Re: Re: Missed Diagnosis for 16 YEARS....Localized Vestibulitis - Kay

[Guest guest]

Where is Libby located?

Tina M.

Re: Re: Missed Diagnosis for 16 YEARS....Localized Vestibulitis - Kay

Kay,

True that symptoms of vulvodynia in general and vestibulitis may overlap, but there are distinctions. Some of the ladies on the group have had a vestibulectomy. They would not have been a candidate if they would have been diagnosed with generalized vulvodynia.

I wasn't even diagnosed with vulvodynia (by a doctor) until I'd had it for 10 yrs. I knew for six yrs. prior that is what I had. Even after diagnosis, though, I've had to push for treatments, and what I wanted to try. No doctor until Libby has actually given me their own thoughts on treatment options. Ridiculous, but true.

Had I been properly diagnosed, then maybe, just maybe I could have gotten proper treatment and not suffered for many more YEARS.

I do understand what you are saying. I guess you'd just have to 'know' my full story to understand completely, though... Hugs, Chelle

[Guest guest]

Kay, True that symptoms of vulvodynia in general and vestibulitis may overlap, but there are distinctions. Some of the ladies on the group have had a vestibulectomy. They would not have been a candidate if they would have been diagnosed with generalized vulvodynia. I wasn't even diagnosed with vulvodynia (by a doctor) until I'd had it for 10 yrs. I knew for six yrs. prior that is what I had. Even after diagnosis, though, I've had to push for treatments, and what I wanted to try. No doctor until Libby has actually given me their own thoughts on treatment options. Ridiculous, but true. Had I been properly diagnosed, then maybe, just maybe I could have gotten proper treatment and not suffered for many more YEARS. I do understand what you are saying. I guess

you'd just have to 'know' my full story to understand completely, though... Hugs, Chelle

[Guest guest]

Hi,not sure how this site works or if i can get an answer this way, but if you have any info i would really appreciate it. i've been told i have vulvodynia, but i have this burning in my whole body not just my vulva. so this diagnosis doesn't totally make sense. in some ways it might but whatever i have going on is from my head to my toes. what i want to know is does vulvodynia burn so hot that it actually heats up your whole body? this burn i have is not a typical vaginal burn. it's like i have a blow torch up my coochi and it's blowing out hot air. also when i start heating up i get so hot i swear my head is going to blow off. i think this is something systemic, but it seems to have started as a vaginal issue. or maybe i have two issues going on, but i think it's all one. anyway, knowing the answer to this heat thing would help. i couldn't even get a straight answer from the dr's and they can't explain

the burning everywhere else.thank you for you help

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Are you taking niacin. If your vitamin pills contain too much niacin it can

cause borning skin.

Ora

On Tue, 8 Apr 2008 19:21:40 -0700 (PDT), Variano llvcarp@...>

wrote:

>Hi,

>not sure how this site works or if i can get an answer this way, but if you

have any info i would really appreciate it. i've been told i have vulvodynia,

but i have this burning in my whole body not just my vulva. so this diagnosis

doesn't totally make sense. in some ways it might but whatever i have going on

is from my head to my toes. what i want to know is does vulvodynia burn so hot

that it actually heats up your whole body? this burn i have is not a typical

vaginal burn. it's like i have a blow torch up my coochi and it's blowing out

hot air. also when i start heating up i get so hot i swear my head is going to

blow off. i think this is something systemic, but it seems to have started as a

vaginal issue. or maybe i have two issues going on, but i think it's all one.

anyway, knowing the answer to this heat thing would help. i couldn't even get a

straight answer from the dr's and they can't explain the burning everywhere

else.

>thank you for you help

>

[Guest guest]

,

I think it is neat that you don't believe it because

it doesn't make sense. You may have Vulvodynia, which

simply means vulvar pain but I agree that you have a

systemic disease.

You sound just like I was. I hurt everywhere. It is

now all gone. Mine were food intolerances mostly

gluten and milk. Gluten Sensitivity is a serious

systemic autoimmune disease and not an allergy.

Allergists won't be able to diagnose it.

I am sending you a link from a company that produces

and sells antiallergic meal replacement powders that I

have used off and on for years. It is great but their

research is wonderful and they have really good

explanations of this food thing. Fortunately the rest

of the world is beginning to look at this but it is

slow. You may have been reading about probiotics and

enzymes on this list.

Anyway read the article and the links on the left side

of the page. It may help you.

Arline

--- Variano llvcarp@...> wrote:

> Hi,

> not sure how this site works or if i can get an

> answer this way, but if you have any info i would

> really appreciate it. i've been told i have

> vulvodynia, but i have this burning in my whole body

> not just my vulva. so this diagnosis doesn't

> totally make sense. in some ways it might but

> whatever i have going on is from my head to my toes.

> what i want to know is does vulvodynia burn so hot

> that it actually heats up your whole body? this

> burn i have is not a typical vaginal burn. it's

> like i have a blow torch up my coochi and it's

> blowing out hot air. also when i start heating up i

> get so hot i swear my head is going to blow off. i

> think this is something systemic, but it seems to

> have started as a vaginal issue. or maybe i have

> two issues going on, but i think it's all one.

