(no subject)

[Guest guest]

Ladies:

The following message was sent to me by the powers that be at Onelist

(the sponsors of this list). Thought you ladies would like a " heads

up " .

Heidi

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

Hello,

This is a notice to let you know that the ONElist system will be down

for

scheduled maintenance on Wednesday, November 18 from 6pm to Midnight

Pacific

Time. We continue to experience explosive growth; in the past three

months we have more than quadrupled our user base. To keep up with our

growth,

we are continuing to upgrade the hardware that runs the ONElist system.

That is what we will be doing Wednesday evening. Any email sent during

this time will be stored and sent out when the system is back up.

We are commited to providing the best service possible for our users.

Thanks for using ONElist!

[Guest guest]

This is for Aimee and I am afraid with that long a personal email address, I

would only get it sent back with a period missing or something.

I would be glad to help you w/your intervciews..I AM on one originating in

Calif for a master degree PhD student..entailing 3 separate lists of

questions..just sent the first to her and it only took about l/2 an hour.

I should tell you that I am 84 years old!! I have had IC for 57 years!!! The

VV arrived on the scene about 6-8 yers ago..and then followed Fibromyalgia,

irritable Bowel Syndrome, Chronic fagigue syndrome, a fungus Sinusitis

entailing 2 surgeries in the last 3 years..plus Asthma..also in the last 3

years.

I am contant pain..have had No sexual relations in about l0 years .. not even

" cuddling " as I am much too sore & always in a LOT of pain. I had one child

while having IC..NO picnic. I have had all the treatments given to IC

patients..of course, When I got it, it was " all in my head " for some 44 years

or more!WHen IC was " discovered', I was So elated..thinking there would be a

cure...but of course, there isn't nor even a treatment that works for most

people. It plays havoc with one's emotions..the up & down is killing to ANY

relationship..no travel, no planning, no socializing, no " life " , really. One

medicine counteracts another or has terrific side effects..or negates the

other medicine for the other condtitions. I could go on.. but, if you wish,

will be at your service. LHend12816@... Lorane

[Guest guest]

Aimee,

Welcome! I too am sorry that you have to be here but you will find this list a

great resource both

emotionaly and intellectually.I will be more than happy to do any

interviews/questionairres. I

have been married for 4 years and have had vv for 3 1/2. I would really like to

know how other

people handle this situation in terms of their relationship with their

boyfriend/husband.

[Guest guest]

Aimee...You can count me in.......

----------

>

> To: vulvardisordersonelist

> Subject: (no subject)

> Date: Tuesday, November 24, 1998 10:09 AM

>

>

>

> Hi everyone.

>

> I just wanted to thank everyone who replied back to me about my thesis

> research. I will let all of you know more about it when I am able to work

> out the details. At least now I know that I will have participants and I

> can go ahead with the plans.

>

> For anyone who did not get my original message, I am a vulvodynia patient

> who is also doing a thesis on the communication and coping strategies

couple

> use to deal with changes in their sexual norms when things such as IC,

VV,

> Vulvodynia, Endo, etc become a part of their lives.

>

> If anyone who did not reply back to me would like to participate in an

> interview or questionairre sometime next Jan. or Feb, please let me know.

I

> havn't worked out all the details yet, but I need to know how many

> participants I might have.

>

> Thanks so much,

>

> Aimee

>

>

> ------------------------------------------------------------------------

>

[Guest guest]

There are lots of calcuim citrate pills on the market. The Citrate form is

less likely to cause consipation. I use it with magnesium citrate and

vitamin D. I read in Dr. Bob Arnot's Breast Cancer Prevention book that

vitamin D is very improtant in cancer prevention, and utilization of

minerals and vitamin A.

Lona

ICQ# 16175003

>

>Just curious if anyone is taking calcium citrate pills for vv? My doctor

>prescribed them and I am taking about 6 of the pill " CitraCal " . I am just

>asking if anyone knows of any other pill that does the same thing, because

I

>have a very hard time swallowing the citracal as they are very large.

[Guest guest]

Aimee,

I had the same problem with the pills. My doctor informed me you can get the

same dose by drinking 2 glasses of orange juice with calcium added per day.

That is what I have been doing. I have not noticed a difference yet but it

can't hurt to try.

Beckie

[Guest guest]

Hey Everyone!

