Re: Welcome to VulvarDisorders@onelist.com

[Guest guest]

Hello to everyone on the list!

I am a new member with this new *special* little problem we all share.

My new gyn pointed my in the vulvar vistibulitis direction after hearing

of my chronic symptoms which have been with me for years: pain when

using tampons, itching using certain menstrual pads, painful intercourse

(mostly from tiny tears at the vestibule), painful pelvic exams,

redness, achiness, etc. The situation became chronic about three years

ago, with maybe 4 days lapses in between where I feel *normal*. I'm

somewhat relieved to know that I am not alone and there is actually a

real medical syndrome that can attest to these symptoms. But I want to

say how SORRY I am for everyone who is going through this. I truly

empathize and hope for all of us that there is an answer for each of our

specific complaints.

I am grateful for all of this information about treating this, but at

the same time I find it a bit overwhelming. I haven't tried any

treatments yet, other than an Aveeno bath which maybe made me a little

itchy of all things! My gyn told me to try an over the counter yeast if

that didn't work, we would then try a steroid cream. But from what I've

been reading, these treatments, especially the steroid creme, could make

things worse. Does anyone have an opnion about using yeast cremes? My

doctor claims that if any of these treatments made things worse, I could

be brought back to my original state. But I don' really buy that. Does

anyone know of a relatively *safe* way to start out treating this. I

don't think I show signs of any yeast infection, but maybe it's at a

low level and I can't tell. I think it would be best to have her TEST

me first for the presence of it before assuming that it may be a

causation. I guess what I'm saying is I'm afraid of becoming a guinea

pig...involved in some kind of medical crap shoot. Does anyone know of

a reputable expert in the Los Angeles area? Has anyone had experience

using the tricyclic antidepressents?

I would appreciate any input.

Thanks,

Alisa

[Guest guest]

Dear all,

My name is Lucy and I live in Richmond, Virginia. Heidi said to take a

minute to introduce myself and tell my story. So skip over this if you get

bored and if I help someone, I am happy. I was diagnosed with vulvodynia

about 2 months ago. I have suffered on and off for 4 years but never knew

what it was. I went the usual route - seeing a variety of doctors until the

last ob-gyn said this may be what it is. I am definitely not in as much pain

nor have I suffered as much as some people but pain is pain.

I have constant burning, itching, and some pain " down there. " It seems to go

away when I get my period. I am on 10 mg of amitriptyline a day, calcium

citrate and I follow a low oxalte diet (as much as I can). My symptoms are

much less then when all this started. As for now, I don't know what is

working and what is not. I have tried a variety of creams and other

medicines. This combination now seems to offer the least amount of pain.

I have joined the vulvodynia pain foundation and the other one - can't

remember the name. I have done a lot of online research. By far the best

information and support I have is from the old vulvodynia list and web pages

like Heidi's and others. We are our own best support system.

Health and happiness,

Lucy

Lberndt@...

[Guest guest]

Heidi...thanks to Carla I found this list. I also subscribed to the

VulvarPainForum list, after the vulvodynialist was closed, but was told Dr.

" lurks " in there, which I'm not comfortable with at this time. My name

is Diane. I have had burning, rawness, some itching, and painful intercourse

for the past 4 years. It started with a yeast infection, which was treated,

but several months later the symptoms came back. I returned to my doctor, and

once again, was treated for a yeast infection, although I was told it was

" slight " . During a regular yearly exam, I told my doctor, I was still

experiencing burning, itching, etc., and once again was treated for yeast. I

was told if the symptoms did not go away, he would preform a vulvar biospy to

see exactly what was going on. I haven't been back since. I used otc yeast

preparations at different times, but for the past year have only been using

hydrocortisone, which helps the itching & burning, but not the painful

intercourse...which lately has become almost impossible. I stumbled across

information about this condition while browsing through different health

sites, and believe I have some form of VV, or a yeast problem. Are they

related? I'm returning to my doctor on 11/5, and plan to share with him what

I've learned from other women on the list. It helps to know other women

understand what I've been going through, so I'm grateful for this list. Thank

you for all the helpful information. Diane

[Guest guest]

Heidi,

Thank you for taking the initiative to start this list. I am very happy to

say that I have experienced much improvement from my vulvardynia. The

improvement came after giving birth for the first time and more improvement

came after my second child was born. I did have episiotomies with both. I

only have the pain a few times a year. Prior to having babies, the pain

occurred after sex. It was a burning pain affecting all of the skin around

my vagina and sometimes inside a little. Lying down and applying a cold

washcloth was the only thing that helped but only provided minimal relief.

