruction Center in Chattanooga, TN. Anyway in

October I was diagnosed with PN. I take Gabepentin and Naproxsyn for nerve pain. Both don't do much to help. I am in physical therapy once a week until the third week in March and then I will be reevaluated. If he recommends surgery I will go for a second opinion in Birmingham, AL. I have had two nerve blocks and only got 5 hrs of relief each for over $200 a treatment. My dr had me blowdrying my genitals which I stopped because I felt like it was drying me out too much. They suggested olive oil. I used it but it didn't seem to do too much good so I have about quit it. I shower with Aveeno then just pat myself dry. It doesn't matter if I wear jeans or sweats I still feel constant burning and stinging and pressure at times. I have heard some good things about emu oil so I ordered some of it. I have noticed that the area of my perineum is thinning out too. I have a special pillow to

use for sitting which I do very little of. Its just one day at a time I keep telling myself. I used to work a full time job, attend a university, and dontate time to big brothers and big sisters. I lost my job in July 2007 due to my medical absences. I wonder if I will ever work again. I have always worked in the admin or customer service field which requires a lot of sitting. Also, I do not want my marriage to fail. I know I have said a lot but I am new and I want to contribute as well as benefit from my membership. Thanks for hearing me out.

[Guest guest]

HI Chelle,

I also have generalized vulvodynia. I was given some hormone creme

in the beginning to use for 6 weeks but that is all. They did not

have me use any other type of creme after that. My dr suggested olive

oil. I have used it and stopped using it. It doesn't make any

difference. I am waiting on my emu oil. I hope that can make a

difference. Our sex life was magnificent from 2000 to 2004. Then

all the problems started. This past year we made love in February

and then not again until twice last month. I have been so afraid

that it would hurt, but it didn't. I made my husband go very slow

which is unusual for us. I guess we will try again soon. I miss it

a lot. As I had stated, it doesn't matter if I wear jeans or sweats,

the pain is still there. Thanks for your uplifting message. My PT

is great. It took me two months to get my first appt. I just go day

my day. I just pray it will get better.

Debbie S.

> Hi, Chelle

>

> I just joined this group yesterday. I am a bit older then you

are.

> I am 53 and a grandmother. I am so thankful for this group. I

also

> suffer from pudendal neuralgia which I am seing a specialist for

and

> doing PT. My husband and I did not have intercourse since

February.

> We were finally able to twice last month. I used Astroglide. It

> sure does not feel the same as it used to. I told him to go slow

and

> I wonder if it will ever feel as good as it used too. I ordered

some

> Slippery Stuff but I don't know what color label it has. I have

> suffered from vulvodynia for four years. It finally got to the

point

> where I could not sit down comfortably. I told my doctor to either

> admit me to a hospital in Birmingham Alabama or to refer me

> somewhere else. It was getting to the point where I wondered if the

>

> pain was worth it. So I was referred to a Pain Management and

> Reconstruction Center in Chattanooga, TN. Anyway in October I was

> diagnosed with PN. I take Gabepentin and Naproxsyn for nerve

pain.

> Both don't do much to help. I am in physical therapy once a week

> until the third week in March and then I will be reevaluated. If

he

> recommends surgery I will go for a second opinion in Birmingham,

AL.

> I have had two nerve blocks and only got 5 hrs of relief each for

> over $200 a treatment. My dr had me blowdrying my genitals which I

> stopped because I felt like it was drying me out too much. They

> suggested olive oil. I used it but it didn't seem to do too much

> good so I have about quit it. I shower with Aveeno then just pat

> myself dry. It doesn't matter if I wear jeans or sweats I still

feel

> constant burning and stinging and pressure at times. I have heard

> some good things about emu oil so I

> ordered some of it. I have

> noticed that the area of my perineum is thinning out too. I have a

> special pillow to use for sitting which I do very little of. Its

> just one day at a time I keep telling myself. I used to work a

full

> time job, attend a university, and dontate time to big brothers and

> big sisters. I lost my job in July 2007 due to my medical

absences.

> I wonder if I will ever work again. I have always worked in the

> admin or customer service field which requires a lot of sitting.

> Also, I do not want my marriage to fail. I know I have said a lot

> but I am new and I want to contribute as well as benefit from my

> membership. Thanks for hearing me out.

>