RE: HPV treatment for VVS?

November 25, 2003

I'm not trying to rain on your parade, but what was

the date on the study you read? In the '80s and early

'90s, it was assumed the HPV was the cause of the

majority of vulvodynia, but later studies have largely

disproved this. Since, as you say, 75 to 90 percent of

the general population has been exposed, it's not at

all surprising that 77 percent of vulvodynia sufferers

would test positive. But is it the cause of their

pain?

A couple of years ago I went to a gyno who was trained

in the '80s, and he simply assumed HPV was the cause

of my redness, burning and itching, and he booked me

for an in-hospital procedure to have the top layer of

my vulva burned off with a carbon dioxide laser while

under general anesthesia. I asked him if it would

hurt, and he said, " Let's just say you won't like me

for a couple of weeks. " So I got a second--and then a

third--opinion, including a colpscopic exam and two

multiple-site biopsies. Both of those doctors told me

I had no HPV and no koilocytic changes.

I understand that your case may be different, since

the test came back positive. I sincerely hope the

Aldera proves to be a cure for your vulvodynia. But if

it doesn't, I'd carefully consider whether there is

benefit to more radical therapies. Some studies have

shown that topical HPV treatments such as laser and

5FU cream can be the CAUSE of vulvodynia.

Just my two cents.

Zig

November 25, 2003

I'm just backing up Zig on this one. The older studies did assume a

causal link between HPV and VV, but that was later disproven

(surprisinly rigourously) in a number of studies, particularly

involving those with primary VV and VVS. That is not to say that HPV

can't cause those symptoms - it can - but if it does, that means your

dx is HPV, not VV, as VV is a dx that comes after everything else is

ruled out.

> I'm not trying to rain on your parade, but what was

> the date on the study you read? In the '80s and early

> '90s, it was assumed the HPV was the cause of the

> majority of vulvodynia, but later studies have largely

> disproved this. Since, as you say, 75 to 90 percent of

> the general population has been exposed, it's not at

> all surprising that 77 percent of vulvodynia sufferers

> would test positive. But is it the cause of their

> pain?

>

> A couple of years ago I went to a gyno who was trained

> in the '80s, and he simply assumed HPV was the cause

> of my redness, burning and itching, and he booked me

> for an in-hospital procedure to have the top layer of

> my vulva burned off with a carbon dioxide laser while

> under general anesthesia. I asked him if it would

> hurt, and he said, " Let's just say you won't like me

> for a couple of weeks. " So I got a second--and then a

> third--opinion, including a colpscopic exam and two

> multiple-site biopsies. Both of those doctors told me

> I had no HPV and no koilocytic changes.

>

> I understand that your case may be different, since

> the test came back positive. I sincerely hope the

> Aldera proves to be a cure for your vulvodynia. But if

> it doesn't, I'd carefully consider whether there is

> benefit to more radical therapies. Some studies have

> shown that topical HPV treatments such as laser and

> 5FU cream can be the CAUSE of vulvodynia.

>

> Just my two cents.

> Zig

November 25, 2003

What happens in a vulvar colposcopy?

Dusty

HPV treatment for VVS?

I read an article tonight that said HPV is one of the causes of V.V.S.,

and it listed 5 references for that statement alone. I'm

wondering how many of you have ever tried HPV tests or treatment, and if

that worked for you....?

I had pain/irritation for 2 years and had doctor after doctor

poking/prodding and saying nothing was wrong. I finally went mental in

one

gyno's office and insisted on a colposcopy. I demanded it because I

needed an answer.

S

November 25, 2003

In a message dated 11/25/03 6:38:55 PM, VulvarDisorders

writes:

<< Anyway, I'm undergoing treatment with Aldara, and it is painful, but no

more than I've endured the last 2 years. >>

I used Aldara for a few months several years ago for a skin condition that

wasn't hpv or vv/vvs related. The cream didn't cause additional irritation for

me. It did clear up the skin condition, but did nothing for my vvs pain.

