Re: vulvar vestibulitis - new diagnosis

[Guest guest]

Elle,

At least you have a sense of humor about it! I have DV and LS and if

weren't for my sense of humor, I'd be crying in my beer! Ah yes, the

good old Catholic upbringing! A real pain in the a-- in more ways

than one!!! About all I can suggest, right now, is to drink lots and

lots of water. That should dilute your urine so you don't have as

much burning when you go. Another suggestion, BOXERS COTTEN ONES. I

buy the little sleep sets as the boxers are roomier. Use the tops

for camisoles. As far as diet, I hear you! Chocolate, ah, sweet

chocolate! Unfortunately, I have had to cut it almost completely out

of my diet, as I am diabetic. WAIT A MINUTE, DV, LS, diabetes.

Isn't there something about 3 strikes and your OUT! I was out of it

a long time ago!! Never was much good at baseball! Take care. You

will find lots of useful info on this site about VV.

Ruth (Ruthiema)

>

> Ah, the fun, the joy. the burn.

>

[Guest guest]

In a message dated 10/23/04 2:51:15 PM, VulvarDisorders

writes:

<< My first gynecologist prescribed desoximetasone ointment (steroid

ointment) for three weeks. 3 weeks is up and the burning is still very much

here. >>

Hi Elle,

Prescription steroid creams do very little for vvs. The purpose is to reduce

the inflammation, but vvs inflammation is much more stubborn and doesn't care

to disappear in a few weeks. Using a steroid cream much longer than that you

risk thinning the skin/tissue and/or chemical burns. Neither of which does

much for one's vvs other than to make it worse.

<<I just started applying that - who knows what that will do?>>

Is it Lidocaine 5% ointment? If it is, try the Lidocaine Cotton Ball (LCB)

treatment. There's information about the treatment in the archives. Many of

us with vvs have had success with this treatment. Basically, you smear about a

half inch of the Lidocaine on a cotton ball and place it in your vestibule

where your trigger spots are every night before bed. The Lidocaine reapplies

while you sleep, reducing inflammation and retrains the nerves not to feel pain

from non-painful touches.

<<I've read that using that before intercourse can be helpful but, i would

think, if it numbs me, wouldn't it have the same effect on him? >>

As long as you rub it into your tissue well enough, it won't have a numbing

effect on him. You're just applying it to your trigger spots and you don't use

all that much. The Lidocaine 2% gel doesn't do much. The 5% ointment does

give some pain relief to women during sex. It never did a thing for me - it

just doesn't numb me. However, the LCB works well for me. You should apply it

5-15 minutes before sex. A lot of women prefer Emla cream (similar to

Lidocaine) and find it works much better. It has to be applied an hour before.

It's

not sold in the U.S. anymore (supposedly the manufacturer is coming out with

a new product) but you can buy it from an online Canadian pharmacy with no

prescription or have it made at a compounding pharmacy with a prescription.

<<I live in north carolina and i'm wondering if anyone knows of any support

groups here?>>

It seems to me someone on one of the vv/vvs lists mentioned one the other day.

<<any absolutely fabulous gynecologists with lots of experience with vulvar

vestibulitis?>>

I'm not sure about in NC. But you can check Tara's doctor list, I think her

url is in the the links part of the website. If not, you should be able to

find it in the archives. Also, call doctors and ask if they have heard of

vestibulitis, how they treat it and if they're willing to try treatments you

find.

<<any help with penetration - anything that seemed to make it bearable?>>

I can have a little uncomfortable to pain-free sex. I use Atropine cream and

the LCB. I don't have to use either every day anymore. Atropine is a

compounded cream that reduces inflammation by restricting blood vessels and it

disrupts nerve signals to the brain. It has the side effect of drying up the

arousal glands though, so it's important to use just a little. I now use it

once a

day every other day and right after sex. It eliminates post sex burning in

less than thirty minutes, no more post sex flares for me that last weeks. When

I first started using it, I used it twice a day, but after three months it

did upset my arousal glands ability to make lubrication so I cut way back. I

use the LCB now about twice a week.

Anyway, I used Atropine for seven weeks, during which time my inflammation

was going down and sex was becoming less painful. I would say my pain during

sex went from a 10 (my worse pain) to a 2 or 3. From the first night I used it

after sex, it eliminated post sex burning. After seven weeks, I added the LCB

along with the Atropine cream and had pain free sex a week later. Most women

using just LCB have found it takes a couple of months before they have pain

free sex. Although they have less post sex burning after a couple of weeks.

<<i'm trying calcium citrate, baths, cotton underwear, rinses after

urination....no relief thus far but i'm willing to be patient. Also trying the

low-oxalate thing>>

If your skin doesn't burn when you're going to the bathroom, you can probably

skip the calcium citrate, rinsing and low-oxalate diet. Some women find the

oxalates in their urine irritates the tissue more. But if it's not doing that

for you, you can skip those treatments. And if the oxalates do bother you a

little, some women find just drinking more water to dilute their urine helps

just as much as calcium citrate, rinsing and the low-oxalate diet. Other women

find a little Vitamin E oil to protect the tissue works just as well too. I

can burn sometimes when I'm really irritated after sex, but Atropine has

eliminated that.

Baths can irritate some women more than it helps with vvs. Other women find

they're helpful.

The trick to vvs and sex is finding something that keeps the chronic

inflammation at a comfortable level and something that eliminates post sex acute

inflammation. It's a good idea to stay away from steroids and to try

non-steroid

anti-inflammatories, eczema creams like Elidel or Protopic, Lidocaine, Benedryl

cream, etc... A lot of us had success with Vioxx too, it put me in a

semi-remission a few years ago for a couple of years after taking if for a

couple of

months. But I wasn't in a sexual relationship at the time, which is probably

why the remission lasted so long. It's been pulled from the market now, but

you might want to look into another NSAID, although I'd be leary about long

time usage. Which is why I chose Atropine and LCB instead of taking it daily

for

long term use. I also use Motrin 800-1800mg a day if I have more burning

from every day stuff like sitting on hard surfaces. But I only use it for a

week

or two at a time.

