Re: - You know what I just remembered

[Guest guest]

that's really interesting, I wish I knew what it was! I've read up on

'capsaicin' in general, and it's literally made from hot peppers which are a

natural anesthetic. I was talking to my doc about it and she said that

capsaicin creams are actually indicated for about 80 different types of

disorders, mainly pain related, because it works so well at nullifying the

painful nerves.

I think that I would have gone out of my mind if I hasn't found this cream.

14 years is a long time to live with no relief.

I'm so glad that you're thinking about trying it. I'm the type of person

who hates when someone pushes me to try something because it worked for

them, but I swear by this stuff.

if you think of the name, let me know.

nic

>

>Reply-To: VulvarDisorders

>To: VulvarDisorders

>Subject: - You know what I just remembered

>Date: Thu, 26 Jul 2007 00:20:04 -0000

>

>When I was first diagnosed in 98 I was put on a cream for Herpes

>(though I don't have Herpes) and it burned like CRAZY. You were

>supposed to put it on 4 hours, 3 x a week and I would just be waiting

>to wash it off after the 4 hours. BUT this was the one thing that gave

>me SLIGHT relief. However, after 6 weeks of using it I was still

>burning the entire 4 hours that it was on and I couldn't take it

>anymore so I stopped. I wonder if that burning sensation 3 x a week

>worked in the same fashion as the capsaicin and if using it every day

>would have made a difference.

>

>The name of it alludes me but it was something like Aquafor or Aquaphor

>or something like A and Q

>

_________________________________________________________________

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[Guest guest]

>>

> if you think of the name, let me know.

>

> nic

>

>

It might have been acyclovir

[Guest guest]

>

> that's really interesting, I wish I knew what it was! I've read

up on

> 'capsaicin' in general, and it's literally made from hot peppers

which are a

> natural anesthetic. I was talking to my doc about it and she said

that

> capsaicin creams are actually indicated for about 80 different

types of

> disorders, mainly pain related, because it works so well at

nullifying the

> painful nerves.

>

> I think that I would have gone out of my mind if I hasn't found

this cream.

> 14 years is a long time to live with no relief.

>

> I'm so glad that you're thinking about trying it. I'm the type of

person

> who hates when someone pushes me to try something because it worked

for

> them, but I swear by this stuff.

>

> if you think of the name, let me know.

>

> nic

Oh and it's been 10 years with no relief for me so I know what you

mean. It's almost hard to conceive sometimes that this has happened

to me at all nevermind 10 years of it. And on nights like this when

my pain is off the charts and nothing in the world will ease it (not

EMLA, not percoset, not anything) it's enough to drive a person

crazy!

P.S. where is your doc located?

[Guest guest]

HI .

Two things come to mind as possibilities to what you might have been given.... one is 'Aldara' (imiquimod) and the other might be a liquid acid type med like Podolphyllin or 5FU and applied topically for a short time then washed off.

Believe me that stuff has to be put 'exactly' on the spot they're trying to clear up. I've talked with men use something like that and told them they need to apply it with a toothpick only to spare the good normal skin.

Either of those would burn exceptionally bad and are used if HPV (human papilloma virus) *a genital wart* is suspected. AND they''re definitely not used for HERPES . But some physicians think that HPV virus may be under skin and it is not erupting in warts so they'll also use it then too. (Likely the Aldara today). I think they've disconcontinued the podophyllin, it's been suggested to physicians 'not 'use that anymore as it's far too potent.

Or they'll use the Aldara say if someone has VIN ( Vulvar Intraepithelial Neoplasia) on the vulva that might show up on a biopsy (early dysplasia, *abnormal cells*) and considered 'pre-cancerous' (depending on the stage) and basically it's meant to remove that abnoral layer of tissue or a wart(s) and is why it burns so. (You 'may' have had VIN hon and if I were you? I'd definitely be trying to get some records as to 'why' they treated you!!

Anyway I'd suspect it was probably something like that that was used on you hon.

I can't tell you the number of emails I've gotten from women (and some men) who've had the warts and gone thru that and ended up with such pain afterwards (which they never had before) as it also damaged the healthy surrounding tissue. *sigh* And what 'really' frustrates me?