<<You NEED to catch this HPV virus before it advances.>>

Most strains of hpv do not advance to anything one has to worry about. It is

usually adequate to have regular pap smears for detection.

I hope treatment for hpv is your answer, but don't set your hopes too high.

There really is not link between hpv and vv/vvs.

Debbie

Tiger

" And Staples Girls are so extraaaaaavagant...I just don't have that much

driiiiivvvvvvel... " - Alan, 2/12/03

December 1, 2003

> I've been to 7 GYN's and one vulvar specialist and HPV was never mentioned at

any appointment

Tiger, I've been to 8 gynos in the last 2 years, and none of them EVER brought

up HPV until I brought it up. Until recently, there was

no easy commercially-available way to diagnose HPV, and since for many people

it's a temporary condition, doctors don't see any

sense in diagnosing it. They don't treat HPV. They only treat skin once it's

showing visible signs of HPV damage.

> How may I ask would that large a percentage in the US acquire HPV?

Unprotected sex at some point with

someone whose medical history was unknown?

Nah, HPV is transmitted even when a condom is used, and that's why everyone gets

it. All it takes is skin contact, like when your

labia touches his skin around the base of the penis that isn't covered by the

condom. HPV is highly contagious--2 out of 3 contacts

with an HPV-infected partner will result in HPV transmission.

> I also would think tht even if someone were careless at a young age in life

and

acquired this that it would have shown itself then.

Nah, in most cases it takes decades to progress to anything dangerous (cancer),

and many people can stop it with their own immune

system before the HPV ever does any noticeable skin damage. HPV is a very slow

virus. However, it has been found that most

VIN-III and CIN-III will progress to cancer after long enough, if untreated. In

my case, I started noticing symptoms 3 months after I was

infected; however the only reason I saw these changes was because I was looking

at the vulvar area daily because of other stuff that

he had done to me. It took a lot longer for me to realize that the vulvar

irritation was pretty constant, and longer still before it occured

to me that it could be HPV-caused and to get enough guts to demand a colposcopy.

On the visit just prior to that one, the gyno told

me I may have vulvodynia which might be something I would never get rid of. I'd

never heard of VVD, and so after I went home and

surfed online, it sounded like it's a big mystery disease and most of the web

explanations never distinguished between SKIN pain in

the vulvar area and MUSCLE pain in the vulvar area. My gyno never made that

distinction either.

> I was careful with my first " love " when I was 18 for the first year of our

relationship and he had been with someone before me... but I

am now almost 31 and have had vvs for a year now so if it were somehjting like

that for me then I dont think it would have taken 12

years to pop up.

Yes, it can definitely take 12 years or much longer to pop up. However, that

certainly doesn't mean HPV is the cause of YOUR

particular problems. BUT you can (AND SHOULD!!!) rule out HPV simply by getting

a biopsy or getting the Digene Hybrid Capture II

test.

> Also I always heard that if a woman had HPV then they would have an abnormal

pap, is this true?

No, definitely not true. The VAST majority of people who have had genital HPV

never get any kind of vuvlar or cervical damage from it.

For CIN that progresses to cancer, HPV is " necessary but not sufficient " . i.e.

you won't get cervical cancer without HPV, but it takes

others factors besides a simple HPV infection to get cancer on the cervix. For

VIN that progresses to cancer, about 50% of those

cases are caused by HPV, and the other half are caused by other vulvar

conditions such as lichen schlerosis. Very certainly, most

cases of vulvar HPV are invisible and do NOT result in cancer.

