Re: Desquamative Inflammatory Vaginitis Lichen Planus Strep & Discharge

[Guest guest]

Hi ,

I just wanted to tell you - I really feel your isolation about

this. I am 23 years old and have had this for 1.5 years. I don't

know anyone my age who struggles with these problems. It is a

horrible condition to have.

Just wanted to ask you - did the clindamycin reduce the discharge

and then the discharge came back again? I am getting reduced

discharge from it right now, but I know that the relapse rate is high.

I have a lot of burning right now too. I never got itching - it might

be because I only have DIV and not lichen planus. There is another

option for you that you may want to let your doctors know about it. I

had tried using Anusol steroid suppositories (1% hydrocortisone).

This cleared up the DIV but when I got off of it, it came back. There

are some women who have used it for years - I did not feel comfortable

going this route, but you may want to consider it. Another thing -

have you had your lactobacillus levels checked? I had low

lactobacillus so I have been using lactobacillus GG suppositories by

Culturelle (www.culturelle.com). These have restored the

lactobacillus to normal which may help fight off your strep. One

thing I've read about DIV - even when they get rid of the DIV, the

lacto levels still remain low. I am thinking that we may need to

attack it by not only using clindamycin or steroids but also by adding

in lacto. I have also been using Multi-Gyn gel (www.multi-gyn.com) to

try to restore the pH to normal. Women with DIV have elevated pH

levels.

I, unfortunately, have not had success with homeopathics. I don't

know if it has another name besides Causticum (I think that's the only

name - in the UK and India, it is also called that). I was taking 3

drops 2 times a day. Did nothing for me, unfortunately!! I have some

info on Causticum at home - I will send it to you when I get home.

Also, I have some muscle tension as well that makes us more prone to

developing infections such as these. Do you think you may have this

as well?

Please feel free to email me privately if you need to talk about

this. It is severely devastating. I know what it's like to go to the

mirror and look to see how much discharge you have. Sexual

intercourse with my boyfriend is impossible as well as functioning day

to day. I pray that one day we will find relief from this condition.

I think if we support each other on this list, we may together find an

answer. I have given up on doctors - I've been to top specialists who

tell me use steroids. It's just not the route I want. Thanks for

posting your message - it's nice to know that there are other women

who have this as well.

Love,

Seema

[Guest guest]

-Seema

We are led to believe that " older " women get DIV but even though it

is a rare disorder I have had contact recently with another women who

is in her thirties but I must say you are the youngest with whom I

have had contact. I'm post menopausal and feel saddened that you

should have such a devastating condition at such a young age. Just

wish the medical researchers would take this up as it does push us to

the edge at times.

Clindomycin 2% initially I thought was a miracle come true. Within

days I had stopped itching, swelling of my vulva was down, vulval

fissures disappeared, soreness/redness and burning had reduced. The

real shock came when I realised that I no longer had discharge and

instead of constant outpour of discharge I was relatively dry. It

felt really great eight days after I started the treatment I seemed

to have a " cure " . Yes I was so happy. For the first time I actually

slept for a night, no longer jumped in and out of showers using the

water to get some relief from both itching and burning. In my second

week I went back to my Gyn and and told me the vulva looked much

better etc etc he did some more swabs just to make sure and told me

to come back in a week. This I did and he said sorry the

problems still exist we'll try another treatment and come back in two

weeks. I did and it was still in my vulva/vagina. By the way when I

was given the initial Clindomycin he also prescribed another product

which he said was an anal one but that I would have to use both (cant

remember the name of that one though) and I only used it the first

treatment. It seemed to him that until my whole autoimmune system

was healed these vulval conditions would be reoccuring. As I have had

a bad reaction to Estrogens patches, creams, pills, suppositories etc

I could not go that way. I tried Yam cream previously for two years

and really did not find any difference. So my Gyn who had followed

the recommendedations for the treatment of DIV and Lichen agreed that

his door would remain open but that I should move on to someone re my

immune system. That is where I am at present (absolutely nowhere).

My discharge is still with me but nowhere near as profuse. I was

taking for a long time Lactobacillus powder but no longer do. I

recall that my Gyn said my Ph was surprisingly near norm for my age

and stage in life think he was a bit surprised really.

I chose not to use the steroid treatments because there did not

appear to be any significant change when women were treated with

this. My Gyn absolutely agreed with this.

Seema a woman (in her 30's) from New Zealand which is off the east

coast of Australia (I am an Aussie) has contacted me and has talked

of the benefit of having a support network for women with DIV. I

think it could be a good thing as collectively we could share

information and keep each other updated on research and treatments

being trialled. It may bring other women out of their isolated space.

What do you think?

Healing hugs

-- In VulvarDisorders@y..., " seema_sura " <seema_sura@y...> wrote:

> Hi ,

> I just wanted to tell you - I really feel your isolation about

> this. I am 23 years old and have had this for 1.5 years. I don't

> know anyone my age who struggles with these problems. It is a

> horrible condition to have.

> Just wanted to ask you - did the clindamycin reduce the

discharge

> and then the discharge came back again? I am getting reduced

> discharge from it right now, but I know that the relapse rate is

high.

> I have a lot of burning right now too. I never got itching - it

might

> be because I only have DIV and not lichen planus. There is another

> option for you that you may want to let your doctors know about

it. I

> had tried using Anusol steroid suppositories (1% hydrocortisone).

> This cleared up the DIV but when I got off of it, it came back.

There

> are some women who have used it for years - I did not feel

comfortable

> going this route, but you may want to consider it. Another thing -

> have you had your lactobacillus levels checked? I had low

> lactobacillus so I have been using lactobacillus GG suppositories

by

> Culturelle (www.culturelle.com). These have restored the

> lactobacillus to normal which may help fight off your strep. One

> thing I've read about DIV - even when they get rid of the DIV, the

> lacto levels still remain low. I am thinking that we may need to

> attack it by not only using clindamycin or steroids but also by

adding

> in lacto. I have also been using Multi-Gyn gel (www.multi-gyn.com)

to

> try to restore the pH to normal. Women with DIV have elevated pH

> levels.

> I, unfortunately, have not had success with homeopathics. I

don't

> know if it has another name besides Causticum (I think that's the

only

> name - in the UK and India, it is also called that). I was taking

3

> drops 2 times a day. Did nothing for me, unfortunately!! I have

some

> info on Causticum at home - I will send it to you when I get home.

> Also, I have some muscle tension as well that makes us more prone

to

> developing infections such as these. Do you think you may have

this

> as well?

> Please feel free to email me privately if you need to talk

about

> this. It is severely devastating. I know what it's like to go to

the

> mirror and look to see how much discharge you have. Sexual

> intercourse with my boyfriend is impossible as well as functioning

day

> to day. I pray that one day we will find relief from this

condition.

> I think if we support each other on this list, we may together find

an

> answer. I have given up on doctors - I've been to top specialists

who

> tell me use steroids. It's just not the route I want. Thanks for

> posting your message - it's nice to know that there are other women

> who have this as well.

>

> Love,

> Seema