Burning, Raw, Red skin? ( Judy)

[Guest guest]

HI Judy....

awwh I am so sorry hon for what you're going thru and know how it can be sooooo frustrating and how it affects all parts of our lives. *Sigh*

Something that made my ears perk up is when you said you have ''this awful red, raw, burning skin. I can't even get out of the house to walk at all.'' That was what my main symptom was too... that feeling of squatting over a blow torch as one member said years ago, it was that bad, and that horribly angry red of inflammation *sigh* and I too could barely walk straight or sit for any length of time. So bad that I also had to be totally celebate the last 3 yrs of those 10. *sigh*.. Have sex? are you kidding me? *sigh*

I can tell you especially since you said it was your skin in that condition that in my opinion there really is nothing I've found better to restore the tissue to health than using the E & T creams topically with just a tiny small dab. (you'll see us use that E & T to stand for Estrace (or estradiol) it's a name brand of estradiol, the mother estrogen we all produce and the skin thrives on for nourishment and gives it back it's elasticity, tone, & more, and T. stands for a testosterone cream that give the tissue back it's strength and toughness. PLUS T used topically (both are)... helps to restore damaged or depleted E. 'receptors'... so that when you do use the E it's now got healthy receptors to do what they're supposed to. (birth control by the way if you were on that is part of the problem with both the E & T receptors) *sigh*

I suffered for over 10 long horrible nightmare years, went thru at least a dozen doctors and the Cleveland clinic with no help and those two things the E & T 'finally' were what put me over the top to complete wellness (as long as I do a minimal maintenance now of once or twice a week with a tiny peasize dab of both I stay well) I've been well for years now and am doing great, even got remarried two years ago *grin* and life in 'all' it's aspects are wonderful. *wink*

It's definitely not a fast fix as skin has it's own renewal rate. Just like it takes time for a black fingernail to grow out or our hair to grow long but with patience it can work, and the time is going to go by anyway so definitely worth working on. Those who aren't too bad might see good results in a much shorter amt. of time.. but I was 'BAD" believe me.

It was the abuse and overuse of the doggone steroids that made me a thousand times worse by the way as I was told to by ignorant physicians *sigh* I was a good little patient in those days and listened to them instead of my body. *groan*

The other thing to quickly mention is that Estrace is not used for it's soothing ability... but for tissue restoration down the road. If in a flare up I'd not use it.... and the name brand of Estrace might irritate or burn and I went thru hell with that too but I was determined to stay with it only because I knew by then the technical aspects and how it definitely can restore the tissue, and even if I could only use it once every 3rd or 4th night I stuck with it.

With time (months) I was able to move it to every other night and so on as the skin got better and better. And it did take 'me' six full months before I was completely well but it worked. Hooray.. And there can be flare ups or setbacks while on it too but they get further and further apart with time till there are none. And that was exactly how it worked for me so I didn't let that frighten me. I just back off to let things simmer down.

But....that was years before I learned that one can have 'estradiol' compounded by a compounding pharmacy in a very mild base instead. The estrogen in it is the same as Estrace is... but that way the 'base' ingredients are much milder than what is in the Estrace cream. Some have no problem at all with the Estrace so we're all different and it depends on how bad or raw and excoriated we are too.

I was worse than bloody raw hamburger believe me with huge blisters even all from the abuse of the steroids. *sigh* In that state even air blowing over killed me so no matter what I put on would kill me and you can see why I took it so slow but I "KNEW" it would work for me and it did. (Just too bad back then I didn't know about compounding pharmacy's *grin*...

With you explaining what your skin condition is right now I probably would not try the name brand Estrace but "I" sure would get estradiol in a compounded form if it were me. The T. HAS to be compounded so usually that base is mild. (You use a lot less T than E too)

Just my thoughts on it and 'my' experience hon for what it's worth.

Big hugs and hang in there... there is hope indeed and it's finding 'your' key.

Dee

[Guest guest]

Dee I love you! You are so supportive and when I'm down your emails usually pick me up and make me think I can beat this.. I have had a very positive attitude the past few days because of these groups! I have sat for 2 days trying to catch up on all these old mails and I have printed off so much stuff my printer is crying lol.. I have been taking notes and going shopping lol.

I went out today and got some laundry detergent to wash my undies, towels and wash cloths in. I also called my doctor today to see about the T we talked about. If I cant get it from her I'll go back to my GYN. If not there to my family doc! I'm on a get well mission. I might not be this motivated in a day or so cause its time for my period but for right now I'm a woman not giving up lol..

