New Member

[Guest guest]

Hi New members,

You'll enjoy being a part of this listserve. There are many parents here

with all sorts of information and experiences.

I'm Debbie, mom to and . is 7 and was diagnosed with

her moderate SNHL when she was 2 1/2. She is now in second grade and although

she started out with a pretty large language delay, she has almost closed that

gap.

There are no stupid questions, so feel free to ask us anything that you

have a question about.

Debbie

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Hi Donna -

Glad you have found this group. I know that many of

your questions will be answered here.

I'll bet you are really glad to have found out the

cause of all your miseries. It's the first step to

re-gaining your health. I know you'll be feeling

better and better as time passes. It doesn't happen

in a day or a week, but slowly you'll see that you

feel better.

Are there places where you can buy gluten-free food

near where you live? If not, there are a few things

you can buy in the markets, and loads of things that

can be ordered by mail. Mail order is wonderful, but

also rather expensive. I ordered 4 bags of bagels,

and 2 bags of cookies last week, and the mailing

charge was $14.00. So this disease does cost us a bit

more than normal eating, but it's great to feel great.

You'll learn a lot about what other people do to stay

gluten-free in this group, so keep coming back to us,

and let us know the tricks you learn!

Barbara in SoCal

__________________________________________________

[Guest guest]

If you have to go to a hospital you might have success asking to talk with the dietician. Your doctor should probably order nutrition as a consultation given your dietary issues. However, if your insurance doesn't pay and you don't want to get stuck with a bill, then just asking to speak with the dietician and asking them to check ingredients would suffice. They should have lists of ALL ingredients for everything they serve. It may take time, but your health is worth it!

[Guest guest]

Hi Barbara! I have three different stores I can go to. Two I learned about

over an month ago, another just as my husband and I was getting into my

doctor's parking lot, noticed there was an health food store across the

road. We went to it after my appointment, and wow, so many choice, and the

lady in there was so helpful. I got a lot of stuff, and a great variety.

Looks like we'll be making monthly trips to get what I need in GF foods.

There's another one in our area as well, Hy Vee's has an health food area in

their store, and I was amaze at the variety there as well.

I've had DH since 2001, but at that time, it was so hard to find GF

products, and due to that, I didn't have the variety that I have today to

eat. I did my best to stay GF, but it wasn't easy, specially eating out,

which I no longer due, to every time I do, I get sick, so to me it's just

not worth it.

I show Appaloosa horses, and have a nice living quarters in my horse

trailer. I have a small refrigerator and an microwave oven, which I just

got. So now I can bring my foods with me, and have decent meals without

getting sick. It's my home away from home.

I'm so glad I'm in this group. I can see how much helpful you all are.

In Regards, Donna

Dean & Donna ' Appaloosa Horses

www.donnaappaloosahorses.com

Welcome To Donna ' WebPage

http://donnaevans.multiply.com

Donna ' Blog WebPage

http://www.myspace.com/9586741

Re: New Member

> Hi Donna -

>

> Glad you have found this group. I know that many of

> your questions will be answered here.

>

> I'll bet you are really glad to have found out the

> cause of all your miseries. It's the first step to

> re-gaining your health. I know you'll be feeling

> better and better as time passes. It doesn't happen

> in a day or a week, but slowly you'll see that you

> feel better.

>

> Are there places where you can buy gluten-free food

> near where you live? If not, there are a few things

> you can buy in the markets, and loads of things that

> can be ordered by mail. Mail order is wonderful, but

> also rather expensive. I ordered 4 bags of bagels,

> and 2 bags of cookies last week, and the mailing

> charge was $14.00. So this disease does cost us a bit

> more than normal eating, but it's great to feel great.

>

> You'll learn a lot about what other people do to stay

> gluten-free in this group, so keep coming back to us,

> and let us know the tricks you learn!

>

> Barbara in SoCal

>

> __________________________________________________

>

[Guest guest]

Debra, That's what I was thinking too. They have to know the patients food allergies, and go by them, due to what it could do to us. Thank you for answering my question. Donna

Dean & Donna ' Appaloosa Horseswww.donnaappaloosahorses.com

Welcome To Donna ' WebPagehttp://donnaevans.multiply.com

Donna ' Blog WebPagehttp://www.myspace.com/9586741

Re: New Member

If you have to go to a hospital you might have success asking to talk with the dietician. Your doctor should probably order nutrition as a consultation given your dietary issues. However, if your insurance doesn't pay and you don't want to get stuck with a bill, then just asking to speak with the dietician and asking them to check ingredients would suffice. They should have lists of ALL ingredients for everything they serve. It may take time, but your health is worth it!

