Re: A few quick questions!!??

June 10, 1999

Dear Lone,

Read your e-mail and I think that you shouldn't give up on the low oxalate

diet. You are still eating some foods that are high in oxalates, like soy

milk. I know it sounds terrible that we have to eliminate so many foods, but

I'll tell ya, it has certainly seemed to work for me! Some of the really bad

foods I will list below, and you should take calcium citrate supplements

while on the diet. Also limit your intake of Vitamin C to 250 mg/day, and I

know that you said you have taken dairy off of your daily " to eat " list, but

dairy products (1/2 cup with meals) help the oxalate diet to work as well.

Here's the list of foods to really avoid:

tea and coffee

chocolate

pecans

berries and berry juices

beans

peanuts and peanut butter

tofu and other soy products like soy sauce

grapes

rhubarb

tangerines

tomatoes

wheat germ

black pepper

beets

celery

green leafy vegetables: chard, spinach, kale, collard greens, dandelion greens

mustard greens, watercress, escarole, parsley

summer squash

sweet potatoes

eggplant

Good luck!

Patty

June 10, 1999

> Hello Ladies, Am a senior citizen; mid-seventies, so don't have the

same kind of " problems " you young ladies do; like periods, sex, (sigh****,

tears!) but do have the burning. Have been diagnosed as: VULVODYNIA.

> 1. What is the difference in VV and the Vulvobulitis (however you

spell it) Have seen at least half a doz. drs. None have a clue what to do; just

kept throwing more steroids at me; which made me worse; so I stopped that.

> 2. Is there anything any of you have tried, besides the AVEENO SOAKS,

HAVE ALSO TRIED EPSOM SALT, which both help for short time. Then if I'm real

raw, use little Vasoline; followed by CRISCO, (Yes, CRISCO SHORTENING) they both

help for 30 min. some times an hr. After urinating at night, rinse off with

clear water, then dry very easy; sometimes cool blow dry with hair dryer; put on

vasoline and Crisco again, and go back to sleep .

I use vaseline - including putting it on my pubic hair and wiping off as

much as possible. I think the hair irritates me.

Never put toilet paper next to my skin. The t.p. falls apart and leaves

little bits of paper on my skin which irritate me. I pull off an

appropriate amount, lay a sheet of kleenex on it and dampen it with a

squirt bottle and wipe with that.

I never use a washcloth to wash that area. I use my hand in the shower.

I use only Aveeno soap to wash it.

> 3. Do take l (lmg.) ATIVAN, which my rheumatologist prescribed to

help me sleep. He said alternate with AMBIAN (a sleeping pill) if needed. One

nite was sitting in the AVEENO sitz bath, and had taken the ATIVAN about 20 or

30 min. earlier and suddenly the pain stopped. I knew instantly it was the

ATIVAN. Told the GYN I was going to and he said: " Well, take it if it works, "

and has been prescribing it ever since.

If I have burning pain in the evening I take a Benedryl before going to

bed. It helps me sleep and also stops the pain.

> 4/ What does anyone who has the constipation problem, take for it? I

take COLACE 3, 4, or 5 each night; (a stool softner) and a couple of Herblax. (

a herbal laxative; a good one)If didn't do this, would never have a BM. Do

drink a lot of water.

I had problems with constipation for a year or so after my V-V set in but

it went away. Now I eat lots of cooked veggies and fruit - canned peaches

mainly, drained and rinsed. Sugar bothers me a lot.

> 5. Are any of you on the Low Oxalate diet; from what I read, doesn't

help much if any.

Yes, I am on it but I watch my food and have found that many of the oxalate

foods are okay if cooked. But I do have trouble with spices and citrus

foods. Tomatoes are okay if they do not have any spices (tomato sauce,

ketchup, etc.).

Cornmeal really sets me afire. As in corn tortillas.

I never use dairy after lunch because it leads to restless legs syndrome

when I go to bed. Cheese makes my ankles swollen but I counteract that

with cantaloupe. The peaches help too for that problem.

> Am limited on food anyway. CAn't use any dairy or wheat products, (allergic to

them) can't eat fresh peaches, strawberries, oranges, or drink any kind of fruit

drink. or any tomato product. they all set me afire! Use soy milk, spelt bread,

lots of corn tortillas. Can eat most cooked veggies; raw apples, pears,

bananas...rice or corn flake cereal, chicken or fish; limited beef & pork; give

me sinus headaches, which turn into infections real easy.

>

> 6. Does Anxiety make you worse? have tried to take Ambitripline; makes

me paranoid; also Remeron, which made me feel like was losing my mind..

I do not take any kind of stuff like that - fortunately I seldom have the

problem of anxiety.

> So woe is me......my life is certainly not very organized any more.

Many things can't do; but could be worse. Most of time am up and about; more

than lots can say, right?? so am grateful for my many blessings. and learn some

things from reading your posts. If anyone has any suggestions, please reply and

will thank you. Ione Scovel aoniel@...

>

> Hey, one more thing: any more senior citizens out there, who would

like to exchange posts?? Seems like WE are in the minority, for sure!!

