Help!

June 14, 1999

Hi Sandi,

I am so sorry this has happened. Hang in there.....it will settle down and

improve again:) Maybe a bath in salt water might soothe the area?

love

Fiona

*~*~*

Help!

From: SandiSharp@...

Hi everyone,

This is Sandi and I just wrote yesterday that I am so thrilled with my

doctor. That is the good news. The bad news is that I tried to have sex

last night and today I feel worse than EVER. It is our anniversary. The sex

was a little painful, but not impossible. But the burning today is more than

I can stand.

It burns on the inside of the labia minora and there is this whitish film on

the skin. It is not a cream but looks more like dry skin. I had come a long

way from this intense burning to everywhere especially on the lips to burning

only in the urethral and vaginal opening. The lips and all the ulerations

there I thought was behind me.

I just feel like killing myself. I don't want to live like this. Why would

the lips be affected when they didn't make contact in sex? My husband could

touch the whole area before this and nothing really hurt ( just constant

burning at the opening). He could even make me have an orgasm. I was

getting better, slowly. But now I'm back to where I started from. I can

barely walk.

The pain on the lips almost gives the feeling of a UTI, which I know I don't

have. No urinary frequency or anything like that. Just so much burning.

I am doing everything, except the yeast theory because I've already done that

with no success.

Any positive thoughts would be greatly appreciated.

Thanks so much.

Sandi

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June 15, 1999

Sandi, so sorry to hear about your relapse. I recommend Aveeno Oatmeal

soak, it has really worked for me when I have had extreme burning after

sex. Most drugstores carry it and it is an over the counter product,

usually found where there are other bath products or in the baby

section. It is colloidal Oatmeal Powder and it for itch irritated skin.

It is fragrant free and recommended by dermatologists. Good luck, and

please don't think about doing anything drastic. I do understand how

you are feeling, as I have felt that way all too often, but I am hanging

in there and thinking positively and weirdly enough I find that when I

am in a state of calm, by symptoms lessen, God Bless, Jane

Donna C. White wrote:

>

> Gees Sandy, I'm so sorry. I just don't know what to say. I guess just

> keep trying and hopefully you will find something to beat this monster.

> Warm regards, Donna W.

>

> SandiSharp@... wrote:

> >

> > From: SandiSharp@...

> >

> > Hi everyone,

> >

> > This is Sandi and I just wrote yesterday that I am so thrilled with my

> > doctor. That is the good news. The bad news is that I tried to have sex

> > last night and today I feel worse than EVER. It is our anniversary. The sex

> > was a little painful, but not impossible. But the burning today is more

than

> > I can stand.

> >

> > It burns on the inside of the labia minora and there is this whitish film on

> > the skin. It is not a cream but looks more like dry skin. I had come a

long

> > way from this intense burning to everywhere especially on the lips to

burning

> > only in the urethral and vaginal opening. The lips and all the ulerations

> > there I thought was behind me.

> >

> > I just feel like killing myself. I don't want to live like this. Why would

> > the lips be affected when they didn't make contact in sex? My husband could

> > touch the whole area before this and nothing really hurt ( just constant

> > burning at the opening). He could even make me have an orgasm. I was

> > getting better, slowly. But now I'm back to where I started from. I can

> > barely walk.

> >

> > The pain on the lips almost gives the feeling of a UTI, which I know I don't

> > have. No urinary frequency or anything like that. Just so much burning.

> >

> > I am doing everything, except the yeast theory because I've already done

that

> > with no success.

> >

> > Any positive thoughts would be greatly appreciated.

> >

> > Thanks so much.

> > Sandi

> >

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

> > Campaign 2000 is here!

> > http://www.onelist.com

> > Discuss your thoughts; get informed at ONElist. See our homepage.

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

> >

June 16, 1999

Suzanna,

Yes, I am able to have pain free sex. It's as if I

never had vulvodynia. I pray it continues!!! Re: the

Aveeno soaks, I couldn't tolerate Aveeno soaks or soap

at all. I fetl alot of irritation and burning after

soaking in the tub with it. I don't soak in the tub

with anything anymore. I mainly take showers now and

I use a soap called Cetaphil. You can buy it at the

drug store. It is very soothing. It can be a little

expensive but RiteAid has a brand that is identical

and costs alot less. It can also be found at the

warehouse stores like Costco. I try to stock up on

it! Good luck to you. I hope you are able to find a

cure soon! Sincerely, Michele

--- zumor@... wrote:

> From: zumor@...

>

> Michele and Sandi and Others,

>

> I just love to hear stories of people being cured by

> oral antifungals.

> I am undergoing the same therapy (by dr. ) and

> have a lot of hope.

> Michele, you mean you can have pain free sex??

>

> I need help, something strange is going on. Dr.

> recommended

> Aveeno soaks. It took me a while to get organized

> and after about a

> week from seeing him and starting my first round of

> Nizoral I started

> soaks. I itch and burn after the soaks !!! After

> first one caused mild

> itching/burning (I had not have any itching at the

> time I started

> Aveeno) I started using distilled water for the

> soaks, and I itch/burn

> more and more. What is going on??? I am going to

> call dr.