[Guest guest]

Hi again, Donna -

Well, you are smart, getting yourself so organized

that you can literally have lunch at work! It saves

a lot of money, too. Eating out is expensive. But

maybe you should figure out a nice place to go for

dinner one evening a month, or something like that.

Check around to see what places have gluten-free

menus. It's getting more and more common.

I eat out several times a week, and very seldom have

problems. Of course, I don't always have what I want,

just what is available that is g-f. I've made a card

file of restaurants and what I've eaten there. It's

getting pretty packed. Then a place changes its menu,

and Grrrrr, I have to start over!

You have an interesting job, with your horses. There

was a time when I would have loved that. I have

rather bad arthritis now, I'm afraid that if I got on

a horse all the bones in me would shake loose!

Keep on plugging away!

Barbara in SoCal

__________________________________________________

[Guest guest]

Thank you, Barb. I think Golden Corral restaurants have wheat/gluten free

foods, but not sure. I just heard that through the grape vine, so to say. I

don't know of any restaurants around my area that have foods that are safe

for me.

Seems every time I eat out, I get sick. Not fun at all.

It's great that I can bring foods that are safe for me to eat, with me, so I

can enjoy myself at the horse shows, instead of worrying about being sick.

Stress doesn't help, which the shows don't due, but my husband thinks I can

go whenever I want to, and by mid afternoon, I'm tired. At the shows I get

up super early, due to they start early, and most of my classes are in the

morning. I'll spend the rest of the day in my trailer napping and watching

DVDs. Of course I'll check my horse every so often, then back to the

trailer. I handle mornings far better than afternoons.

Just got back a little while ago, due to farrier was out, but Dean was there

to help. He comes home, and tells me the farrier will be at my folk's to do

my other mares at four on Monday afternoon. I can't do that, so left a

message on the farrier's phone that we need to change the appointment to

Tuesday, due to I need Dean with me. My folk's are an half hour away from

where we live, and I'm not about to drive that part of the day, I'm all worn

out and just can't do it. I'll call the farrier tomorrow if he doesn't get

back with me tonight to reschedule for my two mares. Dean knows this and

persists to not listen to me, Well, he's going to have to start, he's part

of my stress factor. He does things out of spite, and I get so mad. Today he

has been spiteful to me all day, and I get the blame for his problems. I

feel if he wants to be alone, then why did he marry me to the begin with. I

like spending time with him, but gee, do I hear him like spending time with

Me? Never, and this hurts so much, and we've been married a little over

three years. I thought I did it right the second time, but at times, I fee

he doesn't want me, except for one thing, and that is so wrong.

Sorry, but I needed to vent. Donna

Dean & Donna ' Appaloosa Horses

www.donnaappaloosahorses.com

Welcome To Donna ' WebPage

http://donnaevans.multiply.com

Donna ' Blog WebPage

http://www.myspace.com/9586741

Re: New Member

> Hi again, Donna -

>

> Well, you are smart, getting yourself so organized

> that you can literally have lunch at work! It saves

> a lot of money, too. Eating out is expensive. But

> maybe you should figure out a nice place to go for

> dinner one evening a month, or something like that.

> Check around to see what places have gluten-free

> menus. It's getting more and more common.

>

> I eat out several times a week, and very seldom have

> problems. Of course, I don't always have what I want,

> just what is available that is g-f. I've made a card

> file of restaurants and what I've eaten there. It's

> getting pretty packed. Then a place changes its menu,

> and Grrrrr, I have to start over!

>

> You have an interesting job, with your horses. There

> was a time when I would have loved that. I have

> rather bad arthritis now, I'm afraid that if I got on

> a horse all the bones in me would shake loose!

>

> Keep on plugging away!

>

> Barbara in SoCal

>

> __________________________________________________

>

[Guest guest]

Donna - you have such an interesting way of life. I

really admire the way you are handling all of this.

If it was me, I'd just tell everyone off!

Interesting thing you said about feeling bad in the

afternoon. I always feel worse in the mornings. Even

before my diagnosis in 1999, I felt bad in the morning

and it got better as the day progressed. Now, I feel

normal, but have to hang around the house in the

mornings until I've gone to the bathroom and know I'll

be ok for the rest of the day.

When you eat out do you question the manager about

what you want to order? I always do this, ask either

the manager or chef what I can have that is

gluten-free (mainly flour). I tell them I can't eat

wheat, which includes white flour. I tend to be very

specific. Some people just don't understand! As I

said, I eat out alot. The last time was at a place

known for its hamburgers and pies. I had an omelet

with fruit instead of fries, but it included toast.

They brought the toast on the same plate as my omelet.

