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My Experience with VULVAR VESTIBULITIS / VULVODYNIA.

My Symptoms (past and present):

Tenderness (varying from mild to severe) on Vulvar area
Throbbing Pain in Vulvar Area
Burning Sensation upon Urination 
Frequency/Urgency of Urination
Occasional Burning Sensation from Vulvar Area
Redness/Swelling on Inner Labia and around Bartholin Glands
Extreme Tenderness to Touch in Vestibular area
Pain with Intercourse
Occasional Difficulty Walking

I have put off writing this section until the end. It is a difficult condition to write about.

I want to warn anyone who's squemish in advance that I will be using the correct medical terminology to refer to various parts of anatomy. I have learned to be pretty blunt in describing my situation, so if you are not ready for that, please exit now.

I didn't think I had a problem until I started to menstruate. I was unable to insert a tampon, due to extreme pain. That was when the first red flag went up.

Later, when I went to have my first pelvic examination, I was in excruciating pain. I cried so hard I hyperventilated. I blamed it on the doctor having big hands, and joked about it later to ease my mind.
When I was 21 years old, I attempted sexual intercourse for the first time. Needless to say, it didn't go well. After several attempts I went to Planned Parenthood to see what the problem was. I was told by a nurse practitioner that I was "small". I was also told that I have vaginismus (this condition causes the muscle to involuntarily spasm). I took her at her word.

More time elapsed and I gradually was able to have a normal sex life. I was able to reach the point where intercourse was not painful. I had a wonderful sexual relationship for several months. Then, it struck again.

The pain returned with a vengeance, and along with it came a burning sensation. It hurt to attempt intercourse, it hurt to insert tampons (which I had finally been able to do after years of trying), it burned when I urinated. I went to doctor after doctor after doctor. I was told I had yeast infections, bacterial infections, vaginismus, urethritis, interstitial cystitis, etc. etc. etc. Finally, a nurse practitioner brought up the name Vulvar Vesitibulitis. She mentioned that a lot of my symptoms (painful sex, burning with urination, frequency/urgency of urination, redness and swelling of vestibular area). She referred me to an OB/GYN who specialized in diagnosing this.

Finally, a diagnosis came via a q-tip test. The doctor touched my Bartholin's glands (located on each side of the vestibule) and I went through the roof. I was diagnosed as having severe vulvar vestibulitis with vulvodynia. Then the treatment process began. I have been through many, many types of treatment. Some have worked, some have failed miserably. Please see below for a list of the treatments that have and haven't worked.

SUCCESS for me?! (October 9, 1998)

I have been about 85% pain free for about a month now. I have even been able to have intercourse about 75% pain free several times in the past month.

Why? What did I do? I'm not sure, to be totally honest. But, if I were to name the miracle, I would probably call it Estrace. Using the Estrace nightly has really made a huge difference to me. I apply it nightly to my labia and also inside my vagina near the bartholin glands. I use about the same amount as what you would put of toothpaste on your toothbrush. I did attempt to stop using the Estrace (to see if that really was the reason why I was feeling better)and my burning and pain flared right back up in about two days. I truly believe that Estrace has been a wonder for me.

I had to fight to get a prescription for Estrace. The doctor that diagnosed me with Vulvar Vestibulitis does not believe that Estrace could possibly work. I've heard from other women that their physicians won't prescribe it to them because they are premenopausal. I need to stress that I am only 26 years old and am premenopausal. I am SO GLAD that I insisted on trying the Estrace. It is a non-radical therapy and is not permanently altering to your body's appearance or chemistry.

Vulvar Vestibulitis and/or Vulvodynia are extraordinarily difficult conditions to deal with. They affect every aspect of your life. For women, imagine your worse yeast infection and then multiply it by about 5 and think about living with it each and every day of your life. For men, imagine being unable to have sex because your penis hurts to be touched. Not too fun, right?

Although it is difficult to discuss vulvar vestibulitis and vulvodynia, it is important that us sufferers make our voices be heard. There is not enough research and information out there about this disease. If we are silent, it will go by unnoticed. Please, each of you, think of a way that you can somehow contribute to our cause. Join the Vulvar Pain Foundation or the National Vulvodynia Association. Seek out a support group. Do something.

I understand the emotional impact this condition has, if anybody needs someone to listen, please feel free to email me. I will happy to respond.

Non-Medicinal Treatments That Have Worked for Me:
Vitamin E oil: applied once nightly on outer labia. I use Home Health brand, 9,000 IU. (As of August 1998, I am no longer using Vitamin E oil, as it stopped being effective)
Cotton Pads: I wear only Glad Rags brand cotton pads during my menstrual cycle. These can be ordered over the internet, or purchased at some health food stores.
NO soap on vulvar area: I do not let soap touch my vulvar area. I simply use water. During my cycle, when I'm feeling unclean, I use Aveeno natural colloidal oatmeal bar soap.
White, 100% cotton panties: enough said
NO jeans or tight pants: I wear knit pants all the time now. The seams in jeans and tight pants are very irritating.
NO!! pantyhose: I use knee-hi's.
Rinse after urination: I use a little spray bottle which I carry in my purse.
No panties to bed: night time is a great time to let your vulvar area breathe
Warm sitz baths in Aveeno: VERY soothing
Ice packs: when nothing else works, ice is good for numbing

Medicinal Treatments that Have Worked for Me:
Estrace: used topically on Bartholin's glands, once nightly.
Vicodin: for pain

What HASN'T worked for me:
Temovate: corticosteroid ointment that caused increased burning and irritation