Re: Just Need Some Cheering Up -

[Guest guest]

Just to be sure, does the slippery stuff you are using have a blue label? I once ordered the one with the red label and 'hated' it! It was WAY to slippery. ;-) I spent yrs. being afraid of running into too much medical debt, and in many ways, kept bouncing around in my area between docs that didn't know squat! Isn't it amazing how many of those there are??? Last yr. I made a promise to myself that I'd do whatever it takes to get well, even if that meant debt! I do have medical debt right now...but I've also gotten more answers than I ever have before. I had to go out of state several times -- even flying twice, but I'm glad I did. hang in there and do the best you can, maybe some of the suggestions on the group will help you until you can afford to get in to see someone. We women are

known to get creative when need be! ;-) Take Care and I hope you feel better SOON! Hugs, ChelleWe tried the liquid kind of slippery stuff this time. It felt about the same as anything else we've used. It's non-irritating though so I'm going to use it I guess. I've gone through the local Dr.s and right now I cannot afford to travel to see another so I'm sort of in limbo hoping it will improve. Here they all seem to have never heard of anything like lingering vulvar pain.

[Guest guest]

There is definitely a lot more wisdom and knowledge here than the

lot of Dr.s I have seen!

>

> We tried the liquid kind of slippery stuff this time. It felt

about

> the same as anything else we've used. It's non-irritating though

so

> I'm going to use it I guess.

>

> I've gone through the local Dr.s and right now I cannot afford to

> travel to see another so I'm sort of in limbo hoping it will

> improve. Here they all seem to have never heard of anything like

> lingering vulvar pain.

>

[Guest guest]

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.

Debboe S.

> >

> > We tried the liquid kind of slippery stuff this time. It felt

> about

> > the same as anything else we've used. It's non-irritating though

> so

> > I'm going to use it I guess.

> >

> > I've gone through the local Dr.s and right now I cannot afford to

> > travel to see another so I'm sort of in limbo hoping it will

> > improve. Here they all seem to have never heard of anything like

> > lingering vulvar pain.

> >

>

[Guest guest]

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.

Debboe S.

> >

> > We tried the liquid kind of slippery stuff this time. It felt

> about

> > the same as anything else we've used. It's non-irritating though

> so

> > I'm going to use it I guess.

> >

> > I've gone through the local Dr.s and right now I cannot afford to

> > travel to see another so I'm sort of in limbo hoping it will

> > improve. Here they all seem to have never heard of anything like

> > lingering vulvar pain.

> >

>

[Guest guest]

this message is for Debbie.  I am in Birmingham Alabama and was wondering what doctor you have seen?To: VulvarDisorders Sent: Thursday, January 1, 2009 9:18:11 PMSubject: Re: Just Need Some Cheering Up -

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.

Debboe S.

> >

> > We tried the liquid kind of slippery stuff this time. It felt

> about

> > the same as anything else we've used. It's non-irritating though

> so

> > I'm going to use it I guess.

> >

> > I've gone through the local Dr.s and right now I cannot afford to

> > travel to see another so I'm sort of in limbo hoping it will

> > improve. Here they all seem to have never heard of anything like

> > lingering vulvar pain.

> >

>

[Guest guest]

> > >

> > > We tried the liquid kind of slippery stuff this time. It felt

> > about

> > > the same as anything else we've used. It's non-irritating though

> > so

> > > I'm going to use it I guess.

> > >

> > > I've gone through the local Dr.s and right now I cannot afford to

> > > travel to see another so I'm sort of in limbo hoping it will

> > > improve. Here they all seem to have never heard of anything like

> > > lingering vulvar pain.

Hi debbie,

I am so sorry that you are going through this. I have the same as you

and in constant pain or burning etc. How many mg. of Neurontin did you

take? I am taking that now to stop the nerve pain and up to 2100mg. So

far I cannot tell any difference. Also did you go to a neurologist for

he nerve pain? Is that how they found out you have Pudendal nerve

problems? I am thinking I need to go to one besides my vulvar

specialist. Like you I need major relief and it only seems that I am

getting worse as time goes on.

Any info you can share with me will be greatly appreciated. Good luck.

Have you tried Lidocaine for the pain. I do have a 10% compounded one

that does help most of the time. Forget sex for me. This is a

horrible condition to try and live with. God bless us all who are

living with pain.

> > >

> >

>

[Guest guest]

Hi,

I am so thankful for people like you and this forum. After 4 years

of appointment with my gyncelogist who I have seen for over 20 yrs

and another I saw for 2yrs, he basically told me there was nothing

else he could do for me. I had been battling several yeast and

bacterial infections throughout those years. He referred me to a

pain management and reconstruction center in Chattanooga, TN. They

let me pick between that and Birmingham, AL. Both are about 2 hrs

away from my home so I chose Chattanooga because that is where my

daughter and 4yr old grandson live. I had an examination there in

October and was told I had PN. I was scheduled for my first nerve

block two days later. My husband was out working in St. Louis and

got to be there before the procedure started. My daughter had taken

me to get the procedure. With the first nerve block I remember being

in the OR, the next thing I remember is being dressed. They told me

to try to stand up. I couldn't so they took me in a wheelchair to

the truck. My daughter and husband said I kept repeating myself.

