Re: Welcome to VulvarDisorders@onelist.com

April 25, 1999

Hi ,

I agree with Sandi's post re: Estrace. I am 47 and have had this pain for

over a year. I am on Nortriptyline (an antidepressant) which has helped

quite a bit. About 4 1/2 weeks ago I went on Estrace. I feel very hopeful

that this will help me. It can take anywhere from 6 weeks to several months

for relief. You'll learn more about other options on this list. Let us know

if we can help.

Kathy

April 25, 1999

Hi ,

I agree with Sandi's post re: Estrace. I am 47 and have had this pain for

over a year. I am on Nortriptyline (an antidepressant) which has helped

quite a bit. About 4 1/2 weeks ago I went on Estrace. I feel very hopeful

that this will help me. It can take anywhere from 6 weeks to several months

for relief. You'll learn more about other options on this list. Let us know

if we can help.

Kathy

May 5, 1999

Hi Everyone, My name is Donna and I'm new to this list but so glad to

find you. I have I. C., Vulvadynia, and I am guessing I B S and Fibro.

I've had I. C. for about 6 years. I thought the Vulvadynia was one of

the symptoms of I. C. and didn't even know a name for it until someone

in a support group I belong to mentioned it. I take 30 mg of

Amitriptiline before bed. It has helped my I. C. but not the pressure

and urgency. My vulvadynia is relentless. I have burning constantly

but especially when stressed or have eaten some unknown object. Hee I

try to be careful with what I eat but with the I. C. diet and the

Vulvadynia diet it doesn't leave much to eat. Especially when dining

out. I have tried different things. Am now using Estrace cream. I feel

all of my symptoms began with a back problem that I wasn't even much

aware of. Later found out I have a herniated disc L5, Sl which pinches

the sciatic nerve and obviously nerves that have to do with the bladder

and vulvar area. I have pain also in buttocks area. Feels like

something is shoved up there. Sorry to be so crude but maybe one of you

also has that symptom. When I first started having that symptom of

course I went to the doctor right away afraid that I had a growth or

something but there's nothing obviously wrong there. I won't go into

the long story of Urologists, Gyno, etc. that I've been to. Am

seriously thinking of going to a Naturopath but then wonder about the

amitriptyline. I know it's helping me. I have been told to have spinal

fusion by one doctor. I'll have to be crawling on my hands and knees

before I seriously consider that. I used to do laps in a pool which

helped my back but made the burning worse. I have gone to a

Chiropractor that has a table called the Leander Table which is great

for stretching the spine. I've had massages and am thinking about

acupuncture. I always want to try everything at once which is not a

good idea because then you don't know what's helping. I tried Calcium

Citrate but it made the burning worse but I'm going to try it again to

make sure that was the offender. I can't take any kind of pain

medication. They all make me ralph. The thing that helps me the most

when I have a bad flare is sitting on an ice pack. (the gel ones you put

in the freezer.) When driving very far I have to had a small ice chest

in the car to rotate the packs. (also helps the buttock pain) Isn't it

amazing what we will tell perfect strangers? Things I would'nt even

tell most of my friends. I've gone on long enough so I'll stop. I hope

I can contribute to the list and help give support when it is needed.

Thanks for listening. Warm regards, Donna

VulvarDisorders-owneronelist wrote:

>

> Hello,

>

> Welcome to the list. I'm so sorry that you have a need to be here, but I hope

> that you will find this list a valuable resource. Please take a moment to

read

> over this important message.

>

> To send messages to the list, simply address them to

VulvarDisordersonelist

> and the entire group will receive the message - including you. Don't be

alarmed

> to find your own message in your mailbox. That just means that you

successfully

> got the message to the whole group.

>

> As a member of the list, you are required to be courteous of other list

members.

> Remember that everyone is entitled to their opinion, even if it is very

> different than yours. Discussion is encouraged, but make sure that you take

> care to not step on anyone's feelings while expressing your views. We are all

> here because we are dealing with a painful and frustrating condition, and that

> means that we are all vulnerable. If you remember to treat others as you

would

> want to be treated, everything should run smoothly.

>

> Now that you are a member of this list, please take a moment to introduce

> yourself. It may be helpful to others to describe what condition you are

> dealing with, what treatments you have tried (if any), and anything else you

may

> want to share with others. Please don't ever feel that your story isn't as

> important as anyone elses. We can learn a great deal from each other and

> hearing your story is valuable to all of us.

>

> If you are uncomfortable stepping forward right away and introducing yourself,

> please feel free to observe and soak in whatever information you can from the

> wonderful women that make up this list.