> office, but has anything like that happen to anyone

> of you ?

>

> Suzanna

>

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>

July 14, 1999

sarah and all,

I would like to thank all of you that answered and offered help, I

couldn't get back to each of you individually, but Thank You!

Would you believe the lawyers had not gotten the office notes from my

" main " Chiari doctor?

I met with one of the " big " trial lawyers in the firm and he listened to

all I had to say, and said they can't make a final decision until they

get the notes, but if the doctor can differentiate between previous

problems and accident related (which he can) it is a strong case. I

think he is really willing to find out just what Chiari is, his wife is

a pediatrician. He took all the info. I pulled off the net. We're

going from here, I guess.

I am definitely going to mention Dr. Milhorat's study to my doctor.

Again,

Thank you!

WYVERNNC@... wrote:

>

> nancy

>

> ive been offlist for a couple weeks , due to some computer changes ect . im

> back using the old one at the moment , although havent yet posted to the list

> .

>

> i am in the midst of a car wreck law suit ( rearended and caused major

> difficulties , leading to surgery for acm.....my attny has learned some about

> acm ( still learning now , and the court trial is pending a new date , just

> postponed ) .

>

> the report of dr milhorat is perhaps the most useful study to date , he found

> many have a great increase in symptoms following a head injury or whiplash

> ect ........id be glad to try and help with your legal stituation .....you do

> need a special type of attny who is willing to learn about acm .......

>

> if i can help , please let me know , and if you would , add my name to the

> subject line so i dont miss it ( reading through some 600 posts at the moment

> ).

>

> here is my phone number ....id be glad to talk too .

>

> let me know if there is something i can do , ......sarah in paradise

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- Simplifying group communications

August 19, 1999

Hi a,

I have had 2 pregnancies Prior to the Vulvodynia. But I remember that they

couldn't hear the heart beat until I was about 12 weeks along. My babies

turned out fine and healthy. The 12 weeks are counted from the date of the

LMP, Last Menstrual period. So it is really 10 weeks from

ovulation/conception.

Good luck and please keep us posted.

Sandi

August 19, 1999

Hi a,

I just wanted to drop a line and offer some

encouragement. I've had 4 kids and with my third went

through the same thing with the heartbeat. It's hard

for doctors to find the little guy/gal. Even when I

was further along sometimes the doctor would have

trouble finding the heartbeat because of the position

the baby was in. Also if I remember correctly the

heartbeat can't be heard until the ninth week so if

the date of conception is off a couple of days it

might just not be able to be heard yet. They'll do a

transvaginal ultrasound and I'm sure everything will

be fine, it's a little uncomfortable but worth it.

Hang in there. I'm sorry you have to wait until

Monday, that doesn't seem very fair to you to have to

wait through the weekend. Try and think good thoughts.

Best wishes,

---a1127@... wrote:

>

> From: a1127@...

>

> Hi everyone,

>

> I was wondering if any of you had vulvodynia

(constant burning and POC)

> through out a pregnancy. I've got so many

questions and I'm concerned about

> a lot of things. Please e-mail me if any of you

had vulvodynia while

> pregnant, I'm talking all the symptoms! I'm really

scared. I just went for

> my first doctor's appt. for the pregnancy and he

couldn't hear the heartbeat.

> I'm 9 1/2 weeks right now. I'm getting a sonogram

done on Monday to confirm

> vitality. I pray to GOD it's still alive! I'm

also afraid that because I

> have vulvodynia very badly that my baby won't turn

out healthy or that

> something might be wrong with it. Please help me

if you can!!!!

>

> Sincerely,

> a

>

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

March 12, 2002

Hi,My husband Ron, had surgery Feb.26,And March 4 or 5 he started

draining this Pink salmon color drainage.It did not have any smell

to it.But! by Friday the 8th. I took him in to see the Doctor,he took

about 5-6 stamples out to open it to let it drain.That sounded like

the right thing to do.And he gave him Amoxil to take.So over the

weekend it stop draining the pink color and just started draining

blood from being open.So yesterday the 11th. I took him back to see

the doctor and he looked at it and said there was a blood clot in

it.So he doug it out.And took 1 or 2 more stamples out and MADE a

Hold in him all together about 2 1/2 Long and about a 1 inch Deep.And

left it open.Has Anyone had this done is this Right? He said he was

going to leave it open. How in the World is this going to Shut to be

able to Heal.Plus isn't this going to leave One Bad Scare?

Thank you

P.S.

Just wanted to Say Thanks To and for All the

infortmation they gave Me in helping me to take Care of Ron what to

do in the Protein and feeding department.Thanks alot

March 12, 2002

it is OK this happens sometimes with infection and when this happens it

will have to heal from the inside out and it will it just takes longer you are a

good wife to worry but it is OK