Introduction

[Guest guest]

Hi,

Be careful with the steroids, don't use them for more than 6 wks.

Yes, we have to go through a lot of crap to find someone that knows

what they're doing. I had 2 perinioplasties and I think this one

will work some, but will probably have another surgery (dif doc) this

summer.

Love,

Ruth

> Hello girls,

> My name is Melinda, 22 yrs old,newly wed,married last March, from

Texas.

> I am hoping to find out some treatment for the vulvar burning I

have been

> having. I was given this group from the lady that started

GYNGALS,which is

> a similar group for any gyn problem, primarily vulvar cancer is the

focus.

> My burning in the vulva/vagina started in Oct 2000, at which time

my dr

> thought it was a yeast infection, so I was treated with diflucan

and then

> the cream none of which worked. Then they thougth it was BV-

bacteria

> vaginosis, gave me metrogel, didn't work, then an oral pill, still

didn't

> work. My dr didn't know what else to do so referred me to a

specialist 3 hrs

> away. At that time it was hard to go 3 hrs to see a Dr, so I went

for a

> second oppinion, which didn't help either. This Dr insisted it was

BV, and

> gave me Metrogel and told me to use it for longer period of time,

still not

> better. This dr did find a wart at the tip of my urethra. I treated

it with

> Aldara and it went away, but the burning was still there.

> BTW-didn't mention that the burning is pretty much every day, some

days more

> painful than others, uncomfortable to wear a tampon, haven't worn

one since

> all this mess started.

> I finally went back to my original Dr and decided to go to the

specialist he

> referred me to . What a joke. This guy insisted it was some rare

yeast and

> when none showed up 2wks later, said they would allow more time to

grow and

> none was ever found. SO he told my Dr to have me douche with baking

soda, if

> that didn't work, which it didn't use Cleocin,vaginal suppositories

for 2

> wks, which I just finished doing and it didn't help either. Next

step is

> some steroid cream, I need to call Dr back to get it.

> In the meantime after seeing the specialist in July, I saw these

weird

> bumps, which I pointed out to him and he said they weren't

anything. WRONG!

> I showed my Dr and he did a biopsy and it came back moderate to

severe

> dyslpasia. I was scared! I had to have a partial vulvectomy 2 wks

later, in

> Sept '01. My dr could not believe it either, he said they just

looked like

> warts. My dr thougth they could have been causing the pain, but it

didn't

> get better after the surgery like I had hoped.

> Anyways, sorry to get so in depth.

> Hopefully someone here can help me as my Dr doesn't know what else

to do. He

> mentioned it could be vestibulius, but is sounds more like

Vulvodynia since

> the pain is all the time rather than when touched or during sex.

> Please let me know of any suggestion.

> thanks,

> Melinda

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

[Guest guest]

on 01/13/2002 2:01 PM, Tracie Christianson at Mother2Clouds@... wrote:

Tracie Hi my name is Robbie and I have a 14 yo keto girl . We also are seen at Gillette. In fact we were in the clinic on Jan. 15th. This list will be very helpful. Robbie

Hello ! I am new to the group s well as new to the Ketogenic Diet ! Allow me to introduce us to you first.

My name is Tracie and my son's name is Saje (sounds like Sage). We call him Saje-Man. He deserves the title considering all he has been through in the 3 years of his sweet little life!

We are just 6 days into the diet. We came home on Friday after spending five days at Gillette Children's Hospital in St. , MN.

I do and will have many questions for the group in the days to come. I am grateful that there are other parents to talk to and lean on for support when needed.

You will be hearing from me again very soon. Have a great day !

Tracie ~

Saje Cloud's Mom

[Guest guest]

Robin : what a great story!!! And they say the first weeks are the

hardest!!!! Congratulations to you and Dakota!!! I hope things continue for

you!

- mom to Brittany

[Guest guest]

Robin,

That's a wonderful story! Are you still using any anti-seizure medications?

Bill

> wrote:

>

> Hi! My name is Robin and I have a three (almost 4) year

> old, named Dakota, that had a grand mal seizure the last weekend of

> September, 2001. She only had one, and was placed on Tegretol. That

> was it (we thought) until the Sunday morning of Thanksgiving weekend

> when she had another. Dr. upped the Tegretol. The following Tuesday

> night, she began to have 15 or 20 second periods of shaking about 45

> seconds apart. Off to the hospital -- prescribed clonipen (diff.