>

> Healing thoughts to all of you,

>

> Heidi Walsh

> The List Owner & Moderator

>

> **Check out the Vulvar Disorders Web Site at

> http://www.angelfire.com/md/vulvardisorders if you haven't already.**

May 5, 1999

Hi Donna,

We are glad that you found us! I wanted to tell you

that I also suffer from a back injury. L5 S1 too.

That's interesting. I wonder what that means??

Anyway, I injured my back 14 years ago and just had

the vulvodynia pop up last June. I am not sure if

there is a relation but there could be. I wanted to

tell you what has helped my back more than anything -

believe it or not doing stomach crunches. LOTS of

them. And also, stretching the back part of your

thighs - the hamstrings. My brother in law is a very

famous back surgeon and when I told him that it was

suggested that I have a spinal fusion he told me not

to have one unless I had incredible numbness all the

way down to my toes - this from a man who does back

surgery for a living. Just an fyi. I hope you find

much support and comfort here. Welcome. Sincerely,

Michele

--- " Donna C. White " wrote:

>

> Hi Everyone, My name is Donna and I'm new to this

> list but so glad to

> find you. I have I. C., Vulvadynia, and I am

> guessing I B S and Fibro.

> I've had I. C. for about 6 years. I thought the

> Vulvadynia was one of

> the symptoms of I. C. and didn't even know a name

> for it until someone

> in a support group I belong to mentioned it. I take

> 30 mg of

> Amitriptiline before bed. It has helped my I. C.

> but not the pressure

> and urgency. My vulvadynia is relentless. I have

> burning constantly

> but especially when stressed or have eaten some

> unknown object. Hee I

> try to be careful with what I eat but with the I. C.

> diet and the

> Vulvadynia diet it doesn't leave much to eat.

> Especially when dining

> out. I have tried different things. Am now using

> Estrace cream. I feel

> all of my symptoms began with a back problem that I

> wasn't even much

> aware of. Later found out I have a herniated disc

> L5, Sl which pinches

> the sciatic nerve and obviously nerves that have to

> do with the bladder

> and vulvar area. I have pain also in buttocks area.

> Feels like

> something is shoved up there. Sorry to be so crude

> but maybe one of you

> also has that symptom. When I first started having

> that symptom of

> course I went to the doctor right away afraid that I

> had a growth or

> something but there's nothing obviously wrong there.

> I won't go into

> the long story of Urologists, Gyno, etc. that I've

> been to. Am

> seriously thinking of going to a Naturopath but then

> wonder about the

> amitriptyline. I know it's helping me. I have been

> told to have spinal

> fusion by one doctor. I'll have to be crawling on

> my hands and knees

> before I seriously consider that. I used to do laps

> in a pool which

> helped my back but made the burning worse. I have

> gone to a

> Chiropractor that has a table called the Leander

> Table which is great

> for stretching the spine. I've had massages and am

> thinking about

> acupuncture. I always want to try everything at

> once which is not a

> good idea because then you don't know what's

> helping. I tried Calcium

> Citrate but it made the burning worse but I'm going

> to try it again to

> make sure that was the offender. I can't take any

> kind of pain

> medication. They all make me ralph. The thing that

> helps me the most

> when I have a bad flare is sitting on an ice pack.

> (the gel ones you put

> in the freezer.) When driving very far I have to

> had a small ice chest

> in the car to rotate the packs. (also helps the

> buttock pain) Isn't it

> amazing what we will tell perfect strangers? Things

> I would'nt even

> tell most of my friends. I've gone on long enough

> so I'll stop. I hope

> I can contribute to the list and help give support

> when it is needed.

> Thanks for listening. Warm regards, Donna

> VulvarDisorders-owneronelist wrote:

> >

> > Hello,

> >

> > Welcome to the list. I'm so sorry that you have a

> need to be here, but I hope

> > that you will find this list a valuable resource.

> Please take a moment to read

> > over this important message.

> >

> > To send messages to the list, simply address them

> to VulvarDisordersonelist

> > and the entire group will receive the message -

> including you. Don't be alarmed

> > to find your own message in your mailbox. That

> just means that you successfully

> > got the message to the whole group.

> >

> > As a member of the list, you are required to be

> courteous of other list members.

> > Remember that everyone is entitled to their

> opinion, even if it is very

> > different than yours. Discussion is encouraged,

> but make sure that you take

> > care to not step on anyone's feelings while

> expressing your views. We are all

> > here because we are dealing with a painful and

> frustrating condition, and that

> > means that we are all vulnerable. If you remember

> to treat others as you would

> > want to be treated, everything should run

> smoothly.