Hugs

Lee Ann

Subject: Burning, Raw, Red skin? ( Judy)To: VulvarDisorders Date: Friday, May 23, 2008, 8:23 PM

HI Judy....

awwh I am so sorry hon for what you're going thru and know how it can be sooooo frustrating and how it affects all parts of our lives. *Sigh*

Something that made my ears perk up is when you said you have ''this awful red, raw, burning skin. I can't even get out of the house to walk at all.'' That was what my main symptom was too... that feeling of squatting over a blow torch as one member said years ago, it was that bad, and that horribly angry red of inflammation *sigh* and I too could barely walk straight or sit for any length of time. So bad that I also had to be totally celebate the last 3 yrs of those 10. *sigh*.. Have sex? are you kidding me? *sigh*

I can tell you especially since you said it was your skin in that condition that in my opinion there really is nothing I've found better to restore the tissue to health than using the E & T creams topically with just a tiny small dab. (you'll see us use that E & T to stand for Estrace (or estradiol) it's a name brand of estradiol, the mother estrogen we all produce and the skin thrives on for nourishment and gives it back it's elasticity, tone, & more, and T. stands for a testosterone cream that give the tissue back it's strength and toughness. PLUS T used topically (both are)... helps to restore damaged or depleted E. 'receptors'. .. so that when you do use the E it's now got healthy receptors to do what they're supposed to. (birth control by the way if you were on that is part of the problem with both the E & T receptors) *sigh*

I suffered for over 10 long horrible nightmare years, went thru at least a dozen doctors and the Cleveland clinic with no help and those two things the E & T 'finally' were what put me over the top to complete wellness (as long as I do a minimal maintenance now of once or twice a week with a tiny peasize dab of both I stay well) I've been well for years now and am doing great, even got remarried two years ago *grin* and life in 'all' it's aspects are wonderful. *wink*

It's definitely not a fast fix as skin has it's own renewal rate. Just like it takes time for a black fingernail to grow out or our hair to grow long but with patience it can work, and the time is going to go by anyway so definitely worth working on. Those who aren't too bad might see good results in a much shorter amt. of time.. but I was 'BAD" believe me.

It was the abuse and overuse of the doggone steroids that made me a thousand times worse by the way as I was told to by ignorant physicians *sigh* I was a good little patient in those days and listened to them instead of my body. *groan*

The other thing to quickly mention is that Estrace is not used for it's soothing ability... but for tissue restoration down the road. If in a flare up I'd not use it.... and the name brand of Estrace might irritate or burn and I went thru hell with that too but I was determined to stay with it only because I knew by then the technical aspects and how it definitely can restore the tissue, and even if I could only use it once every 3rd or 4th night I stuck with it.

With time (months) I was able to move it to every other night and so on as the skin got better and better. And it did take 'me' six full months before I was completely well but it worked. Hooray.. And there can be flare ups or setbacks while on it too but they get further and further apart with time till there are none. And that was exactly how it worked for me so I didn't let that frighten me. I just back off to let things simmer down.

But....that was years before I learned that one can have 'estradiol' compounded by a compounding pharmacy in a very mild base instead. The estrogen in it is the same as Estrace is... but that way the 'base' ingredients are much milder than what is in the Estrace cream. Some have no problem at all with the Estrace so we're all different and it depends on how bad or raw and excoriated we are too.

I was worse than bloody raw hamburger believe me with huge blisters even all from the abuse of the steroids. *sigh* In that state even air blowing over killed me so no matter what I put on would kill me and you can see why I took it so slow but I "KNEW" it would work for me and it did. (Just too bad back then I didn't know about compounding pharmacy's *grin*...

With you explaining what your skin condition is right now I probably would not try the name brand Estrace but "I" sure would get estradiol in a compounded form if it were me. The T. HAS to be compounded so usually that base is mild. (You use a lot less T than E too)

Just my thoughts on it and 'my' experience hon for what it's worth.

Big hugs and hang in there... there is hope indeed and it's finding 'your' key.

Dee

[Guest guest]

Hi Dee,

Thank you so much for your kind words and for all the information. I

will absolutely talk to my doc. regarding the E&T. She has been very

helpful and seems willing to work with me. Thank you so much. It

helps just to know someone else understands and has finally received

help. I so glad you are pain free now. thanks again, Judy

>

> HI Judy....

>

> awwh I am so sorry hon for what you're going thru and know how it

can be sooooo frustrating and how it affects all parts of our lives.