> dr.). These became very frequent. We were admitted to the hospital

> for a 24 hr. EEG, showing tons more activity than we had seen in

> October. We then tried Dilantin, but were allergic. tried 5 other

> meds, but only had worse seizures. Went back into the hospital after

> having 2 grand mal seizures 3 hours apart. tried keppra -- 1250 mgs--

> didn't work. tried Trileptal -- controlled the grand mals, but not

> the absence or drop attacks. 3 weeks ago we were having 50 to 100

> drop attacks and absence seizures a day. We were admitted (again) to

> the hospital to begin the diet on January 28. We came home on the

> 30th. Her seizures got horribly worse. Sunday (Feb. 3) she could

> hardly do anything due to absence after absence or drop after drop.

> Monday afternoon, I realized that she had not had a drop in about 20

> minutes. By 6:00 that evening, she had ceased having absence

> seizures. We have only been on the diet for a week and 3 days, but we

> are seizure free. I can only look at her as a miracle.

> We are a busy group -- Dakota is my middle child. I have a 5 yr. old

> named Cheyenne and a 6 month old named Shasta. I used to be an

> English teacher and then a librarian, but now I am a mom and wife. I

> look forward to your support through this group and hope that I can

> contribute in some small way.

>

> Robin

>

>

[Guest guest]

Hello Robin,

Your story sounds just like my sydney. We tried all the drugs too. Her seizures just kept getting worse. She was having all types of seizures . The doctor said her EEG showed con convulsing status. The visual seizures were about every 2 minutes. She has no delays and is doing great on the diet. She had 54 seizures the day before the diet and the day we started the diet the seizures stopped. She hasn't had any since October. I thank God daily for her recovery. The diet is hard though. She hates the fat and cries herself to sleep some nights. We are still thankful to have found this diet. I cant imagine what would have happened to her. I was also a teacher and quite my job. I don't mind though. I have always wanted to stay home with the kids. E mail me privately and Ill give you my phone number kate@... .

( Sydney's mom age 4, seizure free and med free)

introduction

Hi! My name is Robin and I have a three (almost 4) year old, named Dakota, that had a grand mal seizure the last weekend of September, 2001. She only had one, and was placed on Tegretol. That was it (we thought) until the Sunday morning of Thanksgiving weekend when she had another. Dr. upped the Tegretol. The following Tuesday night, she began to have 15 or 20 second periods of shaking about 45 seconds apart. Off to the hospital -- prescribed clonipen (diff. dr.). These became very frequent. We were admitted to the hospital for a 24 hr. EEG, showing tons more activity than we had seen in October. We then tried Dilantin, but were allergic. tried 5 other meds, but only had worse seizures. Went back into the hospital after having 2 grand mal seizures 3 hours apart. tried keppra -- 1250 mgs-- didn't work. tried Trileptal -- controlled the grand mals, but not the absence or drop attacks. 3 weeks ago we were having 50 to 100 drop attacks and absence seizures a day. We were admitted (again) to the hospital to begin the diet on January 28. We came home on the 30th. Her seizures got horribly worse. Sunday (Feb. 3) she could hardly do anything due to absence after absence or drop after drop. Monday afternoon, I realized that she had not had a drop in about 20 minutes. By 6:00 that evening, she had ceased having absence seizures. We have only been on the diet for a week and 3 days, but we are seizure free. I can only look at her as a miracle.

We are a busy group -- Dakota is my middle child. I have a 5 yr. old named Cheyenne and a 6 month old named Shasta. I used to be an English teacher and then a librarian, but now I am a mom and wife. I look forward to your support through this group and hope that I can contribute in some small way.

Robin "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

This sounds like another wonderful example of what the

diet can do. My story to is just like yours. My son

Logan had a grand mal seizure on Sept 10, 2000. We

were told he would probably never have another one.

Two weeks later just before his 3rd birthday he had

another one. This time we were told that some kids

have two but may never have anymore. We put him on

tegretol. He continued to have seizures about once or

twice a month. Then he stopped having them for about

3 months at the beginning of 2001. In April, however

we started noticing him having the absence and drop

seizures once or twice a day, then on May 6th he had

another grand mal. Two days later we were in the

hospital with uncontrollable seizures. We were in and

out for over a month.(more in than out) We went

through all of the seizure meds, each having their own

side effects or problems. (there is only two AEDs he

has not been on) He was pretty much a drugged

vegetable over the summer. He was averaging 80 grand

mals per day and countless drop seizures in between.