I just wanted to introduce myself. I was just diagnosed with VVS this past

week due to chronic candidiasis. It took me about two months to get this

diagnosis. I am glad I finally know what is going on but I am still new to

this all and to the treatments. It is so nice to know that there are other

people out there that know what this is like and can help support eachother.

[Guest guest]

Welcome !

I hope we can all help with with ideas and support! This is a great list and

it is a life saver to know that there are others out there with VV...at

least it sure was for me when I found all these wonderful women. I am glad

you are with us!

A

Re: (no subject)

>From: Aysana@...

>

>Hey Everyone!

>I just wanted to introduce myself. I was just diagnosed with VVS this past

>week due to chronic candidiasis. It took me about two months to get this

>diagnosis. I am glad I finally know what is going on but I am still new to

>this all and to the treatments. It is so nice to know that there are other

>people out there that know what this is like and can help support

eachother.

>

>

>

>------------------------------------------------------------------------

>

[Guest guest]

lie,

I live in Boca Raton, FL, which is in southeast Florida. I have a great

doctor in Miami, which is probably too far for you.

There is another doctor in West Palm Beach, his name is Jay Trabin, ph# is

. I have not seen this doctor, but he was recommened by a

support person with the NVA.

----------

>

> To: VulvarDisordersonelist

> Subject: (no subject)

> Date: Saturday, December 05, 1998 12:31 AM

>

>

>

> Hi Everyone:

> I'm new to the list. Everything I read sounds exactly like me. I

> also have lichen schlerosis. I have read that this is like a pre-cancer

> but my gyn says its not.

> I will be leaving for Florida at the end of the month and staying

> there for 3 months. Someone, and I can't remember who, said they had

> found a great doctor in Florida. I was just wondering where in

> Florida. I'll be staying in Central Florida about 10 miles from

> Disney. If anyone knows of a good doctor/gyn who knows something about

> Vulvodynia and is around that area I would appreciate you letting me

> know.

> Everyone around here thinks I'm some kind of a nut and that its all

> in my head and now thanks to this group, I know its not. Thanks, Rose

>

>

> ------------------------------------------------------------------------

>

[Guest guest]

: Thanks for the name of the doctor in Florida. If I can't find

anyone else nearby, I'll call him. Appreciate it....Rose

R.N. wrote:

>

>

> lie,

>

> I live in Boca Raton, FL, which is in southeast Florida. I have a great

> doctor in Miami, which is probably too far for you.

>

> There is another doctor in West Palm Beach, his name is Jay Trabin, ph# is

> . I have not seen this doctor, but he was recommened by a

> support person with the NVA.

>

>

>

> ----------

> >

> > To: VulvarDisordersonelist

> > Subject: (no subject)

> > Date: Saturday, December 05, 1998 12:31 AM

> >

> >

> >

> > Hi Everyone:

> > I'm new to the list. Everything I read sounds exactly like me. I

> > also have lichen schlerosis. I have read that this is like a pre-cancer

> > but my gyn says its not.

> > I will be leaving for Florida at the end of the month and staying

> > there for 3 months. Someone, and I can't remember who, said they had

> > found a great doctor in Florida. I was just wondering where in

> > Florida. I'll be staying in Central Florida about 10 miles from

> > Disney. If anyone knows of a good doctor/gyn who knows something about

> > Vulvodynia and is around that area I would appreciate you letting me

> > know.

> > Everyone around here thinks I'm some kind of a nut and that its all

> > in my head and now thanks to this group, I know its not. Thanks, Rose

> >

> >

> > ------------------------------------------------------------------------

> >

[Guest guest]

Hey everyone,

For those of you out there who believe that their VV or any other medical

problems, like IBS, are due to yeast problems, I found a great doctor here in

Memphis through a book I bought at Borders. It is called " Candida Related

Complex-What Your Doctor Might Be Missing " It is by Winderlin and

Sehnert M.D and I think was printed in 1997. Aside from great info on

yeast problems and vaginitis (though not much on VV) , there is a section at

the back of the book that lists doctors in specific states by area code that

deal with yeast-related problems. It gives their addresses, and phone numbers.

