Re: Treatment questions - PLEASE HELP!

[Guest guest]

Liz,

Sounds like you saw Kellogg-Spadt. Am I right? I suspect that it was

her b/c I've seen her and she prescribed the same thing. The Estrace

did/does help, but unfortunately the Capsaicin didn't. However, I have a

friend who was treated by and the Capsaicin REALLY helped her. She's

now in complete remission. So, it's definitely worth a shot. Hopefully it

will help you. Good luck!

Treatment questions - PLEASE HELP!

> Hello all! I finally went to someone who appeared to

> know what she was talking about, but want to check it

> out with all of you, since you seem to know more than

> the doctors!

> I was put on estrace cream for 12 weeks. When those 12

> weeks are over, she would like me to use capsaicin

> cream. She said it is VERY painful - it's a base of

> chili peppers, but that it works by reabsorbing

> Substance P. She's had a lot of success with this.

> Anybody done this? did it work? Anyone know

> information that I should know before making this

> decision? Thanks so much for any help you can give!

> liz

[Guest guest]

The National Vulvodynia Association will provide you with a list of doctors who treat these disorders if you join as a member (I think it's about $37 for a year). Their Web site is www.nva.org and it has the form to complete. I did this and they sent me the information within just a few days.

Beth

Susockwell@... wrote:

.. BTW, does anyone know if any site keeps a comprehensive list of drs. who treat vulvodynia and other vulvar disorders? Thanks! -- Suzy I am trying to find that out, too. For so many years all the doctors and even gynecolgists have made me feel like if I just had sex more often then my vulvar problems would go away, or that I must have been molested as a child and I need therapy.......sheesh! Now that I have more information on it I won't feel so strange about calling around to different gynecologists or even dermatologists in the area to see if they treat vulvodynia. I am so glad to be talking to other women who know what I'm going through. I just got some information from The Vulvar Pain Foundation and I think they have some great data. I need to pay $40, though, it looks like, to join the group, get the doctor lists, and all sorts of other perks. It's amazing, this VP Foundation is headquartered in a town near mine in North Carolina, so hopefully I will be able to join one of their groups locally. I tried to call and get past having to go through snail mail for all of this info but that didn't work. I left a message on the phone and a girl called me back and asked for my address yesterday and TODAY I got more info in the mail from them. They are very quick! Has anybody else on this list become a member of the Vulvar Pain Foundations Network Membership for $40? I did read that if you are experiencing extreme financial hardship and you tell them that they will let you give what ever you can at the time, and you can still become a member. There is also a lot of info on their website Welcome to the Vulvar Pain Foundation's Website . Love, Suzette *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Hey there,

I'm the one with the list on my hard drive of vulvar specialists, although I

agree that joining the NVA, or VPF is a good idea. I plan on joining the

NVA as soon as I have 40 bucks to send them.

What state do you live in? I also have a list by country too. Let me know

and I can cut and paste your state or email you the whole list if I dont see

any one for your state on the list.

Bunny

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Suzy,

What state are you in? I have a list of doctors by state that treat vv. I

can cut and paste the info for your state, or email you the whole list if

your state isnt listed so you can find a doctor in a state nearby. I also

recomend becoming a member of the NVA, or VPF as well. I am told that they

have lists of vulvar specialists as well. I plan on becoming a member of

the NVA as soon as I get $40.

Bunny

----Original Message Follows----

BTW, does anyone know if any site

keeps a comprehensive list of drs. who treat

vulvodynia and other vulvar disorders? Thanks! --

Suzy

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

What state do you live in? I also have a list by country too. Let me know and I can cut and paste your state or email you the whole list if I dont see any one for your state on the list.

Bunny

OH, this is Good! I'm glad you wrote because I am going to try to get a lot of things done today to set up helping me get better from this vulvodynia thing.

I live in North Carolina near Greensboro. I would love to see what is on your list.

I hope that since I live near the woman who started the Vuvar Pain Foundation that she will have taught some doctors around here a few things and I can go see them.

I haven't been able to talk to that woman yet , though. So today I am joining the VPF. Their dues are $40 but if you don't have it they let you join anyway, and you can pay when you can. Vulvar Pain Foundation Membership

I haven't looked into the NVA yet.

I'm getting ready to go sit outside and let the sun shine on my genitals. I hope that helps! I did that yesterday and I've been using the spray bottle of water after urinating, and then putting vasoline on the itchiest parts. I also quit taking my Vit C (I read that was a big no no for vulvar pain sufferers) and Calcium and Magnesium supplements for awhile. I'm taking Guaifenesin (very helpful) and I think with the other vitamins it was just too much for that vulva area to handle. I'd like to start the Estrace, too.

My doctors don't seem to know much about it. They like Premarin.

I'm going to get some Acidophilus today with some other Probiotic stuff. I guess I should go get some yogurt, too!

I have been reading your posts about your surgery. It sounds very painful.

I know you had tried a lot of things before you had the operation. I really feel for you!

I had two jaw surgeries in the past two years and surgery is ROUGH.

I have been reading a lot about Celiac problems, too, and wondering about that.

I would never know to check all this without the computer.

I have quit eating much sugar at all and I've cut waaaaaaaaaaaay back on the carbohydrates and I'm drinking tons of water. I should start losing some weight!

Thanks for listening to me!

Love,

Suzette

[Guest guest]

In a message dated 6/28/2001 4:41:56 PM Eastern Daylight Time,

christina_bunny@... writes:

<< Vulvar Specialist In North Carolina

>>

Thanks for the name of the specialist!

Love,

suzette

[Guest guest]

Suzette,

Hear is the specialist listed in NC. The list I have was last updated in

1999 so there may be new ones that I am unaware of. But this would

definatly be a good place to start. They no longer have a vulvar specialist

in MN so I see Dr. on in Wisconsin.

If you need the whole list let me know and I will email it to you privatly.

Bunny

Vulvar Specialist In North Carolina

Charlotte

, Libby MD

Dept of Internal Medicine

Carolinas Medical Center

1000 Blythe Blvd

Charlotte, NC 28203

Fax

Email: eedwards@...

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hey everyone! Just wanted to say thanks for the info

regarding the capsaicin. I'm going in 4 weeks for it.

I had to cut the amount of time on the Estrace short

b/c if I hadn't, I would still be applying the

Capsaicin the day of my wedding. Definitely not

happening. Thanks again. Off to the shore for a

week.... Take care!

Liz