Finally fed up with docs around here I took him to the

Mayo Clinic in Rochester, MN. They took away all but

two meds and initiated the Keto diet. His seizures

reduced significantly and he started being more like

himself. After a week in the hospital he was able to

walk without assistance and talk. He has now been on

the diet 7 months and has been seizure-free for almost

5. He is only on one med now and we are planning to

wean that in March. He tolerates the diet well. We

are lucky enough to be a little laxed in how we give

him foods.

He has no diagnosis as to the cause of his seizures.

He was a normal 2 year old and has been through 1 1/2

year of hell. He is now a well developing 4 year with

only slight delays in some areas.

And like you I am a teacher. I took off a year to

help him and if he continues to do well I will begin

teaching in the fall. Through all this however I did

change my certifcate area to Special Education.

Good luck and hope taht Dakota has continued success.

Take care,

Kalii

Mom to Logan Wyatt 4 (ketokid since 07/01,

seizure-free) and big brother Cody 8.

__________________________________________________

[Guest guest]

Hey Robin,

Welcome to the list. I must have missed your original post, but thanks

to Bill for attaching it to his post. So glad you joined us. And so

great to see the " seizure free " words!! This list is so great because

the members know so much about the diet. They also " understand " in a way

that family & friends can't. Once again, welcome to the list!

Kathy in Tennessee

's Mom

" For I know the plans I have for you, " declares the LORD, " plans to

prosper you and not to harm you, plans to give you hope and a future. "

29:11

On Fri, 08 Feb 2002 10:50:27 -0500 The Barbers

writes:

> Robin,

>

> That's a wonderful story! Are you still using any anti-seizure

> medications?

>

> Bill

>

> > wrote:

> >

> > Hi! My name is Robin and I have a three (almost 4) year

> > old, named Dakota, that had a grand mal seizure the last weekend

> of

> > September, 2001. She only had one, and was placed on Tegretol.

> That

> > was it (we thought) until the Sunday morning of Thanksgiving

> weekend

> > when she had another. Dr. upped the Tegretol. The following

> Tuesday

> > night, she began to have 15 or 20 second periods of shaking about

> 45

> > seconds apart. Off to the hospital -- prescribed clonipen (diff.

> > dr.). These became very frequent. We were admitted to the

> hospital

> > for a 24 hr. EEG, showing tons more activity than we had seen in

> > October. We then tried Dilantin, but were allergic. tried 5

> other

> > meds, but only had worse seizures. Went back into the hospital

> after

> > having 2 grand mal seizures 3 hours apart. tried keppra -- 1250

> mgs--

> > didn't work. tried Trileptal -- controlled the grand mals, but

> not

> > the absence or drop attacks. 3 weeks ago we were having 50 to 100

> > drop attacks and absence seizures a day. We were admitted (again)

> to

> > the hospital to begin the diet on January 28. We came home on the

> > 30th. Her seizures got horribly worse. Sunday (Feb. 3) she could

> > hardly do anything due to absence after absence or drop after

> drop.

> > Monday afternoon, I realized that she had not had a drop in about

> 20

> > minutes. By 6:00 that evening, she had ceased having absence

> > seizures. We have only been on the diet for a week and 3 days,

> but we

> > are seizure free. I can only look at her as a miracle.

> > We are a busy group -- Dakota is my middle child. I have a 5 yr.

> old

> > named Cheyenne and a 6 month old named Shasta. I used to be an

> > English teacher and then a librarian, but now I am a mom and

> wife. I

> > look forward to your support through this group and hope that I

> can

> > contribute in some small way.

> >

> > Robin

> >

> >

[Guest guest]

Way to Go!! Robin & Dakota. Welcome! It is so wonderful to hear that things are going well.

Diane

introduction

Hi! My name is Robin and I have a three (almost 4) year old, named Dakota, that had a grand mal seizure the last weekend of September, 2001. She only had one, and was placed on Tegretol. That was it (we thought) until the Sunday morning of Thanksgiving weekend when she had another. Dr. upped the Tegretol. The following Tuesday night, she began to have 15 or 20 second periods of shaking about 45 seconds apart. Off to the hospital -- prescribed clonipen (diff. dr.). These became very frequent. We were admitted to the hospital for a 24 hr. EEG, showing tons more activity than we had seen in October. We then tried Dilantin, but were allergic. tried 5 other meds, but only had worse seizures. Went back into the hospital after having 2 grand mal seizures 3 hours apart. tried keppra -- 1250 mgs-- didn't work. tried Trileptal -- controlled the grand mals, but not the absence or drop attacks. 3 weeks ago we were having 50 to 100 drop attacks and absence seizures a day. We were admitted (again) to the hospital to begin the diet on January 28. We came home on the 30th. Her seizures got horribly worse. Sunday (Feb. 3) she could hardly do anything due to absence after absence or drop after drop. Monday afternoon, I realized that she had not had a drop in about 20 minutes. By 6:00 that evening, she had ceased having absence seizures. We have only been on the diet for a week and 3 days, but we are seizure free. I can only look at her as a miracle.

