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Report post · February 1, 2000

> 1. What solutions have you found to alleviate the pain during intercourse

(other than KY creme)

>

> Regards,

> Frederikke

>

I wish you didn't have to be here, but I know these ladies will provide a

lot of info.

Your doctor can prescribe lidocaine (or xylocaine) gel or liquid which you

can use 15 minutes or so before intercourse to numb the area that causes you

the pain. Works for me, although the intercourse itself leaves me sore

later.

-Kitty

Report post · February 1, 2000

> From: rbbb@...

>

> 1. What solutions have you found to alleviate the pain during

intercourse (other than KY creme)

You could try teething gel. It works for some of us. Mix it with

something else like vaseline.

> 3. My period seems to be almost dissapearing (only 1-2 days now and

very weak). Anybody else who has had this experience?

You might want to have your thyroid checked. That happened to me when I

was 29 and I started taking thyroid meds and it went away.

Ora

Report post · February 3, 2000

What happens if it goes up front to the more 'sensitive areas'

Allan.

You would go numb! but it is a jel, and fairly easy to keep localized in the

vestibule area (where I have the most pain) I use the 2% which helps some,

without getting rid of all the pain. Some ladies have been prescribed a 4%

liquid which is applied using a cotton ball, and they report that it stops all

the pain during. Later however.....we all pay for it.

-Kitty

Report post · May 5, 2000

Hi Martha,

I hope that you don't mind my e-mailing you privately. One suggestion that I

would like to make is to also have her dr give her a prescription for xylocaine

5% ointment. This ointment is a topical anesthetic. I use it a lot in addition

to the days when I also need to take a pain pill. For my really bad days I use

Darvocet. I do hope that the Tylenol 3 is of help to her.

Also check out the website for the Vulvar Pain Foundation. The link for it is:

http://www.vulvarpainfoundation.org and the link for the National Vulvodynia

Association. The link is:

http://www.nva.org

Some ladies are trying a specialized diet called the low oxalate diet. I have a

website that pertains to the foods that are high, medium, and low in oxalate.

If you would like it or some of the other links that I have bookmarked please

let me know and I will be glad to give them to you.

I was diagnosed with vulvodynia back in Sept of last year. When I told my prior

dr about the pains that I was having he didn't take me seriously and told me

that I probably just had a tender cervix, but I knew better.

I wrote an article for a Women's Health site about what it has been like for me

to live with both vulvodynia and endometriosis. I will also be glad to share

that link with you if you wish.

If you just need to have a private chat please feel free to drop me a line.

Please take care, and tell your daughter that she will be in my thoughts and

that I hope that she gets to feeling better soon.

Kristy

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Report post · May 5, 2000

Thank you Kristy!

Mara does have email at school. She still thinks this will all end when

her period ends in a day or so. The doctor she has seems very well versed

on Vulvodynia. The doctor has called her at home three times this week and

last night prescribed some kind of premarin cream I think.

You can email her at mlohrstorfer@...

I will forward this email to her. I dont' think either of us mind a

private email, and your links sound wonderful. Please do send them to us.

Thank you for all your concern.

MarthaL

Report post · June 9, 2000

Vicki,

Welcome. I have Lichen Sclerosis too. I did not have any bladder

infections that were related to my condition, lots of yeast infections

though. I just got diagnosed about 4-5 weeks ago. I am on the testosterone

gel, naturally compounded. Have seen great improvement but still have 1

problem area. I take calcium citrate, the no wheat or dairy kind, it seems

to help. My urine is not as acidic which helps the skin. There are

different theories as to what causes LS, the most common thought is yeast, I

think this is true for me. Dee from this group has had it really bad, she

is on vacation or I'm sure she would give her input. Right now she is in

remission. She uses the testosterone cream and Estrace cream (hormone

creams). She does not feel hers is yeast related. You should read the

archives of this group, Dee was and still is a great help to me not only

with my diagnosis, but I knew what to ask for to get treated. My pharmacist

said that if you are lacking in certain hormone levels, these creams really

do help, and most of the time without the harsh side effects. My hormone

levels all tested fine, but do they test for over producing or low level? I

don't really know. I just know the testosterone gel is helping for me.