The right half of my genitals, the backside of that leg and foot

remained numb until Sunday afternoon. On my second nerve block they

must have got it right because I remember everything. The first one

left me with a nasty black bruise in my genital area. Anyway it was

total pain relief for 5 hrs each but too expensive. My dr suggested a

third one but I declined. I have gone through 3 sessions of PT and

have nine to go. Then I get reevaluated. If the dr recommends

surgery I will get a second opinion from a very good dr in

Birmingham. I called for an appt two months ago and have an appt

for Julyh 9th. They told me with cancellations it may be a couple of

months before. The reason I would not let the dr in Chatt perform

the surgery is because I got a private message from someone on

another forum I belong to. She had the surgery and had to have

multiple ones after, also he made a patient incontinent. I thought

my whole world collapsed, finally finding someone who may help then

finding out the other stuff. I currently take 300mg of Gabepentin

three times a day, 440mg of Naproxsyn, 50mg of Cymbalta, Mirtazapine

7.5mg, 200mg Prometrium twice a day and 500mg Valtrex. I have a tube

of Lidocaine prescribed to me a couple of years ago and haven't used

it much. You are right this condition is miserable and this forum

helps. Wish me luck going to my husband's xmas party tomorrow night

in Nashville. It is a 2 1/2 hr drive. They will put us up at the

Sheraton. We will have dinner too. I will bring my special pillow

and only use it for dinner sitting. I use ice sometimes but it

doesn't help much. I don't get much relief from the gabepentin.

Take Care of Yourself. God Bless Us All.

Debbie S.

> > > >

> > > > We tried the liquid kind of slippery stuff this time. It felt

> > > about

> > > > the same as anything else we've used. It's non-irritating

though

> > > so

> > > > I'm going to use it I guess.

> > > >

> > > > I've gone through the local Dr.s and right now I cannot

afford to

> > > > travel to see another so I'm sort of in limbo hoping it will

> > > > improve. Here they all seem to have never heard of anything

like

> > > > lingering vulvar pain.

>

>

>

> Hi debbie,

>

> I am so sorry that you are going through this. I have the same as

you

> and in constant pain or burning etc. How many mg. of Neurontin did

you

> take? I am taking that now to stop the nerve pain and up to

2100mg. So

> far I cannot tell any difference. Also did you go to a neurologist

for

> he nerve pain? Is that how they found out you have Pudendal nerve

> problems? I am thinking I need to go to one besides my vulvar

> specialist. Like you I need major relief and it only seems that I

am

> getting worse as time goes on.

>

> Any info you can share with me will be greatly appreciated. Good

luck.

> Have you tried Lidocaine for the pain. I do have a 10% compounded

one

> that does help most of the time. Forget sex for me. This is a

> horrible condition to try and live with. God bless us all who are

> living with pain.

>

>

> > > >

> > >

> >

>

[Guest guest]

Hi,

I live in Guntersville, Alabama. The dr I have seen is Dr. Nieves in

Chattanooga, TN. I have an appt with Dr. Childs who works out

of Brookwood in July. I made that appt two months ago. They say I

may get in a couple of months early with cancellations. He is

supposed to be very good. Hope that helps.

Debbie S.

> > >

> > > We tried the liquid kind of slippery stuff this time. It felt

> > about

> > > the same as anything else we've used. It's non-irritating

though

> > so

> > > I'm going to use it I guess.

> > >

> > > I've gone through the local Dr.s and right now I cannot afford

to

> > > travel to see another so I'm sort of in limbo hoping it will

> > > improve. Here they all seem to have never heard of anything

like

> > > lingering vulvar pain.

> > >

> >

>

[Guest guest]

Debbie,Dr. Child's is my doctor!!!!!!!  He did surgery on me.  After seeing a female doctor who could not help me she referred him to me.  What a Godsend.He is wonderful not only as a doctor but as a person.  Wow I can't believe you have to wait until July.  I believe you will really like him.From: debbie.stewart55

To: VulvarDisorders Sent: Friday, January 2, 2009 7:11:30 PMSubject: Re: Just Need Some Cheering Up -

Hi,

I live in Guntersville, Alabama. The dr I have seen is Dr. Nieves in

Chattanooga, TN. I have an appt with Dr. Childs who works out

of Brookwood in July. I made that appt two months ago. They say I

may get in a couple of months early with cancellations. He is

supposed to be very good. Hope that helps.

Debbie S.

> > >

> > > We tried the liquid kind of slippery stuff this time. It felt

> > about

> > > the same as anything else we've used. It's non-irritating

though

> > so

> > > I'm going to use it I guess.

> > >

> > > I've gone through the local Dr.s and right now I cannot afford

to

> > > travel to see another so I'm sort of in limbo hoping it will

> > > improve. Here they all seem to have never heard of anything

like

> > > lingering vulvar pain.

> > >

> >

>