The reason that I am interested in keeping up with this subject is that

while reading some of the guestbook entries a few things caught my

attention. I saw a few references to neuromuscular conditions and pelvic

floor abnormalities. Both of these conditions are present among my mother

and her 4 sisters. I really want to stay up to date with the research as

well as watch for more similarites. You never know how things are all

linked together.

There was one other item I wanted to mention. One of the guestbook entries

included a question regarding other women that may have had HPV and

vulvardynia. HPV is connected with genital warts. It would be interesting

to find out if there was a connection either with the history of warts or

the treatment of warts with TCA or podophyllin. I can see how repeated

treatments of such strong chemicals, acids could lead to tissue damage.

Let me know what you think.

Thanks,

Welcome to VulvarDisordersonelist

>Hello,

>

>Welcome to the list. I'm so sorry that you need to be here.

>

>Please take a moment to introduce yourself, describe what condition you are

>dealing with,

>what treatments you have tried (if any), and anything else you want to

bring up.

> Remember that

>your story may help someone else.

>

>Thanks,

>Heidi Walsh

>The List Owner

>

>

[Guest guest]

Heidi: First.let me say how much I admire you and all you have done and ARE

doing..but, I have said that many times.. Also, I note you have my email as

lhend and they tell me the proper one is LHend..but you know more about those

things than I do!!To introduce myself..with 57 years since all this began with

Interstitial Cystitis way back when they had NO idea what was so painfully

wrong wiht me and I heard, " it's all in your head " for over 44 years..until IC

was " discovered " . I was SO elated, thinking THAT meant I could be helped..and

I'd had some nightmare experiences trying to travel, work, live a normal sex

life and loads of other situations but it HAD been sort of tolerable off and

on and I'd had a child some years later..was more worried about the bladder

than I was the delivery! It was'nt until about 6-8 years ago that VV began

and much the same responses from docs and there were MANY and I am still

looking and still hurting. Also added now are Fibromyalgia, Irritable Bowel

Syndrome, Chronic fatigue and several unrelated problems like Asthma, Sinus

(have had 2 operations in the last 3 years and facing another), just had a

gallbladder surgery & have a problem from that, have had severe headaches for

60 years..used to live on Anacin until I developd an ulcer..now, it's Tylenol.

I am now 84 years old..don't LOOK it, everyone says..what little I get OUT..as

I am tall, slim, wellgroomed, and appreciate people's shock at my age but also

am a bit defensive as I can SEE it in their faces that they think I am a

sissie..complainer, or whatever and I never quite know how to react to their

remarks about how GOOD I look..can't seem to get the words out that I feel

FINE and then try to explain WHY I can't go & do things. My husband is going

blind & has had open heart surgery last year w/a valve replacement..yet, is MY

caretaker as I am completely ALONE, otherwise. Living with these kinds of

conditions is like being a puppet and wondering just WHO is pulling the

strings!! , When the bladder is on fire & I am running to the bathroom

constantly ( & can't socialzie at ALL..we have cancelled all that as well as

all else of normal life)..the vulva is on fire and nothing helps, I am

bloated and feeling like knives are in my " gut " , have a pounding headache, am

nauseous, and my body aching and hurting from the Fibro, I am literally

screaming..and there is NOWHERE to go. I have tried just about everything

I've seen mentioned on the last list these past 6 months, have been the rounds

of urologists, cystoscopes, dilations, distensions, instillations, cautery of

the urethra, and have seen at least a dozen GYNs, Internists, and many other

specialists, for the VV and all the rest, so have learned to live day by

day & lately can't even do THAT well as I can change within a few hours.

Fortunately, my husband is a VERY patient man!! I could go ON..could write

a book, but think that's more than enough!! My best wishes to all of you for

better health all around!!! LHend12826@... Lorane

[Guest guest]

I just read an email from mentioning having read a guest book. What is

THAT? LHend12826@... (with MY conglomeration of problems..don't

want to MISS anything!! (chuckle)

[Guest guest]

Hi,

Im , I've been dealing with vulvadynia for about 13 years. I went

into remission for about 9 years, and now it's back worse than before. I

have been a patient of Dr. Reid in Southfield, Michigan. I have my

glands removed and seem to be worse than before. Now I not only experience

pain during intercourse, but have very litte lubrication.