That means this condition (LS) could also be hormone related. The

testosterone cream strengthens the skin and rebuilds it, so does the

Estrace. Are you using anything now? You need to work with your doctor to

see what is right for you. Gather all the facts you can, present your

doctor with the treatment options you think are best for you. This group

can really help you with that. There is hope, Dee is in remission. I'll

wait for your reply.

In Cleve.

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Report post · June 29, 2000

Welcome ,

I am so sorry to hear that you were diagnosed with vestibulitis, but I'm glad

that you managed to find us. We all have been where you are now, as for

being newly diagnosed. You probably wonder why women never heard of these

diseases before now, right?

It seems to be the best kept secret from women and the medical education on

this for doctors is almost nonexisistance. This will be changing soon,

hopefully. You were very fortunate to have a doctor knowledgeable on this.

I understand you are looking for a second opinion, that is a good idea.

Where do you live, maybe someone in the group living near your area could

refer another doctor knowledgeable in this?

There is hope in all this, but a second opinion is always best when a doctor

suggest surgery. You are not alone, we are here to help each other.

Did your doctor give you any information to read for helping you understand

your medical problem? Did your doctor give you anything for pain?

Everyone is different when it comes to treatment and treatments may not work

the same for each person. I am courious to know if he is doing anything to

help with the pain while you get a second opinion?

Please feel free to write and ask all the questions you have. Main thing is,

don't be afraid that there is no one who understands what you are going

through, we do!

Terry

Report post · June 30, 2000

Hi , my name is and I am twenty seven

and was diagnosed with vestibulitis just this week.

Two years ago I was diagnosed with Lichensclerosis but

all the meds for that just made me worse. When I

visited this new doctor he told me there was no signs

of LS but I did have VV. This he said explained why

the meds(estrace and steroids)made it worse. He did

talk about surgery but only as a very last resort and

said that only about 4-6% of patients get to that

point. He has told me not to put anything at all on,

but to use a squirt bottle after urination, charmin

free toilet paper, nutragena soap, dreft laundry

detergent and I am now taking calcium citrate. He did

give me a very low dosage tricyclic(?) antidepressent

for the pain he said is mainly due to nerve damage.

In six months I will have to start physical therapy

for my pelvic muscles. He says it is a long road but

that I will feel better. Where are you located? You

can email me separately if you wish at

skellyp@.... Hang in there and get another

opinion!!!

--- Allston wrote:

>

> hello everyone, my name is and i have never

> been involved in any sort

> of chat group or email group, so please excuse my

> nervousness!

> I am very excited at the prospect of hearing from

> others with vestibulitis

> (as well as other vulvar disorders), as i am newly

> diagnosed and very

> confused and nervous, especially since I know no one

> who can relate to my

> problem. I am feeling at my wits end and would love

> to hear any encouraging

> words... can it get better?

>

> To give you all some background, I am 26 years old

> and failing miserably at

> my attempts to have a normal sex life with my

> partner of two years because

> of this escalating problem. My partner is my first,

> so i thought the pain

> was normal. Then I went on birthcontrol and

> struggled for many months

> trying to find a pill that would not affect my sex

> drive. (I thought

> vaginal dryness was causing the pain.) Then, when

> it still didn't get

> better, I thought my boyfriend was just too big for

> me.... but as the pain

> increased, i finally sought medical advice. My MD

> diagnosed me with

> vestibulitis and has given me creams but is

> recommending surgery and I am

> SCARED. I haven't been able to track down a doctor

> with any experience in

> the area to give me a second opinion.

>

> I suppose I am looking to know I am not alone, and

> would love to hear of

> anyones personal experiences with treatments....

> I look forward to hearing from you!