*Sigh*

>

> Something that made my ears perk up is when you said you

have ''this awful red, raw, burning skin. I can't even get out of

the house to walk at all.'' That was what my main symptom was too...

that feeling of squatting over a blow torch as one member said years

ago, it was that bad, and that horribly angry red of inflammation

*sigh* and I too could barely walk straight or sit for any length of

time. So bad that I also had to be totally celebate the last 3 yrs

of those 10. *sigh*.. Have sex? are you kidding me? *sigh*

>

> I can tell you especially since you said it was your skin in that

condition that in my opinion there really is nothing I've found

better to restore the tissue to health than using the E & T creams

topically with just a tiny small dab. (you'll see us use that E & T

to stand for Estrace (or estradiol) it's a name brand of estradiol,

the mother estrogen we all produce and the skin thrives on for

nourishment and gives it back it's elasticity, tone, & more, and T.

stands for a testosterone cream that give the tissue back it's

strength and toughness. PLUS T used topically (both are)... helps to

restore damaged or depleted E. 'receptors'... so that when you do use

the E it's now got healthy receptors to do what they're supposed to.

(birth control by the way if you were on that is part of the problem

with both the E & T receptors) *sigh*

>

> I suffered for over 10 long horrible nightmare years, went thru at

least a dozen doctors and the Cleveland clinic with no help and those

two things the E & T 'finally' were what put me over the top to

complete wellness (as long as I do a minimal maintenance now of once

or twice a week with a tiny peasize dab of both I stay well) I've

been well for years now and am doing great, even got remarried two

years ago *grin* and life in 'all' it's aspects are wonderful. *wink*

>

> It's definitely not a fast fix as skin has it's own renewal rate.

Just like it takes time for a black fingernail to grow out or our

hair to grow long but with patience it can work, and the time is

going to go by anyway so definitely worth working on. Those who

aren't too bad might see good results in a much shorter amt. of

time.. but I was 'BAD " believe me.

>

> It was the abuse and overuse of the doggone steroids that made me a

thousand times worse by the way as I was told to by ignorant

physicians *sigh* I was a good little patient in those days and

listened to them instead of my body. *groan*

>

> The other thing to quickly mention is that Estrace is not used for

it's soothing ability... but for tissue restoration down the road. If

in a flare up I'd not use it.... and the name brand of Estrace might

irritate or burn and I went thru hell with that too but I was

determined to stay with it only because I knew by then the technical

aspects and how it definitely can restore the tissue, and even if I

could only use it once every 3rd or 4th night I stuck with it.

>

> With time (months) I was able to move it to every other night and

so on as the skin got better and better. And it did take 'me' six

full months before I was completely well but it worked.

Hooray.. And there can be flare ups or setbacks while on it too

but they get further and further apart with time till there are

none. And that was exactly how it worked for me so I didn't let

that frighten me. I just back off to let things simmer down.

>

> But....that was years before I learned that one can

have 'estradiol' compounded by a compounding pharmacy in a very mild

base instead. The estrogen in it is the same as Estrace is... but

that way the 'base' ingredients are much milder than what is in the

Estrace cream. Some have no problem at all with the Estrace so we're

all different and it depends on how bad or raw and excoriated we are

too.

>

> I was worse than bloody raw hamburger believe me with huge blisters

even all from the abuse of the steroids. *sigh* In that state even

air blowing over killed me so no matter what I put on would kill me

and you can see why I took it so slow but I " KNEW " it would work for

me and it did. (Just too bad back then I didn't know about

compounding pharmacy's *grin*...

>

> With you explaining what your skin condition is right now I

probably would not try the name brand Estrace but " I " sure would get

estradiol in a compounded form if it were me. The T. HAS to be

compounded so usually that base is mild. (You use a lot less T than

E too)

>

> Just my thoughts on it and 'my' experience hon for what it's worth.

>

> Big hugs and hang in there... there is hope indeed and it's

finding 'your' key.

>

> Dee

>

[Guest guest]

awwh

Hi Lee Ann...

Luv ya to bits hon.... and YES you are going to conquer this... You go my friend!!! Keep that attitude, even with the period coming up. *groan* *LOL*

I remember when I thought I'd never get well or had some horrible unknown condition that was so rare... and how disgusted, disheartened and discouraged I was and a journal I kept that was filled with tear stained pages sobbing my heart out, believe me esp certain I'd never have sex again (which I 'loved' previously LOL I thought I was being punished *chuckle* .... and that's when I gave up on the doctors and found my own treatment and it worked. (gosh that was 9-10 yrs ago, hard to believe how the time has flown and I'm still here. *smile*

It was just good logical intelligent detective work and the art of deduction that took a long time to do all the research and put all the pieces of the puzzle together, but it sure did it for me and so many others since hon. Especially for those who have literal tissue problems with it feeling like the skin is splitting or tearing & ripping and that inflammation, WOW.. do I remember those days. You never forget but sure glad it's gone and only a memory today.