Is that they absolutely know that it's exceptionally rare for those genital warts to be cancerous, not even considered 'pre-cancerous' with the types of strain (usually #6 & 11) they are. It's a wart for petes sake.. (just like a skin tag in our arm pits, tho a different strain) but harmless. Just that it's in a taboo area so society likes to make it seem something so horribly nasty or shame on you as it's soooo socially unacceptable. *sigh* arghhhhhh What a crock . *sorry*

Now I've no idea hon if that's what happened to you but it certainly sounds like a casebook story from all I've heard from others, it fits. What a darn shame to think for something that in most cases is no big deal and to be left with severe pain like that afterwards. *Sigh*

Or some physician thinking that's why a person has the V pain, as 'usually' HPV itself is painless unless one happens to have a huge wart that is constantly being irritated or rubbed in the way of sex etc (like those big cauliflower ones I've seen) but normally not so. (And yes it is the same HPV virus in probably 98% of positive paps but those are more likely to be the riskier strains, different from a genital strains)..

(There are approx 200 strains or types of DNA of the HPV)

And not that it happens in all cases IF a doctor is cautious or if the patient in applying it... but if the doctor didn't tell the patient how potent that is (Aldara) or the patient thinks if a little is good, more is better, (just as some do with steroids,) 'that' is the danger.

But far too often it 'does' happen and there are people left walking around with that genital pain for no good reason because of removing a wart that likely wasn't causing a bit of pain in the first place. Arghhhhhh

Here's just one story: *sigh* (And her positive Pap should have had 'nothing" to do with using those acids on the vulvar tissue 'at all'... )

''My now 14 year vulvodynia/vestibulitis began with a diagnosis of subclinical HPV (showed up on a PAP , no warts) and treatment with an acid and podophyllin. The pain/burning from these harmful substances just never ended!

SO PLEASE BE CAREFUL ABOUT LETTING ANYONE TREAT YOU FOR SUBCLINICAL HPV. If you have no warts, don't let them burn it off with those acids. This might seem like a no-brainer but it is happening to 1000s of women everyday - especially popular in College health clinics.''

If anyone wants to see the side effects of the imiquimod (Aldara) they use, check out this link.

http://www.medicalwellnesscenter.com/aldaracontraindications.htm and honestly I've a slew of private stories (easily over 100) where exactly that did happen to people and not just a few.

BUT... if I did have VIN or a low grade of cancer it's certainly the choice before the destructive surgical removal of the vulva (or parts of it) and most often it will turn things around. The good and bad of all things eh?

My two cents hon but I thought you mentioned that before and I went 'Ah Ha' to myself, but with what you added today, I'd almost bet on it. So I can't say if the Capsaicen would help you or not hon... but I would be cautious if you do try it and "ONLY' exactly where it's needed.

And ? Hon I am SO glad you posted a positive story using the Capsaicen. That is fantastic and one of the few I've seen and was so happy to hear that. so I certainly don't mean to discourage anyone else from using that and logically it does make sense why it works, but I would suggest caution.

Sorry for the long 'tome' here but hope it helps prevent unnecessary misery to others down the road.

Dee~

(----- Original Message -----

From: sweetkissofmulder

When I was first diagnosed in 98 I was put on a cream for Herpes (though I don't have Herpes) and it burned like CRAZY. You were supposed to put it on 4 hours, 3 x a week and I would just be waiting to wash it off after the 4 hours. BUT this was the one thing that gave me SLIGHT relief. However, after 6 weeks of using it I was still burning the entire 4 hours that it was on and I couldn't take it anymore so I stopped.

I wonder if that burning sensation 3 x a week worked in the same fashion as the capsaicin and if using it every day would have made a difference. The name of it alludes me but it was something like Aquafor or Aquaphor or something like A and Q

[Guest guest]

>

> HI .

>

> Two things come to mind as possibilities to what you might have

been given.... one is 'Aldara' (imiquimod) and the other might be a

liquid acid type med like Podolphyllin or 5FU and applied topically

for a short time then washed off.

>

> Believe me that stuff has to be put 'exactly' on the spot they're

trying to clear up. I've talked with men use something like that and

told them they need to apply it with a toothpick only to spare the

good normal skin.

>

> Either of those would burn exceptionally bad and are used if HPV

(human papilloma virus) *a genital wart* is suspected. AND they''re

definitely not used for HERPES . But some physicians think that HPV

virus may be under skin and it is not erupting in warts so they'll

also use it then too. (Likely the Aldara today). I think they've

disconcontinued the podophyllin, it's been suggested to

physicians 'not 'use that anymore as it's far too potent.