Something that interrupts pain signals to the brain can help too.

Anti-depressants like Elavil and anti-seizure drugs like Neurontin will

interrupt pain

signals. However, they come with side effects that a lot of women don't care

for. Plus with Neurontin - the high dosage that is needed has not been studied

for long term usage and at least one woman on the vv/vvs list who is in her

20's has lost bone density from taking it. My advice would be to try some of

the topical treatments first. And never ever use an OTC yeast creams.

And you might want to search the archives for Arline's posts on gluten

sensitivity.

One more thing, did you use a topical yeast medication or take an antibiotic

shortly before your vvs symptoms showed up?

Debbie

Tiger

[Guest guest]

Elle,

Most non-useful advice I got - "follow this low oxalate diet". Gyn handed me a paper with a list of things and said do this for a month and you'll be better. The low oxalate diet had nothing to do with anything conerning my VV. I did, however, begin to keep a food and activity journal of EVERYTHING I ate and did in a given day and I learned from THAT painstaking procedure that oatmeal, almonds, walnuts and peanuts - but not peanut butter (?) increased my irritation. I also learned however, that if I increase my water intake drastically, most things I eat don't bother me too much. Lots and lots of water. I suppose that it dilutes the urine enough that it doesn't burn already inflamed skin. I'm guessing that a mild food reaction (allergy?) the the products mentioned above probably created some of the burn to begin with.

I incorporated oral antifhistimines and topical antihistamines. These two inclusions were extremely helpful to me, and I could see an improvement after beginning their use.

I saw an allergist (chemical) and took all my personal care products with me to my appointment. I was tested for the "known" allergens in the personal care products I used and was found to be quite allergic to a number of things I was using on my body, like my bar soap, shampoo, creme rinse/conditioner, face cream , OTC antibiotic creams (some of which I had used on my vulvar skin thinking I had a infection that nobody was diagnosing), Eucerin cream - a very standard cream used as a base for some medicines and even the dyes (yellow) in my medicines. Once I excluded these items I could see an improvement.

My hormones (thyroid, estrogen and progesterone) were not in sync and we have been working at striking the perfect balance on this. Things are definitely better at my current doses, but I still need to be fine tuned.

I will offer one other thing that has really decreased my pain level - though I don't know why or how. I saw an advertisement on TV about Danactive , a probiotic drink that is supposed to improve our immune systems, intestinal systems and all over general health. Since I have a long history of stomach problems I decdied to give this a try - not even thinking in terms of the VV problem. After about a month of drinking this drink daily, I realized that I was not in constant 24/7 pain anymore and I felt improved and the skin looked improved. My gyn was impressed as well, noting that my white cell count was much better in the vaginal swabs she took. Since the time I realized I was doing so much better, I stopped using all the daily topicals (antihistamine, steroid -1%, estrogen and testosterone, which I had gotten compounded in olive oil).

Estrace, applied topically has helped some, but it tends to make me spot (I guess because I also use Estrogen patches).

I stopped using Always pads and I stopped wearing pants that were anywhere snug at the crotch.

Each of these measures helped to reduce inflammation and pain -though none of them got overnight results. It's a long process and quite often a frustrating one. You can feel better, you just have to keep at it.

Good luck

Dusty

..

-----Original Message-----From: lsacks29 Sent: Saturday, October 23, 2004 11:04 AMTo: VulvarDisorders Subject: vulvar vestibulitis - new diagnosis

Ah, the fun, the joy. the burn. I was diagnosed with vulvar vestibulitis a few weeks ago and have the typically "classic" symptoms - constant burning, q-tip spot sensitivity, pain during intercourse, etc. As I know you all are aware, it's incredibly frustrating. I'm 26 years old, in my first sexual relationship in 2 years, and that has obviously come to an abrupt halt. Already having issues with orgasm due to medication and emotional issues due to catholic guilt, this lovely new diagnosis adds yet another fun layer. My first gynecologist prescribed desoximetasone ointment (steroid ointment) for three weeks. 3 weeks is up and the burning is still very much here. I went to another gynecologist who recommended lidocaine. I just started applying that - who knows what that will do? A numbing effect, if I'm lucky. I've read that using that before intercourse can be helpful but, i would think, if it numbs me, wouldn't it have the same effect on him? not a good thing, surely. of course, I want a guarantee that this will all fall into the backdrop of my life and become an interesting story i tell girlfriends over a few drinks. right now, though, it's a real pain. quite literally. And i'm hoping someone or many someones, can answer a few questions....I live in north carolina and i'm wondering if anyone knows of any support groups here?any absolutely fabulous gynecologists with lots of experience with vulvar vestibulitis?any help with penetration - anything that seemed to make it bearable?success stories would be highly encouraging at this point!!any homeopathic help that really seemed to have an impact - i'm trying calcium citrate, baths, cotton underwear, rinses after urination....no relief thus far but i'm willing to be patient. Also trying the low-oxalate thing...but i really love chocolate, fruit, coffee, so would love it if someone told me that that was a bunch of nonsense. Those are my questions for now...I would really, really appreciate any help, guidance, hope. My thanks - and best wishes to all of you.elle. *****END OF MESSAGE/REMOVE WHEN REPLYING*****http://groups.yahoo.com/group/VulvarDisordersto search our archive or view our files.***

[Guest guest]

debbie tiger,

just wanted to say that your whole message was very helpful and

illuminating; now why can't we get the damn doctors to say the same

sort of things????

kay