Jen/ LS and Clobetasol

[Guest guest]

Jen, I was wondering why you stopped using the Clobetasol for

the LS? Even if you use Clob once a twice a week, it is something that is

needed for LS. I was told that LS is controllable, but never curable, and that

I would have it the rest of my life. Do you have any symptoms of LS now? I have

Vestibulitis, Vulvodynia and LS. None of which are under control at the moment,

although the injections did the best – I almost felt at least 50 percent better

or more for a month – until I was stupid and didn’t go back for more

injections.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of jen9952

Sent: Saturday, May 24, 2008 8:39 AM

To: VulvarDisorders

Subject: Re: Burning, Raw, Red skin? ( Judy)

>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]

About the clob & LS?....

There are some physicians (and articles I've seen) who feel it should be continued as a maintenance and others who believe it should be used only on an 'as needed' basis. (For instance if in a flare up) so it's a matter of opinion. The as needed one I think would be as long as one is doing a minimal maintenance of both the E & T to keep the tissue good & healthy there isn't a continuous need for the steroids IF the symptoms don't return.

Just like those with herpes... some believe a continuous medication is good... others only use it 'as needed' if a flare up is coming on. Some may go for years without an outbreak and to me it doesnt make sense to take a medication like that without any symptoms. (but that's me)

One gal just said she keeps her Clob around like her fire extinguisher.. just in case... but hopes she never has to use it and hasn't in a long time. I personally feel the same way. Since steroids are to reverse inflammation, itch, swelling, etc. and if there are none (as long as the tissue is kept healthy and fed & nourished and that's where the E & T comes in).. it doesn't make logical sense 'to me' for a need for a steroid with no symptoms to revert.

Even as Dr. J Willems and his women who vestibulitis...(some cancelled their scheduled surgery after they got so well using the E) he too said that using the E had to be continued to keep the symtoms away. So you do have a minimal maintenance of something but at least it's for food & nourishment and that makes sense to me, like brushing our teeth to prevent cavities, etc., But with the clob that's to reverse symptoms but if kept healthy healthy enough you hopefully won't have symptoms. *chuckle* (YOY what a ramble.. ha ha)

For our new members who might not know, clob stands for clobetasol.. a generic very potent (class one) topical steroid that is usually used with LS (lichen sclerosis) or LP (lichen Planus) and if overused can result in some dire effects and even go systemic.

Dee ~

[Guest guest]

YOY I can see my spelling or leaving out words is getting pretty bad, LOL

No wonder, I just looked at the clock & it's 5am YIKES I'm going to bed... haha

G'nite all and hope you have a nice Memorial Day and that it's pain free. Dee

[Guest guest]

nne, I was diagnosed with lichen simplex which is a dermatititis, that was well over a year ago , I got that under contol with the Clobetasol, but I think I overused it and it caused all my oither problems, do you take any medications for your problems such as antidepressants, ?? Thanks Jen millburytimes wrote: Jen, I was wondering why you stopped using the Clobetasol for the LS? Even if you use Clob once a twice a week, it is something that is needed for LS. I was told that LS is controllable, but never curable, and that I would have it the rest of my life. Do you have any symptoms of LS now? I have Vestibulitis, Vulvodynia and LS. None of which are under control at the moment, although the injections did the best – I almost felt at least 50 percent better or more for a month – until I was stupid and didn’t go back for more injections. nne From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of jen9952Sent: Saturday, May 24, 2008 8:39 AMTo: VulvarDisorders Subject: Re: Burning, Raw, Red skin? ( Judy) >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]

Hi Dee, I have lichen simplex which I believe I got from a reations to topicals I used for yeast and bv, I got that under control with the clob,, but that was well over a year now, and the licen simplex was in my vestibule area, now my pain is mostly on my labia majora, so I was diagnosed with vulvodynia, which I thought might be caused by overuse of clob.,, I tried neuronin and elaivil and either one seems to touch the pain, my doc did prescrbe premarin but it burns me as does most topicals I use on it. My vestibule does look like it has improved alot, but my labia majora is always red and sometimes swollen, and of course it burns...one time it swelled up so bad my boyfriend said it looked like a big tomato, so basically now I am living on darvocets just to live which still does not help that much. I have an appointment on the 28th this month AGAIN and I am hoping she will have some answers or at least send me to a pian clinic.....but living

in the state of Maine the docs here have no clue on how to treat this, but I am hoping for relief soon... Well thanks for reading my ranting, I just needed to vent... Thanks so much JenDee Troll wrote: About the clob & LS?.... There are some physicians (and articles I've seen) who feel it should be continued as a maintenance and others who believe it should be used only on an 'as needed' basis.

(For instance if in a flare up) so it's a matter of opinion. The as needed one I think would be as long as one is doing a minimal maintenance of both the E & T to keep the tissue good & healthy there isn't a continuous need for the steroids IF the symptoms don't return. Just like those with herpes... some believe a continuous medication is good... others only use it 'as needed' if a flare up is coming on. Some may go for years without an outbreak and to me it doesnt make sense to take a medication like that without any symptoms. (but that's me) One gal just said she keeps her Clob around like her fire extinguisher.. just in case... but hopes she never has to use it and hasn't in a long time. I personally feel the same way. Since steroids are to reverse inflammation, itch, swelling, etc. and if there are none (as long as the

tissue is kept healthy and fed & nourished and that's where the E & T comes in).. it doesn't make logical sense 'to me' for a need for a steroid with no symptoms to revert. Even as Dr. J Willems and his women who vestibulitis...(some cancelled their scheduled surgery after they got so well using the E) he too said that using the E had to be continued to keep the symtoms away. So you do have a minimal maintenance of something but at least it's for food & nourishment and that makes sense to me, like brushing our teeth to prevent cavities, etc., But with the clob that's to reverse symptoms but if kept healthy healthy enough you hopefully won't have symptoms. *chuckle* (YOY what a ramble.. ha ha) For our new members who might not know, clob stands for clobetasol.. a generic very potent (class one) topical steroid

that is usually used with LS (lichen sclerosis) or LP (lichen Planus) and if overused can result in some dire effects and even go systemic. Dee ~