en/ LS and Clobetasol

[Guest guest]

No, I don’t take an antidepressant. I take Neurontin. I

had bad reactions to Lyrica and Cymbalta. I was diagnosed with LS and was told

I had to use Clobetasol for life or it would get worse. I currently have

Vulvodynia and Vestibulitis and any other name that can be called for extremely

painful vulva and perineum area. It really doesn’t look very red or

swollen, although my PT said last week that she thought it was a little. The Clobetasol

sometimes helps and sometimes it does not. The trigger point injections I had

two months ago helped the most, but at that time I could actually point to

specific areas that were really sore – now it is extremely sore all over.

I put everything I can think of on the area, but I always use Estrace at

night and Lidocaine several times during the day. Nothing works for very long,

and I am very discouraged as I don’t know what to try next. I had a

vestibulectomy August of 07, which was wonderful but it lasted only four

months. At the same time I had the vestibulectomy, I had pudendal nerve

decompression surgery and I was told the vestibulitis came back because of the

pudendal nerve inflammation. Very confusing, but I just know I have extreme

pain and can’t figure out what to do about it.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of jen

Sent: Monday, May 26, 2008 8:32 AM

To: VulvarDisorders

Subject: Re: Jen/ LS and Clobetasol

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 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 ~

>