Re: Atrophic Vaginitis (Annie)

[Guest guest]

Thanks again for the info.

I did have a biopsy for LS and it came out negative last year. The

doc says the skin still looks like that is what it is, being white.

Can it develop more over time? The tamavate and anusol were the best

remedy so far. I am now understanding the tamavate probably made my

skin weaker, thus exposing me to more problems such as BV,

dermatitis, and the harsh winter. I hope this is the problem because

I can control it mostly knock on wood.

I have thought about the LS biopsy and wondered if I should have

another. I do remember he wanted to get the skin where it hurt the

most, and I was not able to give a definitive spot it all hurt. Of

course for the most part I am using the treatments for LS anyway.

I have the mirena iud and have thought about getting it out, but the

alternative of heavy periods and cramps is not good. I have tried

all the forms of BC for the maintenence of the cramps. I make dh

where a condom because I hate his sperm it burns.

I still want at least another baby so I can't do anything too drastic

yet.

Are there any other bases that are non irritating that you have used?

The coestra is estrogen (but not sure yet) I have a high potency, and

regular form.

There are some other compound creams that I use Comast, cocel,

liphodydra. i am taking them in tomorrow at appt and find out what

they are exactly.

The symptons are still there but I have been up and around more. I

know this is a slow healing, and I ma learning a lot more each bout I

go through.

My fear is this is more complicated and I need a vulva specialist

outside my state and then the cost of that. I know I tend to get

ahead of myself.

One last thing... I have read in the V book about propylene glycol

being a allergen irritant, and then saw it is in a lot of stuff

including the tamovate cream. any experience with that?

Any experience with cutivate cream?

You have a lot of knowledge you should write a book!

Thanks,

Annie

> HI Annie,

>

> I'm not familiar with the name Coestra HP.... but I'm thinking it's

an extrogen of some type with the 'estra' in it. (might even be

estradiol) and if it is that's good and I like that it's in a Crisco

base so it should be mild.

>

> The Temovate steroid you mentioned is one of the strongest class

one,of steroids so that's pretty potent hon (usually reserved for

those with LS (lichen sclerosis) and if you don't have that I'm

surprised you were given that as it can truly thin the tissue in a

fairly short amt. of time.

>

> I'm glad to hear you were given the Locoid instead that's one of

the lowest strengths of steroids similiar to a hydrocortisone (tho

still a prescription) but it definitely is by far a much milder

one. The very mildest would be an OTC hydrocortisone cream

though.

>

> Just keep in mind that steroids are used for 'symptom' relief and

if they let up (the burning, itch, inflammation etc.) it's time to

taper back or possibly go off of them.

>

> I take it you are also using the Vagifem? That's an estradiol

insert tablet of estrogen so that should help restore the vagina and

the vulvar tissue as well but then how or when do you use the Anusol,

oops I see you said you're alternating nights. Just wondering why

you are using the Anusol? (also assuming you mean using it

intravaginally).

>

> It's got an astringent quality to it (to shrink up hemmorhoids) and

it sometimes is used intravaginally for someone with Lichen Planus

(LP) as the vaginal canal itself can shrink or even fuse with

adhesions so it's used there but I didn't think you had LP. I don't

think it would hurt but just wonder if it's needed as well.

>

> It would seem to 'me' that using the estrogen cream if that's what

coestra is and then the Vagifem intravaginally would be enough hon at

least for tissue restoration and then the Locoid for pain relief.

>

> About using the gylcerin? That's often an ingredient suggested to

stay away from (and especially non-oxynol 9), both are found in

lubrications and both are known to irritate, (Definitely stay way

from Non oxynol 9) but glycerin too might be irritating or even

trigger a yeast infection. So it's just interesting that you find it

soothing. Here's just one quote,

>

> " The two ingredients that most commonly cause irritation are

Nonoxynol-9 and glycerin. Glycerin is a form of sugar. It's what

makes many lubes taste sweet. Some women find that using glycerin in

their vagina is an open invitation to a yeast infection. "

>

> Hope you enjoyed the V book hon by E. it's a good one and

probably my 2nd favorite (esp. for photos and diagrams) next to

Vliets 'Screaming to be Heard'.

>

> Take care and hope things are improving for you hon, just my two

cents worth.

>

> hugs

> Dee~

>

[Guest guest]

HI Anne,

Gosh hon where do you live? Outside the USA? Only because I'm not familiar with those drugs either that you mentioned.

Comast, cocel, liphodydra. Are they possibly something that has been compounded specifically for you?