Big cyber ((hugs))

Dee ~

[Guest guest]

>Hi Dee, I just wanted to know how your condition started?? and what

was your diagnosis? I hhave both VV and vuvlodynia that started with

lichen simplex and they prescreibed clobetasol, which I have

completetly stopped, I have been using premarin cream but it burns,

how much does it cost to have E compounded?

Also my vulvodynia pain is mostly on the labia majora, did you have

pain there? I also have it in the vestibule area but I can almost

handle that , but not being able to sit or walk is very depressing..

I appreciate all the time you take to answer all of our question ,

you are a great for helping us all..

Thank you so very much..

Jen

> awwh

>

> Hi Lee Ann...

>

> Luv ya to bits hon.... and YES you are going to conquer this... You

go my friend!!! Keep that attitude, even with the period coming

up. *groan* *LOL*

>

> I remember when I thought I'd never get well or had some horrible

unknown condition that was so rare... and how disgusted, disheartened

and discouraged I was and a journal I kept that was filled with tear

stained pages sobbing my heart out, believe me esp certain I'd never

have sex again (which I 'loved' previously LOL I thought I was being

punished *chuckle* .... and that's when I gave up on the doctors and

found my own treatment and it worked. (gosh that was 9-10 yrs ago,

hard to believe how the time has flown and I'm still here. *smile*

>

> It was just good logical intelligent detective work and the art of

deduction that took a long time to do all the research and put all

the pieces of the puzzle together, but it sure did it for me and so

many others since hon. Especially for those who have literal tissue

problems with it feeling like the skin is splitting or tearing &

ripping and that inflammation, WOW.. do I remember those days.

You never forget but sure glad it's gone and only a memory today.

>

> Big cyber ((hugs))

> Dee ~

>

[Guest guest]

Dee: thank you for this post. That is what we need to hear more of. "one day it will all be a memory". Thank you. love, ml

awwh

Hi Lee Ann...

Luv ya to bits hon.... and YES you are going to conquer this... You go my friend!!! Keep that attitude, even with the period coming up. *groan* *LOL*

I remember when I thought I'd never get well or had some horrible unknown condition that was so rare... and how disgusted, disheartened and discouraged I was and a journal I kept that was filled with tear stained pages sobbing my heart out, believe me esp certain I'd never have sex again (which I 'loved' previously LOL I thought I was being punished *chuckle* .... and that's when I gave up on the doctors and found my own treatment and it worked. (gosh that was 9-10 yrs ago, hard to believe how the time has flown and I'm still here. *smile*

It was just good logical intelligent detective work and the art of deduction that took a long time to do all the research and put all the pieces of the puzzle together, but it sure did it for me and so many others since hon. Especially for those who have literal tissue problems with it feeling like the skin is splitting or tearing & ripping and that inflammation, WOW.. do I remember those days. You never forget but sure glad it's gone and only a memory today.

Big cyber ((hugs))

Dee ~

[Guest guest]

I agree with Dee that finding what works for you, not necessarily what some doctor tells you is what will help heal this condition (just like most other conditions) it's sad we live in a world where research and disorders are driven by pharmaceuticals and not internal healing. mladamsgte@... wrote: Dee: thank you for this post. That is what we need to hear more of. "one day it will all be a memory". Thank you. love,

ml awwh Hi Lee Ann... Luv ya to bits hon.... and YES you are going to conquer this... You go my friend!!! Keep that attitude, even with the period coming up. *groan* *LOL* I remember when I thought I'd never get well or had some horrible unknown condition that was so rare... and how disgusted, disheartened and discouraged I was and a journal I kept that was filled with tear stained pages sobbing my heart out, believe me esp certain I'd never have sex again (which I 'loved' previously LOL I thought I was being punished *chuckle* .... and that's when I gave up on the doctors and found my own treatment and it worked. (gosh that was 9-10 yrs ago, hard to believe how the time has flown and

I'm still here. *smile* It was just good logical intelligent detective work and the art of deduction that took a long time to do all the research and put all the pieces of the puzzle together, but it sure did it for me and so many others since hon. Especially for those who have literal tissue problems with it feeling like the skin is splitting or tearing & ripping and that inflammation, WOW.. do I remember those days. You never forget but sure glad it's gone and only a memory today. Big cyber ((hugs)) Dee ~