We are a busy group -- Dakota is my middle child. I have a 5 yr. old named Cheyenne and a 6 month old named Shasta. I used to be an English teacher and then a librarian, but now I am a mom and wife. I look forward to your support through this group and hope that I can contribute in some small way.

Robin "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

[Guest guest]

Robin

That sounds a lot like my story with Tyler. He is now off the diet as of Dec 3 2001. We started out very simple with a grand mall a month went on Tegretol and we were seizure free for almost A YEAR. Then come Easter last year the drop seizures started 50-100 a day also. We were not introduced to the diet till May 21,2001 and with a mix of meds (Lamictol) and the diet we have been seizure free since 06/28/01@!!!! and so proud of it. We were the lucky few who were only on the diet six months but I think about it everyday. I also think of all the moms and dads and keto kids EVERY DAY! I will never forget and I would never not do the diet again if my situation needed it. I wish you the best of luck!

Thereasa and Tyler 4 seizure free 06/28/01

[Guest guest]

Robin and Dakota,

What great news! surely a miracle hey!best wishes to you,

Jeanette, mum to Leah 10 yrs in Australia

>

>Reply-To: ketogenic

>To: <ketogenic >

>Subject: introduction

>Date: Fri, 8 Feb 2002 10:19:46 -0500

>

>Hi! My name is Robin and I have a three (almost 4) year old,

>named Dakota, that had a grand mal seizure the last weekend of September,

>2001. She only had one, and was placed on Tegretol. That was it (we

>thought) until the Sunday morning of Thanksgiving weekend when she had

>another. Dr. upped the Tegretol. The following Tuesday night, she began

>to have 15 or 20 second periods of shaking about 45 seconds apart. Off to

>the hospital -- prescribed clonipen (diff. dr.). These became very

>frequent. We were admitted to the hospital for a 24 hr. EEG, showing tons

>more activity than we had seen in October. We then tried Dilantin, but

>were allergic. tried 5 other meds, but only had worse seizures. Went back

>into the hospital after having 2 grand mal seizures 3 hours apart. tried

>keppra -- 1250 mgs-- didn't work. tried Trileptal -- controlled the grand

>mals, but not the absence or drop attacks. 3 weeks ago we were having 50

>to 100 drop attacks and absence seizures a day. We were admitted (again)

>to the hospital to begin the diet on January 28. We came home on the 30th.

> Her seizures got horribly worse. Sunday (Feb. 3) she could hardly do

>anything due to absence after absence or drop after drop. Monday

>afternoon, I realized that she had not had a drop in about 20 minutes. By

>6:00 that evening, she had ceased having absence seizures. We have only

>been on the diet for a week and 3 days, but we are seizure free. I can

>only look at her as a miracle.

>We are a busy group -- Dakota is my middle child. I have a 5 yr. old named

>Cheyenne and a 6 month old named Shasta. I used to be an English teacher

>and then a librarian, but now I am a mom and wife. I look forward to your

>support through this group and hope that I can contribute in some small

>way.

>

>Robin

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hello Kali,

I am an Elementary teacher but now would be interested in going back in

Special Education. How did you find the time to go back to school and add on

to your degree with all the seizures and diet ? The nearest collage around

here is an hour and a half away.

Re: introduction

> This sounds like another wonderful example of what the

> diet can do. My story to is just like yours. My son

> Logan had a grand mal seizure on Sept 10, 2000. We

> were told he would probably never have another one.

> Two weeks later just before his 3rd birthday he had

> another one. This time we were told that some kids

> have two but may never have anymore. We put him on

> tegretol. He continued to have seizures about once or

> twice a month. Then he stopped having them for about

> 3 months at the beginning of 2001. In April, however

> we started noticing him having the absence and drop

> seizures once or twice a day, then on May 6th he had

> another grand mal. Two days later we were in the

> hospital with uncontrollable seizures. We were in and

> out for over a month.(more in than out) We went

> through all of the seizure meds, each having their own

> side effects or problems. (there is only two AEDs he

> has not been on) He was pretty much a drugged

> vegetable over the summer. He was averaging 80 grand

> mals per day and countless drop seizures in between.

