2 years of suffering

[Guest guest]

I also had the raw, swollen, burning vulvar, but I finally think I'm on the

road to recovery. What seemed to give me a little improvement first was

Cleocin vaginal cream, which I just used topically for about 2 weeks. I

saw some improvement but then got a yeast infection, which put me right

back...was given Diflucan (3pills over a week). I didn't use the Cleocin

again. He then told me to use Hydrocortisone cream 2%, which was a

prescription. Previously, other cortisones had burned, but this was OK.

Just a little topically. I didn't do it very long and now maybe on

occasion. During that time I went to a urologist because I was having very

frequent urination, every 1-1/2 hrs even during the night. She said that I

had very bad vaginal atrophy, which affects the urinary tissues too...I

think it even affects the bladder wall and the rectum. 5 gynocologists and

the vulvar specialist didn't think the atrophy was bad and didn't treat it.

I started using Estrace cream (covering the index finger from joint to end

on the whole area topically 3X/week and have been doing that now for about

6 weeks. I definitely see improvement. Now I can distinguish that there

are two kinds of pain involved in the burning. One is the skin and the

other is a nerve type pain. The skin is feeling a lot better, but I am

still getting intermittent nerve pain.

Oh, I also had my primary do blood test for blood serum estradiol and

progesterone levels. (I have been menopausal for 14 yrs and have been on

HRT...Premarin & provera for 11 years, which I would never do again and

then learned of " natural " meaning matching the body and have been using

compounded Estradiol at .350 2x/day and progesterone transdermal cream at

1/8 tsp. of 30 grams 2x/day. I order these through Madison Pharmacy in

Madison Wisconsin.) My test results showed low estradiol and high

progesterone, so I have increased the estradiol orally to .50 2x/day and

decreased the progesterone (I had raised it for several months to a 40

grams formula) I had been doing saliva testing at least once a year since I

started the natural hormones which the doctor didn't know how to read, so

she just went increased or decreased dosages per my request.

I recommend reading the book by Dr. Vliet " Screaming to be Heard "

which has been mentioned here and my attention was called to the serum

blood level testing that she recommends over the saliva testing.

This is a great site and has given me more help than the doctors and

suggestions to bring to them.

I also use yogurt externally morning and even just before my shower. I

don't put any soap or washcloth on the vulva... just flush it with clear

water. Use " Free " detergents, no fabric softeners, and sensitive skin Dove

or Basis soap on the rest of my skin.

I wish you success...this is a most awful thing to go through and the fact

that doctor's are so clueless is really upsetting.

I haven't worn slacks since it started unless they are VERY loose and I

carry a donut cushion to sit on.

I also have Fibromyalgia and think that it may contribute to particulary

bad times. The change in barometric pressure always affects any pain

syndrome.

Lynne in NJ

Message: 1

Date: Mon, 24 Sep 2001 15:56:38 -0000

From: jsndsparsons@...

Subject: 2 years of suffering - i need help

this is my story, 2 years ago i divorced my husband of 10 years. I

began a new relationship with my present husband, 6 weeks into our

physical relationship i decided that i better get on the pill, I

chose orthotricycline, a week after starting it i had painful urinary

tract burning and was given an antibiotic, shortly after that i began

having intense burning after sex, i thought i had a yeast infection

and tried treating it myself, didn't work. i went back and forth to

my family doc and my ob/gyn who kept looking at this discharge and

telling me it looked like yeast, yeast meds only made it worse. then

he began guessing and giving me other meds for trich. which I tested

neg. for. this went on until I was so raw and swollen and in so much

pain that i could no longer tolerate being touched. I was sent to a

derm. doc who then sent me to the U of MIchigan vulvar clinic. oh

some where in ther i managed to get pregnant, when i went to u of m

she said vestibulitis, come back after the baby we will give you

elavil, well i am nursing the little one so that wasn't possible. MY

pain has resided some at one point after the baby I even thought it

had gone, then it came back, right now i have very white discharge,

lots of it it is gross and imbarrassing, my vulva is usually red and

swollen, sometimes it moves inside the vagina. it stings no itching.

I have had so many problems with ut irritation that i have begun

seeing a urologist, who has found lactobacillis in my urine and

looking back thats not the first time. I got my hopes up only to hear

this morning that my vulvar irritation is not a common aspect of

lactobacillosis. I don't always have the burning after intercourse

any more but i always swell up and I have burning and discomfort

everyday.

I am mentally exhausted by this as well as physically. I have had

type specific yeast cultures also they are negitive!

anyone have any ideas things i should look for or ask for, I am

loosing hope.

dsp