They also have listed organizations you can call or write to that could

provide more doctors names in your area. Thought this might be useful to some

of you. I went to the doctor I found here in Memphis yesturday and he was

extremely knowledgeable about yeast problems and even knew about VV. He has

put me on a variety of supplements and daily diflucan as well as the strict

diet. I'm going back in two weeks for another checkup and some blood work as

well. Hoping that this will give me some improvement

[Guest guest]

Hi there,

i have used boric acid tablets. My old gyn told me to use them if i ever

felt the start of a yeast infection. sometimes it worked, sometimes it didn;t.

i needed a presciption for them -- sounds easier than filling capsules

yourself but if it is much cheaper fill away!!

the pain about the capsules is that they leak and so they tended to wake me

up a few times a night.

mia

At 01:11 18/12/98 -0500, you wrote:

>

>

>I want to thank everyone for all the responses I got to my question on

>Diflucan. I really appreciate it. Has anyone used the boric acid

>capsules? They are taken twice a day for how long? I hear you can get

>the capsules in a health food store and fill them with boric acid. Is

>there a certain kind of boric acid to use? My GYN has left for vacation

>so I can't get a prescription for them ( don't know if a prescription is

>needed). I am also leaving for Florida next week and will be gone until

>April. I will be putting the No Mail thing on before I leave. Wish I

>could take my computer but can't. I've only been in the group for a

>short time but I certainly will miss you while I'm gone. I've learned a

>lot listening to everyone. Best of luck to everyone and happy

>holidays. Rose

>

>

>------------------------------------------------------------------------

>

[Guest guest]

A lady posted a question to me a few days ago. When I went to answer it I

deleted it by mistake. I also don't know if it was here or on the other list

I'm on. Please resend you question and I'll be happy to answer it.

Shirley.

[Guest guest]

At 11:09 AM 12/30/98 -0500, you wrote:

>From: mkbryan@...

>

>How do you test for IC? How do you treat it?

The sites I gave before have more information, but briefly, usually the

test for IC is a bladder hydrodistention--your bladder is distended as far

as possible, and the doctor looks for bleeding and/or ulceration (the

classic signs of IC). Ideally you should be under sedation for this because

if you do have IC, it can be very painful if you're not. If a doctor won't

knock you out for it, i wouldn't go to them, as they aren't very sensitive

to the pain of those with IC.

As for treatments, it's incurable, but there are several treatments ranging

from diet (low acid), hydrodistention, bladder instillations (putting

things directly in your bladder; the most common one used is DMSO),

l-arginine (an amino acid), and Elmiron (oral medication). There are other

treatments, but these come to mind off the top of my head. Not all of these

help everyone, and some will make some people worse. (My hydrodistention

made me much worse and I'm still somewhat recovering from it.) Also, there

are natural remedies, such as marshmallow root tea, that help some people.

HTH!

--'--,-{@ --,--'-{@ --'--,-{@

Rosen, Tursa Web Goddess

renee@...

http://dspace.dial.pipex.com/tursa/

http://www.lechatnoir.com

[Guest guest]

At 09:09 PM 12/31/98 -0500, you wrote:

>I believe all of my conditions may be related: IBS, eczema, allergies,

>cystitis

>insomnia, depression, generalized muscle pain, but I'm not sure how yet.

Have you looked into fibromyalgia (FMS) yet? Your symptoms sound like

classic FMS symptoms to me (I've got most of them as well as other

symptoms). Try a search for fibromyalgia on the web and see if your

symptoms fit in with it. Vulvodynia is quite common among women with FMS.

--'--,-{@ --,--'-{@ --'--,-{@

Rosen, Tursa Web Goddess

renee@...

http://dspace.dial.pipex.com/tursa/

http://www.lechatnoir.com

[Guest guest]

Dear ,

Your symptoms are most probably related. Many women with vulva pain have

all the things you have all at once. I do. You need to make yourself current

on all treatments and realize doctors know less than we do 95% of the time.

I'm including several places for you to read and learn about what is turning

out to be some kind of systemic disorder or disease. Please ask questions if

you have them. You can't learn what to do if you do not.