I am not currently seeing a doctor. I have given up, but Im starting to

come around again!

Hope to hear from some of you soon!

Welcome to VulvarDisordersonelist

>Hello,

>

>Welcome to the list. I'm so sorry that you need to be here.

>

>Please take a moment to introduce yourself, describe what condition you are

>dealing with,

>what treatments you have tried (if any), and anything else you want to

bring up.

> Remember that

>your story may help someone else.

>

>Thanks,

>Heidi Walsh

>The List Owner

>

>

[Guest guest]

,

I know that it is hard please try to keep faith. I just joined this listserv

and already it has

made a tremendous difference. What " cured " you the first time and how long did

it take?

On Wed, 4 Nov 1998 19:19:24 -0800 CPA@... ( L.

Mitrak) wrote:

>

>

>Hi,

>

>Im , I've been dealing with vulvadynia for about 13 years. I went

>into remission for about 9 years, and now it's back worse than before. I

>have been a patient of Dr. Reid in Southfield, Michigan. I have my

>glands removed and seem to be worse than before. Now I not only experience

>pain during intercourse, but have very litte lubrication.

>

>I am not currently seeing a doctor. I have given up, but Im starting to

>come around again!

>

>Hope to hear from some of you soon!

>

>

> Welcome to VulvarDisordersonelist

>

>

>>Hello,

>>

>>Welcome to the list. I'm so sorry that you need to be here.

>>

>>Please take a moment to introduce yourself, describe what condition you are

>>dealing with,

>>what treatments you have tried (if any), and anything else you want to

>bring up.

>> Remember that

>>your story may help someone else.

>>

>>Thanks,

>>Heidi Walsh

>>The List Owner

>>

>>

>

>

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

>

[Guest guest]

I tried fo email you last night but regardss to another letter, I think. My

reply was lengthy.. & it came back..which seems to hapen to me quite a bit soam

send this via the net.

Am sosorry you are having so much trouble but, you are among " friends " > At

least, we can vent without feeling like complainers!

I have been taking citracal or calc citrate for 2 yrs or so. Sometimes, I

hink it helps & then, it flares..I also take Glucosamine but just ran out.

have been trying to find NAG (N Acetyl Glucosomine) which Dr. 's in

Colo. uses with his routine on the oxylate theory. I watch this list

carefully & try about everything that is suggested so long as I don't think it

will hurt me as I AM sensitive to a lotof things and have had a lot of bad

experiences with medicines. I tried Tree Tea Oil..a tiny bit in a bathtub

along w;sea salt..didn't help & I am stuck with 2 bottle of the stuff. I was

given a burn ointment mixed w/cortisone by a GYN about 4 yrs orso ago which is

cooling when it is VERY bad. Also try praying the area w/plain water with an

ear syringe after urination to wash the acidy urine off the painful part. I

have Vulvadynia..NOT POC as I am 84 yrs old andit has beenphyscially

impossible for me to have sex for 8 yrs or more, due toIC, this VV and more.

I have heard of Astro Glide (obtainable indrug stores, they say,) which is

cooling. Drinking copious amounts of water seems important and IS for any

reason, of course. I don't drink enough altho we had PURE water tanks

installed so not even our showers have Chlorine in the water..just so I would

DRINK more as our Omaha water is NOT tasty..to me, anyway. I try to avid

acidy foods like orange juucie, cranberry juice, chocolate, etc. alkthoI am a

chocoholic and that part IS hard. I go nuts with VV or IC or some of the

other syndrome things seemingly cnnected with all this and can FEEL the

burning increasing within a few minutes!! Yet, I have SO much stress in my

life..bad insomnia and more that not being stressed out is nie onto

impossible..the cousnelor says I have to quite THINKING!! I'm running scaredd

these past few mos so ma on Xanax l/21 2or 3 xxs a day which i don't LIKE

but have given in to it from time to time when I am eeling unglued. Hope

something here might help and wish you the best. Warmly LHend12826@...

[Guest guest]

Hi

I don't know what cured me the first time. It was so long ago and I was

real young and didn't understand what was going on. My doctor, Reid

in Southfield, Michigan, gave me something, a lotion, and I put it on that

area, and it went away.

When my problems returned, he said they were much worse than the first time,

and that the same lotion would not work on me now. He then removed my

glands, but I still suffer.