I didn't touch it - let a friend take it off the

plate, and then wiped the plate with my napkin. The

omelet was really good and so was the fruit, and I did

fine afterwards.

I am very fortunate, don't work, so I can eat at home

if I feel I need to. I'm planning a 9 day trip to WI

and IL in Oct. so I hope I can find g-f food while

I'm gone.

Wish me luck!!And Lots of luck and love to you,

Barbara in SoCal

__________________________________________________

[Guest guest]

>> Hi, I just joined a few days ago. Finally getting time to post to the group. > I was diagnosed to having Dermatitis Herpetiformis, it's related to Celiac. I was tested to see if I have Celiac Disease by my Gi doctor, and it came out negative, but my dermatologist did testing on a few of the blisters and it came up positive for the DH. I was diagnosed to having it in 2001. I was broken out in little blisters over 3/4 of my body. Went to a family doctor, and he kept saying I had staph infection and put me on medication, and it was not working and was getting worst, I went a second time to the same doctor, and he persisted I had staph infection, so I kept doing what he said to do, and kept taking the medication, in the mean time kept getting worst, so I said to heck with it, I took it on my own to go to the Dermatologist, and I'm so glad I did. I have been on Dapsone since, and had to stay wheat/gluten free. At that time, there wasn't hardly any place I could find wheat/gluten free stuff. Hi Donna, Glad to see you here. This is a great group!!! All very helpful and supportive, (not to mention knowledgable and gorgeous!) Im going to toss a few comments here along the way...Negative diagnosis... Its not uncommon. Dr's unfortunately, are undereducated in the US. As many here will attest, they spent years to get a diagnosis, someone recently posted the average endoscopy dx comes sometime around the 12th testing, and only if they are testing in the right spot of the small intestine. The only sure fire test is the genetic marker, and many MD's are unawares of this test.> I started having more problems last year, with diarrhea and had to get an colonoscopy, and the doctor who did it, said IBS, this is caused by the DH. This year I started getting worst, into more pain, and ended up going to the GI, and he did a test, an upper GI, and I have an hiatal hernia, and the acid reflux causes it to flare up. The doctor told me about a real good store in Jefferson City. I went there and wow do they have a lot of great choices on wheat/gluten free foods. All these problems go back to the original one, all related. I'm on Dapsone for the skin disease, I'm on Prilosec for the hiatal hernia, and with staying gluten/wheat free, I'm doing so much better. > My Mom came up with a question and with the way my health is. How would a hospital handle a patient that has to remain wheat/gluten free? God forbid I end up going to one, thank God I haven't since my condition has went from one thing to another, due to it. > My Dad is diabetic, which that's the first thing they were told, and they wouldn't take care of him properly, so now I'm wondering, how would they handle my health issues, due to I am not to have anything with wheat/gluten. Scares me to think if I ended up in the hospital on how my health would be messed up even more if they give me stuff that has it in it. I have to watch the salt, due to my blood pressure as well. Many of us here wear medic alert bracelets for celiac, as well as other ailments/meds/etc we have or have issues with. Its a great thing to have as most hospitals globally recognize the symbol. (except maybe on in outer mongolias south east side) LOL!> I'm so glad my friend Cassi told me about several links about Celiac, and this is how I found you all's link. > Sorry so long. I also need to add, I'm 46 years old, will be 47 next month. I live in the Lake of the Ozarks area of Missouri. In Regards, Donna > Again, great to see you here. Its a great place to garner information, and stay a step ahead of the Dr's!Best!CassiGluten free in downtown Imatra!>

[Guest guest]

Thank you, Barbara, I love working and showing my horses, and if I'm able

to, and as long as I'm able to, I'll continue to. I don't like trail riding

much, due to there's not likely to be a restroom anywhere near where we

ride. This is why I love showing, I have to problems finding the restrooms

at the show grounds.

I don't feel bad in the afternoons, I just get tired as the day progresses,

maybe, due to I stay so active in the morning, my body is telling me, it's

time to slow down and rest.

I've been gone until a little while ago. I had to go help my Mom, she's

still learning how to resize pictures, and she's doing great. She wanted to

take pictures of my two oldest horses, one is 22 years old, the other is 19

years old, both retired. I then came home, got my hair washed, took my bath,

then headed to where my other horses are, to take pictures. Don't know if I

can post them here, but I'll more than likely add them to my website. I

still need to download them.

I really enjoy the wheat/gluten free spaghetti. Had it when I got home. It

was made a few days ago, so I'm enjoying just reheating it, and it tastes

better all the time.