<A HREF= " http://www.vulvarpainfoundation.org/vpfcookbook.htm " >Welcome to the

Vulvar Pain Foundation's Website</A> <A HREF= " http://www.nva.org/ " >

http://www.nva.org/ </A><A HREF= " aol://5863:126/mB:108463 " >Vulvodynia &

Vestibulitis</A> <A HREF= " aol://4344:1643.FIB_040.12327438.563683873 " >FMS -

Genitourinary Syndrome</A>

<A HREF= " http://home.earthlink.net/~jshearer1/links.html " >Vulvodynia Links

Page</A> <A HREF= " http://www.branwen.com/rowan/ " >Rowan's Resources</A>

<A HREF= " http://205.161.179.87/welcome.html " >Interstitial Cystitis Association

- Home</A> <A HREF= " http://www.sonic.net/jill/icnet/handbook/ " >ICN Patient

Handbook</A> <A HREF= " http://home.earthlink.net/~jshearer1/ " >'s

Vulvodynia Web Page</A> I know it's a lot but you can find just about

anything with these links.

I also want you to know I understand the devastation involved with this

awful thing. Not one person on this list or anywhere with this has not been

where you are. The one consolation is some relief can be had for most all of

us. All we have to do is find the thing or combination of things that helps

us.

Blessings,

Shirley.

[Guest guest]

Carolyn,

As per your post, I'm new to the list, in HELLISH pain with vulvodynia - never

heard of the sponge tissue before - but it hurts everywhere. Cannot use any

creams nor any pain meds, had to give up walking (from 5 mi a day!) to barely

getting around in the house and to appts.

Am interested in that physiotherapy stuff. Have a Hellerwork practitioner who

would do it if she can papers and charts and directions. She is very good and

I trust her. Right now too sore to start but we've been looking for year for

information. I live in Kamloops, British Columbia, Canada - too far to go to

Vancouver.

I have had IC since 1974, severe and unrelenting vulvodynia for 2 years. I'm

just starting guaifenesin therapy.

Thanks, Alice

[Guest guest]

Carolyn,

As per your post, I'm new to the list, in HELLISH pain with vulvodynia - never

heard of the sponge tissue before - but it hurts everywhere. Cannot use any

creams nor any pain meds, had to give up walking (from 5 mi a day!) to barely

getting around in the house and to appts.

Am interested in that physiotherapy stuff. Have a Hellerwork practitioner who

would do it if she can papers and charts and directions. She is very good and

I trust her. Right now too sore to start but we've been looking for year for

information. I live in Kamloops, British Columbia, Canada - too far to go to

Vancouver.

I have had IC since 1974, severe and unrelenting vulvodynia for 2 years. I'm

just starting guaifenesin therapy.

Thanks, Alice

[Guest guest]

Interstitial cystitis suffers feel like they have a urinary tract infection

all the time---pain/discomfort before, during, and sometimes after urination,

frequent feeling of needing to urinate (up to 60 times a day), and frequently

have red blood cells in their urine. Deb

[Guest guest]

Joanne,

This is a, you say that you had burning? Was it constant, mine is. What

did you actually do to stop the burning, like what exercises etc.? If you

could tell me how your pain all started and everything you went through before

you actually tried physical therapy and what they did with you to make you

better I would greatly appreciate it. It's great to know that someone has

found relief with physical therapy because I wasn't sure if it could help.

a

[Guest guest]

Joanne,

This is a, you say that you had burning? Was it constant, mine is. What

did you actually do to stop the burning, like what exercises etc.? If you

could tell me how your pain all started and everything you went through before

you actually tried physical therapy and what they did with you to make you

better I would greatly appreciate it. It's great to know that someone has

found relief with physical therapy because I wasn't sure if it could help.

a

[Guest guest]

Joanne,

This is a, you say that you had burning? Was it constant, mine is. What

did you actually do to stop the burning, like what exercises etc.? If you

could tell me how your pain all started and everything you went through before

you actually tried physical therapy and what they did with you to make you

better I would greatly appreciate it. It's great to know that someone has

found relief with physical therapy because I wasn't sure if it could help.

a

[Guest guest]

Hi a,

I got basically the same diagnosis from my new GYN at UCLA, and I think

it's accurate. I'm 100 percent better after three weeks. I keep

waiting for the burning to come back, but it hasn't.

Joanne

[Guest guest]

Hi a,

I got basically the same diagnosis from my new GYN at UCLA, and I think

it's accurate. I'm 100 percent better after three weeks. I keep

waiting for the burning to come back, but it hasn't.

Joanne

[Guest guest]

Hi a,

I got basically the same diagnosis from my new GYN at UCLA, and I think

it's accurate. I'm 100 percent better after three weeks. I keep

waiting for the burning to come back, but it hasn't.

Joanne