>

> Or they'll use the Aldara say if someone has VIN ( Vulvar

Intraepithelial Neoplasia) on the vulva that might show up on a

biopsy (early dysplasia, *abnormal cells*) and considered 'pre-

cancerous' (depending on the stage) and basically it's meant to

remove that abnoral layer of tissue or a wart(s) and is why it burns

so. (You 'may' have had VIN hon and if I were you? I'd definitely be

trying to get some records as to 'why' they treated you!!

>

> Anyway I'd suspect it was probably something like that that was

used on you hon.

>

> I can't tell you the number of emails I've gotten from women (and

some men) who've had the warts and gone thru that and ended up with

such pain afterwards (which they never had before) as it also damaged

the healthy surrounding tissue. *sigh* And what 'really' frustrates

me?

>

> Is that they absolutely know that it's exceptionally rare for those

genital warts to be cancerous, not even considered 'pre-cancerous'

with the types of strain (usually #6 & 11) they are. It's a wart for

petes sake.. (just like a skin tag in our arm pits, tho a different

strain) but harmless. Just that it's in a taboo area so society

likes to make it seem something so horribly nasty or shame on you as

it's soooo socially unacceptable. *sigh* arghhhhhh What a crock .

*sorry*

>

> Now I've no idea hon if that's what happened to you but it

certainly sounds like a casebook story from all I've heard from

others, it fits. What a darn shame to think for something that in

most cases is no big deal and to be left with severe pain like that

afterwards. *Sigh*

>

> Or some physician thinking that's why a person has the V pain,

as 'usually' HPV itself is painless unless one happens to have a huge

wart that is constantly being irritated or rubbed in the way of sex

etc (like those big cauliflower ones I've seen) but normally not so.

(And yes it is the same HPV virus in probably 98% of positive paps

but those are more likely to be the riskier strains, different from a

genital strains)..

> (There are approx 200 strains or types of DNA of the HPV)

>

> And not that it happens in all cases IF a doctor is cautious or if

the patient in applying it... but if the doctor didn't tell the

patient how potent that is (Aldara) or the patient thinks if a

little is good, more is better, (just as some do with

steroids,) 'that' is the danger.

>

> But far too often it 'does' happen and there are people left

walking around with that genital pain for no good reason because of

removing a wart that likely wasn't causing a bit of pain in the first

place. Arghhhhhh

>

> Here's just one story: *sigh* (And her positive Pap should have

had 'nothing " to do with using those acids on the vulvar tissue 'at

all'... )

>

> ''My now 14 year vulvodynia/vestibulitis began with a diagnosis

of

> subclinical HPV (showed up on a PAP , no warts) and treatment

with an acid and

> podophyllin. The pain/burning from these harmful substances just

never

> ended!

Wow Dee, you are like an encyclopedia. THAT IS EXACTLY WHAT I WAS ON

AND GOD IN HEAVEN DID IT BURN. He treated me for the vulvodynia with

it. He knew I didn't have herpes or HPV or warts as he tested me for

those things BUT he still thought this might bring some relief and

oddly enough after the treatment was over I DID have a SLIGHT

improvement that quickly faded. He didn't say it was to burn anything

off like warts. He described it more as making the body react and

sort of regenerate - almost like inteferon might do. Like he said

itching was good. He didn't tell me to only put a little bit on,

that's for sure. This was Dr. Krumholtz or as I call him Crummy

because he was such a BASTARD and yelled at me when I came into him

with ulcers down there from applying Vitamin E on top of the Aldara,

which looking back it was probably more the Aldara then the Vitamin

E. He yelled that I had ruined the efficacy of his treatment for

Vulvodynia because I used the Vitamin E he'd never know how things

would have turned out without it. That was bad news that day. That

was when I called him back and told him to FUCK OFF and that I was

reporting him to the AMA. Never ever see Burton Krumholtz on Long

Island. I swear that man is evil. He works in the place I go to now

and so far I've never run into him. One day when my doc was out the

girl offered him to me and I told her flat out I'd see hell freeze

over before I'd let that psycho near me.

That being said, I don't really blame him for the burning I'm in now

though because I was very severely burning for 2 months straight

before I ever saw him and I honestly don't think Aldara damaged me

more. If anything it helped for a tiny while then everything just

reverted back to form. But yes, this is what I was on.

As to the warts, it had been suggested to me that I might have them

and a biopsy was done (this was before the Aldara) by another doc. He

did a biopsy that hurt like hell and found nothing. There was the

tiniest little bump on the skin and he biopsied it... that was pretty

stupid if you ask me.

Another joker, named Kusnitz. I picked alot of winners back then.