I'll have to start doing what you suggested at restaurants. I have an

regional Appaloosa association meeting this coming Sunday afternoon, it's a

three hour drive one way, and it's at a restaurant. I'll be careful on what

I order and ask them about the wheat/gluten free foods. Hope I get lucky and

they serve something I'm able to eat. Most my friends know I have this

problem.

Since I've been on the Prilosec, it's helped me a lot. I had a hard time

getting out of the house in the mornings until the last month, and since

I've been on it, it's' made a difference for me. :-) Hugs, Donna

Dean & Donna ' Appaloosa Horses

www.donnaappaloosahorses.com

Welcome To Donna ' WebPage

http://donnaevans.multiply.com

Donna ' Blog WebPage

http://www.myspace.com/9586741

Re: New Member

> Donna - you have such an interesting way of life. I

> really admire the way you are handling all of this.

> If it was me, I'd just tell everyone off!

>

> Interesting thing you said about feeling bad in the

> afternoon. I always feel worse in the mornings. Even

> before my diagnosis in 1999, I felt bad in the morning

> and it got better as the day progressed. Now, I feel

> normal, but have to hang around the house in the

> mornings until I've gone to the bathroom and know I'll

> be ok for the rest of the day.

>

> When you eat out do you question the manager about

> what you want to order? I always do this, ask either

> the manager or chef what I can have that is

> gluten-free (mainly flour). I tell them I can't eat

> wheat, which includes white flour. I tend to be very

> specific. Some people just don't understand! As I

> said, I eat out alot. The last time was at a place

> known for its hamburgers and pies. I had an omelet

> with fruit instead of fries, but it included toast.

> They brought the toast on the same plate as my omelet.

> I didn't touch it - let a friend take it off the

> plate, and then wiped the plate with my napkin. The

> omelet was really good and so was the fruit, and I did

> fine afterwards.

>

> I am very fortunate, don't work, so I can eat at home

> if I feel I need to. I'm planning a 9 day trip to WI

> and IL in Oct. so I hope I can find g-f food while

> I'm gone.

>

> Wish me luck!!And Lots of luck and love to you,

>

> Barbara in SoCal

>

> __________________________________________________

>

[Guest guest]

Hi Cassi!! Wow, it's great to see you in the group!!! I had no idea you were here, it's great to see a friend here. So far, everybody has been so wonderful and very friendly and supportive.

I was so excited when I seen your post. I'd of posted earlier, but I've been busy most of the day, as I posted a little while ago.

I agree, specially about family doctors. It takes going to a specialist to get this kind of disease under control. I'm sure you remember me posting so much about my stomach problems in another group, and since I had that upper GI done, and going to the GI specialist, I have been doing so much better. I do have my days, I'm sure we all do, but having more better days than bad days.

Great to see you here too!!! Hugs, Donna

Dean & Donna ' Appaloosa Horseswww.donnaappaloosahorses.com

Welcome To Donna ' WebPagehttp://donnaevans.multiply.com

Donna ' Blog WebPagehttp://www.myspace.com/9586741

Re: New Member

>> Hi, I just joined a few days ago. Finally getting time to post to the group. > I was diagnosed to having Dermatitis Herpetiformis, it's related to Celiac. I was tested to see if I have Celiac Disease by my Gi doctor, and it came out negative, but my dermatologist did testing on a few of the blisters and it came up positive for the DH. I was diagnosed to having it in 2001. I was broken out in little blisters over 3/4 of my body. Went to a family doctor, and he kept saying I had staph infection and put me on medication, and it was not working and was getting worst, I went a second time to the same doctor, and he persisted I had staph infection, so I kept doing what he said to do, and kept taking the medication, in the mean time kept getting worst, so I said to heck with it, I took it on my own to go to the Dermatologist, and I'm so glad I did. I have been on Dapsone since, and had to stay wheat/gluten free. At that time, there wasn't hardly any place I could find wheat/gluten free stuff. Hi Donna, Glad to see you here. This is a great group!!! All very helpful and supportive, (not to mention knowledgable and gorgeous!) Im going to toss a few comments here along the way...Negative diagnosis... Its not uncommon. Dr's unfortunately, are undereducated in the US. As many here will attest, they spent years to get a diagnosis, someone recently posted the average endoscopy dx comes sometime around the 12th testing, and only if they are testing in the right spot of the small intestine. The only sure fire test is the genetic marker, and many MD's are unawares of this test.> I started having more problems last year, with diarrhea and had to get an colonoscopy, and the doctor who did it, said IBS, this is caused by the DH. This year I st arted getting worst, into more pain, and ended up going to the GI, and he did a test, an upper GI, and I have an hiatal hernia, and the acid reflux causes it to flare up. The doctor told me about a real good store in Jefferson City. I went there and wow do they have a lot of great choices on wheat/gluten free foods. All these problems go back to the original one, all related. I'm on Dapsone for the skin disease, I'm on Prilosec for the hiatal hernia, and with staying gluten/wheat free, I'm doing so much better. > My Mom came up with a question and with the way my health is. How would a hospital handle a patient that has to remain wheat/gluten free? God forbid I end up going to one, thank God I haven't since my condition has went from one thing to another, due to it. > My Dad is diabetic, which that's the first thing they were told, and they wouldn't take care of him properly, so now I'm wondering, how would they handle my health issues, due to I am not to have anything with wheat/gluten. Scares me to think if I ended up in the hospital on how my health would be messed up even more if they give me stuff that has it in it. I have to watch the salt, due to my blood pressure as well. Many of us here wear medic alert bracelets for celiac, as well as other ailments/meds/etc we have or have issues with. Its a great thing to have as most hospitals globally recognize the symbol. (except maybe on in outer mongolias south east side) LOL!> I'm so glad my friend Cassi told me about several links about Celiac, and this is how I found you all's link. > Sorry so long. I also need to add, I'm 46 years old, will be 47 next month. I live in the Lake of the Ozarks area of Missouri. In Regards, Donna > Again, great to see you here. Its a great place to garner inform ation, and stay a step ahead of the Dr's!Best!CassiGluten free in downtown Imatra!>