> >

> > Now that you are a member of this list, please

> take a moment to introduce

> > yourself. It may be helpful to others to describe

> what condition you are

> > dealing with, what treatments you have tried (if

> any), and anything else you may

> > want to share with others. Please don't ever feel

> that your story isn't as

> > important as anyone elses. We can learn a great

> deal from each other and

> > hearing your story is valuable to all of us.

> >

> > If you are uncomfortable stepping forward right

> away and introducing yourself,

> > please feel free to observe and soak in whatever

> information you can from the

> > wonderful women that make up this list.

> >

> > Healing thoughts to all of you,

> >

> > Heidi Walsh

> > The List Owner & Moderator

> >

> > **Check out the Vulvar Disorders Web Site at

> > http://www.angelfire.com/md/vulvardisorders if you

> haven't already.**

>

------------------------------------------------------------------------

> Did you know that

> http://www.ONElist.com

> More than 3.5 million people are using ONElist?

>

------------------------------------------------------------------------

>

May 5, 1999

Hi Donna,

We are glad that you found us! I wanted to tell you

that I also suffer from a back injury. L5 S1 too.

That's interesting. I wonder what that means??

Anyway, I injured my back 14 years ago and just had

the vulvodynia pop up last June. I am not sure if

there is a relation but there could be. I wanted to

tell you what has helped my back more than anything -

believe it or not doing stomach crunches. LOTS of

them. And also, stretching the back part of your

thighs - the hamstrings. My brother in law is a very

famous back surgeon and when I told him that it was

suggested that I have a spinal fusion he told me not

to have one unless I had incredible numbness all the

way down to my toes - this from a man who does back

surgery for a living. Just an fyi. I hope you find

much support and comfort here. Welcome. Sincerely,

Michele

--- " Donna C. White " wrote:

>

> Hi Everyone, My name is Donna and I'm new to this

> list but so glad to

> find you. I have I. C., Vulvadynia, and I am

> guessing I B S and Fibro.

> I've had I. C. for about 6 years. I thought the

> Vulvadynia was one of

> the symptoms of I. C. and didn't even know a name

> for it until someone

> in a support group I belong to mentioned it. I take

> 30 mg of

> Amitriptiline before bed. It has helped my I. C.

> but not the pressure

> and urgency. My vulvadynia is relentless. I have

> burning constantly

> but especially when stressed or have eaten some

> unknown object. Hee I

> try to be careful with what I eat but with the I. C.

> diet and the

> Vulvadynia diet it doesn't leave much to eat.

> Especially when dining

> out. I have tried different things. Am now using

> Estrace cream. I feel

> all of my symptoms began with a back problem that I

> wasn't even much

> aware of. Later found out I have a herniated disc

> L5, Sl which pinches

> the sciatic nerve and obviously nerves that have to

> do with the bladder

> and vulvar area. I have pain also in buttocks area.

> Feels like

> something is shoved up there. Sorry to be so crude

> but maybe one of you

> also has that symptom. When I first started having

> that symptom of

> course I went to the doctor right away afraid that I

> had a growth or

> something but there's nothing obviously wrong there.

> I won't go into

> the long story of Urologists, Gyno, etc. that I've

> been to. Am

> seriously thinking of going to a Naturopath but then

> wonder about the

> amitriptyline. I know it's helping me. I have been

> told to have spinal

> fusion by one doctor. I'll have to be crawling on

> my hands and knees

> before I seriously consider that. I used to do laps

> in a pool which

> helped my back but made the burning worse. I have

> gone to a

> Chiropractor that has a table called the Leander

> Table which is great

> for stretching the spine. I've had massages and am

> thinking about

> acupuncture. I always want to try everything at

> once which is not a

> good idea because then you don't know what's

> helping. I tried Calcium

> Citrate but it made the burning worse but I'm going

> to try it again to

> make sure that was the offender. I can't take any

> kind of pain

> medication. They all make me ralph. The thing that

> helps me the most

> when I have a bad flare is sitting on an ice pack.

> (the gel ones you put

> in the freezer.) When driving very far I have to

> had a small ice chest

> in the car to rotate the packs. (also helps the

> buttock pain) Isn't it

> amazing what we will tell perfect strangers? Things

> I would'nt even

> tell most of my friends. I've gone on long enough

> so I'll stop. I hope

> I can contribute to the list and help give support

> when it is needed.