> Finally fed up with docs around here I took him to the

> Mayo Clinic in Rochester, MN. They took away all but

> two meds and initiated the Keto diet. His seizures

> reduced significantly and he started being more like

> himself. After a week in the hospital he was able to

> walk without assistance and talk. He has now been on

> the diet 7 months and has been seizure-free for almost

> 5. He is only on one med now and we are planning to

> wean that in March. He tolerates the diet well. We

> are lucky enough to be a little laxed in how we give

> him foods.

> He has no diagnosis as to the cause of his seizures.

> He was a normal 2 year old and has been through 1 1/2

> year of hell. He is now a well developing 4 year with

> only slight delays in some areas.

> And like you I am a teacher. I took off a year to

> help him and if he continues to do well I will begin

> teaching in the fall. Through all this however I did

> change my certifcate area to Special Education.

>

> Good luck and hope taht Dakota has continued success.

>

> Take care,

> Kalii

> Mom to Logan Wyatt 4 (ketokid since 07/01,

> seizure-free) and big brother Cody 8.

>

> __________________________________________________

>

[Guest guest]

Welcome! We love success stories -- and we're pretty

good with the tough stories, too. This is a great

group -- you'll learn a lot. Glad to hear Macie Ann is

doing so very well!--DeEtte, Mom to (6), who's

been on the diet a little over year, med-free, and

seizures greatly reduced except when we're dealing

with viral issues or other quirky sensitivities!,

sdale, AZ (also Mom to -- 5 -- and one on

the way in July -- yikes!)

__________________________________________________

[Guest guest]

Hi ,

I just joined a couple of days ago too. I have been so pleased with

all the help and support I found here. I hope you can find a doc who

will listen to you. I was surprised mine would--his nurse said that

he would do hormone testing and probably would prescribe the cream I

asked for. (I called their office yesterday after reading all these

messages and told them we needed to go back over my treatment. He

originally only gave me a steroid cream and told me I'd be on it

forever!) Good luck to you.

Meg

PS----I tend to think I'd know my vagina better than they would too!!!

> Hi everyone. I just joined the groups a couple of days ago. I'm

> , 22. I have had " unspecified vulvar pain " ever since

puberty.

> I haven't found a doctor yet who will use the word vulvodynia and

many

> that freak out when I use it. I don't understand the reluctance to

give

> a name to my pain, especially one that is so obviously correct. I

am

> tired of it being discounted.

> Anyway, my journey to find relief started not long after I became

> sexually active and pain upon penetration continued long after the

first

> try at intercourse. Doctor #1 blew me off. Doctor #2 prescribed

> testosterone cream. When this only pumped up my libido and made the

> pain worse, I went back. He shrugged his shoulders and told me to

have

> children and that would surely make the pain go away. I never saw

him

> again. By this time, my boyfriend and I had quit even trying to

have

> sex. I had been on Alesse and the pain had gotten worse while I was

on

> it. Only recently was I able to go to doctor #3. He prescribed

topical

> steroids, which so far have done nothing. He thinks that because I

have

> had eczema in the past (on my face, head and behind my ears), that

this

> must be some kind of a skin disorder related to that. Nevermind the

> intriotal area appears to look perfectly normal when the eczema I

had

> was crusty and green. This doctor I have been seeing practices out

of

> the Scripps Clinic-Torrey Pines. I wanted to see Dr. Willems,

whom

> I am sure some of you have heard of. Naturally, he isn't accepting

new

> patients. So my suffering continues. That sharp, stabbing pain

right

> in my introitus. It only hurts upon pressure and/or penetration.

> Sometimes right at the end of my cycle it stings. When I was on the

> pill, the menstrual fluid caused stinging. Pelvic exams are quite

> painful, any penetration is. Because of the helpfulness I got from

my

> first two doctors (note the sarcasm), I started to conduct my own

> research and that is when I stumbled across vulvodynia and vulvar

> vestibulitis research. I felt some moments of elation, knowing that

I

> wasn't alone and there was a name for it. But doctors don't seem to

> take self-diagnosis too seriously. I think I know what's wrong with

my

> own body, especially my vagina!

> I am very upset about this; I get emotional anytime I have to

explain

> it. I'm angry at the medical establishment for being so stupid. I

> found this group thinking talking with others in the same boat might

be

> theraputic. I've already learned so much just in the few days I

have

> been receiving posts. Thanks for reading my rant!

