Re: First Time Post -- Need Help

[Guest guest]

Sorry you have to be here!. I had this to, you are not alone. Have you tried

sitting on frozen pies? I feels great. Put Estrace cream on 2 times a day to

build up the tissue. Low oxolate diet, purfume and dye free laundry soap,

cotton underware, loose clothing, and rinsing after urination helped me. Sue

First Time Post -- Need Help

>

>>

>Then, I had sex two weeks ago. Sex did not hurt, but the day after

>was excruciating. When the pain wouldn't go away after a day, I went

>to the emergency room where I was tested again. No bladder infection

>and no yeast infection. They gave me another stronger steroid cream

>which did not help at all. During my next visit to the ob-gyn, she

>said that the steroid cream had thinned my skin, so she gave me an

>estrogen cream to use. The estrogen cream has helped with the

>burning that I felt when I urinated or wiped, but I can't get rid of

>the constant pain and the need to urinate. The pain exists no matter

>whether I am sitting, standing, walking or lying down. It is always

>there.

>

>I live in Columbus, Ohio, and could really use some help in locating

>a good ob-gyn who knows and understands these problems. I could also

>use some advice for anyone who experiences the same constant pain and

>what you have tried that has helped with the pain.

>

>I'm getting married in June and my fiancee has been as understanding

>as he can be, but I can't imagine walking down the aisle in so much

>pain. I can no longer find the strength to even plan the wedding.

>

>Please help me.

>

>

>

>

>

>

>**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**

>

>Our HOME page is http://groups.yahoo.com/group/VulvarDisorders

>to search our archives, files, articles, etc.

>

>***

[Guest guest]

You don't say where your pain is. Is it all over the vulvar skin or just

in certain areas?

Have you had blood tests to see where your hormone levels are. Our archives

give instructions on when testing should be done. Our hormones call be all

screwed up no matter what age we are.

Can you refrain from washing your hair in the shower and having those

chemicals (from the hair products) running down your body and onto the

vulvar skin? get out of the tub/shower and wash it in the kitchen sink if

you can. If you can't, kneel down over the tub to wash it. Shampoos and

other hair products have some pretty serious chemicals which can affect our

skin - and cause serious allergic reactions. Also, don't put any soap on

the vulvar skin, especially any soap with dye or perfume in it. Try some

of the soaps at the health food stores - look for dye and perfume free, with

as few chemc ials as possible. If there is an allergic reaction going on -

it will take several weeks to notice a difference in the burning.

Do NOT wear Always Sanitary Napkins. Try the all cotton ones from health

food stores.

If you haven't already done so, check your birth control pills out on the

internet - check for ingredients and for percentage of progesterone to

estrogen. You may be getting too much progesterone and not enough

estrogen.

Tell your doc you've joined a sjupport group and a number of the women with

the various forms of this disorder have low normal thyroid function or are

outright hypothyroid. Google hypothyroid symptoms and see if you have any

of the symptoms - but even if you don't, get yourself informed as to what

testing should be done so as to rule it out in your case. Also tell your

doc that you would like to have a script for topical estrogen cream to be

applied externally only for now) to see if you can rebuild the vulvar skin.

If she argues tell her that this is usually the first line of defense for

women with this disorder and you really need to try it so that you can get

out of pain. Remember though that it took you a while to get into this

shape so it won't resolve your issues overnight - it will take weeks. (This

is also why it is important to sleep without bottoms so that you can apply

this cream and not have pajamas run it off.

Try to sleep with no bottoms to give the area time to heal and breathe. If

you feel you must wear something, buy the largest pair of mens COTTON

pajamas you can find and sleep in that DO NOT SLEEP IN POLYESTER, SILK,

RAYON BOTTOMS - NO AIR AT ALL GETS THROUGH TO THE GROIN AREA.

Keep a diary. At the end of every day, rate your pain on a scale of 1-10

with 10 being the worst. INclude EVERYTHING in this diary, food, drinks,

meds, activities. As time goes on, you will become adept at noticing

patterns and can begin to eliminate things that cause you increased pain.

For example, after almost 5 weeks or so of doing this, I noticed that on

pain days of 7 or more I had eaten oatmeal!!! I also noticed that the day

after I drank wine I always had elevated pain days. I noticed that I would

have increased discharge using progesterone and this discharge would really

leave my skin irritated. So I backed off progesterone to every 60 days.

And so on and so on and so on. It is an invaluable tool for ferreting out

what is happening.

I believe that we have this disorder not because one thing went wrong in our

most private area, but that a number of things - over time- have gone wrong

and gone uncorrected and BAM - one day enough was enough and there it is -

chronic vulvodynia. Few of the women on this list can nail their disorder

down to one single cause so it takes a lot of perserverance and vigilance to

detect how we can make it better while we're waiting for the docs to figure

it out. (Which they may never be able to do given the ghazillions of

symptoms and differences between the women who suffer with this. Its like

treating a moving target!).

That's all I can think of right now.

Keep us posted

I've been where you are and little by little have come a very long way in

pain reduction, so though it seems impossible do try to be patient.

Dusty

First Time Post -- Need Help

I don't know where to begin my story, but I am in pain 24/7 and will

be asking to take a leave from work because I can't function in any

of my daily activities. The pain started about two and half months

ago, but was very tolerable. It started with the feeling that I

always needed to urinate. I do not have a history of yeast

infections or bladder infections, so I was not sure what it was. I

figured it was a side effect of the birth control pill that I had

begun six months earlier.