[Guest guest]

Hi Donna - I will be thinking positive thoughts about

you. I hope you enjoy eating a few meals out, and

being positive in your approach to educating

restaurant workers about the g-f diet.

Sound like fun getting away for a few days for

whatever reason. However if you worry about the next

meal, not so much fun. Please, try to enjoy it!!.

When I go away I take only a protein bar for each

breakfast. I depend on having a salad for lunch, and

meat and vegetables for dinner. Try it, it works!

I've been very busy and have some busy days coming up,

so if I'm not here, that's the reason. I think about

the people in this group alot, wonder how they are

doing, hope the problems are working themselves out,

etc. But now I have some busy days coming up, so I

don't know when I'll get back here.

Love to all of my gluten-free friends!!

Barbara in SoCal

__________________________________________________

[Guest guest]

Hi Barbara, I'm not as worried about my meals as I used to be, being I'm

getting a better variety. I'll definitely do what you suggested.

I don't turn my computer on right away, due to I have my little pets to take

care of first, before I do anything else. I have two Guinea pigs and my Pug

dog, Ginger. Ginger is the easiest to take care of. Usually after I take my

meds, I take her out to go potty first, then clean out the Guinea pig cages,

just have two, and being it's done daily, it's about a five minute job, if

that.

Then I put my computer on, and catch up on my e-mails, then when Dean is

ready, we head to the horses, feed them, and take care of them, then I'm

home, and do the rest of my chores. Then get back to the computer.

I'm so glad I got the blinds for the one door, I'm not being blinded by the

sun. This time of the year the sunshine comes right in, and I can't see

anything because of where I have my desktop computer, but at least I'm

comfortable. :-)

Sounds like you'll be busy the next few days. I'm going to start getting

busy with my two year old filly, my other mare, and my show gelding, now

it's cooled down, but my horse trailer with the living quarters are where

the horses are, so I can take a break in there when I need to. The

refrigerator is going, and I have my microwave oven in there.

Today is laundry day, so got it started.

I think of you all too. I'm so glad I joined this group. In Regards, Donna

Dean & Donna ' Appaloosa Horses

www.donnaappaloosahorses.com

Welcome To Donna ' WebPage

http://donnaevans.multiply.com

Donna ' Blog WebPage

http://www.myspace.com/9586741

Re: New Member

> Hi Donna - I will be thinking positive thoughts about

> you. I hope you enjoy eating a few meals out, and

> being positive in your approach to educating

> restaurant workers about the g-f diet.

>

> Sound like fun getting away for a few days for

> whatever reason. However if you worry about the next

> meal, not so much fun. Please, try to enjoy it!!.

> When I go away I take only a protein bar for each

> breakfast. I depend on having a salad for lunch, and

> meat and vegetables for dinner. Try it, it works!

>

> I've been very busy and have some busy days coming up,

> so if I'm not here, that's the reason. I think about

> the people in this group alot, wonder how they are

> doing, hope the problems are working themselves out,

> etc. But now I have some busy days coming up, so I

> don't know when I'll get back here.

>

> Love to all of my gluten-free friends!!