>

>

[Guest guest]

>> I wanted to see Dr. Willems, whom I am sure some of you have

>>heard of. Naturally, he isn't accepting new patients.

Dr. Willems is a believer in using Estrace cream.

http://www.vulvarpainfoundation.org/topical_estrogen_treatment.htm

A good place to go first is this site:

http://www.aafp.org/afp/990315ap/1547.html

Match your symptoms and see which form of vulvodynia you might have.

Since Vulvodynia just means vulvar pain---it can be a LOT of things

from an easy infection to a more complicated nerve/muscle disorder.

Here is a massive links site for vulvodynia so be in the " reading "

mood! LOL

http://www.edae.gr/vulvodynia.html

Here is a list of vulvodynia doctors

http://www.vulvodyniasupport.com/medical.html

Some doctors don't want to give anything a " name " because once you

are labeled, insurance is hard to get if you lose yours. I was told

that by an endocronologist. But then there are doctors who just

don't know or who are like my urologist and say " it's a mental

condition " because they are older and don't know better.

Maybe you will find some good info on one of the sites above.

Lynn

[Guest guest]

Hi, ! Welcome, although we are all sorry to

see that you have a need to join us!

YOU GO, GIRL! You sound like you already know more

about vulvodynia than 95% of most gyns. LOL

Where do you live (what general part of the country)?

Maybe someone here can give you the name of a doctor

who is seeing patients and who won't blow off your

concerns!

Has any doctor tried giving you Estrace (17-b

estradiol - definitely not a steroid cream)? It has

helped many (though not all) of us, including me.

Take care and keep in touch.

Suzy

__________________________________________________

[Guest guest]

<< I haven't found a doctor yet who will use the word vulvodynia and many

that freak out when I use it. I don't understand the reluctance to give

a name to my pain, especially one that is so obviously correct. I am

tired of it being discounted. >>

_______________________

This sounds so familiar. The reason they do not want to use the word

" vulvodynia " or worse yet, write it down on your chart is because they do not

want to deal with vulvodynia and the women who suffer with it. Once a doctor

gives you the diagnosis he has to follow through with treatment, and quite

honestly most OBGYNs just don't want to get into it.

It is very difficult to get this under control, because getting it under

control is different for each and every one of us--and they (most of them)

are simply not up to it.

It's part of the vicious cycle that is this disorder.

Anne

[Guest guest]

Hi Suzy! Thanks for the compliment. I like to do my research on things.

I live in Southern California, San Diego county, actually. I know that

Dr. Willems is one such doctor and I am a patient with his medical

group (Scipps Clinic-Torrey Pines), but unfortunately he isn't accepting

new patients. I just chose a random gyno with this medical group in the

hopes his knowledge has spread around to all the staff, but no such luck

so far. It seems very obvious that I have vulvar vestibulitis, but not

to this doctor. I'm not done working with him though; he seemed

committed to finding out what was wrong and just that is a new concept

to me! No one has tried to give me Estrace; they seem stuck on

prescribing steroids, thinking this is related to my past history of

eczema. Not so! When I saw Dr. Kahn, he said that if it didn't work,

he'd do a biopsy. No one is doing a biopsy until all other methods of

treatment have been exhausted, including estrogen cream and I will tell

him this.

Do any of you get emotional (in other words, start crying) when you go

to the doctor for this problem? When I saw Dr. Kahn, I just burst into

tears when he asked me to describe my symptoms. I felt like I still

managed to communicate those to him well, but obviously it isn't too

helpful to be sobbing.

Subject: Re: Introduction

Hi, ! Welcome, although we are all sorry to

see that you have a need to join us!

YOU GO, GIRL! You sound like you already know more

about vulvodynia than 95% of most gyns. LOL

Where do you live (what general part of the country)?

Maybe someone here can give you the name of a doctor

who is seeing patients and who won't blow off your

concerns!

Has any doctor tried giving you Estrace (17-b

estradiol - definitely not a steroid cream)? It has

helped many (though not all) of us, including me.

Take care and keep in touch.