> anyway, knowing the answer to this heat thing would

> help. i couldn't even get a straight answer from

> the dr's and they can't explain the burning

> everywhere else.

> thank you for you help

>

>

>

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

> You rock. That's why Blockbuster's offering you one

> month of Blockbuster Total Access, No Cost.

__________________________________________________

[Guest guest]

I forgot the link. Sorry.

http://www.nutramed.com/fibromyalgia/fmdef.htm

Arline

> ,

>

> I think it is neat that you don't believe it because

> it doesn't make sense. You may have Vulvodynia,

> which

> simply means vulvar pain but I agree that you have a

> systemic disease.

>

> You sound just like I was. I hurt everywhere. It is

> now all gone. Mine were food intolerances mostly

> gluten and milk. Gluten Sensitivity is a serious

> systemic autoimmune disease and not an allergy.

> Allergists won't be able to diagnose it.

>

> I am sending you a link from a company that produces

> and sells antiallergic meal replacement powders that

> I

> have used off and on for years. It is great but

> their

> research is wonderful and they have really good

> explanations of this food thing. Fortunately the

> rest

> of the world is beginning to look at this but it is

> slow. You may have been reading about probiotics and

> enzymes on this list.

>

> Anyway read the article and the links on the left

> side

> of the page. It may help you.

>

> Arline

>

>

> --- Variano llvcarp@...> wrote:

>

> > Hi,

> > not sure how this site works or if i can get an

> > answer this way, but if you have any info i would

> > really appreciate it. i've been told i have

> > vulvodynia, but i have this burning in my whole

> body

> > not just my vulva. so this diagnosis doesn't

> > totally make sense. in some ways it might but

> > whatever i have going on is from my head to my

> toes.

> > what i want to know is does vulvodynia burn so

> hot

> > that it actually heats up your whole body? this

> > burn i have is not a typical vaginal burn. it's

> > like i have a blow torch up my coochi and it's

> > blowing out hot air. also when i start heating up

> i

> > get so hot i swear my head is going to blow off.

> i

> > think this is something systemic, but it seems to

> > have started as a vaginal issue. or maybe i have

> > two issues going on, but i think it's all one.

> > anyway, knowing the answer to this heat thing

> would

> > help. i couldn't even get a straight answer from

> > the dr's and they can't explain the burning

> > everywhere else.

> > thank you for you help

> >

> >

> >

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

> > You rock. That's why Blockbuster's offering you

> one

> > month of Blockbuster Total Access, No Cost.

>

>

> __________________________________________________

>

[Guest guest]

Arline,If it's not Metagenics, would you give me the information as well?Thanks.Hollis , I think it is neat that you don't believe it because it doesn't make sense. You may have Vulvodynia, which simply means vulvar pain but I agree that you have a systemic disease. You sound just like I was. I hurt everywhere. It is now all gone. Mine were food intolerances mostly gluten and milk. Gluten Sensitivity is a serious systemic autoimmune disease and not an allergy. Allergists won't be able to diagnose it. I am sending you a link from a company that produces and sells antiallergic meal replacement powders that I have used off and on for years. It is great but their research is wonderful and they have really good explanations of this food thing. Fortunately the rest of the world is beginning to look at this but it is slow. You may have been reading about probiotics and enzymes on this list. Anyway read the article and the links on the left side of the page. It may help you. Arline --- Variano < llvcarp (AT) yahoo (DOT) com> wrote: > Hi, > not sure how this site works or if i can get an > answer this way, but if you have any info i would > really appreciate it. i've been told i have > vulvodynia, but i have this burning in my whole body > not just my vulva. so this diagnosis doesn't > totally make sense. in some ways it might but > whatever i have going on is from my head to my toes. > what i want to know is does vulvodynia burn so hot > that it actually heats up your whole body? this > burn i have is not a typical vaginal burn. it's > like i have a blow torch up my coochi and it's > blowing out hot air. also when i start heating up i > get so hot i swear my head is going to blow off. i > think this is something systemic, but it seems to > have started as a vaginal issue. or maybe i have > two issues going on, but i think it's all one. > anyway, knowing the answer to this heat thing would > help. i couldn't even get a straight answer from > the dr's and they can't explain the burning > everywhere else. > thank you for you help > > > > ------------ --------- --------- --- > You rock. That's why Blockbuster' s offering you one > month of Blockbuster Total Access, No Cost. ____________ _________ _________ _________ _________ __

[Guest guest]

Hi Hollis,

I was out of the house and I don't know whether you

got this link in my next email.

Anyway, here it it.

http://www.nutramed.com/fibromyalgia/fmdef.htm

Arline

__________________________________________________

[Guest guest]

Yes, thanks Arline. I did see the post. . . right after i wrote mine. Whoops.Hollis Hi Hollis, I was out of the house and I don't know whether you got this link in my next email. Anyway, here it it. http://www.nutramed .com/fibromyalgi a/fmdef.htmArline ____________ _________ _________ _________ _________ __