The reason I brought this all up is because maybe someone who is at the losing

end of the statistics, like me, might be helped. The

fact that most women who get vuvlar HPV do fight it off doesn't help me in the

least, when I am having vulvar pain for over 2 years and

every doctor keeps telling me there's nothing wrong, and that maybe it's VVD...

blah blah blah. I was one whose immune system

did NOT fight off the HPV before it started doing damage, and no doctors were

helping me either because they just wanted to call it

VVD and say sorry, good luck. I didn't even know that the Q-tip test had been

done on me by the 7th and 8th gynos until I saw those

medical records later. Who knows how many of my other gynos did it. I don't

know why doctors couldn't see the red areas on me

that were getting bigger and bigger--it was very obvious to me. The simple fact

is that none of my doctors thought there was any need

at all for a vulvar colposcopy, and if I hadn't INSISTED on it, I would still be

here wondering why I have VVD and why it doesn't go

away..

At this point, my vulvar pain is definitely linked to HPV, and I just want to

encourage other women who haven't considered that avenue

of testiing to do it. I am so sad that it took me this long to figure it out.

However, I'm also elated that I got the diagnosis before it was

something that required genital surgery to fix.

I'm sure most women are not looking at their crotch every day and would not

notice the color changes on themselves that I saw. I had

no lesions, just new red areas and new lumpier (but not wart) areas. If you

weren't looking at your vulva before the VVD started, then

you won't know if it's changing.

If you've already done HPV testing an know your vulvar pain isn't from HPV, then

I wish you the best of luck in trying to find the

solution for your case. Who knows, after everything I went through I may STILL

wind up with more vulvar problems after I get the HPV

fixed. But for now, I DO have a diagnosis that I never would've had if someone

hadn't encouraged me to ask for HPV testing. So I am

thankful, and I hope my experience might help someone else. All these repeat

doctor visits are understandable, and yet so ridiculous

and frustrating too. And costly (I'm not talking about money cost).

December 1, 2003

> The older studies did assume a

> causal link between HPV and VV, ... later disproven

> That is not to say that HPV

> can't cause those symptoms - it can - but if it does, that means your

> dx is HPV, not VV, as VV is a dx that comes after everything else is

> ruled out.

>

Yeah, the biggest problem in my case was getting the correct diagnosis. I don't

know why every gyno wanted to call it vulvar

vestibulitis or vulvodynia before they'd even done HPV testing. Hopefully if

any of you have been diagnosed with VVS/VVD but have

sore skin and haven't had HPV testing, you'll get that done before believing a

doc who tells you it might just " always be that way " .

December 1, 2003

> I'm not trying to rain on your parade, but what was

> the date on the study you read? In the '80s and early

> '90s, it was assumed the HPV was the cause of the

> majority of vulvodynia, but later studies have largely

> disproved this. Since, as you say, 75 to 90 percent of

> the general population has been exposed, it's not at

> all surprising that 77 percent of vulvodynia sufferers

> would test positive.

Actually, if 77% of VVD sufferers test positive at any one time for HPV, then it

strongly suggests THEIR vulvar pain is either caused

by or exacerbated by HPV. The reason being that while that high a percentage of

people will have genital HPV sometime during there

life, there is definitely not that many people who have it at any ONE moment in

time. It's more like 5-10% of people have genital HPV

at any one time in the U.S. (That 5-10% figure was extrapolated during studies

done at college campuses, by the way, not STD

clinics.)

I haven't read any studies that have disproven a link between vulvar pain and

HPV. However, it stands to reason that if vulvodynia is

only diagnosed AFTER hpv is ruled out, then of course their wouldn't remain any

link between HPV and VVD. I think the problem is

the instances where vulvodynia is diagnosed before HPV is truly ruled out.

Hopefully that will happen less in the future, but presently

it still does happen. At least it did to me.

> A couple of years ago I went to a gyno who was trained

> in the '80s, and he simply assumed HPV was the cause

> of my redness, burning and itching, and he booked me

> for an in-hospital procedure to have the top layer of

> my vulva burned off with a carbon dioxide laser whil

I can't believe a doc would order genital laser without testing to indicate it!

Gasp! Good for you for seeking second opinions. It is

easier now that we have the internet to refer to, but I still feel tinges of

guilt every time I went to a new doctor, thinking I must be some

kind of bitch for not trusting a person who graduated from med school.