>

> sincerely,

> katie

>

__________________________________________________

Report post · July 5, 2000

Hi. I just subscribed to this list and received my first posts today. I

know I am rushing it but I am sure you all understand the urgency.

I have had Interstitial Cystitis for 17 years, Fibromylgia and Celiac for 13

years and am not at all sure of how long I have had Vulvodynia. I went to

Dr. Whitmore in Philly for the IC a few years ago and she diagnosed me with

Vulvodynia. Not really sure how long I had it because I thought it was the

bladder that was causing so much pain.

I have an appt on Monday with my GYN. I am going to talk to him about

having an internal pump put in. I live on 3 percocets and day right now and

work full time.

I am doing hypnosis right now but it has only been 3 weeks so I am not

getting much relief from it.

Questions

Are there any articles you can point me to that tell what is the best

medication or cream for vulvodynia?

Any info on pain pumps?

Anyone notice any cuts from vulvodynia?

Do you have a homepage with info? I signed up for digest email and wonder

if I am missing something.

Thanks.

Fellow sufferer

Report post · July 5, 2000

Hi. I just subscribed to this list and received my first posts today. I

know I am rushing it but I am sure you all understand the urgency.

I have had Interstitial Cystitis for 17 years, Fibromylgia and Celiac for 13

years and am not at all sure of how long I have had Vulvodynia. I went to

Dr. Whitmore in Philly for the IC a few years ago and she diagnosed me with

Vulvodynia. Not really sure how long I had it because I thought it was the

bladder that was causing so much pain.

I have an appt on Monday with my GYN. I am going to talk to him about

having an internal pump put in. I live on 3 percocets and day right now and

work full time.

I am doing hypnosis right now but it has only been 3 weeks so I am not

getting much relief from it.

Questions

Are there any articles you can point me to that tell what is the best

medication or cream for vulvodynia?

Any info on pain pumps?

Anyone notice any cuts from vulvodynia?

Do you have a homepage with info? I signed up for digest email and wonder

if I am missing something.

Thanks.

Fellow sufferer

Report post · July 6, 2000

Hi Ginny

I'd suggest going to the home pages of EGroups, enter with your password and

clink on our group... Go to the archives you can check out the messages

posted there by the month and read what might interest you. I'm sure there's

loads of info that can get you started. Take care and welcome to our

'family' sorry you have to be here, but glad you found us. Warmest, Dee~

Report post · July 6, 2000

Welcome Ginny,

I can relate to the IC and the Vulvodynia. I was diagnosed first with the

vv, but was having trouble with my bladder which I thought was caused by my

vv. I recently found out that I have IC and started medication and treatment

for a dysfunctional pelvic floor. To tell you the truth, I don't know myself

for certain which was first. I am leaning towards that the IC was there

before my vv, I am on a scale of 6 on my IC, which means I went undiagnosed

for years to have so much damage to my bladder. My Urologist put me on

medication and had me start with a PT that specializes on IC patients. I

have been in less pain with my vv since starting PT. I was amazed that my

pain is light compared to the way I felt for years.

One of the common problems women have with IC is Vulvodynia. I will send you

a web site to look up and read. The site explains how the vv pain and IC are

common.

http://www.obgyn.net/avtranscripts/carter_butrick.htm

This site has been very informative for me since I never heard of Vulvodynia

and IC before January of this year. The one thing I asked my doctor for was

Lidocaine to put topically on the outside of my vagina when I am feeling

discomfort. This helps a lot, because it gives you a break from pain. He

wrote a prescrition and had a compound pharmacist make the strength to 10%,

which is much better than 2% that is normally prescribed.

I know that you are in great pain, but my GYN was no help to me with vv, but

my urologist has bended over backwards to keep me as pain free as possible.

Hopefully your GYN will know more about vv than my GYN, she didn't have a

clue.

I wish you the best of luck, take good care of yourself.

Terry

Report post · July 6, 2000