Re: Need insights - vulvar itching and big time swelling

September 5, 2004

Irene,

Unfortunately I don't have any answers...I too am going through the

same thing. So far meds have only helped temporarily but the itching

seems to always come back. I hope someone has some input on this. I

know exactly what you're going through.

Kay

> Hi all,

>

> I'm pretty new here and have only posted a couple of times. I'm

> having some big time vulvar problems and really need some

> insights. I have IC and around late March it really started

getting

> better, then suddenly I woke up with vulvar itching - almost like

it

> was taking the place of the IC! Here's a rough sketch of what I've

> been through:

>

> Late March - itching starts on the insides of the outer part of the

> labia majora - gyn prescribes clobetasol proprionate cream,

> which works for 2 whole months.

>

> Late June - I'm on vacation and the clobetasol suddenly quits.

> Call doc from the road and he calls in scripts for Premarin cream

> to apply topically and Diflucan, just in case it's yeast (it's

not).

> Neither of them does a thing. When I got back gyn puts me on

> estradiol .5 mg twice a day, to take the place of natural

> hormones I was using - he thinks it's a hormonal problem since

> I'm in peri-menopause (age 51). I'm still taking natural

> progesterone, so as not to have unopposed estrogen.

>

> Late July - estrogen is doing nothing, so I get sent out to a

vulvar

> disease specialist, the only one in Phoenix where I live. He puts

> me on Elidel cream. It works right away for two weeks and

> suddenly quits. I itch like crazy.

>

> Aug - I go back to vulva doc and he tells me to do Elidel two

> weeks on/one week off, and see how that works. Also to use

> Aquaphor on the week off. He gave me an injection (ouch!) of

> some steroid to keep the itch under control, but it only kept it

> under control for about 2 hours. He also gave me Atarax 25 mg.

> to take at bedtime. It doesn't touch the itching, unfortunately,

but

> I think it is helping me with my few remaining IC symptoms,

> mostly just some sensation of having to pee at night when I've

> just emptied.

>

> That takes me up to now. After almost 2 weeks back on Elidel, I

> suddenly got swelling of the entire vulvar area, and the outside

> of the vagina, which wasn't a problem before, is all red - it is

> uncomfortable to sit, I feel my outer labia when walking and I

> even have some extremely unpleasant clitoral sensation when I

> have to sit for long periods in a certain position, like when

> driving. I went to the doc yesterday and he is having me take

> Aveeno sitz baths for the next few days and discontinue the

> Elidel. I'm to come back on Tues, but I don't know what's next.

>

> So right now I'm itching and uncomfortable sitting and I have a

> business trip w/ a long flight coming up next week.

>

> So - has anybody had anything like this? Can you offer me any

> suggestions or insights as to what might be the next steps?

>

> Thanks much,

>

> Irene

September 5, 2004

Oooh , it almost makes me hesitant to suggest anything - you've tried so much!

I know this sounds crazy - but I got tremendous relief (though it took about 3/4 weeks) from drinking Danactive, a probiotic drink found a health food stores. I drink one every day now and have maintained my relief, though I am not 100% cured. I never had a great deal of itching - some minor itching though - mostly swelling, red labia - too sore to sit on, peeling labial skin and general rawness.

I also found that .5 mg estradiol was of no help - but .75 made a BIG difference. ANother thing that helped tremendously, for me, was to avoid the progesterone as long as possible - I use it only 12 days every two months and I'm pushing my doc for extending that to three months. Positively, I know now, after having used only estrgoen alone - when I introduce progesterone, I get the pain and swelling that seems unexplainable. When I stop the 12 days, get a bleed and then my skin starts to revert to normal again. Ask your doc to up you to .75 if you can?

Before the swelling, did your genital area seem small and shrunken? If so, it may well be that you will be helped by getting the right hormonal dose into your body. I was so shrunken, it appeared as if the area was that of a child. Working out the right balance of hormones wasn't easy, but I do feel much better now with the .75 as well as the Danactive and twice a week applying a small amt of estradial cream to the genital area.