> third--opinion, including a colpscopic exam and two

> multiple-site biopsies. Both of those doctors told me

> I had no HPV and no koilocytic changes.

Y'know, it could be possible that you might've had HPV irritating your skin, but

your body finally did clear it before the biopsies were

done. That's one explanation for the series of events you described, although

it could well have other explanations.

> Some studies have

> shown that topical HPV treatments such as laser and

> 5FU cream can be the CAUSE of vulvodynia.

Yikes, that is scary! I am still going to treat the VIN because it was

diagnosed via biopsy, but I will just have to hope I don't get side

effects from it too. I mean, I'm already getting side effects like tingling and

itching and more pain, but it goes away after a few days off

the Aldara. So, we'll see. Fingers crossed--I want to stop this virus from

going any deeper!

December 1, 2003

You're right - doc's need to consider that, but again, if it's not

a " classical " presentation of a problem, they tend to overlook it.

(Maybe doctor's need a " thinking outside the box " class - full year

long, sort of thing... :-) ) Based on my skin, I thought about

getting tested, but having only been with my husband, who's a virgin,

I don't have any method of transmission for genital HPV. (I know

I've had two other strains of it - plantar warts and flat warts but

those don't grow in the genital area.) But my skin irregularity

popped up after extended use of topical estrogen and is completely

and entirely consistent with the skin changes that topical estrogen

can produce - as confirmed by two doctors. :-) It is too bad that

more doctor's don't consider that possibility, and I hope, in the

future, as word of this gets out, that they do.

Have you had any productive leads on what you can do to deal with the

pain that it's caused?

> > The older studies did assume a

> > causal link between HPV and VV, ... later disproven

> > That is not to say that HPV

> > can't cause those symptoms - it can - but if it does, that means

your

> > dx is HPV, not VV, as VV is a dx that comes after everything else

is

> > ruled out.

> >

>

> Yeah, the biggest problem in my case was getting the correct

diagnosis. I don't know why every gyno wanted to call it vulvar

> vestibulitis or vulvodynia before they'd even done HPV testing.

Hopefully if any of you have been diagnosed with VVS/VVD but have

> sore skin and haven't had HPV testing, you'll get that done before

believing a doc who tells you it might just " always be that way " .

December 1, 2003

But my skin irregularity

> popped up after extended use of topical estrogen and is completely

> and entirely consistent with the skin changes that topical

estrogen

> can produce - as confirmed by two doctors. :-) >

>

,

What visible skin changes does the topical estrogen cause? I have

just heard that it builds us collagen, etc.... Also, how often do

you use it now (a couple of times a week)? How long were you using

it before you reduced it? I am using atropine in the AM, and

estradiol in the PM (both compounded in olive oil). I plan on trying

to get pregnant by the middle of next year, so at that time I would

have to stop anyway. Does your doctor feel that you will need to

use the estrogen always as maintenance to stay pain free? Also, the

topical antihistamines? Are you still able to have pain free sex,

if it is at least once a week? My daily pain is greatly

diminished, although I have not attempted sex yet! I am still too

afraid! Soon...

I also noticed that when my pain was really bad, I felt like I had

no lubrication (just on a daily basis - not sex, since I haven't had

sex anyway! I always felt very dry) As I am feeling better lately,

I feel like I am much more lubricated. I always feel my absolute

best during ovulation, when I have the most lubrication during the

month.

I also notice that I am not focused on the pain constantly like I

was, and that is helping me. Even though Spadt said that my

pelvic muscles are okay, I still feel like when I think about it too

much, I feel more pain and it feels like my muscles tighten. Does

anyone else feel this way?

Thanks, Maureen

December 1, 2003

Actually, it was two weeks since we had last had sex, and it went

just fine. No pain. And I don't mean, " it was like 10% pain level " ,

I mean, I noticed NO pain.