>

> Barbara in SoCal

>

> __________________________________________________

>

[Guest guest]

Hi Everyone

I am 23 years old and suffering from vulvodynia for past 2 1/2 years

and I was only diagnosed 4 months ago. I am just about to start to take

anti-depresants and using estrogen cream.I have take the anti-

depresants before and they make me very light-headed. I have good days

and bad days sometimes I have to lay in bed with an ice pack. Luckily

I am blessed with a very patient boyfriend who tries he hardest to

support me but it is very frustrating. I am thinking about trying bio

feedback therapy but unsure if it will work for me. Has anybody had any

luck with any natural therapies?

[Guest guest]

Hi,

I am doing this in my physical therapy every two weeks in

combination with the kegal exercises, and it seems to be helping

bring down some of the pain. I am also doing heat therapy in my

sessions.

>

> Hi Everyone

>

> I am 23 years old and suffering from vulvodynia for past 2 1/2

years

> and I was only diagnosed 4 months ago. I am just about to start to

take

> anti-depresants and using estrogen cream.I have take the anti-

> depresants before and they make me very light-headed. I have good

days

> and bad days sometimes I have to lay in bed with an ice pack.

Luckily

> I am blessed with a very patient boyfriend who tries he hardest to

> support me but it is very frustrating. I am thinking about trying

bio

> feedback therapy but unsure if it will work for me. Has anybody

had any

> luck with any natural therapies?

>

[Guest guest]

Hi New member Where are you from? The hardest part is finding out what the cause is. Mine is LP. Youve come to the right place. This and the VMA has helped me alot!

Subject: New MemberTo: VulvarDisorders Date: Thursday, October 16, 2008, 6:23 PM

Hi EveryoneI am 23 years old and suffering from vulvodynia for past 2 1/2 years and I was only diagnosed 4 months ago. I am just about to start to take anti-depresants and using estrogen cream.I have take the anti-depresants before and they make me very light-headed. I have good days and bad days sometimes I have to lay in bed with an ice pack. Luckily I am blessed with a very patient boyfriend who tries he hardest to support me but it is very frustrating. I am thinking about trying bio feedback therapy but unsure if it will work for me. Has anybody had any luck with any natural therapies?__________________________________________________

[Guest guest]

Hi

I am in Queensland, Australia. I have been to a few doctors where I

live and they don't know much vulvodynia so I am trying to get as

much information as I can.

Thank you

>

> From: raggiecleo

> Subject: New Member

> To: VulvarDisorders

> Date: Thursday, October 16, 2008, 6:23 PM

>

>

>

>

>

>

> Hi Everyone

>

> I am 23 years old and suffering from vulvodynia for past 2 1/2

years

> and I was only diagnosed 4 months ago. I am just about to start to

take

> anti-depresants and using estrogen cream.I have take the anti-

> depresants before and they make me very light-headed. I have good

days

> and bad days sometimes I have to lay in bed with an ice pack.

Luckily

> I am blessed with a very patient boyfriend who tries he hardest to

> support me but it is very frustrating. I am thinking about trying

bio

> feedback therapy but unsure if it will work for me. Has anybody had

any

> luck with any natural therapies?

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Natural therapies that have been helpful for me:

Physical therapy (biofeedback was not helpful for me)

Acupuncture

Yoga

Meditation

Do you have any thoughts about what this has been caused by for you? If you are on the birth control pill, patch, ring, or shot you may want to consider a non-hormonal method of bc because I know that's helped a lot of us. Also do you have any recurring yeast or thrush? If so a good probiotic can help. Hang in there, keep the faith and know that you will get better! You are young and hopefully overall healthy so just try and think positively.

Lindsey__________________________________________________

[Guest guest]

Hello again,

If I were you I would definetly join the NVA (national vulvodynia assoc). I think their web site is www.nva.com. Thats where I found my Dr. in Orlando, Fl.

I found Ice pacs to be most helpful in times of extreme pain. My pain was mostly burning, like someone put acid on my skin. I also had some internal pain. It felt like I delivered a 1000 pound elephant. Unfortunatly you may have to see a lot of Dr.'s before you can get some answers, so if you can find and see a specialist, even if it means having to travel, you will most likely get the answers and treatment you need.

Feel free to email me direct if you would like. Best wishes and stay hopefull!