Suzy

[Guest guest]

Hey ,

Hang in there, girl!!! I have CRIED, AND CRIED, AND CRIED with this

dumb problem!!!!!!!!!!! I was on the phone with both of my docs'

offices on Friday. Fortunately, the nurses took me seriously when I

talked to them about what I have learned from the group. One even

gave me advice on how to communicate better with the doc about what I

wanted, since I get so upset. Who wouldn't get upset? It's the most

intimate part of our bodies, and it is SO tied in to how I feel about

myself as a woman. Just wanted to let you know--I have shed many

tears over this. You are not alone. (Incidentally, Mr. Wonderful my

husband IS--and I think even he has cried over this!!!! HA, HA, HA)

Hugs,

Meg

> Hi Suzy! Thanks for the compliment. I like to do my research on

things.

>

> I live in Southern California, San Diego county, actually. I know

that

> Dr. Willems is one such doctor and I am a patient with his

medical

> group (Scipps Clinic-Torrey Pines), but unfortunately he isn't

accepting

> new patients. I just chose a random gyno with this medical group in

the

> hopes his knowledge has spread around to all the staff, but no such

luck

> so far. It seems very obvious that I have vulvar vestibulitis, but

not

> to this doctor. I'm not done working with him though; he seemed

> committed to finding out what was wrong and just that is a new

concept

> to me! No one has tried to give me Estrace; they seem stuck on

> prescribing steroids, thinking this is related to my past history of

> eczema. Not so! When I saw Dr. Kahn, he said that if it didn't

work,

> he'd do a biopsy. No one is doing a biopsy until all other methods

of

> treatment have been exhausted, including estrogen cream and I will

tell

> him this.

>

> Do any of you get emotional (in other words, start crying) when you

go

> to the doctor for this problem? When I saw Dr. Kahn, I just burst

into

> tears when he asked me to describe my symptoms. I felt like I still

> managed to communicate those to him well, but obviously it isn't too

> helpful to be sobbing.

>

>

>

>

>

> From: suzy fromage <suzych263f@y...>

> Subject: Re: Introduction

>

> Hi, ! Welcome, although we are all sorry to

> see that you have a need to join us!

>

> YOU GO, GIRL! You sound like you already know more

> about vulvodynia than 95% of most gyns. LOL

>

> Where do you live (what general part of the country)?

> Maybe someone here can give you the name of a doctor

> who is seeing patients and who won't blow off your

> concerns!

>

> Has any doctor tried giving you Estrace (17-b

> estradiol - definitely not a steroid cream)? It has

> helped many (though not all) of us, including me.

>

> Take care and keep in touch.

>

> Suzy

[Guest guest]

,

I bet all of us have bawled in the office at one point, constant pain and no answers is exhausting and depressing!! If we didn't cry we'de blow up!! I cried so hard the last time I was there, and wasn't seeing my normal doctor cuz she was busy that she actually came over to take over my appointment. it is too hard to try and explain this to someone who has no clue what is going on with me,though she isn't a specialist she has been through them all with me.

Daphne

Re: IntroductionHi, ! Welcome, although we are all sorry tosee that you have a need to join us! :)YOU GO, GIRL! You sound like you already know moreabout vulvodynia than 95% of most gyns. LOLWhere do you live (what general part of the country)?Maybe someone here can give you the name of a doctorwho is seeing patients and who won't blow off yourconcerns!Has any doctor tried giving you Estrace (17-bestradiol - definitely not a steroid cream)? It hashelped many (though not all) of us, including me.Take care and keep in touch.Suzy*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Hi ,

Has the Doctor in Scripps clinic helped? If so, can

you give his name? I live in San Diego and also

wanted to go to Dr. Willems. I have had no success

with my current Dr.

Thank you,

Pat

--- wrote:

> Hi everyone. I just joined the groups a couple of

> days ago. I'm

> , 22. I have had " unspecified vulvar pain "

> ever since puberty.

> I haven't found a doctor yet who will use the word

> vulvodynia and many

> that freak out when I use it. I don't understand the

> reluctance to give

> a name to my pain, especially one that is so

> obviously correct. I am

> tired of it being discounted.

> Anyway, my journey to find relief started not long

> after I became

> sexually active and pain upon penetration continued

> long after the first

> try at intercourse. Doctor #1 blew me off. Doctor

> #2 prescribed

> testosterone cream. When this only pumped up my

> libido and made the

> pain worse, I went back. He shrugged his shoulders

> and told me to have

> children and that would surely make the pain go

> away. I never saw him

> again. By this time, my boyfriend and I had quit

> even trying to have

> sex. I had been on Alesse and the pain had gotten

> worse while I was on

> it. Only recently was I able to go to doctor #3.