I'm using the topical estrogen once a day - at night. I use the

topical antihistamine once a day - in the morning. I expect that I

could get away with using them every other day, but going for too

long without either (like a week) would not work at this point. I

think Dr. Willems expects that I will have some sort of maintenance

level that I'll have to maintain - whether that's every other day,

once a week, or twice a month, I don't know. Probably the same with

the antihistamine. But that could just be my particular body and

it's issues with histamines. Perhaps the longer I'm gluten free the

more I'll heal, but I haven't noticed a very strong connection for my

personal case.

The skin irregularity I am referring to is a raised portion of skin,

probably two inches long, and an eigth of an inch wide, that's

rougher than the surrounding skin. No change in color at all between

it and the rest of the skin. And a skin tag or two - just small

little tags. Both doctors explained it to me that, when taking that

much estrogen (at the time it was developing, I was using the estrace

three times a day) you could get particular pockets of skin that over

produce collagen, and develop that texture. If it doesn't cause

pain - which is doesn't, at all - and it shouldn't cause pain, it's

not a problem. It's probably subsided a bit as I've reduced the

amount of estrogen I'm using, and goes down further if I forget to

use it for a while (two to three weeks). It was both my GP, who is

not treating the vvs, but following my progress somewhat, and my

vulvar specialist who noted that it looked perfectly normal given the

estrogen use, and not something to be worried about.

If you still feel reduced lubrication, and are not bothered by it, I

would suggest trying out Replens for a few months. I did that at the

beginning of my vvs journey, and it did really help comfort wise.

(Didn't change my pain level very much, but did eventually alleviate

the persistent daily dryness feeling.) I had to use it for probably

three months, and the initial discharge scared the crap out of me -

but it's normal, it's just dead skin cells sloughing off the vaginal

wall. But some women have noted that it irritated them, so if you're

very sensitive to these things (though the _new_ formulation does not

appear to have propylene glycol in it), it may not be a good choice

for you.

> But my skin irregularity

> > popped up after extended use of topical estrogen and is

completely

> > and entirely consistent with the skin changes that topical

> estrogen

> > can produce - as confirmed by two doctors. :-) >

> >

> ,

>

> What visible skin changes does the topical estrogen cause? I have

> just heard that it builds us collagen, etc.... Also, how often do

> you use it now (a couple of times a week)? How long were you using

> it before you reduced it? I am using atropine in the AM, and

> estradiol in the PM (both compounded in olive oil). I plan on

trying

> to get pregnant by the middle of next year, so at that time I would

> have to stop anyway. Does your doctor feel that you will need to

> use the estrogen always as maintenance to stay pain free? Also,

the

> topical antihistamines? Are you still able to have pain free sex,

> if it is at least once a week? My daily pain is greatly

> diminished, although I have not attempted sex yet! I am still too

> afraid! Soon...

>

> I also noticed that when my pain was really bad, I felt like I had

> no lubrication (just on a daily basis - not sex, since I haven't

had

> sex anyway! I always felt very dry) As I am feeling better lately,

> I feel like I am much more lubricated. I always feel my absolute

> best during ovulation, when I have the most lubrication during the

> month.

>

> I also notice that I am not focused on the pain constantly like I

> was, and that is helping me. Even though Spadt said that my

> pelvic muscles are okay, I still feel like when I think about it

too

> much, I feel more pain and it feels like my muscles tighten. Does

> anyone else feel this way?

>

> Thanks, Maureen

December 1, 2003

I'd be interested your answer about the topical estrogen, too, .

My vulva was shrunken to a child's size and so purple it was almost

blue. It took months of estrogen application , a.m. and p.m, along

with HRT, Benedryl topical and two months of OTC hydrocortizone. I am

still applying estrogen at least 4 times a week - at night only now.

Have only had one flare and that was directly attributable to a bleed

caused by use of progesterone cream.

Maureen - I absolutely feel less pain if I (1) don't get the mirror out

and look at my skin all the time,every day and stay busy. I guess