11:04 am - 08/13/2006

Vulvar Vestibulitis Syndrome (VVS)

I read through and saw that there was a post about vulvodynia before...but I wanted to share my success story. I feel that I need to share this with every woman out there. This is very important!

To refresh your memory, this is what VVS is: This is what I have: http://www.webmd.com/content/article/78/95690.htm

I want all of you girls to be aware of this. There are thousands of women that have this problem and feel like there is no hope for them...a lot even kill themselves. Most everyone is told that it is in their head, and it isn't the case. THERE IS HOPE.

I just want to share that I have FINALLY had success after FOUR years. The doctors thought it was a yeast infection, then a regular infection, then a yeast infection, then they gave me estrogen cream, I was on Amitriptyline (made me a psycho killer), Nortriptyline (worked really well for everything else BUT the vaginal pain)...and NOTHING worked. Ahhh. Thanks to my best friend and this other girl online named Bethany. Bethany has the same problem as I do and started taking Protriptyline (Vivactil) and she said it was a miracle drug. I didn't think it was working for me for the first month, cause it was HELL. I was going insane. But now I am adjusting very well and seeing results.

Please please please if you have this problem same something to your doctor. DON'T LET THEM DISMISS YOU LIKE THEY DID ME FOR SO LONG!!!! About a year and a half ago I found a new doctor that was very willing to help me, but he wouldn't put me on this medication. So I had to go behind his back and get it from my other doctor. THANK GOD I DID.

I want all of you to be aware of this. Talk to your mother, sister, friends...every woman you know to make sure that they are aware that there is help if they have this problem.

stenodork 13th-Aug-2006 08:14 pm (UTC)
you may want to post this in vvs_community. it would probably inspire down-spirited girls over there.


i'm glad you got better, and i have also had success with the low oxalate diet.
mystiqrhayne 14th-Aug-2006 02:11 am (UTC)
i was waiting to get accepted before i posted it. i'm going to now though. :)
deepbluemermaid 14th-Aug-2006 12:20 am (UTC)
Thanks for your positive story, and for acting to highlight the problem of VVS. I also have VVS, and I agree that information about it needs to be much more widely disseminated.

However, it should be stressed that one woman's wonder drug won't necessarily work on another. I belong to an online support group (one of the many Yahoo groups for vulval pain) and members report a very varied response to the same drugs. Some women have no side effects from a drug, and it works amazingly well; others have awful side effects and no success.

I looked up the drug you mentioned, but apparently it's not available in the UK. I gave up on the tricyclics after taking 3 different types, and feeling like a constipated, always-thirsty zombie for years!!! I've been having more luck with physiotherapy.

I hope you continue to see improvements :)
mystiqrhayne 14th-Aug-2006 02:10 am (UTC)
Oh I do agree with you, one drug may not work for other people...I had to go through two before the third one worked. It took over a month for me to see results, but I finally think I am getting somewhere.

I don't want anyone to give up!! I know there are more options out there...biofeedback, regular therapy, different creams, all of that. I just feel that people should know that the medication is an option and that having your doctor tell you that there is nothing they can do for you is BULL SHIT. I went through so many treatments and tests and everything for four years before a new doctor decided to try the tricyclics. And the only reason I got on the vivactil was because of another girl my best friend happened to find online. My gyno would not put me on it so I had to go to my regular doctor and beg for it. I'm glad I did!!

I am glad that physiotherapy is working for you. It's hard sometimes finding a treatment. I hope that all women with this problem can find some relief. It is an awful soul/relationship killing thing to have to deal with.
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