> Thanks for listening. Warm regards, Donna

> VulvarDisorders-owneronelist wrote:

> >

> > Hello,

> >

> > Welcome to the list. I'm so sorry that you have a

> need to be here, but I hope

> > that you will find this list a valuable resource.

> Please take a moment to read

> > over this important message.

> >

> > To send messages to the list, simply address them

> to VulvarDisordersonelist

> > and the entire group will receive the message -

> including you. Don't be alarmed

> > to find your own message in your mailbox. That

> just means that you successfully

> > got the message to the whole group.

> >

> > As a member of the list, you are required to be

> courteous of other list members.

> > Remember that everyone is entitled to their

> opinion, even if it is very

> > different than yours. Discussion is encouraged,

> but make sure that you take

> > care to not step on anyone's feelings while

> expressing your views. We are all

> > here because we are dealing with a painful and

> frustrating condition, and that

> > means that we are all vulnerable. If you remember

> to treat others as you would

> > want to be treated, everything should run

> smoothly.

> >

> > Now that you are a member of this list, please

> take a moment to introduce

> > yourself. It may be helpful to others to describe

> what condition you are

> > dealing with, what treatments you have tried (if

> any), and anything else you may

> > want to share with others. Please don't ever feel

> that your story isn't as

> > important as anyone elses. We can learn a great

> deal from each other and

> > hearing your story is valuable to all of us.

> >

> > If you are uncomfortable stepping forward right

> away and introducing yourself,

> > please feel free to observe and soak in whatever

> information you can from the

> > wonderful women that make up this list.

> >

> > Healing thoughts to all of you,

> >

> > Heidi Walsh

> > The List Owner & Moderator

> >

> > **Check out the Vulvar Disorders Web Site at

> > http://www.angelfire.com/md/vulvardisorders if you

> haven't already.**

>

------------------------------------------------------------------------

> Did you know that

> http://www.ONElist.com

> More than 3.5 million people are using ONElist?

>

------------------------------------------------------------------------

>

May 12, 1999

heidi

thank you for the e-mail. i will introduce myself.

i just found your site and cant believe how many women suffer with the same

thing.

my problem started after i gave birth to my first son 8 years ago. i had a

urinary tract infection. i went to the docotor and he prescribed macrodantin

and it completely relieved the pain and discomfort. two weeks later it felt

like the whole thing started again so i asked my husband(hes a dentist) to

prescribe me macrodantin again instead of going to the dr( not a good idea)

anyway after the 10 days i had no relief

from this burning that i was feeling. i went to the doctor and he gave me a

vaginal

yeast cream for the outside because i was red and inflamed (at that point he

never

tested for yeast. at first it relieved it but within 2 days i was

uncomfortable again ( i would get an intense burning and didnt feel the urge

to urinate , i would just get a more intense burning and then i knew i needed

to go. also if i lifted anything it would make it worse the pressure would

intensify the burning . i also noticed if i wore anything tight around my

waist like tight jeans it would become unbearable.) i called the dr again and

the nurse told me to use over the counter monistat so i got monistat 3, i

called the office again when it wasnt relieved she told me to do the monistat

7 and i did. no relief (in the meantime i had check laundrey det, soaps

cotton underwear everything) i went back to the dr( and now i felt i was

being patronized )

he said oh i think you have clogged pores from a previouse infection (i had

never had any infections or problems in my life the way some woman do the

only thing i remeber as a kid i would have a burning problem but my mom would

tell me to pour warm water over myself until it went away but nothing major)

anyway the dr told me to soak in sea salt and i did and it did help. this

went on 3 years i got pregnant again

and it totally went away. then it came back ( i had started excersizing so i

though mabye the sweating and everything else might be irritating it (it felt

like i was on fire like i had such a bad rash that was rubbed raw) i went to

a new gyno who did a scope and could find nothing soi went to another gynoa

female and she said that she was suprised that she thought by what i

described that i was gonna be really red and inflamed and i wasnt so she gave

me an antibiotic cream which didnt help but by this time i couldnt bring

myself to go to another dr because i felt it was in my mind . after awhile it

left . this past month i had gotton my period and i felt very anxiouse which

usually means my harmones are off and dont you know i got hit with it again .

i noticed that it is high allergy season here and my allergies have been

bothering me (allergic to mold) im also a person who craves milk products ice

cream frozen yogurt.. and i eat alot of sugar could this be adding to it? i

alsonotice im very fatigued with it. i dont know if its because i cant

excersize with this or its truly physical at this point i give up on drs. i

was so relieved to find out that there are other women

who have experienced this although i wish that they didnt. thank youfor

letting me share ! i feel much better

sincerely

catherine

May 12, 1999