Good luck

Dusty

-----Original Message-----From: Irene Sent: Saturday, September 04, 2004 1:38 AMTo: VulvarDisorders Subject: Need insights - vulvar itching and big time swellingHi all,I'm pretty new here and have only posted a couple of times. I'm having some big time vulvar problems and really need some insights. I have IC and around late March it really started getting better, then suddenly I woke up with vulvar itching - almost like it was taking the place of the IC! Here's a rough sketch of what I've been through:Late March - itching starts on the insides of the outer part of the labia majora - gyn prescribes clobetasol proprionate cream, which works for 2 whole months.Late June - I'm on vacation and the clobetasol suddenly quits. Call doc from the road and he calls in scripts for Premarin cream to apply topically and Diflucan, just in case it's yeast (it's not). Neither of them does a thing. When I got back gyn puts me on estradiol .5 mg twice a day, to take the place of natural hormones I was using - he thinks it's a hormonal problem since I'm in peri-menopause (age 51). I'm still taking natural progesterone, so as not to have unopposed estrogen.Late July - estrogen is doing nothing, so I get sent out to a vulvar disease specialist, the only one in Phoenix where I live. He puts me on Elidel cream. It works right away for two weeks and suddenly quits. I itch like crazy.Aug - I go back to vulva doc and he tells me to do Elidel two weeks on/one week off, and see how that works. Also to use Aquaphor on the week off. He gave me an injection (ouch!) of some steroid to keep the itch under control, but it only kept it under control for about 2 hours. He also gave me Atarax 25 mg. to take at bedtime. It doesn't touch the itching, unfortunately, but I think it is helping me with my few remaining IC symptoms, mostly just some sensation of having to pee at night when I've just emptied.That takes me up to now. After almost 2 weeks back on Elidel, I suddenly got swelling of the entire vulvar area, and the outside of the vagina, which wasn't a problem before, is all red - it is uncomfortable to sit, I feel my outer labia when walking and I even have some extremely unpleasant clitoral sensation when I have to sit for long periods in a certain position, like when driving. I went to the doc yesterday and he is having me take Aveeno sitz baths for the next few days and discontinue the Elidel. I'm to come back on Tues, but I don't know what's next.So right now I'm itching and uncomfortable sitting and I have a business trip w/ a long flight coming up next week. So - has anybody had anything like this? Can you offer me any suggestions or insights as to what might be the next steps?Thanks much,Irene*****END OF MESSAGE/REMOVE WHEN REPLYING*****http://groups.yahoo.com/group/VulvarDisordersto search our archive or view our files.***

September 6, 2004

Dusty - thanks for your suggestions. I WAS taking a great

probiotic called Repleniss, but have been laying off of it for a

while because at first the vulva doc said I had cytolitic vaginosis,

and I had read some things that said a probiotic might make that

worse. Now I don't have signs of CV anymore after doing baking

soda douches, so could potentially add the probiotic back. I've

seen the Danactive in the store, just haven't tried it.

Because I have IC, I have to be really careful about changing

hormone doses. I think I'll asked to have my levels checked,

maybe I do need more estrogen, but I think it's better if I find out

through testing, though. It would be ironic if I got the vulvar

problem to resolve, but the treatment caused the IC to get worse.

It's a very delicate balance.

Before this swelling, nothing seemed wrong w/ the genital area,

no shrinking or anything like that. It was just itching, and before

the itch started in the spring, everything was completely normal.

I'm wondering how much help the Aveeno can be - I've been

doing the sitz baths for 4 days, and the itching is almost gone,

but it is still swollen - almost looks like the inner labia are

hanging down more than the outer, so I feel them when I walk

and sit. I can't believe anything happened suddenly that would

be structural in nature (fallen labia???) so am hoping that it is

just swelling that will go down. This is so confusing and difficult

to deal with.

Irene

> Oooh , it almost makes me hesitant to suggest anything -

you've tried so

> much!

>

> I know this sounds crazy - but I got tremendous relief (though it

took about

> 3/4 weeks) from drinking Danactive, a probiotic drink found a

health food

> stores. I drink one every day now and have maintained my

relief, though I

> am not 100% cured. I never had a great deal of itching - some

minor itching

> though - mostly swelling, red labia - too sore to sit on, peeling

labial

> skin and general rawness.

>

> I also found that .5 mg estradiol was of no help - but .75 made

a BIG

> difference. ANother thing that helped tremendously, for me,

was to avoid

> the progesterone as long as possible - I use it only 12 days

every two

> months and I'm pushing my doc for extending that to three

months.

> Positively, I know now, after having used only estrgoen alone -

when I

> introduce progesterone, I get the pain and swelling that seems

> unexplainable. When I stop the 12 days, get a bleed and then

my skin

> starts to revert to normal again. Ask your doc to up you to .75 if

you

> can?

>

> Before the swelling, did your genital area seem small and

shrunken? If so,

> it may well be that you will be helped by getting the right

hormonal dose

> into your body. I was so shrunken, it appeared as if the area

was that of

> a child. Working out the right balance of hormones wasn't

easy, but I do

> feel much better now with the .75 as well as the Danactive and

twice a week

> applying a small amt of estradial cream to the genital area.

>

> Good luck

> Dusty

September 6, 2004

Hi Irene,

I'm new here to. Well, I was here years ago but am back to hang

out a bit. I have this swelling and itching thing to. My swelling,

itching and pain was mostly related to my hormones and is controled

by monophasic birth control pills, the low oxalate diet, calcium

citrate, ox absorb, guai and a little touch of the IC diet. I can't

say what's caused your symptoms but I do know what stops itching fast

on most occasions. I learned this years ago on this list from either

Dee or Ora. This is going to sound strange but it really works. Take

a small pea size amount of Vicks Vapo Rub and put it in your palm.

Take the other hand and pass it under running water. Take the wet

fingers and rub it into the Vicks then rub it on the vulva where it

burns or itches. It's going to feel so cold it's almost hot then it's

going to, for the most part, stop burning and itching in a few

minutes. The really cold feeling will stop with the burning and

itching. The amount you put on you is so tiny no one can smell it

which is good.

BTW, have you tried the IC diet or marshmallow root for your IC?

Remember to many topical meds may make you worse!

Blessings,

Shirley.