I would tend to agree with you about possibly not getting another biopsy too. I honestly feel with the way you're treating things that even if it is LS the treatments are basically what you're doing hon. (except I'd add the testosterone too and that's good even if it's not LS but vulvodynia as well, both the E & T help strengthen that skin.

I think one of the main reasons tho for a biopsy is to rule out cancer of the vulva and with LS there is a higher risk of 3-5% for that. So if you've had a sore or lesion that's been chronic and just won't heal (rather than all over) or a lump, etc. I wouldn't hesistate to have one. And I would ask for a dermopathologist to read it if I did get another one.

About using condoms? I just sent this somewhere else but it fits perfectly here too (how ironic) and I do hope you don't use those prelubricated condoms..

~~ HI all, to let you know that All pre-lubed condoms generally have that ''non-oxynol 9'' (or a derivative) ingredient in them..... *sigh* BAD BAD STUFF for us (or any woman) ....My suggestion would be to simply go with a regular brand (non lubed) and then buy a lubrication separately. (I like Slippery Stuff myself) Just make sure the lube doesn't have that in it either and believe me some of them do. Read those labels & Ingredients.

The non-oxynol 9 is basically a spermacide, it kills the sperm, but what it can do to us women is pretty nasty and if you've been using that for a while I'll bet you've had reactions but probably thought it was from the sex or your V pain. *sigh* So I'd throw them away PDQ if I were using them hon, believe me they can be like asbestos or angelhair with fine tiny little cuts.

I've tons of info on the non-oxynol 9 but waaay too much to put here but that ingredient has been banned already in some countries and there's a big effort to get it banned in the USA too, in fact right now its before the FDA so we'll see. ~~

So Annie, I sure hope you're not using the lubed ones.

As far as a vulva specialist? Hon just 'my' thoughts on that and you'll probably get some different responses, but I don't think one needs to go to school or get a degree that says you are a 'specialist', you can call yourself that. I've seen people fly around the country and even come in from other country's to see a so-called specialist and go back home disappointed. Not saying there aren't some excellent well known physicians but I just don't hold much to that 'title' vulva specialist myself, tho it sounds impressive.

About the propylene glycol? yes that can be an irritant hon for some people and is in so many things, so who knows? For me it doesnt bother, but it does others no doubt about it.

Here are a few notes I have about it and you'll see why it is so widely used.

Propylene glycol:

It is an aliphatic alcohol and is classed as an alcohol. (prob. why it can irritate, yet some medications "MUST" have alcohol to penetrate to be effective. dt) It is used as a miscellaneous and humectant skin-conditioning agent, viscosity-decreasing agent, solvent, as well as a fragrance ingredient.

Since it can penetrate the outermost layer of the skin and carry the active ingredients into deeper layers of the epidermis, it is an extremely common ingredient in cosmetics and is found in a variety of products as well as medications.

In the cosmetic industry, propylene glycol is used in very small amounts to keep products from melting or freezing in extreme temperatures and assists the active ingredients in a product to penetrate the skin. (as in moisturizers, lotions etc.)

Propylene glycol further enhances the performance of Sodium PCA in absorbing and retaining moisture in the skin. It is a synthetic compound and some individuals may find that it irritates the skin if used in high concentrations.

And this is another article. (I think from the FDA)

"Propylene glycol is considered a safe and appropriate ingredient not just for cosmetic products, but also for ingested products like food and pharmaceuticals. It is on the US Food and Drug Administration's list of ingredients which are Generally Recognized As Safe (GRAS) and is recognized by the World Health Organization as safe for use.

There have been claims made that propylene glycol is an inappropriate ingredient for cosmetics and foods because it can also be used in products (such as antifreeze) which one would not want to consume. Such observations are well-intended but ultimately not very informative. It is ethylene glycol, for example, which is a more common ingredient in anti-freeze and which is, in fact, highly toxic. Simply because propylene glycol has many different applications does not make all the products which contain it the same.

Another strain of criticism of propylene glycol focuses on what is allegedly disclosed by the ingredient's Material Safety Data Sheet (MSDS). MSDS information can be found on the Internet, but rarely are viewers given any background or context on how to read one. An MSDS is a safety disclosure which instructs manufacturers and shippers on proper procedures for handling ingredients, for treating accidental exposure and for cleaning up spills in huge amounts.

Even the purest ingredients like mint oils have an MSDS. There is usually no single MSDS for an ingredient, but one for each different form or concentration offered by each ingredient supplier. For ingredients which could be shipped in a liquid or solid form, the MSDS for each form may differ significantly and each has little bearing on what properties the ingredient will have when combined with other ingredients into a formulation.