> He prescribed topical

> steroids, which so far have done nothing. He thinks

> that because I have

> had eczema in the past (on my face, head and behind

> my ears), that this

> must be some kind of a skin disorder related to

> that. Nevermind the

> intriotal area appears to look perfectly normal when

> the eczema I had

> was crusty and green. This doctor I have been seeing

> practices out of

> the Scripps Clinic-Torrey Pines. I wanted to see

> Dr. Willems, whom

> I am sure some of you have heard of. Naturally, he

> isn't accepting new

> patients. So my suffering continues. That sharp,

> stabbing pain right

> in my introitus. It only hurts upon pressure and/or

> penetration.

> Sometimes right at the end of my cycle it stings.

> When I was on the

> pill, the menstrual fluid caused stinging. Pelvic

> exams are quite

> painful, any penetration is. Because of the

> helpfulness I got from my

> first two doctors (note the sarcasm), I started to

> conduct my own

> research and that is when I stumbled across

> vulvodynia and vulvar

> vestibulitis research. I felt some moments of

> elation, knowing that I

> wasn't alone and there was a name for it. But

> doctors don't seem to

> take self-diagnosis too seriously. I think I know

> what's wrong with my

> own body, especially my vagina!

> I am very upset about this; I get emotional anytime

> I have to explain

> it. I'm angry at the medical establishment for

> being so stupid. I

> found this group thinking talking with others in the

> same boat might be

> theraputic. I've already learned so much just in

> the few days I have

> been receiving posts. Thanks for reading my rant!

>

>

>

>

>

__________________________________________________

[Guest guest]

:

I have cried also at doctor's appointments. It gets so depressing going to dr.

after dr. and no one knows what's wrong. I've even had doctors give me the cold

shoulder after I cried to them and that just makes it worse! Hang in there!

Jana

[Guest guest]

Well, as a guy it breaks my heart to know that anyone suffers from this

without the medical community/government doing something significant. If it

was a problem with a penis the malady would be taken care of yesterday! My

prayers and support go to you all. Betty and I are appreciative of your

words as well try to solve this puzzle.

Re: Introduction

> :

>

> I have cried also at doctor's appointments. It gets so depressing going

to dr. after dr. and no one knows what's wrong. I've even had doctors give

me the cold shoulder after I cried to them and that just makes it worse!

Hang in there!

>

> Jana

>

>

>

> *****END OF MESSAGE*****

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

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[Guest guest]

Hi Pat! The doctor I am seeing at Scipps is Dr. Bruce Kahn. Willems is

not accepting new patients at this time. It's hard to say if Dr. Kahn

has helped per se. He wasn't put off by my continous crying and sounded

committed to finding out what's wrong and treating it. In my opinion,

it is very obvious I have vulvar vestibulitis, and I was surprised he

didn't catch on to that, but I am willing to give him another chance.

You might want to call Willems' office and check to make sure he still

isn't accepting new patients. That was a few months ago.

Pat Wrote:

Hi ,

Has the Doctor in Scripps clinic helped? If so, can

you give his name? I live in San Diego and also

wanted to go to Dr. Willems. I have had no success

with my current Dr.

Thank you,

Pat

[Guest guest]

Well, it's not just that I am in love with the greatest woman in my life but its a concern for just women in general. We should rattle some sabres.

Re: Introduction> :>> I have cried also at doctor's appointments. It gets so depressing goingto dr. after dr. and no one knows what's wrong. I've even had doctors giveme the cold shoulder after I cried to them and that just makes it worse!Hang in there!>> Jana>>>> *****END OF MESSAGE*****> -------------------------------------------------> To post message: VulvarDisorders > To Subscribe: VulvarDisorders-subscribe > Unsubscribe: VulvarDisorders-unsubscribe > List owner: VulvarDisorders-owner >> *****

[Guest guest]

AMEN!!!! My husband and I have both said if this was a males disorder they would have had a cure yesterday!!!

Thank you for being supportive it means alot to us. My husband has saved my life through this just by loving me and telling me not to give in, understanding when I cry all day or have no patience.

Re: Introduction> :>> I have cried also at doctor's appointments. It gets so depressing goingto dr. after dr. and no one knows what's wrong. I've even had doctors giveme the cold shoulder after I cried to them and that just makes it worse!Hang in there!>> Jana>>>> *****END OF MESSAGE*****> -------------------------------------------------> To post message: VulvarDisorders > To Subscribe: VulvarDisorders-subscribe > Unsubscribe: VulvarDisorders-unsubscribe > List owner: VulvarDisorders-owner >> *****