Subject: Re: New MemberTo: VulvarDisorders Date: Thursday, October 16, 2008, 11:34 PM

HiI am in Queensland, Australia. I have been to a few doctors where I live and they don't know much vulvodynia so I am trying to get as much information as I can.Thank you> > From: raggiecleo <jessica120585@ ...>> Subject: New Member> To: VulvarDisorders@ yahoogroups. com> Date: Thursday, October 16, 2008, 6:23 PM> > >

> > > > Hi Everyone> > I am 23 years old and suffering from vulvodynia for past 2 1/2 years > and I was only diagnosed 4 months ago. I am just about to start to take > anti-depresants and using estrogen cream.I have take the anti-> depresants before and they make me very light-headed. I have good days > and bad days sometimes I have to lay in bed with an ice pack. Luckily > I am blessed with a very patient boyfriend who tries he hardest to > support me but it is very frustrating. I am thinking about trying bio > feedback therapy but unsure if it will work for me. Has anybody had any > luck with any natural therapies?> > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ __> Do You

Yahoo!?> Tired of spam? Yahoo! Mail has the best spam protection around > http://mail. yahoo.com>__________________________________________________

[Guest guest]

I gave you the wrong address for the NVA . Its www.nva.org

Subject: Re: New MemberTo: VulvarDisorders Date: Thursday, October 16, 2008, 11:34 PM

HiI am in Queensland, Australia. I have been to a few doctors where I live and they don't know much vulvodynia so I am trying to get as much information as I can.Thank you> > From: raggiecleo <jessica120585@ ...>> Subject: New Member> To: VulvarDisorders@ yahoogroups. com> Date: Thursday, October 16, 2008, 6:23 PM> > >

> > > > Hi Everyone> > I am 23 years old and suffering from vulvodynia for past 2 1/2 years > and I was only diagnosed 4 months ago. I am just about to start to take > anti-depresants and using estrogen cream.I have take the anti-> depresants before and they make me very light-headed. I have good days > and bad days sometimes I have to lay in bed with an ice pack. Luckily > I am blessed with a very patient boyfriend who tries he hardest to > support me but it is very frustrating. I am thinking about trying bio > feedback therapy but unsure if it will work for me. Has anybody had any > luck with any natural therapies?> > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ __> Do You

Yahoo!?> Tired of spam? Yahoo! Mail has the best spam protection around > http://mail. yahoo.com>__________________________________________________

[Guest guest]

I am going to try physical therapy in a few weeks so I am hoping it

helps. I am not sure what has caused this but my doctor thinks it

may have been a thrush infection I had a few years ago. I am not on

the pill or anything as I get too sick when I take it or any kind of

birth control. I am trying to stay positive and I am so thankful I

have found this group its so good to know I am not alone. I have

started to take the anti-depresants the Doctor has given me and they

making me feel really tired but I am trying to keep positive!

Thank you again

>

> Natural therapies that have been helpful for me:

> Physical therapy (biofeedback was not helpful for me)

> Acupuncture

> Yoga

> Meditation

> Do you have any thoughts about what this has been caused by for

you?  If you are on the birth control pill, patch, ring, or shot you

may want to consider a non-hormonal method of bc because I know

that's helped a lot of us.  Also do you have any recurring yeast or

thrush?  If so a good probiotic can help.  Hang in there, keep the

faith and know that you will get better!  You are young and hopefully

overall healthy so just try and think positively.

> Lindsey

>

> __________________________________________________

>

[Guest guest]

, My pain started after taking antibiotics, once for a UTI and once for Strep Throat. So, I have had two Vulvodynia flares about 2 years apart. The yeast infection that resulted from the antiobiotics made my nerves in my vulva go crazy, especially my inner labia. I burned and burned, which caused my muscles to tense up to protect themselves, thus started my vicious pain cycle. I took Elavil 75 mgs. several years ago, started out at 10 mgs. and worked my up. It took about 4 months to begin to feel normal. The medicine made me really sleepy at first, but after about 2 months I adjusted. I take my pill about an hour before I go to bed.

This time around I've worked up to 100mgs. and am having about 90% relief so far, but I also had an IUD implanted after the birth of my 2nd son, and I think it is a cause that I haven't had 100% pain relief yet.

Has anyone else who has Vulvodynia had an IUD removed because it made them flare? I have the Mirena IUD with Progestin. My doctor is reluctant to remove it, says it shouldn't cause my pain to flare.

Subject: Re: New MemberTo: VulvarDisorders Date: Saturday, October 18, 2008, 10:15 AMI am going to try physical therapy in a few weeks so I am hoping it helps. I am not sure what has caused this but my doctor thinks it may have been a thrush infection I had a few years ago. I am not on the pill or anything as I get too sick when I take it or any kind of birth control. I am trying to stay positive and I am so thankful I have found this group its so good to know I am not alone. I have started to take the anti-depresants the Doctor has given me and they making me feel really tired but I am trying to keep positive!