Welcome to VulvarDisordersonelist

>>

>>

>>>Hello,

>>>

>>>Welcome to the list. I'm so sorry that you need to be here.

>>>

>>>Please take a moment to introduce yourself, describe what condition you

are

>>>dealing with,

>>>what treatments you have tried (if any), and anything else you want to

>>bring up.

>>> Remember that

>>>your story may help someone else.

>>>

>>>Thanks,

>>>Heidi Walsh

>>>The List Owner

>>>

>>>

>>

>>

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

>>

[Guest guest]

Hello,

I am writing to introduce myself. I am a registered nurse and I specialize in

ob/gyn. I also suffer from vestibulitis and chronic pelvic pain. I have been

unable to work since August due to the pain. My symptoms include severe

perineal burning that feels like razor blades,stabbing lower abdominal pain

and low back pain. On December 15, I will undergo a diagnostic laparoscopy and

a vestibulectomy. I would love to here from anyone who has had this surgery.

In my 5 years practicing as a nurse, I have not had a patient who has had this

surgery. So I am very unfamilier with the type of pain that is involved. Any

information is helpful.

Thanks,

Beckie

[Guest guest]

Hello,

My name is ann and I'm 21 years old. After two years of painful

sex and constant irritation, I finally figured out that I have

vulvodynia/vulvar vestibulitis. It has been an uphill battle and I

recently went to the Mayo clinic up in Minnesota to see if there was

any relief. IT seems that I knew more about vulvar disorders then

they did! So now I know I have to take matters into my own hands.

I'm so glad to have this system to update me on some of the things

that are happening with stories, research, etc. But I still have so

many questions! You'll be hearing a lot from me because I'm still

just beginning to understand some of the things that have been going

on with me! I have a wonderful support system here at home, but it

will be easier with people who know what I'm going through! Thank you

all!

[Guest guest]

Hey folks,

I am having a hard time making some major decisions. There is a

possibility that I have microscopic endometriosis, which could potentially

be worsened if I use estrogen cream. I am nineteen. I don't understand

fully the connection between the hormone levels that aleady exist in my

body and vv. If I get a hormone levels test run, what should I look for?

Also, I was told by my doctor that they can only test me for calcium

oxalate levels, not magnesium or any of the other oxalates. Has anyone had

these tests run (through the pain project or otherwise) and can you please

tell me about them? also, is all tea high in oxalates, or just certain

kinds? Thanks,

[Guest guest]

Hello! I'm a 26 year old law student in Vancouver, B.C. I have had

vestibulitis

for about 5 years now, and have tried a few different options. I have used

cortisone ointment topically (no results), I have had laser surgery (also no

results), and I have been on amytriptyline for about 6 months now (at 150 mg for

2

months). I have had no results with it, and am really getting tired of the side

effects (constipation, dizziness, weight gain (? - or am I just using it as an

excuse?!), and dry mouth.

My gynecologist has suggested that I try biofeedback, which I think I get for

free

as I am covered by the Canadian medical system.

My question for anyone and everyone is this: does anyone else experience a

sharp

pain associated only with arousal, and without any physical contact with the

area at

all? I haven't been able to find any information anywhere about this, and my

gyn is

mystified.

Happy New Year to everyone,

[Guest guest]

,

Sometimes I get a sharp stabbing pain. My doctor said that when your muscles

tighten up and go into spasm you can get this pain. I believe this to be true.

I have problems with chronic pelvic pain and sometimes I get stabbing pains in

my low abdomen that shoots down through my vagina. If I use heat it will

loosen the muscles up and stop the shooting pains. I hope this helps.

Beckie

[Guest guest]

Dear Heidi.

How do you post to this list?

[Guest guest]

Dear Heidi.

How do you post to this list?

[Guest guest]

Hello!

My name is and I found out about this onelist thing from obgyn.net. I

am 27 years old and I suffer from Vulvar Vestibulitis. I've suffered from it

since the birth of my daughter, who is now 2 years old. I had problems after

the birth with my episiotomy incision and I haven't been the same since. I've

had a portion of the affected area removed and there was significant

improvement, but I still have problems. At least there is more and more

information available via the internet.

Glad to know that there are people to talk to!

[Guest guest]

Hello!