Yes, I am 73. My Vulvodynia started in 1996 but with the help of the other

ladies in this group and others, I am coping much better than at first. I

have the burning - mainly when I eat something which I should not, and

extreme sensitivity in the vulva area - (pain on contact - but no visible

irritation.

Ora

taurusryc@...

June 10, 1999

Hi Ione, I am also a senior citizen. I'm 63 and still going strong

(except for the Interstitial Cystitis and Vulvodynia of course!) I have

been having some constipation since I started taking Calcium. At least

that's what seemed to make it worse. I also take a herbal laxative with

senna in it. I am on the I. C. diet and the VV diet. It doesn't leave

much but still I've managed to gain 15 pounds. I think from the

Elavil. I sit on ice packs frequently and just try to have a good

attitude. It's amazing what our bodies can get used to. Constant pain

is exhausting. Regards, Donna W.

> ione scovel wrote:

>

> Hello Ladies, Am a senior citizen; mid-seventies, so don't have the

> same kind of " problems " you young ladies do; like periods, sex,

> (sigh****, tears!) but do have the burning. Have been diagnosed as:

> VULVODYNIA.

> 1. What is the difference in VV and the Vulvobulitis (however you

> spell it) Have seen at least half a doz. drs. None have a clue what to

> do; just kept throwing more steroids at me; which made me worse; so I

> stopped that.

>

> 2. Is there anything any of you have tried, besides the AVEENO SOAKS,

> HAVE ALSO TRIED EPSOM SALT, which both help for short time. Then if

> I'm real raw, use little Vasoline; followed by CRISCO, (Yes, CRISCO

> SHORTENING) they both help for 30 min. some times an hr. After

> urinating at night, rinse off with clear water, then dry very easy;

> sometimes cool blow dry with hair dryer; put on vasoline and Crisco

> again, and go back to sleep .

>

> 3. Do take l (lmg.) ATIVAN, which my rheumatologist prescribed to

> help me sleep. He said alternate with AMBIAN (a sleeping pill) if

> needed. One nite was sitting in the AVEENO sitz bath, and had taken

> the ATIVAN about 20 or 30 min. earlier and suddenly the pain stopped.

> I knew instantly it was the ATIVAN. Told the GYN I was going to and he

> said: " Well, take it if it works, " and has been prescribing it ever

> since.

>

> 4/ What does anyone who has the constipation problem, take for it? I

> take COLACE 3, 4, or 5 each night; (a stool softner) and a couple of

> Herblax. ( a herbal laxative; a good one)If didn't do this, would

> never have a BM. Do drink a lot of water.

>

> 5. Are any of you on the Low Oxalate diet; from what I read, doesn't

> help much if any. Am limited on food anyway. CAn't use any dairy or

> wheat products, (allergic to them) can't eat fresh peaches,

> strawberries, oranges, or drink any kind of fruit drink. or any tomato

> product. they all set me afire! Use soy milk, spelt bread, lots of

> corn tortillas. Can eat most cooked veggies; raw apples, pears,

> bananas...rice or corn flake cereal, chicken or fish; limited beef &

> pork; give me sinus headaches, which turn into infections real easy.

>

> 6. Does Anxiety make you worse? have tried to take Ambitripline; makes

> me paranoid; also Remeron, which made me feel like was losing my

> mind..

>

> So woe is me......my life is certainly not very organized any more.

> Many things can't do; but could be worse. Most of time am up and

> about; more than lots can say, right?? so am grateful for my many

> blessings. and learn some things from reading your posts. If anyone

> has any suggestions, please reply and will thank you. Ione Scovel

> aoniel@...

>

> Hey, one more thing: any more senior citizens out there, who would

> like to exchange posts?? Seems like WE are in the minority, for

> sure!!

June 16, 1999

Hello Donna, FINALLY got a reply from ONE senior; well,

hallellluah!!(however you spell it!!) I've got it on you about 10 yrs.

Donna, but still do enjoy life; but this VV has sure knocked the props out

from under me.

Started the burning thing, in March ;98. tho't had kidney or bladder

infection so went to two differnet drs. said no sign. Then went to my GYN;

she had not a clue what to do for me. Finally talked me into letting her do

a biopsy....healed in about 2 wks; but she didn't find a thing. Said no

infection; very mild irritation. So......changed to another GYN, he was even

dumber than her. prescribed 3 or 4 different cotrisone creams which made me

worse) Heard about a dr. , in Phoenix, Ariz. (thru' internet) who

cured one girl and promises to cure anyone; a daughter and I few out there;

had no luck. Have located a new dr. in Dallas, DR. Cnningham, a young

woman who frankly admits she;s treated VV women, but never cured one. Says

it's mostly Trail & error; so woe is me; am still trying to figure out what

to do next.

Donna, what is Interstitial Cystitis and what is the IC diet? I

take Calcium Magnesium, but have a terrible constipaiton problem. Do take

Colace & Herblax tabs by Shaklee. They help. and sit on an ice pack a lot.

Also soak in Aveeno baths several times a day. Today dr. Cunningham put me