Vulvar Vestibulitis


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The following was posted by the user NewBride on www.newshe.com, and is used with permission.
I am posting this message to help those who are having painful intercourse. You may have a condition known as vulvar vestibulitis. I was married on November 9, 2001. To this date, I have still not been able to consummate my marriage because of horrible pain upon attempted penetration.

After seeing three doctors in my town, I had gotten one diagnosis for vaginismus (spasms of the muscles around the opening to the vagina). I believed I did have this condition, but I still thought it had to be a result of something more serious, because the pain was horribly extant and was not getting better. I knew there had to be something else to it. I knew he didnít have it right.

In late December, I saw a program on the Learning Channel about a woman who had been treated for a condition known as Vulvar Vestibulitis. This woman had been married for ten years, and had barely ever been able to endure sex because the burning pain was so intense. She was diagnosed and treated by Dr. John Steege at the University of North Carolina at Chapel Hill. I did some research on VV on the internet and realized I had all the symptoms associated with this condition.

On February 4, I was diagnosed by Dr. Denniz Zolnoun at Dr. Steege's office. She told me that on a scale of 1-10 ("10" being the worst case of Vulvar Vestibulitis she has ever seen) I was a "9". She told me it could take up to 18 months of treatment for me to be healed. I am treating myself every night with a cotton ball soaked in lidocaine, am taking a nerve block medicine.

I saw Dr. Steege himself last Monday for a follow-up. Finally, GOOD NEWS! There was significant improvement. He said, "You have it corralled!" The "infected" area is much smaller. I still canít stand penetration, but the pain is a lot milder than it was before. Before, it felt like razor blades stabbing my skin. He gave me a topical steroid, and told me to keep taking the nerve block medication and the lidocaine every night. I am confident that Iíll be healed in a matter of months. I was prepared to ask him to evaluate me for surgery if I was not any better after this initial treatment. I am sick of this. I am not willing to wait up to a year to be healed. There is a lot of information about Vulvar Vestibulitis on the web. I keep reading that most gynecologists do not even know this condition exists. The three doctors I saw obviously didnít know about it. I have read at least a dozen accounts of women who have lived with the pain for years and seen dozens of doctors before finally being diagnosed with VV. Some women are able to have sex, but it is extremely painful for them. I have not been able to consummate my marriage yet. Though the past four months have been nightmarish for me, I guess I'm still lucky to have found a diagnosis this early. Whatever your problem, PLEASE donít give up. Donít be embarrassed. The doctors are the ones who should be embarrassed for not being able to diagnose or help you. How utterly pathetic!!! All it took was a simple search on the internet to find what was wrong with me. They werenít willing to do that. They just wanted me out of their offices as soon as possible. I donít trust doctors anymore. I sure as hell wasnít embarrassed - I was pissed off. I ignored the "advice" of three doctors and drove 6 hours out of state to get a FOURTH opinion!!! You have to trust your gut and be willing to do whatever it takes to get help. I never thought it would be this hard. This has been the worst 4 months of my life. I have told just about every female I know about VV. I donít care who it upsets or embarrasses - I would not wish any other woman to go through the utter hell I've endured for the past few months.

I have been on Amitriptyline (85mg) for 8 weeks, and every night I have been soaking a cotton ball in lidocaine (also a prescription) and putting it in the "vestibule" where the pain is, and leaving it there overnight. It is working. The "infected" area is much smaller now. The doc. added a topical steroid to my treatment, which I will put on twice a day. I am confident I will be healed in a matter of weeks, or a just a few months.

Please read these links!!!
Human Body 2000 -- Female Pain During Intercourse
Vulvodynia.com
Artiles on Vulvadynia
Vulvodynia and Vulvar Vestibulitis: Challenges in Diagnosis and Management



Vulvar Vestibulitis is a type of Vulvadynia and should be treatable by any doctor, but unfortunately many simply have never heard of the disease. Women with sexual problems often have to do their own research, or else find a specialist who can treat them. The only doctors I know of who specialize in treating this disease are Drs. John Steege and Denniz Zolnoun at the University of North Carolina at Chapel Hill, and Dr. Trish Shimer in the Austin, Texas area. There are probably more, but there is unfortunately not a way of looking them up. I hope that this Vulvar Vestibulitis page will help other women. If you or someone you know might have these symptoms, please direct them to this page!
This page was created April 5, 2002