My name is and I found out about this onelist thing from obgyn.net. I

am 27 years old and I suffer from Vulvar Vestibulitis. I've suffered from it

since the birth of my daughter, who is now 2 years old. I had problems after

the birth with my episiotomy incision and I haven't been the same since. I've

had a portion of the affected area removed and there was significant

improvement, but I still have problems. At least there is more and more

information available via the internet.

Glad to know that there are people to talk to!

[Guest guest]

Hello Ladies,

I am new to the list, but unfortunately not to the vulvar pain. I

believe I have vulvodynia, never confirmed by my physician, as I had to

enlighten him after finding out what I had by researching on the web.

Thank god for the inter-net. I have been living with this terrible

condition for 3 years but after reading many of your stories, find

myself considerably fortunate that I can have sex and only get the

burning 1 or 2 days after. I was on a low dosage of amitriptyline (10

mg nightly) for about 3 months and made the mistake of thinking I was

rid of this for good and symptom free! Wrong, I quit taking the

anti-depressant and had the worst flare up about 3 weeks ago. Glad I

found Heidi's site which was very informative and encouraging. I can

really relate to all or you and what you are going through both

physically and emotionally. Heidi, so sorry to hear about the immense

amount of pain you went through and I really hope you are doing better.

My question to any of you, is if any of you live in Canada and have a

doctor, gyno, naturopath, or physician who has been treating you for

vulvodynia? I live in Calgary, Alberta (home of the 1988 olympics)but

as I work for an airline, I could travel anywhere in Canada for help. I

am staying on the ampitripyline, but would sure be open to bio-feedback,

acupuncture, or homeopathic medicine if it will help me try and live a

" normal " life. If anyone knows a physcian in Canada, I would really

appreciate any referral you can offer. Thanks ladies, and thanks for

all your stories which are very informative and inspirational. I really

do believe a cure will be found that will help all of us.

Jane

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.**

[Guest guest]

Hi Alyssa and welcome to the list.

I was wondering if your gyno tested you for yeast either by doing a wet

mount smear or a culture. My doctor has said the reason we have

resistant yeast out there is because women are not properly diagnosed

with yeast and when they think they have yeast they use an over the

counter prepartion and the the yeast your normally have in your body

become resistant the next time you Really do have a yeast infection the

over the counter stuff doesn't work anymore. You really should be tested

first.

I have been diagnosedwith a chronic yeast infection. I was on diflucan

2x a week for 4 weeks and now am on it once a week for 12 weeks. So far

I am feeling pretty good.

Hope this helps.

Your friend,

Michele D

[Guest guest]

Alisa:

I'm in the LA area and know of several gynos to avoid. However, I haven't

found any good ones. Someone on here goes to UCLA and is very pleased, but I

don't live in that area. If you want to e-mail me, we can exchange doc info.

Lainey9911@... Lainey

[Guest guest]

Hi all,

I just joined this list with the hopes of finding people who understand

what painful sex is and VVS. It is so difficult. Anyway....

A bit about myself: I am 23 and have been married about 4 years, with no

children yet (maybe in the next year or so). I have always had painful sex

and couldn't figure out why people were so addicted to it, personnally it

wasn't that great. Now I know. Although I haven't been diagnosed (my pap

is in May and I will bring it up to the Gyn) I do understand what it is

like. All the symptoms that I have heard everyone explain are me totally.

In fact, my husband ( who is the most understanding man in the world), saw

a show on T.V. called BodyHuman 2000. He said Honey look at this, this is

what you deal with. As I looked this up on the 'net I realized there is no

cure and that most of the treatments tried don't even work. Then I got

emotional. The fact that I will probably never enjoy " normal " sex is very

upsetting. Well before I write a novel I better end this and just say

thanks to everyone listening and that I look forward to the support that I

will be able to get and give.

Carley

At 03:37 AM 4/18/99 -0000, you 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.**

>

>

>

[Guest guest]

Hi ,

Considering your age I think you should take estrogen cream. I would make an

appointment with my doctor ASAP. It is very important to not get deep into

the pain cycle. I did not act quickly enough and was irritated by many of

the drugs and have been in severe pain for 18 months. The longer you are in

pain the tighter your muscles get and the longer it takes to correct the

problem. Don't let some receptionist have the power to determine that your

burning is not important and can wait a few months.

Women, especially those near menopause, have had good results with the cream.

Don't get too discouraged by what you may read here. So many of us have

horror stories, but many others I'm sure have found relief and moved on and

away from this wonderful support group.

Good luck,

Warmly

Sandi

[Guest guest]

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