Thank you again

>

> Natural therapies that have been helpful for me:

> Physical therapy (biofeedback was not helpful for me)

> Acupuncture

> Yoga

> Meditation

> Do you have any thoughts about what this has been caused by for you? If you are on the birth control pill, patch, ring, or shot you may want to consider a non-hormonal method of bc because I know that's helped a lot of us. Also do you have any recurring yeast or thrush? If so a good probiotic can help. Hang in there, keep the faith and know that you will get better! You are young and hopefully overall healthy so just try and think positively.

> Lindsey

> > __________________________________________________

>

[Guest guest]

Re the IUD-it does contain hormones which can cause flares. Also, one of the ways that IUDs work is by causing low-grade inflammation of your uterus, which is muscle and mucosal tissue that is connected to your vagina and vulva. That is definitely an area that I would NOT want to encourage inflammation. In fact, I take nutritional supplements to lower overall inflammation. If your gut is telling you it's making it worse, have it removed. Your doc is your employee. You can always have it reinserted if there is no improvement within several months.

Hugs,

Lindsey__________________________________________________

[Guest guest]

What are the supplements that you take to reduce inflammation? Im really interested in knowing b/c I have LP. My doc has me on low dose hydrocortisone foam once every five days. Its been working really well, however I stopped treatment and the inflammation came back. Now Im back on the same regimen. Thanks for you info!

Subject: Re: New MemberTo: VulvarDisorders Date: Sunday, October 19, 2008, 4:54 PM

Re the IUD-it does contain hormones which can cause flares. Also, one of the ways that IUDs work is by causing low-grade inflammation of your uterus, which is muscle and mucosal tissue that is connected to your vagina and vulva. That is definitely an area that I would NOT want to encourage inflammation. In fact, I take nutritional supplements to lower overall inflammation. If your gut is telling you it's making it worse, have it removed. Your doc is your employee. You can always have it reinserted if there is no improvement within several months.

Hugs,

Lindsey____________ _________ _________ _________ _________ __

[Guest guest]

Actually, many of us can connect our V pain with artificial hormones.

And the package inserts for some BC pills even say that a possible

side effect is V pain. So it stands to reason that the progestin in

the IUD could cause a problem. Is your dr. a well-versed V

specialist? Most OB/GYNS wouldn't have a clue about how hormones can

affect V disorders.

Melinda-

-- In VulvarDisorders , Reeves

wrote:

>

> , My pain started after taking antibiotics, once for a UTI

and once for Strep Throat.  So, I have had two Vulvodynia flares

about 2 years apart.  The yeast infection that resulted from the

antiobiotics made my nerves in my vulva go crazy, especially my inner

labia.  I burned and burned, which caused my muscles to tense up to

protect themselves, thus started my vicious pain cycle.  I took

Elavil 75 mgs. several years ago, started out at 10 mgs. and worked

my up.  It took about 4 months to begin to feel normal. The medicine

made me really sleepy at first, but after about 2 months I adjusted. 

I take my pill about an hour before I go to bed.

>  

>  This time around I've worked up to 100mgs. and am having about 90%

relief so far, but I also had an IUD implanted after the birth of my

2nd son, and I think it is a cause that I haven't had 100% pain

relief yet. 

>  

> Has anyone else who has Vulvodynia had an IUD removed because it

made them flare?  I have the Mirena IUD with Progestin.  My doctor is

reluctant to remove it, says it shouldn't cause my pain to flare.

>

>

>

> From: raggiecleo

> Subject: Re: New Member

> To: VulvarDisorders

> Date: Saturday, October 18, 2008, 10:15 AM

>

> I am going to try physical therapy in a few weeks so I am hoping it

> helps. I am not sure what has caused this but my doctor thinks it

> may have been a thrush infection I had a few years ago. I am not

on

> the pill or anything as I get too sick when I take it or any kind

of

> birth control. I am trying to stay positive and I am so thankful I

> have found this group its so good to know I am not alone. I have

> started to take the anti-depresants the Doctor has given me and

they

> making me feel really tired but I am trying to keep positive!

>

> Thank you again

>

>

> >

> > Natural therapies that have been helpful for me:

> > Physical therapy (biofeedback was not helpful for me)

> > Acupuncture

> > Yoga

> > Meditation

> > Do you have any thoughts about what this has been caused by for

> you?  If you are on the birth control pill, patch, ring, or shot

you

> may want to consider a non-hormonal method of bc because I know

> that's helped a lot of us.  Also do you have any recurring yeast or

> thrush?  If so a good probiotic can help.  Hang in there, keep the

> faith and know that you will get better!  You are young and

hopefully

> overall healthy so just try and think positively.

> > Lindsey

> >

> > __________________________________________________

> >