Vestibulitis and VV

[TaniaF]

Hi I' m new to this board and I have a couple questions that you ladies may be able to help with.

My GYN doesn't give me a name as a diagnosis other than I have inflamed vulvar tissues. To me, it looks like a red ring around the inner labia near the vagina. Not to be funny, but like "ring around the collar". Also my urethra gets sore to touch.

He prescribed steroid creams like Clobesterol and Mycolog--but these only help a little and they give me a feeling of urine retention. Baby ointments like Balmex soothe only a bit.

I printed up the low oxalate diet which I will start.

Cold water washes after urinating makes me burn worse. It must be warm water. Any thoughts about that.

The only other thing the GYN prescribed is Estrace Cream as I am 52 and menopausal. I also have fibromyaligia, heard it may be related.

Is there anything else that I should insist from my doctor?
Any other self help measures to stop the burn? It is chronic and so annoying. I have read about the soap and comfortable clothing.

Thanks friends,
T

[jala]

I had it very bad and still have it on occasion. Mine is usually caused by one of 2 things: 1) irritation from contact (ie. soaps, abrasion, underwear, etc.) and/or 2) diet.

1.Irritation from contact - The easy way to tell if this is the problem is to go bare for a day. If you feel better, something you are coming in contact with is probably bothering you. I cannot use any soaps, not even Dove. I use Neutrogena Extra Gentle Cleanser (very expensive).

2. Diet - The easy way to tell if this is the problem is to keep a food diary. I use the one on the Dr. Phil website. Every time you have a burnout, try to figure out what you ate that is now in your digestive tract. I usually have pain about 2 days after I eat a trigger food. Once it passes, I can tell it is gone. I take calcium citrate and prelief to try to curb the effects of potentially dangerous foods. This helps me control it.

When I get a burnout, I take a pain pill, drink baking soda water and/or take a prelief. The pain pill helps me get through it and the baking soda and prelief adjust my body's acidity. I also take Benedryl at night to try to ease the pain and sleep. Sometimes these things works, sometimes not.

What always seems to help (at least temporarily) is to apply a very, very Hot compress (clean washcloth only). I hear people suggesting cold, but hot helps me - the hotter the better (short of searing myself).

I would be interested to know what works for you. Jala.

[poetgirl]

Hi Tania,

I don't know how being menopausal affects symptoms for women with VV/Vulvodynia. I basically have what you have, but I'm 33 and what my gynecologist did was put me on a birth control regimen where I only get my period 4 times a year, since the hormone changes during my cycle were triggering vulvar inflammation. That has helped me enormously. I have heard Estrace helps menopausal women; hopefully it will help you.

I take 1200 mg of calcium citrate daily, and cold water works for me if I do have burning after urination. the low oxalate diet may also help you. There are certain foods I know to avoid, but for the most part I don't have too much of a problem with foods. If the burning is really annoying, I will take a lukewarm sitz bath with baking soda. Some women prefer to drink a baking soda and water solution but I can't tolerate that, so I'd rather do the bath.

My gynecologist prescribed betamethasone valerate cream (it's steroidal) for me which works fine, but I've also found that the over-the-counter Gynecort works well too. I try not to use it more than a few days in a row because steroids can cause tissue thinning, which can aggravate symptoms. I sleep at night without panties to encourage air flow and reduce any irritation/inflammation.

Don't know how helpful that is, but hopefully you'll find some treatments that will ease your discomfort.