Heck back when I got Vestibulitis I told one young doc I was burning

in my vestibule area (a gyno, no less) and he said 'you're burning in

your ear?')

God help us with these docs!

[Guest guest]

Oh and Dee, I definitely did not have a diagnosis of Vulvar

Intraepithelial Neoplasia either.

I distinctly remember him doing a full work up of blood and alos

examining me under some high magnification thing. He said I had no LS

and nothing that could be seen just a burning Vestibule and if I'd be

willing to try it he thought the Aldara might help the burning by

encouraging my body to build up it's own resistance to it or

something to that effect. I had already been on every cream and

burning like mad for 2 months so I agreed. And when I'd call him to

say how bad the burning was when applied and also the following days

he just said to keep at it and then when the itching started he said

that was good.

Overall Dr. Krumholtz is a waste as a Doctor and I think he was just

experimenting with Aldara as a cure for VV. I don't think he had one

ounce of compassion or decency but again I don't think it made me any

worse than I was (luckily it sounds like). And I have had rare times

in the last 10 years where the burning goes down a few notches to a 4

or 5 which is where it had been for the last several months till this

recent flare up. I know my skin is capable of being close to normal

down there it's just that most times... it's not!

I have a feeling that the capsaicin could not possibly hurt MORE than

the Aldara did and that was on for 4 hours. said she takes

the Cap off in 20 minutes. I could probably tolerate it. I'm still

thinking it's worth a try.

I still can remember those 4 hours though. I'd be climbing the walls

till I could rinse it off.

Yikes

[Guest guest]

Awwh Poor .

oooh I know how that had to hurt. It's one time I'm sorry I was right.. *Sigh* I'm so sorry you had to go thru that... But honestly hon believe me I really have heard so many stories where that has happened and for years afterwards they were left with that pain and they had 'none' before that darn Aldara. *sigh* (and for something that's not a serious problem at all is the worst of it. *sigh*)

I know hon that you said your pain started before you used it but it certainly didn't do a thing to help it 'at all'.. in my opinion. Let alone him trying to blame the vitamin E.. Jeesh, Thank gawd you did use that.. Sigh* it may have been your saving grace.

I'm so sorry you had to deal with a doctor with that kind of attitude, it's unbelieveable. Sorry you even have to work near him... DUH....Well you've experienced it and maybe can help others that might talk about it and it's done and overwith so all we can do is look forward...

Big hugs hon and keep on hanging in there... You 'will' find your key yet. Dee~

[Guest guest]

>

> Awwh Poor .

>

> oooh I know how that had to hurt. It's one time I'm sorry I was

right.. *Sigh* I'm so sorry you had to go thru that... But honestly

hon believe me I really have heard so many stories where that has

happened and for years afterwards they were left with that pain and

they had 'none' before that darn Aldara. *sigh* (and for something

that's not a serious problem at all is the worst of it. *sigh*)

>

> I know hon that you said your pain started before you used it but

it certainly didn't do a thing to help it 'at all'.. in my opinion.

Let alone him trying to blame the vitamin E.. Jeesh, Thank gawd you

did use that.. Sigh* it may have been your saving grace.

>

> I'm so sorry you had to deal with a doctor with that kind of

attitude, it's unbelieveable. Sorry you even have to work near

him... DUH....Well you've experienced it and maybe can help others

that might talk about it and it's done and overwith so all we can do

is look forward...

>

> Big hugs hon and keep on hanging in there... You 'will' find your

key yet.

> Dee~

>

Hey Dee

Yeah I have to admit that pain was the worst ever and there is no way

I'd have let a doctor talk me into using it if all I had was a little

wart and no pain. I was already dying and when he talked about

the 'immune' reaction that the girl posted about further down it felt

like it had potential. This guy also talked about the inteferon

shots but something about the way he described them made me opt out

of that idea or maybe it was that my boss at the time was such a

wench and she wouldn't give me the time I needed to go out there 3

times a week for shots.

I really do think it relieved some of my pain as unbelievable as that

is to say. I remember telling my Mother who passed away a few months

later that after using the Aldara I had moments that were like a 7 or

8 and not the constant 10 that I had had for two months but that was

very shortlived and not worth the pain of the Aldara treatments, not

by a long shot. This guy used me as a guinea pig and I think I'm

lucky I got out of it as well as I did.

I amaze myself though at how I can burn. Last night I had like two

tons of EMLA on and STILL I was burning through it. It's craziness I

tell ya.

L