My ob-gyn treated me for a UTI then a yeast infection, even though

both tests were negative. Then she started me on a steroid cream

thinking that my skin had become inflamed from the other treatments.

The steroid cream seemed to work at first even though the urgency to

ur

[Guest guest]

Thank you so much for your post. My pain fluctuates between the

left and right side of my vulva. I saw a new ob-gyn yesterday who

agreed that my symptoms could be a result of the birth control

pill. I stopped taking the pill about two months ago. She gave me

a prescription for Premarin estrogen cream though I read in these

posts that Estrace is much better. She ran the other typical tests

so we are waiting on those results. If they all come back negative,

she wants to do a biopsy in two weeks. I'm keeping my fingers

crossed that the pain will eventually go away or at least allow me

one day to resume a normal sex life with my soon-to-be-husband.

>

>

> You don't say where your pain is. Is it all over the vulvar skin

or just

> in certain areas?

>

> Have you had blood tests to see where your hormone levels are.

Our archives

> give instructions on when testing should be done. Our hormones

call be all

> screwed up no matter what age we are.

>

> Can you refrain from washing your hair in the shower and having

those

> chemicals (from the hair products) running down your body and onto

the

> vulvar skin? get out of the tub/shower and wash it in the

kitchen sink if

> you can. If you can't, kneel down over the tub to wash it.

Shampoos and

> other hair products have some pretty serious chemicals which can

affect our

> skin - and cause serious allergic reactions. Also, don't put any

soap on

> the vulvar skin, especially any soap with dye or perfume in it.

Try some

> of the soaps at the health food stores - look for dye and perfume

free, with

> as few chemc ials as possible. If there is an allergic reaction

going on -

> it will take several weeks to notice a difference in the burning.

>

> Do NOT wear Always Sanitary Napkins. Try the all cotton ones from

health

> food stores.

>

> If you haven't already done so, check your birth control pills out

on the

> internet - check for ingredients and for percentage of

progesterone to

> estrogen. You may be getting too much progesterone and not enough

> estrogen.

>

> Tell your doc you've joined a sjupport group and a number of the

women with

> the various forms of this disorder have low normal thyroid

function or are

> outright hypothyroid. Google hypothyroid symptoms and see if you

have any

> of the symptoms - but even if you don't, get yourself informed as

to what

> testing should be done so as to rule it out in your case. Also

tell your

> doc that you would like to have a script for topical estrogen

cream to be

> applied externally only for now) to see if you can rebuild the

vulvar skin.

> If she argues tell her that this is usually the first line of

defense for

> women with this disorder and you really need to try it so that you

can get

> out of pain. Remember though that it took you a while to get

into this

> shape so it won't resolve your issues overnight - it will take

weeks. (This

> is also why it is important to sleep without bottoms so that you

can apply

> this cream and not have pajamas run it off.

>

> Try to sleep with no bottoms to give the area time to heal and

breathe. If

> you feel you must wear something, buy the largest pair of mens

COTTON

> pajamas you can find and sleep in that DO NOT SLEEP IN

POLYESTER, SILK,

> RAYON BOTTOMS - NO AIR AT ALL GETS THROUGH TO THE GROIN AREA.

>

> Keep a diary. At the end of every day, rate your pain on a scale

of 1-10

> with 10 being the worst. INclude EVERYTHING in this diary,

food, drinks,

> meds, activities. As time goes on, you will become adept at

noticing

> patterns and can begin to eliminate things that cause you

increased pain.

> For example, after almost 5 weeks or so of doing this, I noticed

that on

> pain days of 7 or more I had eaten oatmeal!!! I also noticed that

the day

> after I drank wine I always had elevated pain days. I noticed

that I would

> have increased discharge using progesterone and this discharge

would really

> leave my skin irritated. So I backed off progesterone to every

60 days.

> And so on and so on and so on. It is an invaluable tool for

ferreting out

> what is happening.

>

> I believe that we have this disorder not because one thing went

wrong in our

> most private area, but that a number of things - over time- have

gone wrong

> and gone uncorrected and BAM - one day enough was enough and there

it is -

> chronic vulvodynia. Few of the women on this list can nail their

disorder

> down to one single cause so it takes a lot of perserverance and

vigilance to

> detect how we can make it better while we're waiting for the docs

to figure

> it out. (Which they may never be able to do given the ghazillions

of

> symptoms and differences between the women who suffer with this.

Its like

> treating a moving target!).

>

> That's all I can think of right now.

>

> Keep us posted

> I've been where you are and little by little have come a very long

way in

> pain reduction, so though it seems impossible do try to be patient.

>

> Dusty

>

>

>

>

>

> First Time Post -- Need Help

>

>

> I don't know where to begin my story, but I am in pain 24/7 and

will

> be asking to take a leave from work because I can't function in

any

> of my daily activities. The pain started about two and half

months

> ago, but was very tolerable. It started with the feeling that I

> always needed to urinate. I do not have a history of yeast

> infections or bladder infections, so I was not sure what it was.

I

> figured it was a side effect of the birth control pill that I had

> begun six months earlier.

>

> My ob-gyn treated me for a UTI then a yeast infection, even though

> both tests were negative. Then she started me on a steroid cream

> thinking that my skin had become inflamed from the other

treatments.

> The steroid cream seemed to work at first even though the urgency

to

> ur

>