We feel confident that research and a long history of safe usage have shown propylene glycol to be a safe and appropriate ingredient in many pharmaceuticals as well as cosmetics."

So bottom line is up to you. Good luck hon.

Dee~

PS thanks Annie for the kudos, that was so nice of you.

Re: Atrophic Vaginitis (Annie)

Thanks again for the info.I did have a biopsy for LS and it came out negative last year. The doc says the skin still looks like that is what it is, being white. Can it develop more over time? The tamavate and anusol were the best remedy so far. I am now understanding the tamavate probably made my skin weaker, thus exposing me to more problems such as BV, dermatitis, and the harsh winter. I hope this is the problem because I can control it mostly knock on wood.I have thought about the LS biopsy and wondered if I should have another. I do remember he wanted to get the skin where it hurt the most, and I was not able to give a definitive spot it all hurt. Of course for the most part I am using the treatments for LS anyway.I have the mirena iud and have thought about getting it out, but the alternative of heavy periods and cramps is not good. I have tried all the forms of BC for the maintenence of the cramps. I make dh where a condom because I hate his sperm it burns. I still want at least another baby so I can't do anything too drastic yet.Are there any other bases that are non irritating that you have used?The coestra is estrogen (but not sure yet) I have a high potency, and regular form.There are some other compound creams that I use Comast, cocel, liphodydra. i am taking them in tomorrow at appt and find out what they are exactly.The symptons are still there but I have been up and around more. I know this is a slow healing, and I ma learning a lot more each bout I go through.My fear is this is more complicated and I need a vulva specialist outside my state and then the cost of that. I know I tend to get ahead of myself.One last thing... I have read in the V book about propylene glycol being a allergen irritant, and then saw it is in a lot of stuff including the tamovate cream. any experience with that?Any experience with cutivate cream?You have a lot of knowledge you should write a book!Thanks,Annie> HI Annie, > > I'm not familiar with the name Coestra HP.... but I'm thinking it's an extrogen of some type with the 'estra' in it. (might even be estradiol) and if it is that's good and I like that it's in a Crisco base so it should be mild. > > The Temovate steroid you mentioned is one of the strongest class one,of steroids so that's pretty potent hon (usually reserved for those with LS (lichen sclerosis) and if you don't have that I'm surprised you were given that as it can truly thin the tissue in a fairly short amt. of time. > > I'm glad to hear you were given the Locoid instead that's one of the lowest strengths of steroids similiar to a hydrocortisone (tho still a prescription) but it definitely is by far a much milder one. The very mildest would be an OTC hydrocortisone cream though. > > Just keep in mind that steroids are used for 'symptom' relief and if they let up (the burning, itch, inflammation etc.) it's time to taper back or possibly go off of them. > > I take it you are also using the Vagifem? That's an estradiol insert tablet of estrogen so that should help restore the vagina and the vulvar tissue as well but then how or when do you use the Anusol, oops I see you said you're alternating nights. Just wondering why you are using the Anusol? (also assuming you mean using it intravaginally). > > It's got an astringent quality to it (to shrink up hemmorhoids) and it sometimes is used intravaginally for someone with Lichen Planus (LP) as the vaginal canal itself can shrink or even fuse with adhesions so it's used there but I didn't think you had LP. I don't think it would hurt but just wonder if it's needed as well. > > It would seem to 'me' that using the estrogen cream if that's what coestra is and then the Vagifem intravaginally would be enough hon at least for tissue restoration and then the Locoid for pain relief. > > About using the gylcerin? That's often an ingredient suggested to stay away from (and especially non-oxynol 9), both are found in lubrications and both are known to irritate, (Definitely stay way from Non oxynol 9) but glycerin too might be irritating or even trigger a yeast infection. So it's just interesting that you find it soothing. Here's just one quote, > > " The two ingredients that most commonly cause irritation are Nonoxynol-9 and glycerin. Glycerin is a form of sugar. It's what makes many lubes taste sweet. Some women find that using glycerin in their vagina is an open invitation to a yeast infection." > > Hope you enjoyed the V book hon by E. it's a good one and probably my 2nd favorite (esp. for photos and diagrams) next to Vliets 'Screaming to be Heard'. > > Take care and hope things are improving for you hon, just my two cents worth. > > hugs> Dee~>**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**Our HOME page is http://groups.yahoo.com/group/VulvarDisordersto search our archives, files, articles, etc.***

[Guest guest]

ooops, sorry

I didnt delete the previous message and 'I' know better, duh.

Dee~